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dissertation entitled

Grounded Theory Development In Three-Generation
Families With A Young Handicapped Child:
Dealing With Difference

presented by

Mary McDavitt Veit

has been accepted towards fulfillment
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GROIJI‘IDED THEORY DEVELOPMENT-IN THREE-GENERATION FAMILIES
HITH A YOUNG HANDICAPPED CHILD:
DEALING WITH DIFFERENCE

BY

Mary McDavitt Veit

A DISSERTATION

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY

Department of Family and Child Ecology

1987

Copyright by
Mary McDavitt Veit
1987

GROUNDED THEORY DEVELOPMENT IN THREE-GENERATION FAMILIES
WITH A YOUNG HANDICAPPED CHILD:
DEALING WITH DIFFERENCE

BY

Mary MCDavitt Veit

AN ABSTRACT OF A DISSERTATION

Submitted to
Michigan State university
in partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY

Department of Family and Child Ecology

1987

ABSTRACT
GROUND- THEORY DEVELOPMENT IN THREE-GENERATION FAMILIES

WITH A YOUNG HANDICAPPED CHILD:
DEALING WITH DIFFERENCE

BY
Mary McDavitt Veit

Families face many challenges as they identify and
adjust to a handicapping condition in a young family member.
They work to provide the nurturing environment that the
handicapped child needs, even as they seek to discover what
those needs entail. In the process, they also attend to the
needs of other family members. To help young children with
a handicap reach their full potential as human beings, it is
beneficial to involve their families, and get to know them
better.

This research gathered information and developed
grounded theory about what it is like to be part of a family
with a young handicapped child. An ecosystems framework
provided a comprehensive approach for gaining a deeper
understanding of what these families experience.

Two intact families with a handicapped child under age
6, one school-age sibling, and at least one involved
grandparent were studied using ethnographic interviewing of
family members, and participant observation of family
activities. Data were recorded by tape recording and
notetaking, and analyzed by the constant comparative method.

Total time spent with the families was 68 hours.

The theory generated from this research suggests there
are four dimensions of the impact of the handicap on the
familyw emotional, cognitive, physical, and social, and
that at least some families go through a process akin to
acculturation as they adapt to the handicap and its
requirements, and become knowledgeable members of the world
of special needs. As they acculturate, family members move
towards establishing consonance in their lives.

Questions arising from the research engendered
reflections on several issues: the experience of being
handicapped, acceptance of the handicap, support, lingering
anger and grief, and costs of the handicap. The
acculturation theory offers a positive way to view families'
experiences as they adapt to a young family member's
handicap. Suggestions for directions in which the
acculturation theory might be used by researchers, service
providers, families, and members of society complete the

report .

Dedication

To Tommy and Krissy and their very special families who gave

so willingly of their time and energy, and patiently told,

in intimate detail, what their lives were like.

ii

ACKNOWLEDGEMENTS

A dissertation is a group effort, the product of many
months, even years of work. The person writing the
dissertation, the aspiring Ph.D., is supported and assisted
in many ways by the people in her life. Without the
cooperation of her family, who pitch in and cook their own
meals, wash their own dishes, clean their own home, there
wouldn't be time for her to devote to the research and the
writing. Without the support of extended family and
friends, the work would be too lonely, too costly. Without
the guidance and encouragement of her Doctoral Committee,
the work would be too confusing and overwhelming.

To the many people who in their own ways helped me to
get this done:

To Dr. Bea Paolucci, who taught me that everything is,
after all, connected to everything else;

To my Doctoral Committee: Drs. Robert Boger, Joanne
Keith, and Thomas Adams, who provided helpful ideas about
the dissertation, and especially to Dr. Linda Nelson, whose
guidance in this fledgling ethnographic effort was a vital
part of the process;

To the referring agency social worker who helped me to
find the families for the study;

To friends, too numerous to mention, who were my

cheering squad and kept me moving on;

iii

To Bob Keteyian, who was a sounding board for the

development of the theory, and a catalyst for some of my

best ideas;

To my sister, Sue, who put so much into producing the

final manuscript;
To my children, Tony and Cyndi, who put up with moves

across the country and great changes in their lives, and who

cheerfully (more or less) learned to run the house to help

me finish the dissertation; and

To Mom and Dad, who were my biggest fans and most

enthusiastic supporters:

THANK YOU

iv

PREFACE

CHAPTER
1.

TABLE OF CONTENTS

HANDICAPPED CHILDREN AND THEIR FAMILIES:
PLANNING THE RESEARCH

Problem Statement

Conceptual Framework

Purpose Statement

Preparation for the Research
Families With Handicapped Children
The Stress Concept
Family Stress

The Research Questions

METHODOLOGY: LEARNING FROM FAMILIES

Introduction

Selection of Participants
Methods

Plan of Visits

Procedures

Recording Data

Ethical Considerations
Data Analysis

Validity and Reliability
Generalizability

DATA COLLECTION: DESCRIPTION OF THE FAMILIES

The Bradley Family
History of the Handicap
Daily Routine
Dealing with Difference
Questions of the Future
The Carter Family
History of the Handicap
Daily Routine
Dealing with Difference
Questions of the Future
Impressions of The Families
Common Characteristics

Page

viii

NNH
WOUmUlQiaJl—I

27

27
30
33
37
38
41
43
44
50
56

58

58
67
72
78
84
85
94
104
112
115
115
116

ELEMENTS OF THE EMERGING THEORY:
WHAT IS IT LIKE?

Introduction
Environmental Context
Literature
Summary of the Environmental Context
Impact of the Handicap on the Family
Emotional Dimension
Cognitive Dimension
Physical Dimension
Social Dimension
Other Dimensions
Summary of Theory to This Point

INTEGRATION OF THE EMERGING THEORY:
ACCULTURATION AND CONSONANCE

Introduction
A Separate World

Literature

Summary of the Separate World
The Acculturation Process

Parts of the Process

Summary of the Acculturation Process
The Concept of Consonance

Summary of the Concept of Consonance
Additional Literature

Family Strengths

Family Adaptation to Crises

Summary of Family Strengths and

Family Adaptation to Crises

FINAL CONSIDERATIONS: SUMMARY,
REFLECTIONS, AND DIRECTIONS

Summary of the Research
Reflections
Summary of Reflections
Directions
Summary of the Theory
Directions for Researchers
Directions for Service Providers
Directions for Families
Directions for Society
Summary of Directions

vi

121

121
126
126
129
130
130
136
143
149
162
163

165

165
166
166
169
170
172
186
187
194
195
195
198
206

208

208
210
226
226
226
228
232
237
238
240

APPENDICES

Appendix
Appendix
Appendix
Appendix
Appendix
Appendix

MMUOW)

BIBLIOGRAPHY

vii

242
244
246
248
254
257

260

PREFACE

The following essay, written near the end of data
collection activities, responds to the question: What is it
like to be the parent of a young handicapped child? It
reflects messages given during the research by two very
different families about what life with their handicapped

child was like.
On Being the Parent of a Handicapped Child

If I were the parent of a handicapped child, it might
be like this:

I might know the reason for the handicap my child has,
but I might not. Either way, I would have to deal with the
question of why me? Why this child? Why us? And perhaps
with some guilt about what did I do to contribute to this?
Did I cause it in some way (even if I really knew I did not
have much to do with it)?

I would have to live with it, adjust to it, learn what
my child's and family's needs were and try to meet them
while still trying to meet my own needs. I would try to
learn how to ask questions, be assertive, and make tough
decisions. I would learn to work with the doctors and other
professionals. Some might be hostile, some helpful, some
competent, some not so competent. Maybe I would rely on my
spouse to do some or all of these things. I expect I would

be confused sometimes, and angry, frustrated, sad, and

viii

disappointed, but there would also be times of peace and
contentment and even happiness and joy. I would relish
these moments. I would have to do things my child and
family needed even when I was not feeling well or needed
time off for myself. I would hope to have the help of my
spouse in all this, that we would be supporting each other
as well as possible, in whatever ways were needed. I guess,
though, there would be times the stress would get to all of
us, and we would not be as supportive as we might be for
each other. I would have to be especially aware of my
children's needs; they would be under stress too, or they
might simply need some of my time when I was unable to give
it. How could I give them time and attention when I was so
busy and drained? How could I make them feel loved and
important even when life was very busy? They would need me
even when my handicapped child's needs were overwhelming me,
and I was not able to spend much time with them. I guess I
would do what I could and hope for the best. Maybe that
would be one of the many unanswered questions I would have
to live with.

I would teach them, the children and everyone involved,
about my handicapped child's needs, so everyone would know
what needed doing. I would include my other children in
helping to meet the special needs, in a way that says we all
care for each other -- we help your brother or sister this
way, but we care for your special needs too. That's what

parents do for their children, that's what family members do

ix

for each other. I would learn to read my children, to know
their moods and how they express themselves. I would
include them as much as I could in decisions affecting them.
I would listen especially well to my handicapped child,
however the child may communicate, to figure out what is
best to meet the needs.

I would know that I knew more about my child than the
professionals consulting with us, and I would work hard at
getting what my child needs. I would try not to be too
obnoxious about it, do it pleasantly, try to get the
professionals on my side, but I would be as assertive as I
needed to be. Since I have to speak for my child, I would
be the best advocate I could. Maybe I would be called
”pushy,” or "difficult," or "a wonderful parent who fights
for her child." The labels might bother me sometimes,
whether complimentary or not, especially when I felt they
weren't very accurate. I wouldn't want to be "pushy" or
”difficult" or even a "wonderful parent," I would just want
to get what my child needs.

Through all of this, I would try to treat my
handicapped child and my family as normally as possible,
focusing on the child and the family and not the handicap.
I would try to do the family things we like to do, and to
get my child to enjoyable activities as well as whatever
therapies were needed. I would try not to worry too much
about the cost of all these things, though I know I would

because I don't know how I would pay for it all.

My extended family might be supportive and involved, or
maybe not. Some relatives might find the handicap difficult
to deal with and opt for minimal contacts, or no contacts.
Some might just not be involved with me and my family
anyway, due to a falling out or drifting away over the
years, something that has nothing to do with my child's
handicap. Some may be so busy with their own and their
family's needs that they just would not be there.

But others may choose to be very involved and helpful,
actually caring for my child in many ways, providing
transportation to therapy sessions, learning the routines
that were needed and how to handle any emergencies which may
arise. They might babysit occasionally, provide financial
support, drive us places, do the laundry, or care for the
other children when the handicapped child was in the
hospital. Still others might offer a different kind of
support, not much actually physically being involved,
perhaps due to distance, but asking about the child,
delighting in every small accomplishment —- each step, no
matter how tiny, would be a cause for rejoicing in a child
whom we thought we would lose, or who we thought would never
walk, never talk. Relatives would help out, I guess, in
many different ways, perhaps in ways similar to the ways
they would more or less be involved if there were no
handicap in the family.

As the parent of a handicapped child, I might have to

make frequent trips to the hospital. Emergencies might

xi

become part of the regular routine. While I would never get
used to them, they might become painfully familiar, and
truly a routine. I would be on a first—name basis with some
of the Emergency Room personnel; I would know what to say,
whom to talk to, how to describe what my child's needs were,
and be able to tell what happened the last time we were in.
I would get to recognize the times when my child felt good
and things were going all right, and the times things were
not so good, and trouble might be expected. Sometimes I
would be right and sometimes not, and there would still be
surprises, and maybe pain, and difficulties accepting all
that I had to do. I don't know how I would do it, but I
would for as long as I could because this child with the
handicap, whatever the handicap, would still be my‘child.
What I would do would not be a sacrifice. It's what I would
do because I loved the child so much.

Some of the pain would be for me and my family and all
we had to go through, but most of it would be for having to
see my child struggle to do the things that most children do
without thinking, without problems. My heart would ache
when I would see another child doing something so easily, or
I might feel enraged when I see other parents do something
that suggested to me that they didn't appreciate the healthy
child they had. I would wonder sometimes about the child
who would have been if not for the handicap.

Sometimes people might tell me my child was lucky to

have me for a parent, but I would say I was the lucky one.

Of course I would rather have a healthy, whole child who
could laugh and walk and talk and grow and think like other
children. Of course I would rather not have to run to
therapies and doctors' appointments and the hospital
Emergency Room. Of course I would rather not have to deal
with all this, but it would simply become part of the child
and what the child needed, a wonderful child whom I loved.
I would wonder about the future, and how my child would do,
but I wouldn't dwell on that too much. Living one day at a
time would be the only thing to do, except when I would have
to live minute by minute. It wouldn't be easy, but that's
how I think it would be.

xiii

Chapter 1. HANDICAPPED CHILDREN AND THEIR FAMILIES:
PLANNING THE RESEARCH

Problem Statement

Being a parent is about caring and nurturing, teaching
and learning, about living with and hoping for, worrying
about and crying over, planning for and guiding through,
holding on and letting go... all these verbs and perhaps a
few more. Being a parent of a handicapped child is about
the same verbs but some of them may be harder; the feeling
verbs may be felt more intensely, the doing verbs may be
harder to accomplish.

Parents who care about their children invest energy
into their upbringing, taking care to get to know their
children's personalities, their likes and dislikes, their
strengths and needs. They plan activities with their
children and focus their energies into areas which fit their
children's needs and interests.

Handicapped children are children first. In order to
grow, they require love, patience, and understanding of who
they are and what they need. They need caring, nurturing,
appreciation of what they can accomplish, and support for
their efforts, as all children do. They need nutritious
food, adequate clothes and shelter, and consistent
caregivers to support growth and development within a
secure, predictable environment. Within this context, they

also need whatever specific therapies or accommodations are

necessary to make the handicap less of a hindrance, to help
them compensate for the things they cannot do so they may
feel valued and loved.

Children do not grow up by themselves, but in the
environment provided by their families. In our efforts to
understand handicapped children, it is helpful to understand
their families. Parents of handicapped children encounter
many demands as they face the challenge of loving and
raising a handicapped child. Do we really know what these
demands entail? Do we really know what their lives, and the
lives of the child's siblings and grandparents, are like?

Do we know what the family members' stresses are? Do we
know what their daily lives consist of, or how they manage?
Do we know what their hopes are, or how they accommodate the
reality of a child who is not whole and perfect? Do we know
how they take the handicap and try to fit its requirements
into their lives? If we don't know this, how can we ever
hope to reach them and work effectively with and for them?

To help young children with a handicap reach their full
potential as human beings, it is beneficial to involve their
families, getting to know the families better, and learning
from them what it is like to be part of a family with a
young handicapped child.

Handicaps in a young child may place enormous demands
on the family, whether these are mild, moderate, or severe
handicaps. Such families may need many kinds of help,

offered in acceptable ways. To understand these needs best,

we can go to the families and ask them what their world is
like, what stresses or demands the handicap places on them,
and how they are or are not getting their needs met.
Research on how families deal with a young handicapped
child's special needs which focuses on the involvement of
the family as a whole is an essential part of this effort at

understanding.
Conceptual Framework

An ecosystems framework is helpful to comprehend this
segment of family life in a holistic fashion, to learn how
the family's experiences with their handicapped child fit
into the context of their lives. An ecosystems perspective
looks at the family as it exists within its surrounding
environment (Andrews, Bubolz and Paolucci, 1980; Bubolz,
Eicher and Sontag, 1979). The family is defined as "a
bonded unit of interacting and interdependent persons who
have some common goals and resources, and for part of their
life cycle, at least, share living space" (Andrews, Bubolz,
and Paolucci, 1980: 32). Andrews et a1. (1980) described
three interacting components of the family's environment:
the natural environment; the human constructed environment,
i.e., modifications made in the natural environment by
humans; and the human behavioral environment, i.e., social,
psychological, and behavioral aspects of living with other

human beings.

The ecosystems approach considers how the family
affects and is affected by its environment in a continuously
developing and mutually adaptive cycle of reciprocal
interaction. Input from the environment is transformed by
the family into output which is acted upon by the
environment and feedback to the family. In this manner, the
family and its members interact with their near and remote
environments, actively constructing and modifying the

environment and changing over time in a dynamic fashion.
Purpose Statement

The purposes of this research were two-fold: (a) to
gain an indepth understanding of the needs of families as
they cope with the experience of having a young handicapped
member, and (b) to generate grounded theory about families
and the demands placed on them in this situation.

Use of ethnographic methodology allowed an indepth view
of family life with a handicapped child. The research
looked at the impact of a handicap on family members' lives;
at efforts of coping, adjusting, and working to meet the
needs of family members; at people and services available to
help; and at roles various people play in a handicapped
child's care and treatment. It explored feelings, family
strengths, and the ways family members and friends are
involved.

Discovering from family members themselves what it is

like to be part of a family with a young handicapped child

helped to develop theory about how the handicap and its
requirements are experienced by family members in this
situation, and how the family as a whole might respond to
the situation and resulting stresses. Others involved with
the study families at the time of the research provided a

supplementary view of each family situation.
Preparation for the Research

As one prepares for ethnographic research, it is
important to plan the approach carefully, reviewing one's
knowledge and ideas about the topic and related areas as
well as conducting a preliminary review of appropriate
literature. By doing so, the ethnographer can identify
major themes of interest and develop questions to guide the
research. These activities provide the researcher with a
starting point and a general direction for research
activities.

Contrary to the type of literature review conducted by
the researcher whose aim is to develop hypotheses for
testing, the development of grounded theory benefits from a
brief initial review of relevant literature and then a more
thorough review after the data collection. In this manner,
the researcher may keep an open mind as to what will emerge
from the data collection with the families, and later, the
literature may serve as an additional rich source of data to
continue to develop and refine the theory which has emerged

from the data collection. With this research, this blending

of the ethnographer's ideas and initial review of literature
focused on the following topics: families with handicapped

children, the stress concept, and family stress.

Families With.Handicapped Children

Introduction. Families awaiting the birth of a baby
usually anticipate the changes the coming child will bring.
During this anticipatory period, while the parents may be
aware of and even a little concerned about whether the baby
will be healthy, most do not picture themselves bearing a
child who is handicapped. Parents dream of and plan for the
coming child and breathe a sigh of relief when the child is
born healthy.

What happens, then, with a child who is not born
healthy? A premature infant, tiny and vulnerable, generally
requires skilled nursing care and specialized equipment to
support the fight to overcome the problems of babies born
too soon. A baby with a congenital illness or disorder also
needs special medical services, to identify and treat the
problems and to help the baby progress sufficiently to be
able to be cared for at home.

Literature reviewed on ill and premature babies
suggested that the baby who must remain hospitalized at
birth presents a severe stressor to the parents. At a time
when they had expected to be holding and cuddling and
getting to know their newest family member, parents are

separated from their infant because of the need for

intensive care. This difficult situation constitutes a
crisis for the parents (Caplan, 1960; Caplan, Mason, and
Kaplan, 1965; Klaus and Kennell, 1982). The degree of
crisis and the way it is handled by the parents depend on
factors unique to the individuals involved and the specifics
of the situation itself (Johnson, 1979; Kaplan and Mason,
1960). Siblings are also affected (Goldson, 1981; Nance,
1982; Trause and Irvin, 1982; Trevino, 1979), as are members
of the extended family (Nance, 1982).

Families of infants who are ill or clearly handicapped
must adjust to the fact of their baby's medical needs,
perhaps consider the possibility of the baby's death, and
prepare to deal with a handicapped child.

In other cases, the handicap is either not evident at
birth, or seems to be corrected before leaving the hospital.
The child appears to be normal and healthy and goes home on
schedule, or after a brief hospital stay; then, later,
problems appear. Alternately, a handicap may develop as the
result of an accident after birth. The parents take home a
healthy child, who later becomes handicapped due to some
unforeseen event.

Whatever the source of the handicapping condition,
handicaps may not present themselves clearly for years.
Development is a continuous, unfolding process through which
children go at their own pace and in their own way, so it
may be hard to distinguish what is developmental

idiosyncrasy and what is abnormality. Fewell and Gelb

(1983) noted:

Parents may suspect that something is different about

their child, but the subtle clues appear singly and can

always be explained as "immaturity," "takes after his

Daddy," "just ornery," "lazy," while the best course of

action seems to be "wait and see." (p. 191)

'In these cases, it may take the family a long time to
get the child's problems diagnosed, and to come to
understand the nature of the problem and what it will mean
to their child's development and their plans for the child.
Even severe handicaps may not be evident for many months as
the child seems to be developing normally, if somewhat
slowly.

Some authors have discussed their personal experiences
with this situation. Featherstone (1980) talked of the
"inner dialogue" (p. 216) parents go through, trying to
decide if the child has a problem. Doubts continue even as
the parents try to convince themselves that the child is
normal, just developing at an individual pace. In this
vein, Spradley and Spradley (1978) described efforts to
identify a young child's hearing problem: "Like detectives,
we worked overtime, trying to catch the truth about Lynn.
The head banging and eye rolling continued, as did her game
of 'Now I hear you, now I don't.... Round and round we went"
(p. 25).

An undiagnosed subtle handicap may make the child
different enough to have continuing learning, social,

physical, or psychological problems, but normal-appearing

enough to elude diagnosis and the relief of something

definite with which to work. A normal-appearing child with
an undiagnosed, untreated handicap may also create problems
for parents trying to decide how to understand and respond
to the child's needs. These parents may not have support
for dealing with the child's problems such as may be
available from relatives, medical personnel, and the
community in general for parents of more clearly handicapped
children.

In some ways, then, early discovery of a handicap,
devastating though it may be, is helpful to the family in
its attempts to deal with the handicap. Information may be
sought, treatment started early, family and community
support systems developed, and the focus of family energies
moved from identification of the handicap and what it means
for the family to resolution of the difficulties the
handicap brings.

Family Regponse. The literature suggested that parents
with a handicapped child experience powerful emotions as
they face the reality of the handicap. Featherstone (1980)
described parents as "swamped by their own turbulent
emotions, by changes in their vision of the world and their
own future" (p. 52).

Emotions associated with the grief process —- feelings
of anger, loss, failure, depression, denial, resentment, and
guilt -- are often mentioned in the literature. Kupfer
(1982), for example, who has written articulately and

candidly about what is was like to have a profoundly

10

handicapped child, cited "anger, grief and guilt" as her
"familiar triumvirate" (p. 149).

With the discovery of a handicap in their child,
parents come to realize that this is not the child and these
are not the circumstances for which they were prepared.
Before birth, parents ”imagine what the child will be like,
expect to love and be loved by the child, and anticipate
sharing the joys of the events of growth and development"
(Young, 1977: 38). With a handicapped child, things can
never happen the way they imagined. Preparation for a new
child during pregnancy "normally involves the wish for a
perfect child and the fear of a damaged child" (Solnit and
Stark, 1961: 524). In adjusting to the idea that the child
who has been born is not the imagined, perfect child, the
parents need to withdraw from the child before being able to
accept the loss and recognize the reality.

Benfield, Lieb, and Reuter (1976), in their research
with parents of ill newborns needing intensive care found
that most of the 101 mother-father pairs in the study
reported grief reactions similar to those parents who were
mourning the actual (not just anticipated) loss of their
child; the levels of anticipatory grief were not associated
with the severity of the infant's condition. Trout (1983),
in a clinical study of families whose children required
neonatal intensive care, observed this early parental
reaction:

The perfect child fantasized by both parents,
independently, sometimes unconsciously, throughout the

11

pregnancy, has died before he or she could ever come

fully to life. For many parents, this is not a quaint

psychological phenomenon, but a very real death. The
loss is made worse by the fact that the deceased cannot
be seen and held, then concretely released and
grieved.... The feelings of grief are complicated by
the very real demands of the new baby, and by the guilt
that often accompanies the yearnings for the lost
perfect child while the living and defective child

beckons. (p. 339)

Solnit and Stark (1961), discussing parental response
to the birth of a defective child, agreed:

The simultaneous loss of one child -- the expected and

narcissistically invested one -- and adaptation to the

deviant or defective child makes a demand that is very
likely to be overwhelming. There is not time for
working through the loss of a desired child before
there is the demand to invest the new and handicapped

child as a love object. (p. 526)

Trout (1983) also noted that the parents may wonder why
this has happened, especially if the child's doctors cannot
give a specific cause; they may blame themselves and each
other.

Siblings. The literature on the impact of the handicap
on families has dealt largely with parents, though some
authors do recognize that the handicapped child's siblings
are also affected by the events and feelings around the
handicap and what it means to the family. Featherstone
(1980) suggested that children's feelings parallel those of
the adults in the family: "Our children navigate the same
choppy waters, although their guilt and sadness look
different from ours and find different sorts of expression"
(pp. 173-174).

Discussing what happens with siblings, Trout (1983)

asserted that "it is important to note that siblings of the

 

12

sick.or handicapped child are also deeply affected" (p.
344), and described these sibling responses: behavior
problems, resentment, physiCal aggression, exaggerated
responses to the baby, and "guilt about having caused the
illness or handicap in the first place" (p. 345).
Collins-Moore (1986) suggested that children's reactions
”will be affected by their parents' reactions, the quality
of the family relationships, and their developmental level"
(p. 48). Trevino (1979) considered variables which affect
children's reactions to a handicapped child, including the
number of normal siblings, the age and gender of the
siblings, and the parents' reactions to the handicap.
On a positive note, Simeonsson and Bailey (1986)
contended:
Siblings of handicapped children are often not
unilaterally characterized by maladjustment, but do in
fact have positive, constructive reactions to the
presence of a disabled or handicapped brother or
sister. The growing literature on siblings as
behavioral change agents is encouraging in that it not
only demonstrates that siblings can take an active role
in the teaching/training of handicapped children but
also that secondary gains are obtained in the sense of
competence and self worth provided for the sibling. (p.
74)
With the handicapped child, there is a difference in
the family (Featherstone, 1980). These families may be
required to function under conditions requiring enormous

amounts of energy. This expenditure of energy suggests a

continuing stress for families in dealing with the handicap.

13

The Stress Concept

Introduction. The field of stress research focuses on
the many and varied aspect of stress experienced by human
beings. The stress concept has been used in many different
ways. In a discussion of the history and status of the
stress concept, Selye (1982), noted that "remarkably few
people define the concept in the same way or even bother to
attempt a clear-cut definition" (p. 7). This is true with
the general public and is often observed in stress research.
This lack of agreement of how to define the concept, when
linked with lack of a clear definition of the term as it is
used in specific situations, lends an air of confusion to
the field. Selye (1976) himself inadvertently added to the
linguistic confusion when he developed the stress concept.
He described this problem, comparing his concept of stress
to the concept of strain as it is used in physics, stating:

Actually I should have called my phenomenon the "strain

reaction” and that which causes it "stress," which

would parallel the use of these terms in physics.

However, by the time this came to my attention,

”biologic stress" in my sense of the word was so

generally accepted in various languages that I could

' not have redefined it. Hence, I was forced to create a
neologism and introduce the word stressor, for the
causative agent, into the English language, retaining
stress for the resulting condition.

Although these terms are now generally accepted in

biology, occasional confusions still arise and hence I

would like to state here clearly that the concepts of

stress and strain in physics correspond, respectively,
to those of stressor and stress in biology and

medicine. (pp. 50-51)

Selye (1976) defined stress as the "nonspecific

response of the body to any demand” (p. 1). He developed

14

this concept while trying to understand the syndrome of just
feeling sick. His model of the General Adaptation Syndrome
(G.A.S.) presented the pathways of stress in the body as the
individual responds to a stressor, which is perceived by the
brain after being filtered through certain conditioning
factors unique to the individual.

A simplified explanation of how this occurs is that the
stressor, modified by conditioning factors, act on the brain
which initiates a generalized response, sending messages to
body organs via "the two great coordinating systems" (Selye,
1976: 152), that is, the endocrine and nervous systems. A
feedback loop brings messages about specific physical and
behavioral changes back to the brain, which also receives
information about the continued presence/absence of the
original stressor. In this manner, the brain monitors the
stress response.

Selye thought that the stress response originated in
human history when man was confronted by a life-or-death
situation (e.g., a saber-toothed tiger), and his body had to
gear up for fight or flight. Although this response is not
very useful for modern man —- in many situations neither
fighting nor fleeing is appropriate -- Selye believed that
the physiological body still responds as if the stressor
- required this.

Stress, in and of itself, is neither good nor bad.
Within the general stress concept, Selye (1976)

differentiated "distress" (from negative stimuli) and

15

"eustress" (from positive stimuli):

During both eustress and distress the body undergoes

virtually the same nonspecific responses to the various

positive or negative stimuli acting upon it. However,
the fact that eustress causes much less damage than

distress graphically demonstrates that is is "how you
take it” that determines, ultimately, whether one can

adapt successfully to change. (p. 74)

This idea that ”how you take it" plays a key role in
adaptation to stress suggests the need to recognize a
psychological component of stressful situations. A demand,
or stressor, according to Selye (1982), need not be just
physical in nature; he also listed "emotions" and "thoughts"
(p. 14) as potential stressors. "In fact," he went on to
say, "psychological arousal is one of the most frequent
activators” (p. 14) of the stress syndrome.

Holroyd and Lazarus (1982), working on a psychological
conception of stress, felt that Selye's definition of stress
with its focus on "physiological mobilization" (p. 22) did
not go far enough. These authors underscored the importance
of the psychological processes of stress, stating: "The
success of our efforts to understand the impact of stress on
human adaptation will be heavily dependent on the success
with which we are able to conceptualize these mediating
psychological processes" (p. 22).

Holroyd and Lazarus (1982) suggested that when the
individual perceives a potential stressor, two processes
occur: (a) appraisal, which is an "evaluative process that

imbues a situational encounter with meaning for the person"

(p. 22), and (b) coping which involves attempts to deal with

16

internal and external demands and any conflicts between
them. A ”dynamic constellation of thoughts and acts...
constitute the coping process” (p. 24). These interacting
processes, these authors believed, "are crucial to the
stress reaction. Psychological stress requires a judgment
that environmental and/or internal demands tax or exceed the
individual's resources for managing them" (p. 22).

These words echoed Mikhail's (1981) statement that:

Not any demand is stressful. Demands that evoke stress

are only those which tax the organism's capability and

which appear to be of value to the individual. The

extent of stress depends largely on the individual's
evaluation of the consequences of unfulfilled demands.

(p. 11)

Mikhail (1981) looked at physiological and
psychological conceptions of stress, and noted that "in
contrast to Selye's biologic stress, the emphasis of
psychological stress is on the input side, in particular, on
the kind of situation and individual interaction that evokes
a stress state" (p. 13). Mikhail's (1981) "psycho-
physiological conception" (p. 9) of stress offered the
following definition of stress:

Stress is a state which arises from an actual or

perceived demand-capability imbalance in the organism's

vital adjustment actions and which is partly manifested

by a nonspecific response. (p. 14)

Individuality. Much of stress theory revolves around
how individuals response to stressors. Mikhail (1981) noted
that:

In the fifties, it could be seen that three important
aspects of stress were identified.

17
1. Individuals differ in their reactivity to
stress....
2. Stress is determined by the perception of the
stressful situation rather than by the situation
itself....

3. The extent of stress depends partly on the
capability of the individual to cope. (pp. 12-13)

In looking at individual differences, Holroyd and
Lazarus (1982) cautioned that individual differences on
static variables alone are not sufficient to explain
individual responses to stressors. Considering "what people
are actually thinking and doing during a stressful
encounter” (p. 24) is of primary importance in understanding
stress responses.

In discussing individuality of response, Elkind (1981)
noted that how children react to chronic stress depends on
factors such as "perception of the stress situation, the
amount of stress he or she is under, and the availability of
effective coping mechanisms" (p. 165). What looks,
objectively, like a stressful, bothersome situation for one
child might be viewed as non-stressful for another.
Individual perception of the stressor and of the resources
available for coping affects the degree of stress
experienced, indeed whether any stress at all is
experienced. There will be no stress (i.e., no response) if
no demand is perceived.

Since stress and coping are a function of perception
and individuality, consideration of how individuals differ

in these factors may be helpful in understanding how a given

 

18

stressor is problematic for one individual and not for
another. Individuals differ in:

1. Cognitive ability and skills: People have varying
abilities to perceive an event as a stressor, or to perceive
ways an available resource might be useful in managing a
potential or perceived stressor;

2. Level of cognitive development: Children differ
from adults in the way they think and view the world; their
life's stressors will not be perceived in the same manner as
an adult might perceive them;

3. Perceptual style: Melson (1980) discussed five
ways individuals may differ in the amount and type of
perceptual stimulation they consider optimal for taking in
information about the world:

(a) receptor preference: preferring sensory
input via the visual, auditory or kinesthetic mode;

(b) reducing or augmenting incoming stimuli:
differences in how varying amount of stimuli are handled;

(c) leveler or sharpener of incoming stimuli:
differences in how variations in incoming stimuli are
maximized or minimized;

(d) impulsive or reflective styles: how much
information is taken in before a judgment is made; and

(e) field-dependence or independence: paying more
attention to internal or external cues;

4. Temperament: To describe individual temperament,

which is closely related to perceptual style, Thomas, Chess,

 

19

and Birch (1968) have identified nine categories of
reactivity to stimuli:

(a) activity level: high to low

(b) rythmicity: regularity/irregularity of
biological functions

(c) approach/withdrawal: initial reaction to new
things

(d) adaptability: ease/difficulty of adjusting
over time

(e) intensity of reaction: amount of energy used
in reacting to stimuli

(f) threshold of response: level of stimulation
needed to get a response

(g) quality of mood: generally pleasant and
joyful, or generally sour and unpleasant

(h) distractability: ease/difficulty of changing
an individual's ongoing behavior

(1) attention span and persistence: length of
time the individual stays with a task;

5. Levels and styles of coping: Individuals who have
adequate resources and who perceive stressors as challenging
tend to cope with life's stressors better than those who
have few resources and who perceive stressors as obstacles.
Individual resources may include: physical health,
emotional maturity, good interpersonal skills, good
cognitive skills, problem-solving ability, feelings of

self-confidence, financial security, and the presence of an

20

adequate social support network. Melson (1980) stated that
"studies of varieties of stress situations have repeatedly
found that among those exposed to the severest stresses, a
minority appear relatively unaffected by the severity of
their life experiences" (p. 242). She described these
people as "buffered," "insulated,” "robust," and as having
"resistance resources” (p. 243).

Individuals, then, will differ in the way they perceive
the world, in the way they approach problematic situations,
and in the things they consider important in handling the
stressors in their lives. A severe problem can be created
in a family as two or more family members cope with a common
stressor; an unrecognized mismatch in individual coping
strategies, based on differing needs and perceptions, could
provide an additional stress and increase the amount of

stress experienced by family members.

Family Stress

Introduction. Family stress research looks at families
and how they handle situations requiring change in their
lives. Investigators have tried to describe and define such
concepts as stressor events (normative or not), family
resources for coping (financial, social, emotional,
intellectual), family perception of the stressor and of
their resources, and family crises (McCubbin, Joy, Cauble,

Comeau, Patterson, and Needle, 1980).

 

 

21

An early researcher, Hill (1965) developed what has
become a classic framework for looking at family stress, the
ABCX model: "A (the event) -- interacting with B (the
family's crisis-meeting resources) -— interacting with C
(the definition the family makes of the event) -- produces X
(the crisis)" (p. 36). In this model, the family is seen as
an interacting (within itself) and transacting (with the
external world) organization. Factor A is the stressor
event itself, which impacts on the family unit; B is
resources which are perceived to be available to deal with
the stressor; factor C brings into play the meaning of the
stressor and its effect. These three factors, in an
interactive process, produce the crisis, X.

The second part of Hill's framework focuses on the
post-crisis adjustment. He noted that adjustment "varies
from family to family and from crisis to crisis" (Hill,
1965: 45), but that in general it involves a period of
disorganization, a recovery, and some level of
reorganization.

Building further on the ABCX model, McCubbin and
Patterson (1981) developed the Double ABCX model which looks
closely at the complex interaction of factors in the
family's response to stressors. Viewing family crisis as an
imbalance in either member-family or family-community
relationships, McCubbin and Patterson's longitudinal model
adds post-crisis variables to describe the course of family

adaptation to a crisis as it occurs over time.

22

In this model, the pre-crisis variables -- a, the
stressor, b, existing resources, and c, family perception of
a, as in Hill's framework, lead to x, the crisis. This
crisis occurs within the context of the family's life and
general functioning; it is not an isolated event.

The interacting post-crisis variables influence the
family's coping efforts and lead to good or poor adaptation.
These variables include:

aA, the pile-up of stressors, such as developmental or
other changes of the individual, the family, or of society;

b8, the family's existing or newly developed resources,
psychological, social, and material, which are either
available or able to be developed or attained by the family
or its members to help manage the crisis; and

cc, perception of the crisis, additional stressors and
available resources as defined by the family members. The
situation can be very complex if family members have
differing perceptions of the stressful events and the best
way to handle them.

Individuality of Family Response. As in the case with

 

the stress response in individuals, families tend to react
to stressors in unique ways. That is, two families of
similar composition and background, with apparently similar
resources, may experience varying levels of stress and will
adapt differently to a similar stressor. Individuals in a
family may also exhibit a response unique from other family

members and other individuals in similar families.

23

Influence of common family values, ethnic and religious
beliefs, and other family characteristics may modify
individual perception and family consensus about the nature
Of the stressor and alter the impact of the stressor. For
example, social meaning of the stressor and of appropriate
coping responses may help family members weather the
situation by helping them make sense of it all, and by
suggesting ways to handle the situation.

In considering the individuality of families' responses
to crises, Lipman-Blumen (1975) suggested that families will
respond differentially to crises according to whether the
event is:

1. An internal or external problem: Does it strike at
their internal organization or is it outside of them?

2. Pervasive or bounded: Does its impact spread to
affect their whole lives, or can it be limited within
certain boundaries?

3. Of gradual or precipitate onset: Was there time to
prepare for the event, or did it just suddenly happen?

4. Intense or mild: How severe is the crisis?

5. Transitory or chronic: Is the crisis seen as a
temporary problem, or a long-term one?

6. Random or expected: Was the stressor totally
unexpected, or was there some degree of predictability about
it?

7. Generated naturally or artificially: Has the
crisis arisen from natural sources or "through technological

or other human-made effects" (p. 890)?

24

8. Related to scarcity or surplus: Does the crisis
represent too much or too little of needed commodities?

9. Perceived to be solvable or unsolvable: Is this
something the family can do something about, or is it
unsolvable?

10. Of what substantive content: Is it primarily in
the ”political, economic, moral, social, religious, health,
or sexual domains" (p. 890)?~

Lipman-Blumen (1975) also described aspects of any
social system which will affect its response to crisis.
These aspects include: (a) level of organization, (b)
degree of adaptability, (c) availability of resources, (d)
past experience with similar situations, (e) effectiveness
in resolving similar crises, (f) the scope and intricacy of
pre-crisis roles, and (9) amount of time since the last
crisis and the essence of that crisis.

Melson (1980) noted that, like individuals, "certain
family systems may be more vulnerable to stress than others"
(p. 243). She cited adaptability and cohesiveness as
important characteristics to consider as regards
vulnerability. "Adaptability refers to the system's ability
to change its functioning in response to new demands without
undue strife or psychological discomfort, while cohesiveness
refers to the level of organization of the system" (p. 243).

Families use many different resources to manage
stressors in their lives. In the 1970's investigators

looked at a variety of family resources including the

25

following: (a) family members' personal resources (money,
health, education, cognitive abilities, and psychological
characteristics); (b) family system resources (adaptability,
cohesiveness, internal organization, decision-making and
problem-solving patterns); (c) social support networks (kin,
friends, neighbors, social service organizations, and
self-help groups); and (d) coping mechanisms of families as
pro-active and not just reactive adaptors (McCubbin, et al.,
1980). Since individuals tend to perceive the stressor and
resources in their own manner, the family response to the
stressor and the use of resources is some combination of

individual and interactional responses.
The Research Questions

Using the foregoing information on the topics of
families with handicapped children, the stress concept, and
family stress, the following questions were developed as a
guide for this research:

1. What is the impact on the family (parents,
grandparents, siblings) of having the handicapped child as a
family member? What is it like for the handicapped child to
be a member of this family?

2. What changes do family members perceive as having
occurred in their lives as a result of the child's handicap?
3. What stresses do the family members perceive in

their lives? How are these stresses expressed by family

members? Are there any benefits to having the handicap?

26

4. What do the family members identify as strengths
they have to cope with their life stresses?

5. What do the child, the parents, the grandparents,
and the siblings perceive as helpful or not as they interact
with the services available to them? How good a ”fit” of

needs and services is there?

Chapter 2. METHODOLOGY: LEARNING FROM FAMILIES
Introduction

Since the goal of this research was to understand, from
a family's perspective, what it is like to be part of a
family with a young handicapped member, ethnographic
methodology served to generate grounded theory.

Ethnographic methodology uses a variety of techniques to
gather empirical data about what people do, what people
know, and what objects people make and use. Using this
information about behavior, knowledge, and objects, the
ethnographer develops a theory about the family's culture
and how they ”interpret the flow of events in their lives"
(Agar, 1980: 194).

Ethnographic research is a form of qualitative
methodology; it differs from quantitative research in a
number of ways. Quantitative research begins with a theory
and several hypotheses; information is collected using
standardized tools, from randomly chosen subjects, then is
analyzed statistically to offer evidence which may either
confirm or deny the original hypotheses. Ethnographers,
however, begin their research with broad research questions
and as few preconceived notions as possible of what they
will find. They begin with no hypotheses to prove or theses
to confirm, but with an openness to what is there. They
rely on their open eyes and ears, a sensitivity to people, a

ready tape recorder, and a pen and notebook to collect their

27

28

data. The ethnographer may use some sort of standardized
tool, if it seems indicated, but the major data collection
instrument is the "self," an interested human being who is
trained to be a skilled listener and is willing to spend
time and energy to learn from informants. The result of
this research is a description of the culture, and the
development of theory grounded in the data.

In ethnographic research, unlike quantitative methods
where data are used to confirm and verify existing theory,
theory emerges from the data. Ethnographic research catches
people as they are, doing what they do, with the things they
do it with. No area of life is seen as irrelevant to the
emerging theory, especially if it keeps surfacing in
different ways during data collection. Differing
perspectives on the same topic, gained from different
techniques or from several informants are useful; these
"slices of data" (Glaser and Strauss, 1967: 65) enrich the
emerging theory.

The ethnographer invites people to tell about their
world in a way that respects their way of telling, indeed
reflects it back to them and encourages them to elaborate in
their own words. Data collection efforts move from being
open to whatever comes up, to being gently directive, to
becoming more focused as time goes on. The approach is
somewhat like painting a picture, whereby one starts with
broad sweeps of the brush, and ends up with detail. It aims
for a mapping of the family's lives and activities; first a

general map, then filling in the finer points.

29

As the theory emerges, it suggests certain areas to be
looked at more closely; the emerging theory shapes and
focuses data collection. Since this methodology allows for
whatever is there to come out and be looked at, the
researcher may end up studying something quite different
from what was originally planned. Indeed, "one of the
challenging features of doing ethnography is that one cannot
tell where it will lead ahead of time" (Spradley, 1980:
122). The ethnographer checks with informants about
observations and interpretations and so has a chance to
correct misinformation and misinterpretations. In this
manner, the theory emerges from the data, and is corrected
and confirmed as data are collected.

Spradley (1980: 8-9) notes that ethnography shares
some assumptions with the theory of symbolic interactionism,
which looks at human behavior in the context of the meanings
people have for objects and events they encounter. The
shared premises are three:

1. People act towards things in their lives, such as
objects, places, and the activities of others, according to
the meanings they have for these things;

2. These meanings come from the processes of social
interaction that people have with other people; and

3. Meanings are dealt with and changed by the
perceiving person through a process of interpretation.
People interpret and evaluate situations and respond

accordingly.

30

Guided by the need to learn from people how they
perceive, interpret, and respond to events and people in
their lives, the ethnographer seeks to discover patterns,
delineate categories and properties of categories, and build
theory based on empirical data. Interested in the
”interpretations of reality as seen by the group members"
(Agar, 1980: 195), the ethnographer attempts to discover by
means of carefully planned techniques what the participants'
reality entails, considers how this may be understood in the
context of the participants' lives, and then composes an
ethnography, or report, to clearly describe this reality.
The ethnographer writes the ethnographic report and
discusses the theory which has emerged from the research, to
share the informants' culture with others unfamiliar with
it, in a way that truly reflects the informants'
understanding of their lives and culture.

Because of its rich, experiential base and its facility
for helping the ethnographer ask the right questions (guided
by the emerging data and not by preconceived hypotheses),
ethnography offers a unique approach to the study of human
behavior, and was especially well-suited to the purposes of

the research.
Selection of Participants

For the discovery of grounded theory, the researcher
does not determine beforehand how many participants will be

studied. To generate theory it is necessary to focus on the

31

categories or major themes which emerge as data are
collected, and then to keep gathering data until the most
important, or core, categories are saturated. At the point
of saturation, multiple examples of incidences of the
category and its properties have been documented in the data
collection, and, as Glaser and Straus (1967) asserted, "no
additional data are being found whereby the sociologist can
develop properties of the category" (p. 61).
In this research, two families were studied. The
criteria for selection were as follows:
1. The families were served by the referring agency;
2. The first two families meeting the criteria and
willing to participate in the study were selected. If more
data were needed to saturate core categories, a third family
would have been chosen later in the study. This was
unnecessary;
3. The handicapped child was:
(a) aged 6 or less;
(b) of either gender; and
(c) diagnosed as having a developmental
disability, (a specific diagnosis was not necessary);
4. The families of the handicapped children:
(a) consisted of two adult parents, living in the
same household with the handicapped child and siblings; in
both families, the parents were married;

(D) had at least one sibling in the family;

32

(c) had at least one of the child's grandparents
in an active relationship with the family and available for
contact; and

(d) were located geographically such that
frequent home visits were possible.

In order to identify families suitable for this
research, I contacted the director and social worker of a
social services agency serving disabled children and their
families. After hearing about the proposed study, receiving
a copy of the research proposal, consent form, and letter to
families (see Appendix A), and discussing the idea with
other staff, the director and social worker agreed to ask
families if they would be interested in being part of the
study.

The social worker contacted several families fitting
the criteria before identifying one willing to be part of
the study. Those who declined did so because they were not
interested, they were too busy, or because it was too much
time to commit. The social worker later said that she was
feeling protective of the families, and if they showed any
hint of reluctance, she did not push them to participate in
the research. She contacted the families she was
considering and explained the study to them by reading the
letter to families (Appendix A). When a family accepted the
referral, she called me with the family's name and phone
number. To accommodate my restricted time schedule and in

order not to complicate data collection, I asked that the

33

families be referred one at a time. The second family was
selected in a manner similar to the first once the data

collection with the first family was almost completed.

Methods

With ethnographic methodology, the researcher enters
the field with the idea of learning information about the
research questions from the study's informants, those who
have agreed to participate in the study. In effect, the
ethnographer is looking for cultural meanings of the group
studied. The informants tell, in their own words, what life
is like for them.

The ethnographer listens to the informants, and does
not assume understanding of what people are saying, without
checking it carefully. Becker and Geer (1970) noted:

Any social group, to the extent that it is a
distinctive unit, will have to some degree a culture
differing from that of other groups, a somewhat
different set of common understandings around which
action is organized, and these differences will find
expression in a language whose nuances are peculiar to
that group and fully understood only by its members....
So, although we speak one language and share in many
ways in one culture, we cannot assume that we
understand precisely what another person, speaking as a
member of such a group, means by any particular word.
In interviewing members of groups other than our own,
then, we are in somewhat the same position as the
anthropologist who must learn a primitive language,
with the important difference that... we often do not
understand that we do not understand and are thus
likely to make errors in interpreting what is said to
us. (p. 134)

The ethnographer must also be aware that, as with any

type of retrospective research, which asks people to discuss

34

events which happened sometime earlier, informants' memories
may be imperfect, and subject to recall bias.

Mindful of these two cautions, I assured that I
understood the informants' meanings correctly and checked on
information about earlier events by using multiple methods
of collecting data, by asking the same question in several
ways to corroborate the data, by restating what the
informants said and asking for elaboration, by talking with
more than one informant about the same event, and by asking
the informants to review and comment on the written
ethnographic report.

Ethnographic interviews of family members and
participant observation in family activities and events,
done in the home and at other sites chosen by the families,
were the major methods used to gather information related to
the research questions in this study.

Ethnographic interviews, which are friendly
conversations which evolve into more structured interviews,
encourage informants to share information about the research
questions and areas of interest. This is open-ended
interviewing at first, with the researcher pursuing topics
which seem important to the informant or which relate in
some way to the whole gestalt of the research.

Interviews were carefully planned to establish rapport,
to help the informant understand the purpose of the
interview, and to ask ethnographic questions which help the

ethnographer understand how the informant organizes and

35

expresses information. Ethnographic questions, as described
by Spradley (1979: 60) include:

1. Descriptive questions which enable the researcher
to get samples of language from the informant. Example:
"Could you describe a typical day in the life of your
family?"

2. Structural questions which show the researcher how
informants organize what they know. Example: "What are all
the different kinds of seizures your child might have?

3. Contrast questions which help the researcher
discover what informants mean by the terms they use.
Example: ”What's the difference between a myoclonic and a
jackknife seizure?"

Participant observation helps the researcher get an
idea of what the families' lives are like, to see, to know,
as well as possible, who they are. The ethnographer
observes events and activities in the lives of the family
members, participates to some degree in these activities,
and makes careful detailed recordings.

The researcher decides where along the continuum of
total observation to total participation the research
activities will fall on a given occasion. Observation is an
excellent way to learn from a family; it complements the
interview method well. With this research, observations
were done during interviews as well as by themselves with
little or no direct conversation. Accompanying the families

to a basketball game, to the bowling alley, and to the

36

hospital, as well as observing the handicapped child at
school and therapy sessions gave information which could not
be obtained by the interview method, and provided a context
in which to put items learned from interviews. Total
participation in the form of direct interaction with
children in the study was especially helpful for an indepth
understanding of what it is like to care for or teach the
handicapped child and to figure out the best way to do daily
activities.

Techniques which supplemented interviewing and
participant observation included:

1. Developing a genogram (McGoldrick and Gerson,
1985), which traces lineage of both parents, notes important
facts of family history, and provides general background
information on extended family members;

2. Mapping, which helps to locate the family in space:
neighborhood mapping gives a sense of how the family fits
into its geographical environment, and household mapping
gives a sense of how the family organizes and relates to its
own private space;

3. Eco-mapping (Hartman, 1979), which graphically
describes the family's support system and interaction with
other parts of its ecosystem;

4. Viewing family photographs and videotapes, which
facilitates discussion of family events and aids

identification of some extended family members; and

37

5. Completing time logs, which chronicle, hour by
hour, a week in the life of the family members, and provide

information on family activities.
Plan of Visits

In this report, pseudonyms have been used to disguise
each family's identity. Contacts with the Bradley family
occurred between late December 1985 and early June 1986, for
a total of 41 contact hours, over 14 sessions. Visits to
the Carter family happened from early May to early September
1986, for a total of 27 contact hours, over 12 sessions.

Shortly after the parents gave verbal consent to be
involved in the study, I initiated a series of visits to the
family. To join the family and begin the research in a
manner as minimally disruptive to their lives as possible, I
followed the parents' wishes about who was to be involved in
the visits on a regular basis, and about the timing of the
visits, i.e., morning, afternoon, evening, on a weekday or
weekend. The family and I planned together for the family
events and activities in which I participated.

The time frame for involving these families was a
period of about eighteen weeks each. Initially, the time
frame was planned to be about half this length, but it was
difficult to keep to the planned weekly contacts due to
health, weather, transportation difficulties, and other
factors. The generation of grounded theory also demands

processing time between the sessions, so that the researcher

38

may record, code, make connections among collected data, and

plan the thrust of the next data collection session.

Procedures

The focus of early home visits was on getting to know
the family, and building rapport with family members. In
the beginning, I encouraged family members to tell about
their lives in their own ways, and to suggest activities
that might help me get to know them. I told the family I
wanted to learn about what it is like to be part of a family
which had a handicapped child. Children were given the same
explanation as the adults, presented in a manner geared to
the child's level of understanding. For example, in the
Carter family, I told nine-year-old Chuckie I wanted to know
what it was like to have Krissy, the handicapped child, for
a sister.

I explained the research to the family, at the
beginning and as I went along, until I was sure that they
understood that I wanted to hear what their lives were like,
in their own words, and that I had no preconceived ideas
about what that would be. Sometimes I found it necessary to
ask the same question in a different way, to understand
something more fully. When this happened, I explained that
getting information in different ways helped me to
understand them better. If they indicated that they felt
they were repeating themselves, I assured them that it was

all right to cover the same ground again, if the question

39

seemed to warrant it. Different kinds of information were
obtained on different days, at different times, and with
different activities and settings, so research activities
were varied with this in mind. For more information on
specific research activities with each family, see Appendix
B.

Occasionally a family member asked about how an
activity, such as doing the genogram, would help the
research, but no one ever refused to answer a question,
though this option was made clear to them in the beginning
and occasionally during the interviewing. As the research
progressed, both families offered information spontaneously
(i.e., offering information I hadn't specifically asked
about, but which fit the general bent of the research) and
extended invitations to be involved in activities that had
not initially been planned. For example, one family invited
me to observe their routine of putting the boys to bed. In
the other family, the mother suggested I observe the
handicapped child's bathtime.

Research activities occurred in several places: at
family members' homes, at treatment service sites, and at
recreation and eating establishments in the community. I
usually visited with a group of two or more family members,
and also scheduled individual time with family members
occasionally. Grandparents and other relatives were
interviewed individually, apart from the nuclear family.
With parents' permission, some service providers working

with the family were seen briefly.

40

Children were involved in some fashion in all of the
visits to the nuclear family, either sitting or playing
nearby while their parents were talking, or participating
directly. Given the young age of the involved children,
actual interviews with them were kept brief and were geared
to the child's developmental level as regards attention span
and ability to participate. My interactions with the
children involved an activity of interest to the child,
either using and talking about toys and familiar activities
with the child or introducing an item of interest to the
child. For example, with one family, I brought a Polaroid
camera which was used as a focal point of activity for my
time with the children (ages 5 and 7) during a family visit.
In the other family, the nine-year-old sibling of the
handicapped child was involved in family interviews as well
as an outing to play miniature golf with me, with discussion
of the research questions occurring during the drive to and
from the mini-golf course. Information about the
handicapped child's adjustment to his or her handicap and
about the siblings' adjustment to the handicap was also
sought from the parents.

Care was taken that, for all family members,
participation in the research did not become a stressful
experience. This was accomplished by my being sensitive to
family members' willingness to talk, observing body language
which might indicate stress, asking directly if a given

research activity was problematic for them, and giving the

41

family members options about rescheduling visit if it seemed
that the visit was interfering with family activities.

I prepared for each visit ahead of time by writing out
ideas, questions, areas to focus on and things to do, to
provide a guide for each visit. For an example of
preparatory notes, see Appendix C. Due to the nature of
ethnographic interviewing and participant-observation, the
visits did not always go as planned. Since I was aware of
the categories which were emerging as important, and since I
was alert for new possible categories, I just went with the
flow of what was happening, incorporated it into the data
collection, and planned to cover needed topics on the next

visit.

Recording'Data

As family members reported their thoughts, feelings,
and experiences, information was recorded in two ways:
written in brief note form during and immediately after the
interviews, and tape recorded. Initially, for taped
interviews, I recorded my thoughts about nonverbal behavior
using written notes. Shortly after beginning data
collection, due to the amount of travel involved and the
timing of visits (e.g., finishing up late in the evening), I
decided to tape record these notes, to enable me to record
thoughts and impressions during the drive home. These taped
notes were expanded upon and entered on the field notes form

as soon as possible after the data collection session.

42

To avoid confounding the data and to facilitate keeping
factual data and interpretations separated in the field
notes and later write-ups, the field notes form was divided
into three columns:

1. Observations: In the center and widest column of
the form, quotations (if the interview was not taped) were
written. In addition, notes on behavior of family members
and descriptions of the environment were detailed as fully
as possible;

2. My interpretations/opinions: In the right-hand
column, the tentative meanings I ascribed to the
observations were noted. In addition to this separate
column, if I inadvertently wrote an opinion or
interpretation into the body of the observations, once
discovered, this was set apart from the objective data by
brackets, so the opinion would not be recorded as fact; and

3. Memos: In the left-hand column, I listed ideas to
be followed up on and concepts to be expanded upon. These
short memos, a phrase or sentence, jotted next to specific
observations, helped me capture fleeting thoughts about the
data which occurred as the notes were being written,
reviewed, and analyzed.

Accurate reporting of the data is crucial to the
cultural description and the theory which are the end result
of the research. Spradley (1980: 66-68) discussed three
principles which help the researcher to ensure accurate

recording:

43

1. The language identification principle: accurately
noting in the field notes who is speaking, and using their
language, reporting what was said in ways that preserve the
speaker's meaning;

2. The verbatim principle: making a verbatim record
of what people say, indicating this by use of quotes; and

3. The concrete principle: using concrete language,
being as specific as possible to describe exactly what was
observed.

The ethnographic record included taped interviews as
well as the written notes. To become familiar with the
content of these interviews, I took notes while listening to
the tapes. I then listened a second time to expand on the
original notes and indicate specific quotations before
coding the notes in much the same manner as the written
observations. When specific quotes were needed for writing
up the final report, I consulted both the written
observation notes and these taped-interview notes. In the
case of any confusion about a quotation from a taped
interview, I listened to the relevant tape a third time to

assure the accuracy of the reported quotation.

Ethical Considerations

Upon referral of the family, I called the parents and
explained the study to them. On the first visit, I shared a
brief letter describing the study and stressing the

voluntary nature of participation. Consent forms were

44

signed by both parents (see Appendix A). Parental consent

was deemed necessary but not sufficient for children to be

involved; their verbal assent was also required before they
were involved in specific ways.

Data collection with children was done in a setting
familiar to the child after a period of getting to know me,
and was not done if the child objected or refused. This
condition was made clear to the parents at the initiation of
the study so that the child would not be pressured into
undesired involvement.

Records of participants were kept confidential. As
noted before, names have been disguised in this report,
which was shared with the families before the final draft
was completed, to get their responses about the accuracy of
the collected information. Both families expressed
agreement with the information presented in the report. The
only change requested was to include a more complete
description of one child's vision problem. This change was
made.

Since I am trained in working with families and
sensitive to family needs, and since the ethnographic method
focuses on understanding family realities, participation in
the study was seen as being not harmful and possibly helpful
to the families.

Data Analysis

The method of analysis for this research was the joint

collection-coding-analysis process called the constant

45

comparative method (Glaser and Strauss, 1967), in which as
data are collected, they are constantly coded (put into
categories) and compared with previously collected data.
Categories and their properties are gradually defined and
then are saturated. As the theory emerges, it is expanded,
then honed, until at last it is written down in the final
report.

For generating grounded theory, Glaser and Strauss
(1967) stated:

Joint collection, coding, and analysis of data is the

underlying operation. The generation of theory,

coupled with the notion of theory as process, requires

that all three operations be done together as much as

possible. They should blur and intertwine continually,

from the beginning of an investigation to its end. (p.

43)

In a similar vein, Agar (1980) described the process
as:

You learn something ("collect some data”), then you try

to make sense out of it ("analysis"), then you go back

and see if the interpretation makes sense in light of

new experience (”collect more data"), then you refine

your interpretation (”more analysis"), and so on. The

process is dialectic, not linear. (p. 9)

It is important to realize that theory development is a
process, actually three ongoing, intermeshed processes.
Data collection and coding need to be paced such that there
is time to think through, or analyze, all that is happening,
both with the data collection itself, and with the coding
activity. It is here that the theory emerges, develops, and

is shaped. The researcher continually asks: "How does this

piece fit with what I already know?" "What does it say

46

about other observations already made?" "What does it
suggest about the direction of future data collecting
activity?" The search for connections continues, pushed by
the "belief that an isolated observation cannot be
understood unless you understand its relationships to other
aspects of the situation in which it occurred" (Agar, 1980:
75).

Looking for contradictions, or differences, in what the
researcher sees or hears during data collection can be
especially fruitful. It is what happens when "expectations
are not met; something does not make sense; one's assumption
of perfect coherence is violated.... the differences noticed
by an ethnographer are called breakdowns" (Agar, 1986: 20).
The researcher tries to make sense of the breakdowns in
light of other available data, to resolve the discrepancy.

Resolution happens over time, in a number of
interconnected ways, such as repeating what was said that
seemed not to make sense and encouraging elaboration,
thinking about what was bothersome about the original
observation/interview (i.e., why did this not make sense?),
writing it down in the field notes, thinking about it at a
relaxed time, jotting down ideas about it to be pondered at
a later time, letting the ideas mellow a bit on the back
burner of the mind, listening for how words are used by the
informants, observing some more, asking more questions in a
focused manner on a related topic, or asking a question

directly about the contradiction. Asking directly is

47

perhaps done best in a manner that says: "Before you told
me this and then you told me that and I'm trying to figure
out how the two go together" or saying "I heard you say Y,
but I also see X, can you tell me more about X?" An example
of a contradiction, which will be explained in more detail
in a later chapter, was something noted early in the
research with the first study family. They seemed to be
saying that their young son, who was clearly dealing with
and receiving multiple therapies for a developmental
disability, was not really handicapped. Resolution of this
breakdown helped me in understanding how the family dealt
with their child's handicapping condition. (See Appendix
D.)

When data collection begins, the researcher starts out
with eyes, ears, and mind open, assuming the role of a
learner, with the informants as teachers. The first data
collection session may be overwhelming; since it is not
clear what is important, it may seem that everything must be
recorded. With the review and coding of the first session's
data, the researcher begins the first tentative analysis,
with some notes in the interpretations column on the field
notes_form. The researcher makes memos, such as notes about
something to follow up on, or a reminder to watch for more
on a given topic.

As analysis gets under way, longer memos, a paragraph
or page separate from the field notes form, help to develop

ideas about the codes. Memos are'written freely, quickly,

48

as the ideas occur, with no thought initially as to proper
grammar or where the thoughts might fit. This "freedom of
memoing" (Glaser, 1978:‘ 85) allows ideas to get out and on
paper, to enhance conceptual development. Memos are
critical to the development of the theory; they help to
expand the ideas which are evolving and stimulate creative
thought. They continue to be important to the whole
process as they tie together ideas which come up and help to
develop the theory. Ideas about the data collection and
analysis which occur at odd moments, while the researcher is
engaged in other activities, are recorded on small memo
cards at the time they occur and incorporated into the body
of research information at a later time. (See Appendix D
for examples of memos.) In some ways, doing this kind of
research requires an act of faith in the method, a belief'
that something interesting and important will emerge in the
end that will make all the time and effort worthwhile.

As more data are collected and more coding and analysis
done, the researcher looks to see what patterns are
emerging. Now it is possible to begin to identify the major
themes, the core categories central to the developing
theory. The data collection becomes more focused on getting
information on these categories, and on identifying the
properties of the categories.

This process involves theoretical sampling, a procedure
much different from the random sampling done with

statistical research. With theoretical sampling, the

49

researcher lets the emerging theory guide the focus of the
ongoing data collection, to obtain more information on core
categories, in order to saturate the categories. Glaser and
Strauss (1967) noted:

Beyond the decisions concerning initial collection of

data, further collection cannot be planned in advance

of the emerging theory (as is done so carefully in
research designed for verification and description).

The emerging theory points to the next steps —- the

sociologist does not know them until he is guided by

emerging gaps in his theory and by research questions

suggested by previous answers. (p. 47)

This collecting-coding-analyzing process is very
time-consuming. The researcher cannot rush the data
collection process without affecting theory generation and
must pace the data collection to accommodate the demands of
the coding and analyzing. As data collection proceeds, it
eventually becomes apparent that new incidents which relate
to the core categories do not add more information about the
core categories; the category is then said to be saturated.
When core categories are saturated, the data collection
draws to a close, and the final analysis begins.

In some ways, this process is like doing a puzzle,
where you have only a vague idea of the scene you will be
putting together. You first look for the edges, or sections
that seem to relate to each other, in order to get your
bearings. Then you start to look at the other pieces,
rejoicing as you complete parts of it and working all the

harder to find the pieces you need to make it all come

together. Doing ethnography and developing grounded theory

50

is like doing a mental puzzle. After you find your edges
and define what you are looking for, you look at all the
pieces you have collected. As you focus more as your visits
proceed, you really work for some pieces, to see where and
how they fit. You may end up with enough pieces for parts
of several puzzles. You choose the pieces that seem most
relevant and pull it together so it all makes sense, being
careful as you go to make it clear how you started and where
you went, so that others interested in your research might
understand how you decided what was important and how you
got where you did.

This complex process yields a description of the
culture and a theory which has emerged from the data. The
goal of the final report is to translate what has been
observed, the meanings discovered in the participants'
culture, and communicate these meanings to other people, not
of the culture, who will be the readers of the report.

In this case, the final report, using information
gained from multiple techniques in studying two families
with handicapped children, offers grounded theory regarding
what it is that such families experience. It is hoped that
such information will be of help to other families with
handicapped children and to professionals who work with and

desire improved care for such families.

Validity and Reliability

Validity and reliability of research are concepts which

help to determine if research was done in a scientifically

51

acceptable manner. Validity, in quantitative research,
focuses on the tool used to gather information and basically
asks the question: Does it measure what the researcher
thinks it is measuring? Reliability asks whether the tool
will measure the same thing every time, if it is used under
the same conditions.

A lively discussion in the literature on validity and
reliability in qualitative research both (a) argued that
qualitative and quantitative research are different, so
validity and reliability should be looked at differently and
(b) discussed ways qualitative research might be done so
that it comes closer to quantitative research standards for
validity and reliability.

Leininger (1985) posed the question:

Can or should the same criteria be used to determine

validity and reliability for qualitative research as

are used for quantitative research? I do not believe
so, as the purposes, goals, and intent of these two
types of research differ. Different criteria,
therefore, are required to appraise validity and

reliability. (p. 68)

As stated before, qualitative methodology involves a
much different process than quantitative methodology. The
value of an ethnographic study lies in its ability to allow
the researcher to discover whatever is there to be
discovered. If the method is held too tightly to standards
for quantitative research, it loses much of its uniqueness
and its ability to generate theory. Starting out in a
different place, using a different method, it has different

goals and reaches different outcomes. Thus, the question of

52

validity and reliability in a qualitative study raises
different concerns than found in quantitative research.

The validity of qualitative research should focus on
the validity of what the researcher is discovering... does
it ring true? Can the research show what is emerging meshes
with other parts of what is being observed? Do the
informants agree with what the researcher is saying?

Leininger (1985) said that measurement is the focus of
quantitative validity, but that qualitative validity "refers
to gaining knowledge and understanding of the true nature,
essence, meanings, attributes, and characteristics of a
particular phenomenon under study. Measurement is not the
goal; rather knowing and understanding the phenomenon is the
goal” (p. 68).

Validity is at the heart of ethnographic research,
built into its very fiber. The process one goes through is
that of trying to come up with the right questions, taking
pains to check out what one is learning, never assuming one
is correct in one's thinking, but checking back on it in a
number of ways. The process ”effectively checks perception
and understanding against the whole range of possible
sources of error" (Kirk and Miller, 1986: 25). The
researcher also spends time developing rapport and building
trust in order to help informants feel comfortable about the
research, to help improve validity. Such energy devoted to
getting accurate data speaks strongly for the inherent
validity of the ethnographic method.

53

LeCompte and Goetz (1982) commented: "Although the
problems of reliability threaten the credibility of much
ethnographic work, validity may be its major strength" (p.
43), since it is done in natural settings, its categories
are formed from empirical data given by the informants, and
the investigator's constant goal is to study and understand
the informant's perspective. All of this gives the
investigator many opportunities to ascertain the validity of
the observations made in the study.

Reliability, however, which involves replicability,
poses greater problems. Reliability focuses on the
following question: Would independent researchers find the
same results, draw the same conclusions, discover the same
things if they did the study again in the same or a similar
setting?

Since qualitative research is an innately different
form of research, reliability must be looked at in a
different light. The data collection and analysis one does
in research designed to generate theory is necessarily
different from data collection and analysis one does in
research designed to verify or confirm theory. The constant
comparative method, Glaser and Strauss (1967) argued:

is designed to aid the analyst... in generating a

theory that is integrated, consistent, plausible, close

to the data... the constant comparative method is not
designed (as methods of quantitative analysis are) to
guarantee that two analysts working independently with
the same data will achieve the same results; it is
designed to allow, with discipline, for some of the

vagueness and flexibility that aid the creative
generation of theory. (p. 103)

54

Leininger (1985) agreed that this is different, arguing
that in qualitative research, "reliability focuses on
identifying and documenting recurrent, accurate, and
consistent (homogeneous) or inconsistent (heterogeneous)
features as patterns, themes, values, world views,
experiences, and other phenomena confirmed in similar or
different contexts" (p. 69).

Due to its individualistic focus, the nature of the
approach which involves specific individuals, (informants
and investigator) in specific social roles, the changing
nature of the social processes observed, and the multiple
techniques used for data collection and analysis,
”ethnographic research may approach rather than attain
external reliability," (LeCompte and Goetz, 1982: 37), as
defined by quantitative methodology. Realizing these
limitations, LeCompte and Goetz (1982) suggested that the
ethnographic researcher can improve replicability of a study
by concentrating on providing detailed information on the
following:

1. Researcher status position: Since the researcher's
status in the group studied will affect the kind of data
obtained, the replicating researcher must at least hold a
similar social position in the group studied;

2. Informant choices: Since the choice of informants
will directly influence the kinds of information gathered,
due to the informants' particular role in and perspective of
the group, to approach reliability, informants in similar

social positions must be sought in the replicating study;

55

3. Social situations and conditions: Since the social
context of the data collection effort, whether done
individually or in a group, will affect what data are
actually obtained, the social context of data collection
must be similar in any replicating study;

4. Analysis constructs and premises: Since the
theoretical context of the study will affect data
collection, analysis, and conclusions reached, clearly
identifying units of analysis and the theoretical framework
of the study must be delineated in order to enhance
comparability of findings in other studies; and

5. Methods of data collection and analysis: Since
ethnographic methodology utilizes a multimodal approach, and
since different techniques will yield different kinds of
data, it is imperative that the ethnographers report their
techniques for collecting and analyzing the data in
sufficient detail that replicating researchers know what was
done and how it was accomplished.

To improve external reliability in this study, I have
provided information on these five items in this report. In
addition, field notes were written using precise, concrete
terms for observation of events, recording informants'
comments using their own words, noting examples and verbatim
accounts carefully, and keeping interpretive comments
strictly separated, all of which enhance accurateness of the

reported data.

56
Generalizability

Since this research is qualitative in nature and
focuses on two families, the results of the research are not
considered to be generalizable to all handicapped children's
families, as is possible with statistical generalization.
The ideas generated here, however, are generalizable to
theoretical constructs. Yin (1984) discussed this in
relation to case study research, saying such information is
"generalizable to theoretical propositions and not to
populations or universes... the investigator's goal is to
expand and generalize theories (analytic generalization) and
not to enumerate frequencies (statistical generalization)"
(p. 21). One limitation on the theory should be noted:

This research was done with families with a young
handicapped child, not with families with older handicapped
members. The theory was generated with families early in
the life cycle and does not address what might happen later
in the family life cycle.

With two families and the ethnographic method it is
possible to get to know the families in some depth,
exploring areas that a more surface look with more families
would miss. While what I learned from the two families is
in no way true for all families, it could be true for many
families. Could other families function in a similar
manner? Could the story of how these families are dealing

with their child's handicap, getting the child to needed

57

therapies, doctor's appointments, and regular schooling, and
giving medication as needed, be similar for other families?
In describing her study of three families which looked
at the effect of family dynamics on social and conceptual
learning, Kronick (1976) stated: "In some ways, three
families can tell us a great deal about all families just
as, if one learns to understand one person well, one has
gained many insights into humanity as a whole" (p. 6). The
stories that these families have to tell, the ups and downs
they have experienced, their dealings with the medical and
educational systems, their hard work to get the best they
can for their child, surely reflect some of the experiences
of other families with handicapped children. Some, perhaps
many, families will find that certain descriptions here will
strike a resonant chord. Studying two families affords an
indepth knowledge of what it is like, at least for some
families, so that we may look with more alert eyes at other
families with whom we come in contact. The truths that two
families share can point the way for areas to explore with

other families in other research.

Chapter 3. DATA COLLECTION:
DESCRIPTION OF THE FAMILIES

This chapter reports the results of the data collection
with the two study families. Its purpose is to supply
sufficient information about these families for the reader
to understand who the families were and how they lived their
lives. It also serves as the base of information out of
which the theory outlined in the next chapters emerged. A
section on my impressions of these two families completes

the chapter.
The Bradley Family

The Bradley family lived in the State of Maine, in a
small city of about 9000 people, described by the City
Planner as a "real nice community." Coming up from the
coast, the area got more thickly settled near their home,
after the gas stations, the motel, and the cinema. Past the
shopping center about a half-mile, a right turn led to the
family home which was a large white two-story house, with a
porch on the front. Behind the house, the large back yard
held swings and a picnic table next to the garage. A small
card by the front door said "Thank You For Not Smoking." An
identical card adorned the back entry.

The sounds of Tommy running to the door answered my
knock. His mother called to him in the background. The
Bradleys invited me in with a smile. The front door opened

onto a hallway, with stairs on the right leading up to three

58

59

bedrooms and a bath. To the left of the hallway was the
living room, with the playroom off that. Right ahead down
the hallway was the dining room, with a glimpse of the
kitchen just beyond.

The Bradleys were an average family in many ways: two
parents, two children, two cats, two cars in the driveway.
They were a busy family. Both parents worked and shared
child care responsibilities, somehow fitting demanding jobs,
the children's activities, family activities, community
work, and personal pursuits into their schedule.

Both parents were teachers. Eric Bradley enjoyed
teaching first grade, especially the mainstreamed
hearing-impaired children in his class. "I just find it
really exciting," he said, "the day goes very fast." Eric
came across as an affable sort. He laughed a lot as he
talked, and described himself as "flexible, easy-going,...
happy most of the time,... able to ride the waves as they
come"; his wife, Beth, said he was "one of the most caring
people I've ever met." He was a person who liked the house
to be neat, and he didn't mind being the one to clean it.
Eric said, ”I like to do the vacuuming, and the picking up.
I like to have it neat. I don't want any clutter; I don't
want any piles of anything anywhere. Not that if you look
around you, you're going to find it that way." This was in
contrast to Beth who smiled as he spoke and responded, "I
love piles. I love clutter." Eric also liked to garden,

another area where he and Beth differed. He said, "I

60

garden, that's my recreation." Beth thought his gardening
took up a lot of time and space. They laughed as they told
me how Beth had threatened to blacktop the garden plot and
paint flowers on it. Eric told how Beth "won't let me put
any flowers out back; she says the kids have to have a place
to play."

Beth Bradley was a physical education teacher for the
primary grades, a recent switch from junior high. She liked
her job, saying "it's neat, but it's hectic and I'm
physically really tired but emotionally I'm happy" at the
end of the day. She was a person who loved sports,
especially tennis which her Dad taught her when she was ten
years old, and field hockey, which she coached. Beth said
she was a perfectionist: "I do everything 120%; I don't do

very many things half-way, which gets me into trouble.”

Eric described Beth as "easygoing,... very intelligent,... a
very dedicated, very involved person,... creative and
talented when it comes to working with little kids,... very

loving." She disliked cooking, housework, and washing
dishes.

Both parents spent a lot of time in family activities
like basketball, bowling, eating at McDonald's. They also
saved time for their individual interests and community
work. At the time of the research visits, Eric was taking a
course at the University, and was also helping with a
fund-raiser for the hospital. In addition to coaching and

playing tennis, Beth, who described herself as "a political

61

being," was active in teacher negotiations. Both enjoyed
watching their favorite shows on TV -- Beth liked Jeopardy
and the Cosby Show, Eric said he "has to watch" St.
Elsewhere. Beth liked to read Iimg magazine from "cover to
cover"; Eric did the same with Gourmet magazine.

As a couple, Eric and Beth went out occasionally,
relying on their regular babysitters. They celebrated their
10th wedding anniversary, which occurred during the research
period, with a trip to New York. They also took weekly
ballroom dancing lessons together.

Tommy Bradley was a busy 5—year—old who went to nursery
school three days a week and spent most weekday afternoons
and some mornings with his regular babysitters and two other
children. Like many S-year-olds, he was interested in
things around him, asking questions, talking about things,
trying new activities. Eric said he was a "jovial and
happy" child. His Uncle Jack described him as loving,
charming, and caring. Tommy went to weekly gymnastics class
and played basketball once a week on the Y team his mother
coached. In the good weather, Tommy played outside and rode
his bike when he could. Into this active life were added
weekly physical and speech therapy sessions to address
Tommy's special needs. Tommy had suffered a stroke at or
before birth, the aftermath of which was a right-sided
hemiparesis affecting his hand, arm, and leg; he had no
vision in the right half of each eye, from the midline out,

and his speech was also affected.

62

His parents thought of Tommy as a "slow learner"; he
managed all right in nursery school, but names of things
were hard for him to remember, even the names of the 19
classmates he had been seeing at school three times a week
for several months. At school, he spent time rocking in the
wooden boat, playing with the scale, and painting at the
easel. He worked with other children at the sand table,
preparing snacks, and using playdough. At group time, he
watched the teacher, and occasionally answered a question
that she asked the group. He got along well with the other
children; his teacher, Mrs. J., described his social skills
as an area of strength. He was also fairly strong visually,
she noted, despite his vision problems. Mrs. J. went on to
say he was persistent, and that he compensated fairly well
by himself, for example, positioning himself during group
time up at the front in a spot where he could see best. The
teachers didn't have to do much to accommodate his handicap.
In fact, Mrs. J. said she often forgot he was handicapped.

Robbie Bradley was seven, a second grader who was very
interested in dinosaurs and robots if the things he talked
about and brought out to show were any indication. He went
to school every day and then to his babysitter's. He also
played on the basketball team his mother coached and went to
weekly gymnastics classes. His dad said he was "a very
sharing person, a very caring person,” an outdoor person who
loved sports, loved to help around the house, and was

"addicted to cartoons." Robbie was pretty "protective" of

63

Tommy, said Beth, though they "fight like any kids." Robbie
was working hard on reading at the time of the research;
each night either Beth or Eric read to him and listened to
him read. Eric and Beth noted that they had always tried to
balance the attention given to Tommy for his special needs
with special time for Robbie so he wouldn't feel neglected,
though that had been difficult to do sometimes.

During the year before the research began, the family
had discovered that Robbie had asthma and they had begun to
make the changes necessary to help him be healthy. Because
of his asthma, Robbie couldn't play outdoors in cold weather
which he loved to do and they had had to move books and
stuffed animals out of his room. They hadn't done all these
things —- it was hard to do. Visitors were not allowed to
smoke in the house. Wood smoke was a problem for Robbie
too, so the family had converted back to using oil heat, an
added expense and another lifestyle change. Robbie was
allergic to the cats, so they too had to go. During the
first research visit with the family, someone came to pick
up one of the cats.

In some ways the Bradleys were "not the typical
family," said Eric. As a dual-career family, both parents
‘were breadwinners and child caregivers, and they had an
'untraditional approach for some of the tasks that needed
doing. Eric didn't like to handle money, so Beth did that.
He liked things to be neat, so he did most of the housework,

which Beth hated. Neither of them really liked the everyday

64

cooking, so whoever got "stuck" did it. Eric, however, did
enjoy gourmet cooking for company and cooking activities
with the boys. If a friend asked for someone to come to a
TUpperware party, Eric was the one to go. They shared the
job of getting the boys to their activities, and supported
each other in getting time for their individual pursuits.
Beth reported that people told her, "you are really lucky
your husband lets you do" some of the things she did.

Eric and Beth said people "think we're kind of funny," but
"we have a good time."

Another difference was they were a family dealing with
the needs of their young handicapped son. And then, with
Robbie's asthma, they had two children with very different
and very specific special needs. In attending to the
special needs, they had supporters who helped out in
numerous ways. Some were actively involved in day-to-day
needs, other offered moral support or financial help when it
was needed.

People who were "there when you need them" included
their families -- Eric's mother and brother Jack, who lived
nearby, and Beth's parents, sister, brother, and two aunts
who lived in other states and kept regular contact through
phone calls, letters, and visits in the summer. Their
neighbors were "there if you're in need," and they had
babysitters they had confidence in, a pediatrician they

could rely on, and professionals they trusted to work with

65

Tommy. They especially liked having professionals who were
"straightforward" with them.

Eric's twin brother, Jack, a teacher and part-time
waiter, was very involved with the family, transporting the
boys and filling in for the parents as needed, babysitting,
taking the boys on errands and to special events, doing, as
he said, "whatever is needed." When Tommy was three, Jack
had taken Tommy to his physical therapy sessions, had
learned the exercises and shown them to Eric and Beth. Jack
said that Eric and Beth were doing a super job, though
sometimes he thought they might do too much for Tommy. He
thought that Tommy did pretty well on his own, and he was
"not really handicapped." Although Tommy had a history of
problems, he was doing well.

Eric's mother, a psychiatric nurse, also helped a lot.
She said she enjoyed having her grandchildren visit; a room
in her home was set aside with toys and games for them. The
boys stayed overnight less after the discovery of Robbie's
asthma as her home was not as controlled for dust and drafts
as Eric and Beth's was. Eric's mother did not see Tommy as
disabled at all, and said she even forgot that he was,
adding, ”there's so much about him that is just so natural."
She remembered the early days though, watching Tommy's
progress; she mentioned that prayer may have "helped him
over the hump." ”Amazed" at what Tommy could do now, she
related how they were "all pleased with every bit of

progress." Her stories of Eric and Beth suggested the

66

hecticness of their lives; she commented: "Confusion
reigns, but they manage it beautifully." She said she
encouraged Tommy to use his right hand, and noted that both
boys were left-handed, as was their Uncle Jack. Their
grandfather, her late husband, was ambidextrous. Whether
Tommy was actually left-handed was unknown, Eric later
clarified for me; it may be that he would have been
right-handed, if not for the stroke.

Beth's parents were retired; they kept busy with
gardening, tennis, walking, activities with friends, and
"church stuff," Beth's mother said. According to Beth's
dad, they shared "joys and grief" on the phone once a week.
Beth's mom, who wrote to them every Tuesday, described
theirs as a "close family" with a lot of contact, where
everyone was interested in everyone else. Beth's mother
said that Eric and Beth were doing a "beautiful job." Yet
she also related the feeling of sadness that "our children
have to go through this all." The grandparents thought
Tommy had come a long way from the beginning when they had
questions about ”Will he walk? Will he talk? Will he be
retarded?" As Tommy grew, Beth's attitude was to avoid
being overprotective. Beth's mother recalled that when
Tommy was learning to climb stairs, Beth told her "let him
go, Mom, he's got to learn.” Though separated by distance,
the grandparents kept track of his progress, appreciating
"every step forward, more than you would normally think of

doing.” In a lot of ways, added Beth's dad, they don't

67

consider Tommy extremely handicapped; he was doing well and
they hoped he would continue to do so.

Most of the rest of Beth's family lived out of state,
but kept fairly regular contact. Eric had a brother who
lived out of state, with whom they had some contact, and two
step-brothers who lived nearby, with whom they had little

contact.
History of the Handicap

Although Tommy did seem to be doing well at the time of
the research visits, he had gotten off to a rough start. He
had been born four weeks Early, weighing 8 lbs, 11 oz.
Robbie, too, had been born this early, but he was healthy
with no problems. Tommy's lungs had been "not sufficient,"
according to Beth who remembered his birth as a difficult
time, when Tommy looked like "the wrath of God." Nobody
came to visit in the hospital, though many friends had come
by to visit when Robbie was born. When people found out
that Tommy had a problem, "they stayed away." Other family
members echoed her sentiments about the difficulty of that
time -- Eric said "I cringe" to remember that time; Jack
recalled "we almost lost him." Eric's mother described the
discovery of the handicap as "panic number one -- and where
do you go from here?" Beth's parents affirmed that it was a
”crying time for sure" when they "weren't too sure he'd make

it.”

68

It had been a time that Beth and Eric said, "no matter
if somebody told you it was going to happen, you'd never be
prepared for it." Beth remembered one thing she found
difficult was the supposedly reassuring things people said
like "he'll outgrow it," and "God gave him to you because
you're such good parents." Beth also remembered this early
hospitalization as a time when she didn't know how to be
assertive about her and Tommy's needs, but she "knows that
now.” When Tommy was older and had to go for tests, she and
Eric learned to insist on being with him during the
procedure. The Bradleys called their learning to be
assertive ”the emergence of the butterflies."

After Tommy got home from the hospital, things seemed
to go well for awhile. His paternal grandmother reported
memories of a "beautiful baby" with a "happy personality."
Beth said they thought they had the "perfect baby," and they
were in their "happy little cloud" for 4-5 months, and
"little did we know” what was coming. Over time, they
noticed that Tommy was using his right hand less and less,
and so they started to ask questions of their doctor. They
went ”from ignorance to ignorance," trying to get answers,
not suspecting it was really serious; they kept thinking of
it as a "hand" problem, not something neurological. They
were surprised when it was called cerebral palsy -- no one
used this term until Tommy was about a year old.

Eric and Beth said they sought out "the best" for

Tommy, traveling to Boston and other parts of Maine for

69

evaluations as needed. These trips to see specialists
increased the costs of dealing with the handicap, but as
Beth said "it's a given; we'll do the best. It doesn't
matter what it costs." They also put energy into finding
toys which Tommy could manipulate with his left hand, and
clothing he could manage by himself.

Tommy's handicapping condition might best be understood
by considering the wealth of medical records which Beth kept
-- reports from the neurologist and ophthalmologist,
developmental evaluations, speech and physical therapists'
progress notes and individual program plans. These records
chronicled the course of Tommy's treatment, suggested the
variety of services he had received to diagnose and treat
his handicap, and clarified his parents' role in his care.

Exactly when the stroke happened was not clear; it was
at or around the time of his birth. In a report (June 1981)
when Tommy was 10 months old, the neurologist diagnosed:
”encephalopathy, etiology not definite but quite likely
perinatally acquired."

The importance of the parents' involvement in Tommy's
ongoing treatment was clear from these early records. When
Tommy was 10 months old (June 1981), the physical therapist
wrote: ”General handling is one of the most important
things to remember. Since the main objective is to
normalize tone, this must be worked on all the time through
the way Tommy is picked up, carried and held." It seemed

the parents took this to heart as evidenced by a later

70

physical therapy progress note (July 1982) at age 23 months:
"Right side neglect is still an ongoing problem but Tommy's
right side is not as tight as it used to be. Tommy's family
does an excellent job of turning many activities into good
sensory experiences for his right side."

These sentiments about the good work the parents were
doing and the constant attention Tommy got for his physical
needs appeared throughout the reports. Ten of the 32
reports in the file mention the supportiveness of the
parents or the family involvement. Jack remembered that
when they all knew what Tommy needed, everyone wanted to be
part of helping, all poking and pulling at Tommy's arm. He
thought that Tommy seemed to enjoy all the attention. This
attention to Tommy's right side continued. Tommy's paternal
grandmother said that she encouraged games and activities
using the right hand. Two of Tommy's babysitters were aware
of his needs; one told me how she tried to make Tommy use
his right hand, the other showed me how she pulled on
Tommy's right arm occasionally as Beth told her to do, "when
you think of it." During everyday activities, Beth had
developed subtle ways of getting Tommy to open his right
hand, as when she played fortune teller. If Tommy presented
his splayed left hand to have his fortune read, she might
reply: "Oh, you want me to read the lines? I only do that
with the other hand."

The family worked on Tommy's speech needs too: A

February 1983 (age 2:6) speech and hearing center assessment

71

report noted that both parents attended the assessment, and
that they were "eager to help in the therapy process via
home activities." As with the physical therapy activities,
speech practice was woven into the very fabric of the day's
ongoing activities. For example, when Tommy complained to
his mother that something wasn't ”fair,” Beth might repeat
”fair,” enunciating the ”f," and have him repeat it before
responding to his complaint about the unfairness of the
situation.

The family incorporated Tommy's needs for constant
attention into their daily routine, and they were rewarded
by his progress. A March 1983 physical therapy report, at
age 2:7, underscored the success of their work:

Since his parents work with Tommy consistently

encouraging use of the right side of his body, Tommy

will now hold his right hand with his left hand, open
his right hand and attempt to put objects in his right
hand.... In spite of a significant right side
hemiplegia, Tommy is a capable youngster who is
performing close to age level in fine and gross motor
skills. He is learning how to compensate for his right
visual field loss and his right side tightness.

Through regular therapy and consistent work by his

parents, problems of right side neglect and improving

right side function were worked on daily.

The neurologist reported in similar fashion, in May
1984, at age 3:9, that "his gait is surprisingly good. He
has hemiparesis but seems to be able to progress rather
rapidly... seems to be developing reasonably well. The
‘parents have done well by him."

Tommy's personality seemed to be a part of the picture

too. Of the 32 records in Beth's notebook, 13 described

Tommy in positive terms: a "striking little baby," a

72

pleasant child," a "very bright, happy, attentive l4-month
old... who clearly seems interested in all that is going on
about him," and an "alert, curious, sociable little boy."
Only one report, in July 1983 at age 2:11, noted a problem
with "oppositional behavior." Finally, his initial Pupil
Evaluation Team (PET) meeting for evaluation and placement
when he reached school age listed his areas of strength as
"good social skills, good peer interactions, creative, sense

of humor" and noted that "Tommy is a joy to work with."

Daily Routine

Tommy might have been a "joy to work with," but what
was it like to work with him, live with him, love him 24
hours a day as his parents did? What was life with this
special needs child like for the Bradleys? In some ways, it
was similar to life in any family with young children, in
other ways it was different.

The Bradleys described their daily schedule as
”organized confusion." Mornings were "hectic," starting
about 6:15 a.m., as Beth got up and made breakfast and
lunches. Eric got up a bit later and did any ironing that
needed to be done while the boys ate; the TV was on. One of
the parents got clothes out for the boys, finding matching
socks ("the socks," Beth groaned, "are the worst"), and
boots, snow pants and mittens, and "things just reach a
fever pitch around here around twenty of eight when we are

both trying to get out the door." Robbie usually dressed

73

himself, and as Beth said, "if it were up to our physical
therapist, Thomas would dress himself. If we didn't have to
be in school until ten o'clock, Thomas could dress himself,
but we dress Thomas.... It just takes too long, and I am
sure that is really not the best for Thomas.... I mean it's
just like whatever is the fastest and the most expedient to
get us out of here on time is what goes." Before they left
each day, they had to do "everything" -- Beth admitted, "it
doesn't sound like anything at all." Eric clarified, "it's
making sure you have the right library books, and the right
whatever they need for school, and it's always two minutes
before they go out the door: 'Oh, Daddy, I need....'"

Beth elaborated: "On Monday, Tommy has gymnastics. We
used to put his shorts on underneath, but that gave him a
rash so we have to make sure we have the shorts packed on
Monday. On Tuesday, he has speech, and doesn't need his
little book for speech on Tuesday, he needs it on Friday.
But on Tuesday he needs a lunch because he doesn't go to
school on Tuesday, and the lady he stays with on, well it's
the same lady every day, but on Tuesday and Thursday he
stays there for lunch so you have to pack it. Robbie needs
a lunch every day. So Friday he needs his speech thing.
It's that kind of thing too, trying to remember which day it
is... it sounds dumb really, but when you are trying to get
out the door and trying to remember the things you need for

school that day...”

74

They also had to figure out who could pick up the boys
for their different activities each day. Beth continued,
”...and then, you know, before we go, it's who's going to
pick them up, 'cause it isn't a standard I always pick them
up or Eric always picks them up. It is during hockey. I
never pick them up during hockey, but when hockey's not
going, then either one of us might be the one that has a
teacher meeting or whatever." Try as they might, they did
not always manage to get the boys to the activities they
would have liked, even though some of their babysitters and
their extended family members were willing to transport when
possible. Robbie, for instance, would have gone to a swim
class for asthmatics, but Beth and Eric couldn't figure out
a way to get him there on time, all the way across the city,
three days a week right after school.

Getting out the door, Beth left first with Tommy, who
was dropped off at his babysitter's, about two miles away,
on her way to work. Eric stayed to lock up and to get
Robbie off to his babysitter's where he waited for the bus.
Once Eric left, before he headed for his school, he went by
the babysitter's house to make sure that Robbie was there,
”and to make sure that he hasn't missed the bus too... the
bus goes by at 8:10, but sometimes it does go by a little
bit earlier and a couple of times I've had to bring him to
school." With Robbie's asthma, which the cold weather sets

off, "we can't let him stay out."

75

After any afternoon activities, evenings in the Bradley
household might have included watching TV, getting the boys
to bed, going to a meeting, or doing whatever else was
needed. Once a week, however, right after supper, the whole
family went to the YMCA for a basketball game. Beth
coached, Tommy and Robbie played, and Eric watched and
cheered. One cold Tuesday in mid-January, I accompanied
them. The evening started with a quick supper of pizza and
milk, and then a drive to the Y. Parking was usually a
problem, but this evening a spot was available near the
building. Inside the Y, it was crowded, a kaleidoscope of
color and activity, with many people moving about, talking,
standing. Beth led the way, moving among the people, and
turned back and commented: "Isn't this chaos?" Many folks
carried winter clothing, hats, mittens, coats, and scarves.
Adults held children by the hand or the hood of a coat.
People stood in the doorway to the basketball courts,
looking toward the game in progress or turning around to the
direction of the hall. In the crowd, an adult said: "Move
here so you can see better,” to a child standing behind a
taller person. Another adult wiped a child's nose with a
tissue while a third moved to the bulletin board, put a
finger up on a green sheet labelled "Schedule" and said:
”Let's see, where do we have to go?" The Cherokees in
yellow shirts with black letters played the Navajos in red
shirts with the white letters. Tommy and Robbie's team was
the Cherokees, who were ages 5-7; Tommy pronounced it

"Churkeys." The Navajos were age 7 and older.

76

Beth led the practice for the Cherokees, which began
promptly at 6:15. She talked to the team, five boys and two
girls, giving each child some individual attention in the
forty-minute practice. She demonstrated as she talked,
passing and holding the ball. She took a child aside from
the group, put the ball on the floor, knelt on one knee,
hand on the ball and said: "If you see the ball and no one
has it, what do you do?" The child replied: "Grab it."
Beth, nodding, agreed: "Grab it." To another child, she
said: "Hug the ball to your chest," and held the ball with
one hand on each side, against her chest.

Eric sat on one of the benches lining the wall, and
moved around talking to other spectators. A hearing-
impaired child from Eric's class came into the gym and ran
over to Eric, smiling. Eric said "Hi," gave him a big
smile, and helped him off with his coat. The basketball
game was twenty minutes long. Tommy ran, smiling, his
individual gait noticeable on the court, his right foot
turning in as he moved. He followed directions to "run down
there, Tom." He ran when the group ran. Sometimes he
looked in the direction of the ball, sometimes he looked
around him. Once he waved to Eric who waved back. A little
later, he ran over to Eric, got a hug, and ran back on the
floor. He used his right hand, holding the ball with two
hands, and shot baskets with his left hand. None of these
shots went into the basket. Robbie was involved in the

game, watching the ball, catching it, running, passing or

77

shooting. There was a lot of noise during the game --

feet pounding as the team ran down the court, referees
blowing whistles, and spectators laughing, cheering, and
talking. After the game, the activity continued with some
children running around the court, bouncing a ball, and
shooting baskets. Beth and Eric got the boys into coats,
hats, and mittens, and then talked with other adults before
leaving. It was very cold in the car on the way back to
their home. The thermometer on a building near the Y read
-10° F.

Their days may have started out in a hectic manner, and
included quick suppers and active games, but they ended up
in a quieter fashion with a read and a snuggle. This
evening's bedtime routine at the Bradley's included the boys
getting a drink of water, and putting on pajamas, then Eric
and Robbie read together as did Beth and Tommy. In Robbie's
room, Robbie read to Eric, then Eric read to Robbie. Eric
sat on Robbie's bed, with his arm around Robbie as he read,
listening. Robbie hesitated ever so slightly before reading
the word "another"; as he said it, Eric said "Hooray!” Then
Eric told Robbie a story he "learned at school," doing ”Mary
Had a Little Lamb" in sign language. Upon Robbie's request
for ”another one," Eric signed ”There Was An Old Woman.”
Meanwhile, in Tommy's room, Beth and Tommy snuggled together
under the covers looking at and talking about a Berenstain
Bears book. Tommy mentioned the ”shivering" bears, and said

it was ”scary," his eyes widening as he said the word. The

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sounds of Eric singing to Robbie could be heard from the
other room. After the story, Beth kissed Tommy "on my
eyebrows,” ”on my hair," "on my nose," as he requested each.
Beth asked him: "What if I run out of kisses? Let's see."
She ended with "open your hand and I'll give you a kiss."
He opened the right one, then the left and got a kiss on
each. As she finished, Tommy asked if she ran out and she
said no, that they never ran out because they loved each

other.
Dealing'with.Difference

So, it seemed that their days were busy, filled with
activities, much like any family with young children, except
for the therapies. Although life was busy, it was never
”too much." They just did what their children needed. Beth
said, "I think the thing is to try to make everything as
normal as you can. I don't really see that what we do is
any different. The nature of Tommy's handicap makes that
possible." Eric added, "whatever you do with Robbie, you do
with Tommy. I think we're fortunate because Robbie is the
older one and Tommy sees everything that Robbie does and his
goal is to do it and he does it." They have pushed to do
everything they can for Tommy. Eric thought it might have
lseen harder if there were more years between Tommy and
Robbie. Since they were both so similar, they would do the
same activities. It would be different if Tommy were born

first. Since Tommy wanted to do everything Robbie does,

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they let him try it. If that failed, Eric said, they would
do something else. They just "don't see it as a problem."

They were parents, then, quite a lot like parents of
nonhandicapped children. They just saw themselves doing
what "every parent does in a way." Part of the reason Beth
and Eric saw themselves as a family like any other family
may have been the way they viewed Tommy's handicap. Eric
said, "I don't think we treat it as a handicap; we don't
allow ourselves to. It might be different if you did."
Tommy's handicap was a mild one, he pointed out, and not as
much of a handicap as it could have been. In many ways,
Eric pointed out, "he's so capable of doing everything."
Early discovery of the handicap, having good services
available, a lot of hard work with Tommy, Robbie as an older
brother, and Tommy's personality were things Eric listed
which have helped to make him so capable. All in all, his
problems were "not so bad.”

Robbie's asthma was, they thought, in some ways, "more
of a handicap" than Tommy's. Eric thought they had adjusted
to Tommy's needs over time. Beth pointed out that they knew
what to expect with Tommy. He had had a stroke, they knew
the damage had been done, and there was no reason to think
he would have another one. They saw themselves as "cleaning
up the mess." Robbie's asthma was different, they never
knew when he might have trouble with it or just what might
set off an asthma attack. His asthma was more unpredictable
than Tommy's handicap, and they were still learning to deal
with it.

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For all their being in many ways like any family, with
all the support they have, and with their efforts to treat
Tommy as normally as they can, there were still some very
real things they had to deal with because of the handicap.
One of these was helping Tommy understand his handicap. At
the time of the research visits, Tommy had just begun asking
about his hand; he had never asked about his speech or his
vision. Up to that time, he had just understood that his
hand was ”no good. It doesn't work." Beth talked about
answering Tommy's questions, which might come up as they
were driving to the supermarket. It was hard helping Tommy
understand that, despite all the hard work, his hand would
never be totally good, which Tommy said was ”not fair.”
Beth noted that you try to have an objective conversation,
while "inside you're so emotionally upset you could drive
into a tree." The parents told Tommy they didn't know why
but he had a stroke at birth, and that it could have been
worse.

The Bradleys did wonder why for a long time, and also
tried to figure out if Tommy's stroke could have been
prevented. As Beth said "babies are supposed to be fine,"
so "you look for a reason." Was it someone's fault?
Lacking any other answer, they finally came to consider it
"an act of God," said Eric, "you can't prove it any other
way." Eric also added that this answer "leads back to the
question: 'Why him?'," which of course doesn't have an

answer either.

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Working through the "Why?" questions, there were other
emotions to deal with along the way. Both Beth and Eric
were very involved with Tommy's treatment, but they
sometimes felt guilty about how much they did not do. For
example, when several professionals recommended exercises or
activities and time was limited, it was hard to do it all.
”You really just want to be Mom and Dad," Beth recalled,
"and not another therapist, and you have this guilt if it
isn't done."

Sometimes there were other reasons not to do what
professionals recommended. It was hard to go against what
an expert prescribed, but Eric related one incident where
they decided not to follow the advice of a doctor who had
Tommy on medicine to prevent potential seizures, even though
he had never had one. After using the medicine for some
time, they decided to see how he would do without it and
took him off it, without any problems.

Along with the guilt, there was frustration. Eric and
Beth recounted the frustrations they had lived with over the
years -- all the frustrations of the normal family plus
' problems with time and scheduling, and having to deal with
things one normally doesn't have to deal with in raising
children, like having so much "expert" consultation to sift
through to decide what is best for your child. This was
especially frustrating when the experts did not agree.

Though Eric and Beth felt that they had largely worked

through angry feelings about the handicap, they reported

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some angry feelings still surfaced now and then. Beth told
the story of anger surfacing dramatically and unexpectedly
at a basketball game when two boys were making comments
about the way Tommy ran. She had thought she had worked
such angry feelings through. Eric reported similar feelings
if he saw children "pick on" Tommy. They might also feel
angry if they saw other parents who seemed not to appreciate
the healthy children they had.

All in all, the Bradleys felt they had been fortunate
that services were available for Tommy. Things were working
well, and doing things with and for Tommy had become an
”everyday habit." The parents reported being happy with his
school program and with the specialists who were treating
Tommy, the neurologist, pediatrician, physical therapist,
and speech therapist. All the services they needed were
basically in place, though they had had to work to get
everything to this point, and they were still working at
that time to find a way for Tommy to get the weekly
occupational therapy he needed.

Beth and Eric saw that as Tommy grew, his needs would
change. Eric talked about how Tommy was doing all right in
gymnastics class at that time, but as the group advanced and
got into things which would require use of two hands, it
would be more difficult for him to keep up with the rest of
the class. Then Eric and Beth would look for something else

Tommy could do. They also anticipated the changes the

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coming year would bring as Tommy would be mainstreamed into
public school classes.

How did they decide what was best for Tommy? They
learned all they could about Tommy's needs, and then, they
said, they did the best they could. What they knew was best
for his physical condition was not always what they chose to
do. The weekly basketball game, Beth admitted, was not
really good for Tommy because it tightened him right up.

But the biggest thing was that Tommy loved to go to
basketball, and though it might have tightened him up, he
was doing what other kids his age were doing and that was
important too. To decide when the advantages of an activity
outweighed the disadvantages, they said you "go with your
gut," "you guess," you "hope for the best."

These parents had encountered and worked through
feelings of guilt, frustration, and anger. While admitting
that some of these feeling still surfaced now and then, Beth
and Eric felt that, basically, they had accepted the
handicap. Beth said "you go through: 'This is not
happening', 'Why does this have to happen?‘ 'It's not fair'
to 'Now what do we do?'" She called acceptance "a gradual
kind of a thing... up and down." And she added: ”I don't
know if you ever really accept it when it's your kid." Beth
said she also occasionally wondered about "the kid that
would've been” if not for the handicap.

Despite the hardships, Beth, Eric and other family

members were able to see some benefits to having a

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handicapped child. Beth listed several benefits: With a
handicapped child, "you find out who your friends are,” and
as with any stress, "you grew as a person." She also said
it helps you to ”find out how much you love, how intense
those feelings are." Eric said that the handicap had
brought the four of them together more, had made him and
Beth stronger, and had given them more opportunities to
travel and "meet a lot of people you wouldn't normally
meet.” Tommy's Uncle Jack thought his involvement taking
Tommy to therapy sessions when he was younger helped make
him closer to Tommy than he otherwise would have been.
Tommy's maternal grandfather thought it "brings you closer
all the way 'round,” noting there "definitely is a plus."
Beth offered what might be thought of as their
philosophy about the handicap: ”This is your kid, and you
can't help but love them the way they are, and their
disabilities are just as much a part of them as what they do
at school and how they give you a hug. That's them and you

can't disassociate it."
Qgestions of the Future

Eric and Beth lived with some unanswered questions.
Questions from the past -- Why him? Why us? What caused
the stroke? Did we have anything to do with this happening?
-- had been mostly resolved. If not answered, at least they
were no longer burning, bothersome questions. They also

lived with questions about Tommy's future -- How far can he

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go intellectually? Will he be able to live on his own, and
support himself? What will life be like for him as a

teenager? As an adult? These are the questions they

"dread"; they don't like to think about them. Eric thought
that all parents of handicapped children wonder about these
questions. The Bradleys said what they do is live "one day
at a time." It wasn't easy, but they were taking things one

step at a time.
The Carter Family

Sandy and Chuck Carter lived north of the Bradleys'
home, about twenty miles out from the city, in a community
of less than 500 people. They were busy with the very
different special needs of their young daughter, Krissy, and
with their older child, Chuck, Jr. Leaving the Interstate,
a long, curving road led to the Carter home, past long
stretches of trees and meadows, some houses and trailer
homes, past the sand pits and the cement plant, the town
hall and the dance hall, and finally past more fields. In
haying season, neatly-baled cylinders of hay dotted the
landscape. Immediately after this, on the left, the Carters
lived in a log cabin with an addition, set back from the
road by a circular drive.

Enthusiastic barking erupted as a young Husky in the
dooryard announced my arrival. Sandy Carter called out
something about his not being as ferocious as he sounded,

and invited me in. The front door of the log cabin opened

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onto the living room, heated by the wood stove to the right.
An unusual component of this living room, and that of the
whole house, was that electric outlets were placed up high,
well out of a young child's reach. Straight ahead, the
kitchen was connected to the living room by an open doorway;
an opening halfway up the wall between the kitchen and
living room offered an additional view of the kitchen. The
bathroom, to the right of the kitchen, had a lock on its
door, a piece of wood which slid over to prevent its being
pulled open, because "Krissy gets in there.” On each side
of the addition to the far right was a bedroom.

The Carter family was a bit like the Bradleys, a family
with two parents and two children, two pets —- they had a
cat as well as the Husky, and two vehicles in the driveway
outside. These families also shared a familiarity, born of
necessity, with the world of special needs. In contrast to
the Bradleys' life in the city and their two-career
lifestyle, however, the Carters were a rural family. At one
point they had kept animals -- goats, ponies, pigs, rabbits
and "little critters," said Chuck Carter, though they no
longer had them at the time of the research visits. The
Carters were also a more traditional family than the
Bradleys. Chuck described their roles: "Sandy takes care
of the kids and the house. I take care of bringing in the
money and what work has to be done."

Chuck Carter brought in the money with a job as foreman

of a construction crew; he had worked for the same company

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for thirteen years. In the winter time, he was usually laid
off for four months. During the layoff period, he did odd
jobs, whatever he could pick up: "I've done everything from
junking, cutting wood, working on cars, building houses. I
know a lot of things," he related. "I dicker, wheel and
deal in animals, cut a little pulp for a guy... (I'm)
unlimited in what I can do." He told how he liked to tinker
with vehicles, perhaps buying a car or motorbike cheaply,
fixing it up, and selling or trading it for something else
the family needed. He managed to keep the family vehicles
going most of the time. Chuck was interested in outdoor
things -- camping, hunting, boating. After work, Chuck
tried to ”spend half hour or so" with Krissy every evening,
playing tickling games or just the rough and tumble that she
liked, saying that she was "fairly rugged.” He and his son,
Chuck, Jr., liked to play cards or do something outdoors.
Sandy Carter was the kind of person to whom people
turned when they had a problem; even growing up she had been
a "giving, thoughtful, compassionate, caring" person, said
her mother. People often told Sandy she should be a
counselor -- ”if anyone has a problem, they call me," she
said, "I will listen when they talk to me." Sandy was very
involved in Dissatisfied Parents Together, a group which was
trying to improve parents' awareness that the DPT shot
(diptheria, pertussis, and tetanus) given to their infants
and young children "can cause encephalitis, brain damage,

death, learning disabilities." Sandy knew this in a very

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personal way -- her daughter Krissy was a "perfect baby"
until the day at the age of ten weeks when she received her
first DPT shot. Krissy reacted with a grand mal seizure and
resultant brain damage, slow progress in learning, and
continuing seizures only partially controlled by daily
medication.

Family activities were of great importance to Sandy,
things like camping weekends, even though she said it took
her "two days to get ready to go away for one." The Carters
had just managed to get a camper at the start of the
research visits, and since Krissy was doing better at that
time, i.e., her seizures were more under control, they were
able to do some family camping. The year before, said
Sandy, whenever they went anywhere, Krissy would start
seizing and it was easier to stay home. The family also
enjoyed snowmobiling in winter, and visiting and doing other
activities with close friends. Most of Sandy's world
revolved around her family and friends. Although she was a
full-time wife and mother at that time, she reported that
she was thinking about a part-time job when Krissy was in
school full-time. Sandy's life was busy; "we run
constantly,” she said. She believed in giving her children
a lot of attention: "Both my kids are spoiled rotten," she
said. She devoted most of her time to keeping up with the
needs of her family.

Krissy Carter, who turned five during the research

period, was her mother's constant companion, "a special

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little girl," said her maternal grandmother; a normal sister
-- an everyday pest," said her brother. He elaborated:
"She rips my books, gets into my stuff, climbs up on my bunk
and pulls my hair." Sandy described her daughter as a
snuggly child who loved to cuddle. Because of her handicap,
Krissy had some days when she did not function well. There
would be little eye contact, and her balance would be off,
”like she was drunk" described Chuck. Those were the times,
Sandy said, ”it's difficult watching her go through this."
But, sometimes, she looked at you, and you could tell that
she understood and was making connections. On her super
good days, said Sandy, Krissy was bright and happy and
laughed and "you wouldn't know it's the same kid."

Krissy's schedule was as busy as Tommy Bradley's.
Three days a week, she went to a preschool program, if she
was healthy and had transportation. Usually her mother
drove her to school and back. Transportation could be a
real problem; if Sandy's car was not working, as sometimes
happened, she might not be able to get Krissy there. Krissy
also received weekly physical therapy, as part of her
preschool program, and weekly speech therapy. Sandy got
Kris to these sessions, and also continued relevant
activities at home as much as possible.

When I observed a typical day at preschool, Krissy
spent most of her time with the puzzles. Her teacher, Mrs.
G., said she "perseverates" with puzzles, and would not give

them up. Krissy took the puzzles to a small platform in the

90

corner of the classroom, pulled out some of the pieces,
fingered them, and put them back on the puzzle board, (not
necessarily in their right places). As she manipulated the
pieces, she moved about, getting on her knees on the
platform and bending over the puzzle, then sliding off the
platform, sitting on the floor, and bringing her face down
very close to the puzzles, then sitting up more and shaking
her head, making sounds all the while. Krissy's physical
therapist said Krissy had "rrr," her "motor sound” and
”aghr," her "playful monster" sound.

Sometimes, Krissy would invite an adult to come to her
puzzle corner. Mrs. G. described how Krissy would come over
to an adult, take the adult's hand and put it on the puzzle
board. Krissy did not interact very much with the other
children in the class. Mrs. G. said she did not participate
in group activities; she would not stay and would shriek if
made to come to group.

Chuck Carter, Jr. was a nine-year-old who seemed very
interested in many things. During the interviews with his
mother, he often listened so quietly it was possible to
forget he was there. At other times, he would "irritate"
his mother, moving in and out of the room and interrupting
her as she talked. When it was his turn to talk, he was
articulate about Krissy's seizures, about how he knew when
she was having one, and what he could do to help. He told
how Krissy one day took "a nose dive off the swings" out

back, and he ran in to tell his mother: "Krissy's seizing.

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She looks like a Smurf," which was how he described what she
looked like when she turned blue from a seizure which had
stopped her breathing. He said if she had a seizure when he
was alone with her, he would "put her on her side, hold her
hand, and talk to her... that's what my mom told me to do."
Chuckie was a fifth grader who liked to draw, play outdoors,
listen to his radio, (and really "crank" it), go swimming
and camping, play mini-golf, watch TV, and read mysteries.
Sandy said she tried to make sure Chuckie got some of her
time. With Krissy needing so much attention, it was easy to
feel like a "neglectful" mother with her other child.

As Sandy and Chuck have dealt with Krissy's special
needs, some people had been very helpful. Krissy's
pediatrician was described as "one in a million." Even
though he was the one who ordered the DPT shot, and even
though Sandy and Chuck were suing him, along with the drug
company, he had been very helpful and supportive. He was
"family." ”He's there when I need him," said Sandy. "I
wouldn't have made it through without him." They did not
let the lawsuit get in the way of their relationship: "Our
lawyers handle everything; we don't have anything to do with
it." In addition to the pediatrician, they had other
specialists -- doctors, educators, and therapists, whose
expertise was helpful.

Sandy and Chuck got personal support from other people
who "have been there" for them. This included close friends

who were "helpful" and "involved." When she needed to talk

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to someone, Sandy turned to her best friend, Teri. Teri's
husband, Will, was Chuck's best friend; they had "been
through a lot with us," Sandy said. They were "like
family."

Chuck came from a large family which included 32
siblings and half-siblings from his parents' multiple
marriages. They were not a close family at all; he and
Sandy had little contact with either of his parents or with
most of his brothers and sisters. There were "hard
feelings" between Chuck and some of his family members, said
Sandy. Chuck said visiting his father was "a bad scene,"
and his family members ”don't come up here." His mother, in
particular, found Krissy's seizures difficult to tolerate.
Chuck told how, when they went to visit, his mother would
say: ”Don't let her have a seizure here." She had seen
Krissy have one and it scared her "right to death." Chuck
admitted it was difficult for most people to watch a
seizure, and even their good friends would usually "head
out" when Krissy had one, after making sure that they did
not need anything like a ride to the hospital. But, he went
on, seeing a seizure didn't keep them from stopping back by;
they just didn't want to stay and watch.

Sandy described herself as not being close to her
father, who lived in another state. She did not have much
contact with him. Some of Sandy's family were more involved
with them. Sandy would bring her children to visit her

mother, even though, as her mother admitted, seeing Krissy

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seize ”still frightens me" because she was afraid Krissy
would not come out of it. Sandy's mother said she felt so
helpless seeing Krissy so drained after a seizure. "How
much can a little body take?" she wondered.

Sandy's mother described Sandy as a "fighter" for
Krissy; she believed Krissy wouldn't be alive if Sandy
hadn't fought for her. She said Sandy's attitude had been
”tremendous" and had helped all of them. She said Sandy
believed that "some children are worse than Krissy” and that
they had to take it "one day at a time."

A back problem made it hard for the grandmother to care
for Krissy. When Krissy was young, she would take her
overnight, but Krissy had become ”so heavy for me to lift,"
she couldn't do that anymore. Also, with the distance from
her home to Sandy's and no reliable transportation, she said
she couldn't even drOp by to "relieve Sandy a bit” as she
said she'd like to do. In some ways, she felt as if she had
"let Sandy down."

Sandy had some contact with both her sisters, but Linda
was the only one really involved with Krissy. In the past
several months before the research visits, Linda had become
more able to take care of Krissy during the day, which had
enabled Sandy to take some training in which she was
interested. Sandy said Linda was "great... if I needed
something, Linda would definitely be there."

Sandy and Chuck also had neighbors who would help out

in a pinch, as when Sandy was out driving and the truck

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broke down, and her neighbor left a birthday party to stay

with the children while Chuck came to get her.
History of the Handicap

Krissy's special needs began when she was given the DPT
shot. Before this, she was healthy. Krissy's Aunt Linda
described her as "a beautiful baby, she was perfect. She
would play -- you could tell she was absolutely perfect.”
Krissy's maternal grandmother used the same word, "perfect,"
to describe Krissy at birth and before the shot.

Sandy remembered the day of the shot: "The way that
she screamed, it was horrible. I never heard a baby cry
like that. Five minutes after the shot, it hit; her brain
started swelling. I never heard anything like that; it was
like a wild animal." Sandy's mother, who accompanied Sandy
and Krissy to the doctor's office that day, said: "I will
never forget as long as I live, and I don't think Sandy will
either. I heard the baby scream, and I said it before and
I'll say it again,... a full-grown man couldn't have
hollered any louder than that two-month-old baby did when
she had the reaction. It was immediate to the shot and
there was a nurse that was putting the files away, and she
stopped... turned around and looked.... she was perfect up
until then, there was no problem."

Krissy had an allergic reaction six hours after the
shot, according to a note in her treatment file. Sandy

later thought that Krissy had gotten part of a "bad batch"

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of pertussis, which hadn't been refrigerated when the truck
carrying it broke down. Sandy had learned that many
children had reactions about that time. She thought this
caused a "more severe reaction -- almost like giving her a
poison."

Chuck remembered this first seizure well: Sandy told
him Krissy's leg was jerking and said, "come feel her leg."
He thought Sandy was "foolish," and thought it "might be a
muscle spasm," but he couldn't hold Krissy's leg down.
"This is a two-month-old baby," he noted, "and I couldn't
even hold it still because it was jerking so hard... I'd
never even heard of a seizure. I knew nothing about it....
it scared me.” They called the ambulance -- living way out,
he said, ”we call and say 'meet us at the Store', then we
get into the car and head down there.... It saves them from
coming way up here.” After getting Krissy and Sandy into
the ambulance, Chuck took Chuckie, then age 5, to his
maternal grandmother's before he himself went to the
hospital.

Since that night they have learned a lot about DPT and
about seizures. Sandy had wondered if the seizures were
related to the DPT shot, but was told they were not. For
two years, as they tried to figure out what was wrong with
Krissy and why she had these continuing seizures, Sandy
mentioned the reaction on the day of the DPT shot to the
doctors, but no doctor would say it was related to the shot.

Sandy knew that it was. As her sister Linda said, "a mother

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always knows" these things. Later Sandy had learned,
through her work with Dissatisfied Parents Together, that
the first sign of a DPT reaction was the scream.

Accepting and dealing with Krissy's special needs was
hard for them all. Linda said it was really "frustrating to
see her, knowing she was perfect before the shot.” Sandy's
mother said "the hardest part is having to see her go
through this.... she was so perfect before, so hard to
accept,... we had her for two months a perfect little girl."
She also remembered that, at the time that it happened, "it
seemed to me that the thing I'd feared most ... had
happened." Chuck described dealing with the handicap as
”difficult." Sandy told how when she saw Krissy try to do
something and she couldn't "it hurts me worse than it does
her.” Sandy also related how hard it was to watch Krissy
”go through this and feel so helpless." Sandy's mother felt
some of this for Sandy, saying: "Seeing Sandy go through
this is almost as hard as seeing the baby seize.... As a
mother, you'd like to take the hurt away but you can't."

Sandy and Chuck had different styles of dealing with
the handicap. Sandy said, ”it helps me to be involved"; she
thought that Chuck had pulled back from it, saying he
”blocks a lot of it out." Chuck described himself as being
able to do for Krissy whatever she needed, but he preferred
to stay in the background. He said, "Sandy usually handles
that part, and I'd just as soon she did." Sandy said she

tried not to worry about things because "if I let every

97

little thing bother me, I'd go crazy." Chuck, she said, did
worry, about money, the vehicles, the house, but she coped
"by not letting it bother me."

Krissy's progress since the early days had been
sporadic. It seemed she could make progress when she was
seizure-free, but many things could induce seizures that her
daily medication of Mysoline, Tranxene, Diamox, and Vitamin
B6 did not control. It was hard to prevent the seizures, or
even to predict when she might have one. Seizures could be
triggered by ear infections, a change in body temperature
(from taking a bath), being overtired, a change in
medication, or perhaps nothing at all. Although Krissy had
a lot of temper tantrums, these tended not to induce
seizures.

Sandy said that seizures could be any of several types.
With a localized seizure, one part of the body seized, like
the stomach, eyes, hand, one side of body, just the legs,
just the arms, or just fingers. With a myoclonic seizure,
the most severe type, the whole body went spastic. Once,
when Krissy had one, it threw her 3 feet through the air.

In a tonic clonic seizure, the arms and legs moved, the
tongue clicked, and the eyes rolled back. A Jacksonian or
jacknife seizure contracted the body, the left leg turned in
and, she said, "the kids just fold." A petit mal seizure
involved little movement and only lasted a few seconds.

With a focal seizure, the child would just stare, with eyes

glossy, and the tongue would click.

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Reports in Krissy's treatment file were helpful in
tracing Krissy's history. A report from a hospital in
Newington, Connecticut, where the Carters sought treatment
when she was almost age two (July 1983), described her first
seizure as beginning with tonic clonic movements of the left
hand which progressed rapidly to a generalized tonic clonic
seizure lasting one and one-half hours and requiring
Phenobarbital to break the seizure. It went on to say that
sometimes her seizures "are generalized though she also has
both left and right sided focal seizures beginning in the
upper or lower extremities remaining localized or becoming
generalized.”

According to a speech center report in October 1984, in
the past, Krissy had had up to 40-50 seizures daily. This
same center also reported that even as recently as September
1985, (age 4:1), eight months prior to the start of the
research visits, Krissy was having approximately three grand
mal seizures a week.

At the time of the research, as Krissy approached the
age of five, she could walk, but not talk, and she was not
toilet-trained. According to a report of a developmental
evaluation done at the preschool in February, 1986, at age
4:6, Krissy's cognitive and language skills were about 11-16
months. In self-help skills, Krissy could feed herself
finger foods, drink independently from a cup, and take off
her shoes, socks, and pants by herself. Her gross motor

skills were about 19-22 months and, the report added, "the

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quality of her movements is very dependent on her level of
medication. She becomes unstable and falls easily when her
medication levels are increased." The levels had to be
increased, of course, when she was having an uncontrolled
seizure. Sandy reported Krissy's balance could be off for
several days after a seizure.

On the plus side, the preschool program report listed
some of Krissy's strengths: She liked to explore her
environment, she was responsive to the clinician; she was
affectionate. An earlier report from the same agency also
cited her "supportive, involved family" as a strength, as
well as the fact that she made more eye contact and had
better balance when her seizures and medication levels were
controlled.

Sandy felt that Krissy could make good progress in her
development in her seizure-free periods, though it was hard
to keep her seizure-free. Sandy thought the real damage was
done by the encephalitis, the swelling of the brain, from
the DPT shot and by the great deal of medication she was on
at eight months of age, which arrested her progress. Krissy
lost a lot of time then due to seizures and to being so
drugged she couldn't function, but she was doing better at
the time of the research visits.

A March 1986 letter from Krissy's pediatrician, written
when Krissy was age 4 years 7 months, stated that Krissy's
seizures were better controlled in the previous year,

although she still had times "when she does not seem to be

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ill and when (blood) levels are okay, when she still has
difficulty. Interspersed with these bouts of increased
seizures are sometimes several weeks of good development and
progress without any seizures at all." He added that
Krissy's mother persevered through these times and found
encouragement in her progress.

Despite Krissy's progress, one continuing problem area
was getting respite care for Krissy. For the previous year,
Sandy related, they "could find no one willing to watch
her," so she and Chuck could go out together now and then in
the evening. None of their close friends would ”dare to
take care of her.” Sandy's mother was good with her when
Krissy was young, and would care for Chuckie when needed,
but had not felt able to care for Krissy since hurting her
back. Krissy's 64 pounds made it difficult for her to lift
Krissy.

Sandy's sister Linda could take care of Krissy
sometimes on weekdays, but Linda was busy with her family
and her part-time job in the evenings and on weekends, and
so was not available for babysitting at those times. Even
Linda had been unavailable for babysitting until a few
months before the research period. Linda used to live quite
a bit further away from Sandy, and the needs of Linda's
young twins had demanded most of her time. Sandy's
pediatrician did locate an older woman experienced with

seizures and willing to sit for Krissy and Chuckie in time

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for Sandy and Chuck to go to celebrate their 11th wedding
anniversary, which occurred during the research period.

The lack of respite care had been a problem for them
since the beginning. At first, it was hard, "we was
fighting and arguing," said Chuck, "because we couldn't go
out and party like we used to." But, over the years, he
continued, it had become "what are you gonna do tonight? I
know what I'm gonna do, sit home and watch TV, like I do
every other night." Sandy thought the lack of respite care,
the tension, having ”no time together," was at one point
"almost ruining our marriage." She and Chuck separated for
ten days at that time. "I think," she said, it "built up
and up, I was busy all the time.... Not being able to go
out was a big factor" in those kinds of problems. Despite
this brief separation, one of the things Sandy appreciated
about Chuck was his "being there when we need him.”

The lack of respite was only one of the things they had
to adjust to over the course of the years with Krissy. They
also had to learn to take care of her very special needs.
Sandy said she learned by watching the specialists work with
Krissy, by asking questions and by listening. "I asked a
lot of questions, everything that was done to her, I wanted
to know why. Why are you doing that? Is it time for that?
What will this tell you? I didn't care if they were turning
her over to take her temperature... I've asked questions
since day one. If I don't like the answers, I go

elsewhere."

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She learned to work with Krissy on a daily basis to
improve her speech, language, and physical functioning. She
learned to give Krissy daily medication to prevent the
seizures and shots of Phenobarbital to stop ongoing
seizures. Originally the pediatrician did not want Sandy to
give shots at home, but, she said, ”I insisted on having
needles at home, living out here." It was hard, Sandy
admitted, to think of giving Krissy a shot, knowing it hurt
her. "It's a horrible feeling giving your kid a shot,” she
said. Sandy learned to inject the needle by trying it on a
grapefruit, and then on the animals. Then it took some
practice to be able to inject the needle into her jerking,
seizing daughter. Before giving any shot, Sandy always
called the doctor to describe what Krissy was doing, and to
confirm that a shot was needed.

Though it was "scary to do,” and she was "still nervous
about it,” Sandy said, "I knew what I needed for her."
Though it was hard to learn about the shots and how to
figure out what to do and when, and learn to give medication
and all the other things, Sandy said ”it all seems so
natural to me now.” Chuck echoed these sentiments, saying
at first it was "scary,” dealing with Krissy's needs but it
had become "regular daily routine."

”Dealing with the doctors and the nurses was a real big
thing,” Sandy recalled. "You know, if you go in and you
don't know anything, and you just let them take the kid away

from you, and take her into the little room, and they tell

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you to go out and sit in the waiting room, and stay there,
you're fine. I don't do that, and I had a real hard time
for them to understand that she was my child.... I know more
about that kid than anyone else does.... and that was a real
hard thing for me to get across to them, that I knew what I
was talking about, I should have been there and I wouldn't
get in the way." She said she finally put her foot down and
got assertive enough to tell them that "this is crazy, I
belong in there,... this is the way it'll be, and if you
don't like it, fine, we'll go elsewhere.” So she learned to
be assertive, a real change for her: ”Believe it or not, I
never used to say 'boo'. People would tell me to do
something and I'd do it. Since I've had this with Krissy,
I'm very assertive.... If it was for myself, it'd be
different, but she can't defend herself."

Chuck seemed to have largely left the learning from the
doctors to Sandy; he listened and he learned from her. He
said, ”I don't talk to them that much... I'm kind of back in
the shadow. I stand back and I listen, see, and then if I
don't understand what he's saying, usually I just ask
Sandy... I just say 'hey, what the hell'd he say?’ and she
tells me." He went on to say if Sandy didn't understand
something the doctors were talking about, "she comes right
out and says 'hey, slow down here, and talk English'... and
they do." Sandy not only could talk to the doctors and
understand many medical terms, she could read doctors'

reports and records: "I can read the doctors' notes as well

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as they can," she said. "I insist on getting the records,

the reports.”

Daily Routine

What was it like to have to give medication and shots
and deal with doctors and nurses on a regular basis? What
was it like to live with, and work with, and love this child
with very special needs? With all that had to be done, a
day in the life of the Carters was busy. Sandy described a
typical day, which began at 5:15 a.m. with Chuck getting up
for work, and Sandy getting up to make breakfast for him.
Once he was off, at 6:30 a.m., she would go back to bed for
an hour until it was time to get Chuckie up and off to
school. People would tell her Chuckie was old enough to do
for himself in the morning, to get ready for school, but
Sandy felt "he's had to take a back seat too many times,"
because of Krissy, and he still needed her. "Morning is his
time, he gets my full undivided attention. He likes that,"
she commented.

Sandy got Krissy up about 8:00 or 8:30 to get ready for
preschool, three days a week. While Krissy was at
preschool, Sandy ran errands or visited with the other
mothers and had coffee. Later, she and Krissy might go to
her sister, Linda's, for lunch. Twice a week, they went on
to Krissy's speech therapy session, always planning to be
home for Chuckie who got off the school bus at 2:45 p.m.

This schedule was different in the summertime.

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At home, Sandy worked with Krissy on various
activities, catching Krissy at "a good time" during their
day together, fitting exercises in along with daily tasks.
To work on language, she would get out some Polaroid
pictures of family activities, and sit with Krissy to look
at them, saying things like "point to Daddy." Sometimes
Krissy did.

Bath time was a favorite time for Krissy and Sandy.

One warm August afternoon, I was invited to observe. Sandy
ran the water for the bath, put in several floating toys and
got Krissy, telling her it was time for her bath. As Krissy
got in the tub of tepid water, Sandy asked: "Is it too warm
for you?" Sandy mentioned to me that Krissy preferred an
ice cold bath. During the bath, Sandy got Krissy's
attention, made eye contact, (one of the things they were
working on), and smiled at her as she washed her. Krissy
smiled back. Sandy talked to her about body parts and about
what she was doing. After putting shampoo in Krissy's hair,
she told Krissy, who was rubbing her eyes: "It's not 'No
More Tears', Kris." Krissy put her face close to the
running water, then put her hand under it. She smiled,
making soft cooing, babbling sounds. She blew bubbles in
the water, turned on her back, splashed with her feet, and
manipulated toys with her hands. She made little shrieking
sounds, smiled at her mother when their eyes meet, and

giggled when Sandy washed her belly. It was a time they

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both enjoyed; Sandy said they often extended it up to one
and a half hours.

On days when they were home, Sandy said, the phone
would ring a lot; her mother, sister, grandmother, and
friends were regular callers. "Nobody calls me on the days
I'm regularly at school, they figure I'm not home," Sandy
said. But "Tuesday and Thursday are my days off, my
counseling days for everyone else." She also spent time on
her ”days off,” helping her friend Teri build a new house.
She and Teri ”do most of the work," while Teri's husband,
Will, who had a heart problem, supervised. Krissy went
right with her and would sit and play with the tape measure.
Sandy described her as being "real good." This experience,
”part of the daily routine" for them, would be helpful when
Sandy and Chuck began building their own new home.

These busy days ended calmly, if all went well. In the
late afternoon, Krissy would play, while Sandy would sew or
read or ”whatever -- that's my quiet time." Krissy played
with her father when he came home, and Sandy said, "we
usually have an hour or so, Chuck and I, when we can talk in
the evening." About 8 or 8:30 p.m., Chuck went to bed, with
Chuckie following about 9:00. Then Kris and Sandy would
read together, do puzzles, and other quiet things before
bed, which for Krissy was between 10:30 p.m. and 2:00 a.m.,
an improvement over three to four months before this time

when her normal bedtime was 3:30 - 4:00 a.m.

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Their more ”hectic" days might also include a visit to
the pediatrician, to the hospital laboratory for blood work,
or to the Emergency Room for treatment of a seizure that
would not stop. Sandy told what a "hectic" day was like:

It may really start the night before, with Krissy being
"clingy.” When this happened, Sandy dropped everything and
held her; ”if she wants to be held, I say the heck with
everything -- she's spoiled." Then Krissy might start
seizing. If the seizures were little ones and not too close
together, Sandy just watched her, not giving any extra
medication unless the seizures got worse. On such nights,
Sandy didn't sleep well. Then, Sandy said, "I oversleep in
the morning,... I rush around, throw my kid's clothes on
him, shove him out the door" to get Chuckie off to school.
Then she would begin to do her housework, running in to
check on Krissy, afraid that she's seizing.

”And then the phone starts ringing; it's always this
way,” Sandy went on. She then would shower, dress, and get
a cup of coffee. If Krissy began seizing again, Sandy might
decide to take her to the doctor, or the doctor might tell
her to go directly to the lab to have blood drawn, in case
they had to give Krissy Phenobarbital. The doctor usually
wanted to see what Krissy's blood levels of medication were
before giving her anything more, "to see if that maybe was
causing it." This monitoring of the levels of medication in
the blood was an important part of keeping Krissy

seizure-free. Krissy had a narrow range of blood levels

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which were good for her, too little and she would seize, and
too much didn't prevent seizures either. With too much
medication, shg got "toxic"; this affected her alertness and
her balance.

If Sandy went into the city to take Krissy to the
doctor's or to have blood drawn, her mother liked to go
along. With all that plus stopping at the supermarket for
her mother on the way back and helping her mother get her
groceries in, Sandy might barely get back home in time for
Chuckie on the bus. On these days, her housework did not
get done, something that she said "really bugs" her.

The pediatrician's office was like a "second home” for
Krissy, Sandy said, she had been there so often. Everyone
knew them, and they had a room they called ”Krissy's room"
which was the examining room that Krissy always headed for
when they went there. On the wall, there was a picture of a
cat that she liked. The pediatrician kept track of Krissy's
progress with frequent visits, spacing them out according to
how well she seemed to be doing. When she was staying
healthy and was free of seizures, she didn't go as often.

Sandy described how a trip to the blood lab had become
easier than it used to be. She said the twenty to thirty
minute wait they used to have was awful, until it was set up
that they could go right in. It had also become better in
that Krissy had to give less blood than previously. On a
Ihumid day in late May, I accompanied Sandy and Krissy to

Ihave blood drawn. Sandy told the lab technician to take

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"two micro-tainers" of blood; he left for a few minutes.
Sandy told me she thought he had gone to check how much to
take. ”If they don't know me, they usually check," she
noted. The scene in the lab was friendly: Sandy greeted
lab personnel she knew, and talked to a woman who came over
as she and Krissy waited for the lab technician. The lab
technician returned, saying, "I just wanted to check on
that." Krissy squirmed on Sandy's lap before the procedure,
but sat still as the technician began to take blood. Sandy
indicated Krissy's right hand and told the lab technician:
"Her right hand is warm; I've been holding it," a trick she
had learned that made the blood flow faster. Krissy did not
cry as her finger was pricked and the blood taken. The lab
technician called Krissy "a champ." Sandy talked, telling
him how long they had been coming, and that the lab reports
now were given directly to her. The Labs, which prepared
the reports, had it posted, she said, that they were to give
her the blood levels information over the phone. Usually
they don't give this information to parents, Sandy pointed
out, but she had had a problem with doctors on call not
knowing what a good blood level was for Krissy. If Sandy
knew the level herself, she could call in and alert the
doctor if necessary.

In the blood lab and with her own doctors, Sandy was
able to advocate for her daughter, do little things that
made the procedure easier, and talk easily with the

professionals doing the needed work. Her experiences in the

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Emergency Room had not been as successful. Sandy had
stories of Emergency Room visits when the personnel did not
recognize her knowledge and expertise about Krissy and her
needs, or even Sandy's right to ask questions and be
involved in what happened to Krissy there. Sandy had been
called a "pushy" mother. Sandy felt that some doctors did
not appreciate being told what she believed was best for
Krissy. Yet Sandy knew from experience that some things
were bad for Krissy, so she would not permit them. For
example, once Krissy was given Valium to stop a seizure, and
it stopped the seizure but also put her out for 36 hours;
they couldn't wake her up. Because of the medicine Krissy
takes, Sandy explained, Valium will stop everything,
including her breathing. It was to be used only as a last
resort, and only once Krissy had been intubated -- "they
need the tube in her throat and the respirator hooked up"
before they give Valium.

Sandy told of the time Krissy had a seizure at a
baseball game when Sandy, her mother, and Krissy went to
watch Chuckie play. Krissy began to seize. They waited as
long as they could, Sandy said, because Chuckie "misses so
much." But by the end of the game, it was clear that the
seizures were frequent and ongoing. When Sandy called the
doctor covering for the pediatrician, he told her to take
Krissy home, he thought she would be all right, and he
wouldn't come into the Emergency Room. When Sandy didn't

agree, he said, "if you have a neurologist, you can call

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him." The doctor covering for the neurologist also said
that he thought Krissy would be all right. At that point,
Krissy was seizing every five minutes for four to six
minutes, so Sandy decided to leave Chuckie with her mother
and go directly to the hospital.

At the hospital, a physician's assistant attending to
Krissy ordered Valium for her. Sandy said: ”No Valium."
The physician's assistant walked out saying, "the hell with
you." When the doctor arrived, he said he had treated
Krissy before. Since Sandy had never seen him before, she
knew this was not true, and she wondered if he knew she had
stayed with Krissy at the Emergency Room every time they had
been in. The doctor refused to take Krissy's blood level
before giving her medication, (something her pediatrician
always did), saying it "wasn't necessary." Sandy said the
nurses were great, but the doctors "resented" her telling
them what Krissy needed.

The doctor asked what they usually did. Sandy quoted
the dosage of Phenobarbital and said IM (intramuscular)
would do but it could be IV (intravenous). The doctor said
he was going to admit Krissy, but Sandy said, ”no you're
not," and explained that the seizures usually stopped 20
minutes or so after the Phenobarbital was administered.
After the seizures stopped, the doctor wanted to give Krissy
Mysoline, which was her regular medication. Sandy was aware
that Krissy reacts to slight changes in her medication, even

from tablet to liquid form of the same strength, and knew

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that the hospital did not keep Mysoline in the 300 mg.
liquid form that Krissy took. The doctor insisted that they
did have it in this form. When they brought in a pink
liquid in a cup, Sandy refused to let them give it to Krissy
because she knew Mysoline was white. The doctor told her
she had been difficult, "and now you're refusing medication
for your daughter."

This experience, which occurred during the research
period, was, according to Sandy, the first time in all their
visits to the Emergency Room that they did not have their
own doctor or one they knew, for at least part of the visit.
Despite these occasional difficult experiences, Sandy said
that she had no trouble with most of the doctors who knew

her.

Dealing with Difference

In many ways, the Carters were like an average family,
planning activities together, going places, doing things
they enjoyed. Sandy said she tried to treat Krissy "as
normally as I can.” She described taking Krissy to the Fair
with the other children, taking her to watch Chuckie play
baseball, taking her grocery shopping, and spoiling her when
she wanted attention as she had done with Chuckie. The
difference was, of course, their activities had to be geared
to respond to Krissy's special needs.

While trying to treat Krissy normally, there were many
things they had to deal with because of the handicap. With

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raising Krissy, Sandy noted, "every day for us is doctors'
appointments and physical therapy and hospital visits and
blood work. It's rough, it's completely different than just
normal. You don't realize how easy it is to have kids that
are normal, when you have one like this."

Not only was there dealing with the doctor's
appointments and the therapy, there were the hard decisions
to make. Sandy described one "terrible" time consulting
with a neurologist at a hospital in Portland when Krissy was
very young. Sandy felt the neurologist didn't want to be
involved with Krissy, especially when he refused to go into
Krissy's room at the hospital when she was seizing, saying
the nurses could take care of it. He told Sandy that Krissy
had a "scrambled brain" and should be in an institution
because "there is nothing you can do." Sandy could not
accept this advice, so she "fired" the doctor, and returned
home. Sandy said that she would never put Krissy in an
institution unless "it was bad for her to be home. I don't
consider her a sacrifice."

Even with doctors Sandy felt she could trust and work
with, she had found that sometimes they did not agree, and
she had had to choose which one to continue to see. "You
just don't know if you are making the right choice," she
said.

As Krissy grew, Sandy said she was still learning about
Ihelping Krissy develop. Krissy's babbling and lack of

speech were becoming more evident in public. Sandy had to

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deal with people who stopped her and said, "Isn't she
beautiful, why doesn't she talk?" "She looks completely
normal, what's the matter with her?" As Krissy got bigger,
Sandy realized she also needed to deal with feeding, potty
training, and social aspects of Krissy's development. Sandy
was glad she had gotten Krissy into a good public school
program for that fall, one of which she said: "I couldn't
have set up a better program myself." This ideal program
for Krissy included lots of space for her motor needs, a
number of children for Krissy to interact with, and enough
staff to give her individual attention.

Despite the hardships, Carter family members were able
to identify some benefits to having a handicapped child.

For Sandy, having a handicapped child helped you focus on
what was important in your life, and helped make you more
compassionate. Krissy's Aunt Linda listed several benefits:
being exposed to a handicap changed your perspective; having
a handicapped child in the family made you more
compassionate; and it was good for other children in the
family growing up with someone with a problem.

Krissy's maternal grandmother said that having the
child was the most important thing. It was a benefit just
having the child who gave a great deal of joy and happiness,
who taught a lot, gave a lot, loved a lot. She noted that
the fact that the child was making progress was exciting
after being told that she never would, saying "each

accomplishment she has is a milestone." This grandmother

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also reflected the family attitude about being glad to have
the child despite the handicap when she said: "Short of God
performing a miracle, this is the little girl we're going to
have, and love her as she is and appreciate the fact we've

got her."
Qpestions of the Future

And what of the future? Like the Bradleys, Sandy and
Chuck lived with some unanswered questions. They did not
know how far Krissy could go. Chuck said, it's "hard to
say" what the future would be. He said he was "in hope she
kind of outgrows it," but said that he "doesn't know" if
that would ever be or not. Sandy said she didn't know how
much permanent brain damage had been done. If they could
control the seizures and give Krissy a chance to catch up,
Sandy said, "I think she'll be OK," that is, able to take
care of herself. Sandy saw that Krissy was functioning and
able to use her mind after they had been told that she would
never be able to do anything. So, Sandy said she just took
it "minute by minute." It wasn't easy, but, as Chuck said,

"it's just life, it's the way we live."
Impressions of The Families

After completing the collection, coding, and initial
analysis of the data, my next task was to meticulously
review all of the collected data and the many memos

generated by the research activity, in order to delineate

116

the emerging theory. In doing so, more memos were
generated, some of which are more accurately called
impressions than theory. some of the impressions can be
organized into an outline of common characteristics of the
two study families, describing ways the two families
involved in the study were alike. This outline will serve

as a summary of this chapter.
Common Characteristics

Despite the fact that the two families in the study
were very different from each other, with different life
situations and children with different handicapping
conditions, they shared common characteristics which suggest
a profile applicable to some families with a young‘
handicapped child.

1. They were not handicapped families. They were
families who had a handicapped member, that is, they were
families first, and they also had a handicapped member.
They were much like other families; indeed they were more
like families with nonhandicapped members than they were
different from those families.

2. They learned how to deal with the expected demands
of the handicap, on a daily basis, so much so that most of
it seemed very natural to them. Even recurring medical
crises, for one family, became familiar, and something of a

routine.

117

3. They tried, despite all they needed to do to meet
the child's special needs, to have a normal family life,
planning family activities around the special needs. They
treated the handicapped child as normally as possible.

4. They learned to incorporate activities to address
the child's needs into their daily lives. Daily tasks with
the handicapped child took on special significance. In one
family, bath time became a special time to work on making
eye contact and improving language comprehension. In the
other, the adult family members were alert to ways to
encourage the child to open and use his weaker right hand.
Caring for the handicapped child was in many ways a
full-time job.

5. They were concerned about the welfare of their
other child, making specific efforts to include the other
child in handling the handicap as needed, in specific ways,
and making efforts to help the sibling feel like a special
person and a special part of the family too.

6. They were aware of and tried to plan, as best they
could, for their own and each other's needs, and for their
needs as a couple. In line with this, good babysitters were
important in their lives.

7. They made day-to-day decisions about what to allow
'their handicapped child to do, assessing things as a parent
\tho wanted what's best for the child and for the whole
family, as a person knowledgeable about this particular

liandicap, and as someone responsible for teaching the child,

118

as much as possible, to handle the handicap in daily life.
They encountered and assessed specific situations which
might trigger an episode (asthma, seizure) they wished to
avoid, and more ongoing situations which might have
far-reaching effects.

' 8. They were careful about the selection of programs
and services for the handicapped child, and careful with
their choice of doctors, nurses, and other professionals, as
much as these choices were available.

9. They received many professional suggestions and
prescriptions for what they should do with the child. The
professional input might require them to spend a good deal
of the limited time they had being a therapist for the
child.

10. They played many roles for their child -- parent,
nurse, teacher, therapist, chauffeur, advocate. It was hard
to be just a parent.

11. They spent time figuring out transportation
arrangements and doing a great deal of driving.
Transportation was important to them for getting the child
to needed services.

12. They learned the language and activities
associated with the handicap, the medical terms, the
procedures that must be endured, the equipment which was
used to diagnose and treat, and the specialists who must be

consulted.

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13. They had to make decisions about things important
for their child's and family's future, decisions sometimes
based on insufficient information, with unclear outcomes,
and sometimes with conflicting advice from involved
professionals.

14. They learned to become as assertive as they needed
to be to meet their handicapped child's needs.

15. They learned to live with unanswered questions
which may at one point have caused emotional turmoil, and
which still did bother them sometimes. These questions
included such things as: Why did it happen? Did I do
anything to cause it, or could I have prevented it? What
will the future bring? How far will my child develop?

16. They experienced anger and frustration but this
was not the dominant feeling which they expressed as they
told the story of their family lives.

17. They made changes in their lifestyles and in their
homes to accommodate the handicap, yet they made the changes
in ways that fit their lifestyle, to keep the things that
were important to them.

18. They had an active, clearly identified support
network.

19. They thought things could have been worse, when
they saw other children with different problems. They
celebrated each accomplishment of the handicapped child,

each small step forward.

120

20. They felt that this was their child, and the
disability was just as much a part of the child as
everything else. They said it didn't seem too much; this
was not a sacrifice. They just tried to do the best they
could for the handicapped child and their family.

This profile applies largely to the nuclear family
composed of the parents, siblings, and the handicapped
child. Other impressions culled from this review include
(a) similarities observed with grandparents and other
extended family members, and (b) thoughts on factors which
seemed to effect the total impact of the handicap on the
family. For more information on these topics, see
Appendices E and F.

Review and analysis of the data collected by interview,
observation, and interaction with these families, as
reported in this chapter, led to the development of grounded

theory which is described in the next two chapters.

Chapter 4. ELEMENTS OF THE EMERGING THEORY:
WHAT IS IT LIKE?

Introduction

The research questions developed prior to the research
and presented in Chapter I asked about the impact on the
family of having a handicapped child, changes required as a.
result of the child's handicap, the stresses and benefits
family members experienced because of the handicap, the
strengths of family members, and the fit of needs and
services. These were helpful to guide the initial research
and to get the families to talk about their lives.

As the theory developed, it seemed that the impact of
the handicap was in several dimensions and that the changes
required by the handicap, and the stress experienced by the
family members, were not static. Discussing these items in
answer to the original research questions would not bring
out their complex and changing nature. Therefore, answers
to the research questions have been addressed throughout
Chapters 3 through 5. Chapter 3 gave some information on
changes required by the handicap and on stress experienced
by the study families, and detailed some benefits seen by
family members. The other research questions will be
addressed within the context of the emerging theory.

The emerging theory, which is the focus of this chapter

and the next, answers the following general question: What

121

122

is it like to be part of a family with a young handicapped
child? It discusses the multiple dimensions of the impact
of the handicap and its resultant stresses on the family,
the process by which the family adapts to the needed
changes, and the importance of good fit of needs and
services.

The theory which has emerged from watching and
listening to these families includes several facets about
families' experiences as they encounter the handicap and
respond to its demands. The parents in the study were
giving the message very clearly that they were families
first, that they did the things that families do and they
tried to be good parents to their children. Supportive
family members said the parents were doing a good job of it.
This way of looking at the situation, that they are families
first, seems to be a good context for the developing theory.

What is it like to be part of a family with a young
handicapped child? It is probably safe to say that it is an
individual experience, not the same for everyone, even if
circumstances appear to be similar. Families are unique,
individuals are unique, and even handicaps which appear to
be similar may have very differing impacts on the child and
family. Yet, some of the elements are the same, in terms of
challenges encountered, obstacles overcome, and problems

resolved.

123

The theory generated from this research does not
attempt to explain what it is like for all families with
young handicapped children, but discusses how it was, or
seemed to be, for the families involved in the study. It
looks at themes and patterns which emerged in learning from
these two families, and offers ideas for understanding the
experiences of such families. What is true for these
families can be said to be true for some families with young
handicapped children and can provide a focus for looking
with more awareness at all families with young handicapped
children. Readers can choose which of the ideas are useful
in addressing their own needs for understanding.

The theory suggests there are multiple dimensions of
the impact of the handicap on the family, and that some
families go through a process akin to acculturation as they
adapt to the handicap and its requirements and become
‘knowledgeable members of the world of special needs. As
they acculturate, family members move towards establishing
consonance among themselves and between themselves and their
environment.

It is important to remember, as Glaser (1978) pointed
taut, that a theory is not a "fixed conceptual description"
(1:. 129), but rather an explanation of what has been
observed. The theory which emerged from the data collection
grows with new input. After the data collection, a review

Of relevant literature helped to develop further the theory

whiCh had emerged from the data.

124

The literature on families with handicapped children
and the impact of handicaps and chronic illness on families
includes research reports, clinical studies, conceptual
papers, reviews of the literature, and reports of personal
experiences. Limitations of the research have been noted:
Families with handicapped children have been described as a
homogenous group in the literature while in reality there is
a good deal of variation in family composition or structure
(Turnbull, Summers, and Brotherson, 1983) and in families'
adapting and coping abilities (Bailey, Simeonsson, Winton,
Huntington, Comfort, Isbell, O'Donnell, Helm, Unpublished)
which can influence the impact of the handicap on the
family. In addition, "much research has tended to be of an
atheoretical nature and to focus on variables in an isolated
fashion without regard for the way that they reverberate
intended and unintended influences on other aspects of the
family system" (Turnbull, Summers and Brotherson, 1986:

45). ‘
Foster and Berger (1985) observed that much of the
research was characterized by methodological and conceptual
problems. Gath (1977) echoed these concerns, citing
(:onflicting reports of effects on parents of caring for a
liandicapped child, no proper control groups, no objective
(flats, and "in addition, few studies distinguish between the
psychological effects of having produced an abnormal baby
and those of the practical burden of caring for such a

child" (p. 405). Green (1982) listed several observations:

125

Most research on families of handicapped is on the
mentally retarded; most research is on the families of
handicapped children; most research focuses on the
impact of the family's relationship to the handicapped
member rather than the impact of the handicapped person
on the family as a social system; nearly all the
research lacks a theoretical base for its hypotheses
and assumptions; the medical profession has attended to
the issue more than have other professions; most of the
research has been done in the U.S. or Britain. (p. 7)
In discussing research on siblings of the handicapped,
Seligman (1983) noted that "research in the area of sibling
reaction and adjustment to a handicapped brother or sister
has been regrettably sparse" (p. 148), and that the research
which has been done is quite variable and limited because
"results are neither confirmed nor denied by replications of
the original study" (p. 155).
Despite these limitations, the review of the available

literature served two purposes: (a) it uncovered additional

information with which to build and hone the theory, and (b)
it identified where the emerging theory fit in the body of
related literature. This review included areas which
Toffered information relevant to the emerging theory: the
«environmental context of the family; the areas in which the
llandicap impacts on the family; the separate world of the
liandicapped; the acculturation process; the concept of
consonance; the importance of family strengths; and family
adaptation to crises. For ease of reading, the
environmental context and the areas of impact of the

handicap on the family are discussed in this chapter, and

the other areas in the next.

126

Before discussing the impact of the handicap on the
family, a description of the environmental context of the
family, in which the acculturation process takes place,

provides a framework for the theory.
Environmental Context

An ecosystems, or environmental, perspective provided
the conceptual framework for this research, and does the
same for the presentation of the theory. An environmental
perspective embraces the importance of understanding
families within the context of their environments. The
family with a handicapped child exists within the normal,
everyday society of which they were a part before the
handicap came into their lives. They function as a dynamic
system within the context of other systems. The effects of
its environmental context on the family are an important
part of the family's experience of having a handicapped
child. In understanding the impact of the handicap on the
family, then, it is important to think about where family
members are in relation to their larger world as they cope

'with the demands of the handicap.

ggiterature

The family's environment includes "different aspects of
time world outside of the family unit" (Melson, 1983: 150).
TO put the family's and child's experiences as they adjust

to the handicap into a wider context, Bronfenbrenner's

127

(1979) model for looking at near and remote environments of
the developing person and how the two impact each other is
helpful.

Influenced by Lewin's phenomenological theory which
focused on the importance of an individual's perceived
environment in steering behavior, Bronfenbrenner looked at
human development and behavior as a function of the
subjective as well as the objective environment. He
conceptualized the environment as a series of nested,
interconnected rings, reflecting interrelated systems
involving the developing individual:

- the inner ring; the microsystem, includes specific
settings which contain the developing person. For a child,
the most immediate microsystem is generally the home and
family;

- the next ring, the mesosystem, contains microsystems
in which the person participates and comprises the
interrelations between them. The family, school or day care
setting, church, neighborhood, and the peer group are major
microsystems in the child's mesosystem;

— the next layer, the exosystem, contains settings in
‘which the person does not participate, but in which events
occur which affect or are affected by events in the
inesosystem or the immediate microsystem. Parents'
workplaces or social activities, siblings' classes, as well

as school board activities are in a child's exosystem;

128

- the outermost layer, macrosystem, contains the
overarching belief systems of the society, including
cultural and subcultural realities, public policy, and
societal attitudes and expectations as these affect or are
affected by the microsystem, the mesosystem, and the
exosystem.

Melson (1983) gave an example of how the layers of the
environment affect each other:

The educational system of a society (macrosystem)

affects the organization of the community schools

(exosystem), which in turn affects a specific child in

a specific school (microsystem). What goes on in this

school will be felt in other microsystems, such as the

home.... In summary, we may think of environment as a

widening circle of influence, from the immediate

physical setting to the cultural context. (p. 152)

Bronfenbrenner (1979) specifically talked about the
environment of the individual. Looking at the environment
of the family unit is much more complex as it includes "the
total number of microsystems involving the family" (Melson,
1983: 154). To apply Bronfenbrenner's (1979) model to
families with handicapped children, the immediate
microsystem for all family members might be considered as
the home and family. Family members' mesosystems, i.e., the
collective of microsystems or settings in which family
members participate, might include homes of relatives,
:neighbors and friends, the neighborhood in general, social
lgroups, church activities, professionals they interact with

1J1 various settings for needed services, community

activities, work activities, parent groups, stores.

129

recreation establishments, and restaurants. These settings
of family members may or may not include the handicapped
child, and may include one or several family members.

With the discovery of the handicap, exosystems of
family members would expand to include settings related to
their involvement with the handicap; they would still have
in their exosystems any parts of the environment they would
ordinarily have as a regular member of the community. These
additions might include the activities of policy-making
bodies of service agencies, schools, and hospitals, efforts
in their community to improve resources for families with
handicapped children, and training activities and
professional conferences of professionals who provide
services for them and their children. Finally, the
macrosystem of families with handicapped children would
include societal attitudes about handicaps, research on
children, research on handicaps, technological advances,
medical discoveries, and government policies regarding

services and payment for services to handicapped persons.
Summary of the Environmental Context

Bronfenbrenner's (1979) model of the ecology of human
cleveIOpment was described as a conceptual framework for the
emerging theory. The family is seen as having several
layers in its near and far environments. Family members'

collective environments expand with the discovery of the

130

handicap. It is within this broad environmental context

that the handicap impacts on the family.
Impact of the Handicap on the Family

For the child and family, dealing with and adjusting to
the handicapping condition is a multi-dimensional
experience, having impact in many realms. While these
dimensions are experienced in an interrelated fashion, it is
possible to isolate them to look at each more closely. The
theory emerging from the data collection identified four
dimensions of the world of special needs which families must
adapt to: emotional, cognitive, physical, and social
dimensions. The following description of the emerging
theory will discuss the dimensions of emotional, cognitive,
physical, and social impact in detail. Each section
contains a theory statement, specific examples from the
collected data which support the theory statement, a
consideration of how the literature adds to or supports the
theory, and a summary statement. A final section identifies
other dimensions of the impact of the handicap on the family

as suggested by the review of the literature.

Emotional Dimension

Theory. Emotionally, for families with handicapped
children, there is discovering the handicapping condition,

realizing what this means, and then adjusting to the

reality.

131

In discovering the handicap, family members may or may
not know why or even what is wrong with the child at first,
or for some time afterward. They simply respond to what
they see the child doing. It is a time of confusion, of
asking questions -- What? Why? How? -- questions which
need an emotional as well as a cognitive answer.

The emotional demands may be quite rigorous, as
families come to realize what the handicap means. As family
members discover that their baby isn't perfect, they
experience strong feelings, such as guilt, frustration,
anger, helplessness, and fear. They cope with emotional
difficulties, sometimes turning to a cadre of willing,
supportive listeners -- someone to talk to, someone who is
there for them. They move through the feelings toward
emotional acceptance of the handicap. Even once family
members have come to accept the handicap as part of their
lives, strong feelings still surface unexpectedly, and they
learn to deal with these. The need for good emotional
support continues. In some ways it may feel like the
handicap is something they can never really accept. They
work, at least, to arrive at an understanding and tolerance
of the handicap, so it is something they learn to live with,
and adjust to over time.

As the family adjusts to the reality of the handicap in
their lives, they begin to feel more emotionally settled,
despite the occasional ups and downs. Eventually, the

emotional turmoil of the early days quiets. Family members

132

strive for an acceptance of reality, but with a vision that
with effort there could be progress; they work towards a
better future. They move ahead, living with the questions,
including those about an unknown future, and taking each day
as it comes.

2355. How both families discovered and experienced the
emotional demands of the handicap was described in Chapter
3. For Eric and Beth Bradley, this discovery of the
handicap began when they noticed Tommy wasn't using his
right hand very much, and asked their doctor why. They
described themselves as going "from ignorance to ignorance"
in their search for answers. They did not realize it was
anything serious until Tommy was almost a year old.

As Eric and Beth began to understand and learn to
handle Tommy's handicap, they experienced and dealt with
guilt, frustration, anger, and other feelings which they
worked through, towards an acceptance of the handicap.
Acceptance did not come quickly, Beth called it an "up and
down" experience; Eric said it took "several years" before
they could come to understand and accept it. In all this,
family and friends were available, "there when you need
them," said Beth. Despite progress towards acceptance,
difficult feelings lingered. Anger, for example, might
surface unexpectedly in certain situations, such as when
Tommy was teased by other children, as happened
occasionally. Perhaps, as Beth suggested, in some ways you

don't "ever really accept it when it's your kid."

133

Over time, Tommy's handicap became a regular part of
their lives, as described in Chapter 3, but the future held
many unanswered questions: What will Tommy be able to do?
Can he be self-supporting? How can we be sure he'll be
all right? These are questions, Eric said, about which all
parents of handicapped children wonder. For the present,
they said, they were taking it "one day at a time."

The Carter family's experiences with the emotional
impact of the handicap were somewhat similar to the
Bradleys, although they were dealing with a different, more
severe handicap. Sandy and Chuck Carter's introduction to
Krissy's seizure disorder began when they took Krissy to the
hospital the first night she began seizing. Chuck Carter
remembered that, at that time, "I'd never even heard of a
seizure. I knew nothing about it." Sandy recalled that it
took two years for them to find out why Krissy was having
seizures. For all that time, no one would say the seizures
were related to the DPT shot.

The Carters reported how "difficult" it was accepting
and dealing with Krissy's special needs. Family members
described many feelings associated with the handicap, some
of which they were still experiencing. It was especially
"frustrating," as Sandy's sister pointed out, knowing that
Krissy was perfect before the DPT shot. Sandy said it was
hard to see Krissy seize, "and feel so helpless." Sandy's
mother admitted "it still frightens me" when Krissy seized.

When the need to talk to someone arose, close friends were

134

there, Sandy said, "just for someone to talk to, to let off
steam."

Over time, they learned to live with this situation.
Krissy's handicap became a regular part of their lives.
Chuck Carter described: "At first, it was awful scary, you
know, now it's just regular daily routine." Sandy and Chuck
worked with Krissy, were encouraged by the decreased
frequency of her seizure activity and expressed the hope
that, with continued progress, Krissy might one day be able
to take care of herself. As far as accepting these
difficulties in their lives, Chuck Carter summed it up:
"You just manage, that's all. You live day to day, (it's)
about the only thing you can do."

Literature. The emotional experiences of the study
families parallel some of the experiences reported in the
literature. Several authors have considered emotional
reactions of parents. Discussing a review of literature,
Collins-Moore (1986) listed common responses of parents
following the birth or diagnosis of a handicapped or sick
infant as "shock, denial, grief, guilt, inadequacy, anger,
and depression.... withdrawal, bitterness, resentment, and
rejection" (p. 41). Trout (1983), in reporting the results
of his clinical research, cited such reactions as parental
grief, low self-esteem, continuing losses felt by the
parents, rage, denial, and parental ambivalence about the
baby. In discussing effects of chronic illness on the

family, Bruhn (1977) listed "denial,... guilt, anxiety,

135

shame, embarrassment, depression, resentment, rejection,
alienation, self-blame and bitterness" (p. 1060), and went
on to say that "the family must be assisted in resolving the
emotional antecedents and sequelae of the illness before it
will be able to satisfy the emotional needs of its members"
(p. 1060). Featherstone (1980) talked at length about her
own and other parents' feelings, including anger,
loneliness, guilt, self-doubt, and acceptance. Finally,
Lyon and Preis (1983) reviewed literature in this area and
concluded "there are a variety of factors that contribute to
parental reaction, and it is difficult if not impossible to

predict what type of reactions to expect of parents" (p.

217).

Lindemann (1965) described the psychological symptoms
of acute grief: "a slight sense of unreality, a feeling of
increased emotional distance from other people... (and)

intense preoccupation with the image of the deceased....
Another strong preoccupation is with feelings of guilt" (p.
9). The question of the endurance of grief over time --
whether families go through a time-bound grief process,
experiencing the stages described by Kubler-Ross (1969) for
those dealing with death and dying, or whether there is
chronic sorrow (Olshansky, 1962; Young, 1977) where parents
never really get over having a handicapped child -- was also
addressed. Wikler, Wasow, and Hatfield (1981) questioned
parents of retarded children and concluded that "chronic

sorrow rather than time-bound adjustment characterizes their

136

experience" (p. 68). The sorrow was not continuous, but did
occur periodically.

Finally, Featherstone (1980) spoke cogently about
children's feelings:

Children and grown-ups play variations on some of the

same themes. Like their parents, sisters and brothers

have good reasons to feel afraid, angry, guilty, and
isolated. Age and family position shapes [sic]
experience, however; some issues loom larger for
children than for parents. Specifically, brothers and
sisters talk about embarrassment, identification, and

confusion much more than adults do. (p. 144)

Summapy of the Emotional Dimension. Family members
learn about the handicapping condition and come to realize
what it means, and to adjust to it over time. Strong
feelings emerge, including: guilt, anger, frustration,
helplessness, fear, grief, low self-esteem, rage, denial,
parental ambivalence about the baby, shock, anxiety, shame,
embarrassment, depression, resentment, rejection,
alienation, self-blame, bitterness, loneliness, self-doubt,
and acceptance. As parents encounter acute grief, they may
exhibit psychological symptoms described by Lindemann
(1965). Children may have the same feelings and emotional

symptoms as adults, although some issues may be different

for them.

Cogpitive Dimension

Theory. Cognitively, for families with handicapped

children, there is learning about the handicap and what is

137

needed, making decisions about the child's care, and meeting
changing informational needs.

In the beginning, families may know little about how to
handle the handicap, but they learn, in their own ways, as
they go. They want to be good parents but they don't know
how to be good parents to this child. Not only is it a hard
thing to do, they don't even know enough about the handicap
to do it. In a time of not knowing what might be wrong,
they don't know where to get answers. Indeed, in the
beginning, the most helpful professionals might be the ones
who admit that they don't know. They learn what they can
about the questions that roil their emotions. They work on
it, learn what the child needs and how to get it.

The cognitive demands may seem overwhelming. Decisions
may have to be made with insufficient information, or based
on advice from professionals who disagree as to the best
course of action.

As their children grow and change, as family members
become more sophisticated and more knowledgeable about the
world of special needs, their informational needs change.
They must continue to work to mesh the requirements of the
handicap and other needs in their lives.

Resolution of the "Why us?," "How could this happen?"
kinds of questions, may come about, not by being answered
but by the realization that, for some questions, there are
no good, satisfying answers, and that having the answer to

these questions would not really change anything.

138

Qppg. How the families in the study handled these
demands was described in Chapter 3. Eric and Beth learned
by asking questions, by watching, and by being directly
involved in evaluation and treatment experiences with their
handicapped child. With the Bradleys, both parents chose to
be involved very directly and actively in Tommy's daily care
and ongoing tasks, and so shared the burden of the impact of
Tommy's special needs. Cognitively, it was important to
both of them to understand the nuances of Tommy's care.

With the discovery of Robbie's asthma, this pattern of both
parents being involved continued.

Eric and Beth relied on their pediatrician for guidance
in finding out about the handicap. One thing they
appreciated, said Eric, was his honesty. "When he didn't
know, he said so." They have looked for this quality in
others, and they said "on the whole, doctors have been
straightforward with us."

Both Eric and Beth insisted on having the best doctors
and other services they could find, traveling with Tommy to
get expert opinions when necessary. Their goal was to do
"everything we could" for Tommy. They learned that
specialists were there to advise them, but that the
specialists sometimes did not agree, and it was up to them
to sift through the conflicting advice. They also learned
some doctors did not like it when they followed another

doctor's advice. In the end, they realized that they knew

139

what Tommy needed, and they had to decide what was best for
him and for the family.

Deciding what was best for Tommy was ongoing as he grew
and changed. For example, he was doing well in the
gymnastics classes he took, but Eric pointed out that when
the class got to things you needed two hands for, there
would be more that Tommy could not do. Then they would have
to try "something else." Sometimes it wasn't quite clear
what the "something else" should be; some activities, like
the basketball he was involved in, were good for Tommy
socially and emotionally, but bad for him physically. On
the whole, though, basketball was something he got a lot out
of, despite the fact that it tightened him up physically,
and so they had him continue with it. To make these
decisions, the Bradleys said "you guess," "you go with your
gut," you "hope for the best."

Like the Bradleys, Sandy learned by asking questions,
by watching, and by being involved directly in the care and
treatment of her child's handicap. Sandy explained her
learning style: "I've asked questions since day one."

Chuck preferred to be less directly involved with Krissy's
treatment. He had a strategy that worked for him, where he
stood back and listened and then discussed things with
Sandy: "If I don't understand what he's (the doctor)
saying, I just ask Sandy... and she tells me." He was
involved and learning in a different way than the other

three parents.

140

With the Carters, and their traditional lifestyle, the
demands of Krissy's care largely fell on Sandy, with Chuck
playing a supporting role. In their one-breadwinner family,
they chose for Sandy to remain the primary caregiver and
Chuck to remain the breadwinner, and so shared the impact
and the understanding of Krissy's special needs in a
different fashion. It seemed all four parents were finding
ways that suited them to get their needs for information
met.

In Chapter 3, there are multiple examples of the
things Sandy said she had learned: giving daily medication,
giving shots to stop an ongoing seizure, dealing with
doctors and nurses, reading and understanding medical
records and reports, learning how to be assertive, and
working with Krissy on speech and language and in other
areas.

Making decisions about Krissy's care was sometimes
difficult, and often happened by "trial and error." Sandy
learned to say "No Valium" when she took Krissy to the
Emergency Room since Krissy had had a bad experience with
Valium once. Sandy recalled another tough decision she had
to make when she was confronted with two doctors involved in
Krissy's care, both of whom she liked, and who seemed
knowledgeable, but who "couldn't agree on anything," so she
had to choose one. Lacking any clear criteria for making

this choice, she picked the one who was geographically

141

closer. "It is hard," she said, "you just don't know if you
are making the right choice."

Sandy turned to Dissatisfied Parents Together for
information about Krissy's condition, and became active in
this group. She shared the information she got with Chuck,
with her pediatrician, and with other interested people. In
this manner, she kept up-to-date on what was happening in
this area and gained information which helped her in
managing Krissy's care.

As far as resolving the "why us?" kinds of questions,
the Carter family seemed to have achieved at least an
operating philosophy if not a cognitive answer. The
family's attitude was perhaps summed up best by Sandy's
mother who said: "Short of God performing a miracle, this
is the little girl we're going to have, and love her as she
is, and appreciate the fact that we've got her."

Literature. Several authors have addressed the

 

cognitive component of the impact of having a handicapped
child which includes "obtaining information,... interpreting
or understanding the information, and... using the
information to make decisions" (Lyon and Preis, 1983: 224);
being involved in "establishing educational goals and
measuring progress" (Green, 1982: 22); having to
"assimilate technical information about the disability"
(Fortier and Wanlass, 1984: 13); and making difficult

decisions (Trout, 1983).

142

Bubolz and Whiren (1984) noted that "the requirements
of the handicapped member create difficult moral/ethical
judgments and decision-making dilemmas for the family" (p.
8). The decisions the family makes regarding how to meet
the needs of its handicapped members are not "private,
internal family decisions" (p. 9), but are related in a
complex fashion to other systems in society through the
family's interactions with the wider society.

Featherstone (1980) pointed out that children in the
family have important gaps in their understanding of the
handicap and what it means. Children's understanding of
words and concepts is immature; they do not have a
first-hand source of information; and they lack the
experience needed to recognize their confusion and get
needed clarification. They handle this by trying to "make
what sense they can of overheard conversations and rely on
their mothers and fathers for basic information" (p. 150).

"Finding a cause" (Trout, 1983: 339) and dealing "with
the impact of the diagnosis on established values and
expectations" (Fortier and Wanlass, 1984: 13) have both
cognitive and emotional dimensions. They involve asking
questions which may have no satisfactory answers, and the
deep feelings associated with this. Veninga (1985)
discussed the questions which follow a life—altering
tragedy: "The existential questions... Why did this happen

to me? Is life worth living? What do I now believe about

143

God, life, and happiness? The answers to these perplexing

questions are elusive" (p. 211). He went on to say:
Nevertheless, you must ask the questions. In fact,
what seems to demarcate those who survive a heartbreak
from those who don't is a willingness to ask the
poignant questions that relate to life and death,
purpose and chaos. The answers may never be totally
found, but by becoming a friend to the questions a
small step toward inner healing is taken. (p. 211)
In regard to the impact of the handicap on values,

Darling (1983) noted:
Before their children are born, most parents of
disabled children hold the same stigmatizing views of
the handicapped as others in society. The experience
of giving birth to and parenting a child who is
"different," however, usually has a profound effect on
parents' beliefs, values and attitudes. (p. 105)
Summary of the Cognitive Dimension. Cognitively,
family members must obtain and assimilate information about
the handicap, interpret it, and use it to make difficult
decisions, be involved in determining educational goals and
measuring the child's progress towards them. They must also
deal with such issues as finding a cause, and responding to
the impact of the handicap on established values and

expectations, which have both cognitive and emotional

components.
Phygical Dimension

Theory. Physically, for families with handicapped

children, there is keeping up with all that the handicap

144

requires. The parents may be pushing to do all they can for
their child and this demands a great deal physically.

The sheer energy that has to go into getting the child
to evaluations and treatment necessary to insure optimal
functioning must be recognized. There is a demand to be
places and a need for mobility and strength to cope with
constant motion. In many ways, caring for a handicapped
child is a full-time job, whether it takes the combined
efforts of two active parents and some helpful others or
whether it is one parent who devotes most of the day to the
child's care and treatment. A young handicapped child may
have several regular school sessions each week, along with
occupational, physical, and speech therapy one or more times
a week. Unlike older children in public school where
services may be available all in one place, preschool
children may have to travel from one setting to another
miles away to get needed therapy.

The physical demands can be enormous for some parents.
The baby who is easy to carry becomes the toddler who is
heavier, becomes the school—age child who threatens to
become too heavy, if the child needs to be carried or lifted
a lot. Physical energy is also needed to find toys for the
child which are appropriate for both developmental level and
physical abilities. Clothes may have to be purchased with
the child's special needs in mind. Finally, the home may

have to be set up or routines developed or equipment

145

obtained to meet the needs of the child in adjusting to the
handicap.

2535. The "hectic" pace of the lives of the two study
families was described in Chapter 3. Tommy's needs demanded
great mobility with school plus therapy sessions each week.
Tommy's therapies occurred in several different places, and
sometimes it was a babysitter or relative who got him there.

In addition to the therapies, the Bradleys had to put
energy into acquiring toys and clothes which Tommy could
manage. They told how many popular toys, like Jack-in-the-
Box, were made with handles on the right, and they had to
try to adapt the toys for Tommy, or substitute something
else. Clothes could also be a problem. "Do you know," Beth
asked, "how hard it is to find shorts with a left back
pocket?"

The Carters, too, had a "we run constantly" lifestyle.
Like Tommy, Krissy had several school sessions plus therapy
sessions each week. Krissy's physical therapy occurred as
part of her preschool program, but her speech therapy was at
a site in another community. Her mother got her to all of
these activities. Transportation was often a problem; if
the family vehicles were not working, then Krissy would
often miss these sessions. In addition to these regularly
scheduled services, Krissy and her family had to include
trips to the doctor's office, the hospital Emergency Room,

and the blood lab as her seizure activity required.

146

The lifting-and-carrying part of this physical
dimension was evident with Krissy. Although Krissy could
walk, she sometimes needed to be lifted and carried. These
physical demands of her handicap were increasing as she
grew, and, although her mother had not found it to be a
problem, as yet, it had affected her maternal grandmother's
ability to care for her. When Krissy needed to be dressed,
and she was not in the mood to be cooperative, or even when
she grabbed you in a bear hug, her 64 pounds were
noticeable. Even just keeping up with Krissy on the move as
she explored her environment in ways which were appropriate
to her developmental level took a good bit of energy. In
addition, the demands of watching her for seizures, perhaps
losing sleep due to this vigilance, must take their toll on
her watchful parents.

Finally, the Carters had to keep Krissy's needs in mind
on a daily basis in their home. They had child-proofed
their home with electric outlets placed up high, and a lock
on the bathroom door to keep Krissy out. In addition, Sandy
kept an eye on where Krissy was playing in the course of a
day, closing off a room where she might get into trouble.

Literature. Ideas gleaned from the literature add
information to the physical component of the handicap's
impact on the family. In this regard, Fortier and Wanlass
(1984) mentioned the experience of somatic symptoms from
stress, and Lindemann (1965) described the physical symptoms

of normal grief which include:

147

sensations of somatic distress occurring in waves
lasting from twenty minutes to an hour at a time, a
feeling of tightness in the throat, choking with
shortness of breath, need for sighing, an empty feeling
in the abdomen, lack of muscular power, and an intense
subjective distress described as tension or mental

pain. (p. 8)

Increased demands on family members' time and energy
were discussed by Green (1982):

Families of persons with many kinds of handicap --

mental retardation, epilepsy, cerebral palsy,

schizophrenia -- all speak of the interminable
weariness of care: few nights of rest from the crying,
shouting, sleep disruption; temper tantrums, slowness;
helplessness; dependence; the difficulty of lifting
especially as the offspring gets older and heavier;
toileting difficulties; incontinence; feeding problems;
laundry burdens; problems in shopping for suitable

clothing and shoes. (p. 10)

A mother testifying before the Select Committee on
Children, Youth, and Families talked about the "tremendous
pressure from his school, his doctors, his therapists, and
from our own sense of responsibility, to try and do
everything.... We are running out of energy" (Hearing,
1985: 5). Along this line, Bubolz and Whiren (1984)
explored how having a handicapped member may place excessive
demands on family energy.

Another physical aspect is that of physical settings
and how these relate to stress on the family. Melson (1983)
described environmental stress which includes stress from
all forms of the environment, including the "immediate
physical context in which family members come face to face

with each other and with other people" (p. 151). Individual

settings which have demands for certain kinds of behavior,

148

may place stress on family members, and moving from one
setting to another may add additional demands. Although
Melson did not specifically relate these stresses to
families with handicapped children, families with a
handicapped child are exposed to new settings as a result of
the handicap -- professionals' offices and therapy rooms,
clinics, hospitals, school settings -— and they will
encounter changes within familiar settings, such as their
own home, as well.

Summary of:the Physical Dimension. Physically,
families with a handicapped child cope with demands on
physical energy which include the need for mobility in
getting the child places, finding appropriate clothes and
toys for the child, carrying and lifting the child, and
being a vigilant parent. Responding to the handicapped
child's needs may interfere with the family members'
opportunities to get adequate rest, the child may be
physically difficult to manage, and the parents may also
suffer the physical symptoms associated with stress or with
a normal grief reaction. Finally, family members may
experience stress in response to changes in their physical
environment as they move into new settings to get needed
services, or as they arrange their homes differently to meet

the child's new needs.

149
Social Dimension

Theory. Socially, for families with handicapped
children, there is figuring out how family members fit with
other people inside and outside the world of special needs,
including relatives, friends, neighbors, and professionals
as well as strangers.

A primary component of the social dimension is a good
support network, which plays an important part in the
cognitive, physical, and emotional dimensions as well.
Support networks are generally comprised of some combination
of extended family, friends, neighbors, professionals, and
others available for different kinds of help. As the family
learns to handle the handicap, they identify people who are
able and willing to help them in different ways so they know
who is there to count on when they need help.

Another social aspect of dealing with a handicapping
condition is learning the many roles that parents of
handicapped children play: parent, teacher, therapist,
nurse, chauffeur, and advocate. Parents need to learn to
work with professionals with different backgrounds,
different skills, and different expectations of them. Some
doctors, nurses, and other professionals recognize parents'
expertise about the child and form a kind of partnership
with the parents, trusting the parents' reports about the
child and their ability to carry out treatment. Other

professionals do not recognize this expertise and may act as

150

if they alone, and not the parents, know what is best for
the child. The parents may still have to try to get
information and services from these professionals.
Professionals also may expect parents to work with the child
at home in ways the parents find difficult. Multiple
demands from different professionals may make it hard for
parents to do all that is expected. Parents work to learn
how to manage all the roles they are called on to play for
their children.

Parents may also find themselves in complicated
situations with other people and their response to the
handicap, situations which may have no clear or simple
resolution. Relatives, friends, and neighbors may rally and
support the family or they may not. Some may stop coming by
to visit, others may indicate they are uncomfortable with
the child's handicap, making it more difficult to bring the
child for a visit. Some people may express interest and
concern and keep posted on the child's progress; others may
barely ask after the child and family, and not seem
interested at all. Finally, the parents may have to deal
with the well-intentioned but annoying comments of people
who say things to reassure them, like saying the child will
outgrow the problems.

Those who do not know the family may be a source of a
different kind of problem. Strangers may stop parents when
they are out in public and ask about the child, or act in an

uncaring fashion; the parents must decide how to respond.

151

Some people may make derisive comments within the parent's
earshot; these too must be dealt with socially as well as
emotionally.

The need for respite from the handicap and its multiple
demands is clear. It takes a lot out of a parent to keep up
with the needs of young children with these types of
handicaps. The need for trained and dependable respite
caregivers can be a big one in the families' lives.

9353. Various aspects of the social dimensions of the
special needs world of the two study families were described
in Chapter 3. Both families had support networks comprised
of a comfortable combination of people clearly identified as
to how they were able and willing to help.

Eric and Beth relied heavily on their extended family,
and also had close friends and neighbors who would help out
as needed and professionals whose advice they could trust.
Eric and Beth shared the many roles required of them with
some extended family members, transporting Tommy to therapy,
doing exercises with him, advocating for him together, as
needed, with the medical and educational world. They
described becoming assertive as they learned to ask for what
he and they needed. Though Eric and Beth were able to get
good services for Tommy, and had been active in working with
him at home, sometimes there were multiple expectations from
different specialists. Beth described how the physical or
speech therapist might want them to do exercises, and the

school teachers might also suggest activities, and it was

152

hard to do it all. Getting home from work, she said, "you
really just want to be Mom and Dad, and you have this guilt
if it isn't done."

In general, the Bradleys had a lot of support from
those around them. In the beginning, though, with Tommy's
difficult birth, they found that the friends they might have
expected to come by to visit stayed away when they heard
about Tommy's problems. Beth thought it was because they
didn't know what to say. Beth said she would like to "write
a book" about the things people should and shouldn't say.

In the "shouldn't" category would be comments which she
found bothersome, like being told "he'll outgrow it" and
"God gave him to you because you're such good parents." She
added that well-meaning relatives have all sorts of answers
for you: "Everybody knows what to do, and they'll tell
you," she said.

Eric and Beth had not had too much trouble with
strangers commenting on Tommy's handicaps in public,
although it did happen occasionally. Tommy's handicap was
not too obvious, except perhaps, on the basketball court,
and they thought most people probably did not think of him
as handicapped. Eric and Beth were anticipating that this
would change as Tommy got older. Especially in school, they
thought that in a few years Tommy's abilities would be
noticeably different from the other children in his classes,
and he would have to endure comments and teasing from

classmates.

153

Finally, with their knowledgeable and experienced
babysitters, Beth and Eric had the chance to get away from
their hectic busy schedules occasionally. With many people
available to care for Tommy and Robbie, Eric and Beth did
not have restrictions on their ability to get out together.
If they did have to stay home, it was more likely to be
Robbie's asthma than Tommy's special needs which would alter
their social plans.

The Carter family's support network consisted mainly of
close friends who were "like family" to them, and a few of
their extended family members. They also had neighbors who
would help out in a pinch, and professionals whose advice
they trusted.

Of the many roles parents of handicapped children play,
Sandy played most of the roles Krissy needed, driving her
places, giving her medicine as needed, and advocating for
her, as described previously. Learning to be assertive was
part of learning to advocate for Krissy, since, as Sandy
said, "she can't defend herself."

Sandy's varied experiences with physicians, especially
in the Emergency Room, are good examples of the ways that
different professionals treat parents. Basically, with
doctors she had come to know, Sandy had few problems. Some
other doctors, she said, had "resented" her insistence on
what she knew was best for Krissy.

Sandy and Chuck found that most of their extended

families were not interested in how Krissy was doing: They

154

did not come by to visit, and they did not call to ask after
her. Sandy said "they're not there for us when we need
them." Their friends, on the other hand, had "gone through
a lot" with them, and did call frequently to see how Krissy
was.

Sandy described having to deal with strangers who were
inquisitive about Krissy, stopping her to ask: "Why doesn't
she talk?" "What's the matter with her?" Though in the
beginning this bothered her and she did not know how to
respond, Sandy had learned to tell them about the DPT shot,
and "99% of the time," she found, "people are real
interested."

Socially, the lack of respite care affected Sandy and
Chuck. In contrast to the Bradleys, for Sandy and Chuck it
was a rare opportunity to be able to get away together and
feel comfortable about Krissy's care. At the time when
Krissy's seizures began, Sandy and Chuck found they were
unable to go out as they had before, and this required some
adjustment. At one point, Krissy was having so many
seizures, they even stopped doing some of their family
activities, like going camping. So, how well Krissy's
seizing was controlled and the amount of energy required for
her care directly affected the Carter's social lives.

Literature. Regarding the social dimension of dealing

 

with the needs of a handicapped child, the literature offers
information on social support, social stress, and how the

wider society affects the family's dealing with the

155

handicap. Social networks may support individuals and
families under stress, serving as a buffer or mediating
factor against life stresses (Caplan, 1981; Dyson and
Fewell, 1986; Thoits, 1982; Unger and Powell, 1980). In
their review of the literature, Kazak and Marvin (1984)
noted that "no research exists which looks formally at the
nature of social support networks in families with
handicapped children" (p. 69), but listed four types of
support -— "provision of goods and services,... providing
emotional mastery; offering guidance regarding expectable
problems and methods of dealing with them; and, providing
feedback on behavior that fosters improved performance" (p.
69), which support networks might offer. Network size
(number of people offering support of the types listed) and
density (extent to which the support people know each other)
are important in understanding "the actual embeddedness of
the family with a handicapped child within the structure of
its social support network" (p. 69).

Rubin and Quinn-Curran (1983) spoke of the importance
of families "mobilizing natural networks" (p. 83). Vincent
(1984) agreed, citing how research (hers and others) has
shown that families, either with or without handicapped
children, turn to "'their' people" (p. 35) when they have
problems. She suggested professionals need to do a better
job of assessing informal networks and helping families to

expand their networks.

156

Natural networks involve "relatives, friends, and
neighbors" (Rubin and Quinn-Curran, 1983: 83). Some of
these people may pull back when there is a handicap, so the
family experiences social isolation and alienation (Kazak
and Marvin, 1983). Nance (1982) observed that, with a
premature birth, close friends and relatives of the parents
may have some of the same feelings as the parents themselves
and so be less effective in offering support. Some friends
and relatives may be afraid to get too close to the
situation, others do not know what to do or how to help.
Similar messages echoed in the accounts of parents
describing personal experiences with a child's severe
handicapping condition (Featherstone, 1980; Kupfer, 1982).

Discussing intrafamilial factors, Collins-Moore (1986)
described the silence and uncertainty of extended family and
friends at the time of diagnosis. Grandparents, she noted,
"may be unavailable at first as they cope with their own
personal crisis at having an anomalous or chronically ill
infant in their family. They, too, experience loss" (p.
46). Berna (1980) discussed the ambivalence grandparents
experience when encountering a handicapped grandchild, where
feelings of love mix with a sense of disappointment or
rejection of the handicapped child. Eventually, grand—
parents may be very supportive. Indeed, Green (1982) stated
that "of all extended family members, the maternal
grandmother appears to be most supportive, giving sympathy

and understanding, particularly to her daughter" (p. 12).

157

Social stress may be experienced from the family's
having to "deal with labeling and stereotyping, a sense of
isolation from others, handling 'helpfulness' and advice
from friends, and providing support for other family
members" (Fortier and Wanlass, 1984: 13). A particular
source of stress is the social stigma which may be attached
to being handicapped (Fewell and Gelb, 1983; Rubin and
Quinn-Curran, 1983; Shearer, 1981). Parents who find
themselves raising a child for whom no valued social role is
evident face a dilemma as described by Fewell and Gelb
(1983):

A society's negative evaluation of a child places
severe strain on the child's parents. Parental
aspirations for the child and the realization of
cherished goals can be thwarted by social obstacles as
well as by the disability itself. In addition, parents
are forced into conflicting roles as providers who
desire what's best for their children and as members of
a society that views the child as socially unworthy.
(p. 178)

The influences of societal beliefs and attitudes about
handicapped individuals are complex and subtle. Darling
(1983) described social influences on people in general:

From the time they are small they see uncomplimentary
images of disabled people on television or read
uncomplimentary accounts in books (literary villains,
such as Long John Silver, have been classically
depicted as disabled or disfigured), they hear
unfavorable epithets, such as "retard" or "crip," and
most have little informal, direct social contact with
disabled individuals in their everyday lives....
Almost all the general public's exposure to
handicapping conditions is negative. Even when the
disabled are shown in a "positive" light, they are
typically depicted as objects of pity rather than as
happy, fulfilled human beings. (p. 98)

158

Parents and other family members, of course, are
people, subject to the influences just described (Darling,
1983).

Disabled people are stigmatized by a society which sees
them as different. Rubin and Quinn-Curran (1983) suggested
that disabled people threaten nondisabled people who "may
erect barriers to ward off 'contamination' or to suppress
their own feelings of vulnerability" (p. 65). These
barriers may be more attitudinal than tangible.

Shearer (1981) explored these societal attitudes and
argued that there is a continuum of abilities and
inabilities which exists in all of us, and that "each and
every one of us knows moments of inability, moments when the
body and mind that we take for granted let us down, refuse
to work for us" (pp. 1-2). Yet the disabled, those who are
labeled as such, are defined by what they are unable to do;
they are not seen by their abilities at all. She noted
that:

People who have cerebral palsy become "the spastics,"

people who are mentally retarded "the subnormals,"

people who have arthritis "the arthritics." By turning

a description of a condition into a description of

people, we are saying this is all we really need to

know about them. We confirm their "abnormality." (p.

3)

Rubin and Quinn-Curran (1983) agreed that:

Our terminology works to highlight a person's

impairment or disability as if it were the person's

sole or salient feature. By singling out an aspect of

a person's physique or behavior and making it

synonymous with that person's identity, we stigmatize
and ultimately dehumanize that individual. (p. 67)

159

The language that able-bodied society, particularly the
media, uses to describe the disabled has been debated in the
disability rights movement literature. Peters (1987)
discussed how a person with a physical disability is
described as a "victim," (p. 22) in the media, a term which
carries "'emotional baggage'. Helplessness. Powerlessness.
Dependency" (p. 22). With this language, she argued, the
disease, not society's response to it, is seen as the cause
of the person's problems. She went on to explain:

When the disease is the victimizer, the solution is

individual medical help -- cure, if possible. The

disability rights movement argues that the "victimizer"
of disabled people isn't a disease; rather the real

"victimizer" is discriminatory attitudes, lack of

access and lack of rights. The phrase "victim of

multiple sclerosis" puts the blame on the wrong party,
obscuring the argument that solution lies in social

changes for access and rights more than cure. (p. 22)

In a similar vein, Smith (1987) argued that disabled
people's earning power is limited, due to "human-made
oppression -- rather than an unfortunate stroke of fate" (p.
4). This comes about because of a society which does not
focus on what disabled people can do, but sets jobs up in
ways that exclude the disabled. She believed "it is not due
to medical condition, but through economic practices,
physical barriers and cultural attitudes that people are
separated into the two camps of 'able-bodied' and
'disabled'" (p. 5).

Another aspect of how the wider society affects a
family's dealing with a child's handicap is that of what

services are offered and funded, and ease of access to these

160

services. Rubin and Quinn-Curran (1983) compared accessing
the social services system for children with special needs
as similar to "negotiating a massive maze" (p. 70). Several
parents speaking before the Select Committee on Children,
Youth, and Families told of the "appalling choices"
(Hearing, 1985: 3) they had regarding programming for their
handicapped family members, the high cost of services, and
the need for other services, such as respite care and help
planning for the future. At this same hearing, Vincent
(Hearing, 1985) presented the need for support for keeping
children at home: "We need to look to provide families the
same level of support for maintaining their child at home
that we are willing to spend as a society for them placing
their child outside the home" (p. 14).

There is a final, more arresting aspect to the social
dimension which must be considered: that society and other
interrelated elements of the macrosystem are, directly or
indirectly, adding to the incidence of handicapping
conditions in infants. Indirectly, technological advances
and modern medical techniques make it possible for infants
born with severe defects to survive. Infants who would have
died when sophisticated equipment and procedures were not
available can now live. Yet if these infants survive with a
handicap, the services to help the child and family deal
with the handicap may not be there. A particularly poignant
point relative to this research is the realization that

sometimes it is the medical world that causes the handicap

161

in an otherwise healthy child -- as is the case with Krissy
Carter, a vaccine-damaged child. Coulter and Fisher (1985)
believed that:

Vaccine—damaged children are unique in that their

injuries occurred as a result of our society's failure

to properly test and monitor a biological [sic] that is
legally required in most states in our nation. The
lack of adequate social services to meet the needs of
vaccine-damaged children and their parents is just one
more example of how our society has allowed children to
be injured and then left them and their parents to cope

with the devastating result of those injuries. (p.

397)

Summary of the Social Dimension. Socially, family
members develop ways to interact with people inside and
outside the world of special needs. These may include:
developing and using a good support network; learning many
roles related to the handicap; handling the varied responses
of relatives, friends, and strangers; and finding dependable
respite care. Support networks might help provide goods and
services, emotional mastery, guidance about expected
problems, and feedback on behavior. Relatives, friends, and
neighbors may form a natural support network, but might also
pull back from the handicap and not be available in time of
need.

Influences of the wider society may include: labeling
and stereotyping, social stigma and a sense of isolation
from others, and difficulty in getting needed services. The
social stigma may stem from a society which focuses on which

the handicapped person cannot do, rather than on what the

person is capable of doing. Finally, society and other

162

interrelated elements of the macrosystem may be adding,
directly or indirectly, to the incidence of handicapping
conditions in children, due to technological advances and

modern medical techniques.

Other Dimensigns

Literature. In the literature, Fortier and Wanlass
(1984) identified five levels on which the family would be
affected following the crisis of a handicap being diagnosed
in their child: affective, physical or sensory,
interpersonal, cognitive, and behavioral levels. These
first four are similar to the four dimensions discussed
above. The behavioral level addresses the need to "provide
immediate care for the handicapped child, arrange
transportation to treatment, alter previous methods of
scheduling time and meet new financial needs" (p. 13).

Other authors cited logistical impact, "meeting the needs of
the handicapped child, caring for the other, nonhandicapped
siblings, maintaining satisfying marital relationships, and
fulfilling professional commitments as well as the more
mundane concerns of daily living" (Lyon and Preis, 1983:
222), and the financial difficulties of paying for expensive
services and equipment (Green, 1982; Hearing, 1985; Lyon and
Preis, 1983).

Finally, it is interesting to note that Miller and
Myer-Walls (1983) cited similar areas, including physical

(demands of direct caregiving), psychological (concerns

163

about the child's safety and well—being), and financial
(direct maintenance costs as well as opportunity costs
relating to loss of potential income) as stressors
associated with regular parenting.

Summary of Other Dimensions. The examples listed under
behavioral level and logistical impact could all be subsumed
under the emotional, cognitive, physical, and social
dimensions, plus a financial dimension. The study families
did talk about financial demands of the handicap, although
information on this aspect was not a major focus for data
collection. The financial dimension may be added as an
additional dimension in which the family is impacted by the
handicap. Using Miller and Myer-Walls (1983) discussion of
parenting stressors, it would seem that parenting the
handicapped child engenders stress in the same areas of life
as parenting the regular child, only to a greater degree, if
the child needs an extended period of caregiving, or a
greater degree of care, or more protection from physical or

social dangers, or expensive equipment to get through life.
Summary of Theorygto This Point

Bronfenbrenner's (1979) theory of the ecology of human
development served as a framework in which to view the
emerging theory. The impact of the handicap on the family
was described as a multi-dimensional experience, and ways
the handicap impacts on the family in many dimensions were

explored. The dimensions of impact were seen to be

164

emotional, cognitive, physical, social, and financial, and
these areas of stress parallel the stressors experienced by
the parents of nonhandicapped children.

In the next chapter, discussion will focus on the
process by which families adjust to the handicap and how
they work towards making things fit, or having a sense of

consonance in their lives.

 

Chapter 5. INTEGRATION OF THE EMERGING THEORY:
ACCULTURATION AND CONSONANCE

Introduction

The second and third parts of the emerging theory have
to do with the process through which families with
handicapped children go as they adapt to the handicap, and
with their move towards establishing consonance in their
lives.

While gathering information to clarify the nature of
the study families' experiences as they coped with the needs
of their handicapped children, it became evident to me that
what was true for family members at that time, as they
reported it, was different from the way they had perceived
the handicap and its demands before. For example, Sandy
said "it all seems so natural to me now," and related that
it was hard to remember how she had learned all she had to
do to take care of Krissy. She went on to say the "stuff
with Krissy used to be more stressful," but was not so much
anymore. Similarly, Eric Bradley talked about adjusting
gradually to Tommy's needs and then doing things with and
for Tommy as an "everyday habit."

This awareness of the changes in family members'
perception of the situation over time led me to ponder
whether the impact, the changes, and the stresses of having
a handicapped child can be best understood as part of a

process, where perception of the handicap and its

165

166

requirements changes, with time and experience, and with
success and failure. What was once "scary" becomes
"regular". Adjusting to and dealing with the handicap
continues as life goes on. It was a process in which the
two study families were still involved.

Describing this as a process pulls together the ideas
enumerated in the four dimensions of the world of special
needs: the emotional, cognitive, physical, and social
dimensions, which are experienced, as noted before, in an
interrelated fashion.

Before describing this process as acculturation to the
world of special needs, it would be helpful to first address
the question: Is there a separate world of special needs,

and how is it separate?
A Separate World

The nondisabled share the physical world with the
able-bodied, but in many ways they may live a life apart.
There may be obstacles to their full participation with
able-bodied people which they encounter because of physical

and attitudinal barriers.
Literature

The idea of the disabled being of a separate culture,
inhabiting a separate world, is found frequently in the

literature. Barnes, Berrigan, and Biklen (1978) stated:

167

Culture means the shared experiences, values, and norms
about what is appropriate and what is inappropriate
behavior, and a sense of belonging together.... a
number of disabled people consider themselves as having

a subculture because there are certain elements of the

experience of being disabled which are common and which

help disabled people feel they belong together. (p.

28)

Other disabled people may view this differently.
Disabled people who come from diverse backgrounds may have
little in common, "except the disability experience"
(Johnson, 1987: 4); they may also resist coming together as
an identified group "because of the stigma" (Johnson, 1987:
4) and other problems associated with being disabled.

Whether there is a clearly defined "disability culture"
or not, there is clear evidence that the world has different
expectations of you if you are chronically sick or disabled
than if you are well and able-bodied. In fact, depending on
the illness or handicap, the disabled person or family
members may feel they are part of two worlds, but do not
really belong to either. Bruhn (1977) talked about patients
with chronic renal failure who find themselves:

adrift somewhere between the worlds of the sick and the

well. Marginal men, in effect.... The marginality

between what society defines as healthy and the fact
that every aspect of life is altered by his dependency
on dialysis is responsible for the renal disease
patient's inner struggle to arrive at an appropriate

self-image. (p. 1059)

These patients to not know what are reasonable

expectations for themselves, or whether to see themselves as

sick or well.

168

Fewell and Gelb (1983) applied this notion of
marginality to those with moderate handicaps:

The moderately handicapped are marginal both to the

nondisabled world and to the world of the severely

handicapped. Their intermediate status creates
ambiguity for them and their parents.... The moderately
handicapped person cannot be sure whether he or she
will be treated according to "normal" or "handicapped"

expectations in a given situation. (pp. 181—182)

Siblings too, may experience the two worlds.
Featherstone (1980) observed:

Brothers and sisters of handicapped children feel the

tug of what almost amounts to two different cultures.

They stand with one foot in the world of normal

classmates and the other in their exceptional family.

They live among ordinary children; they long for simple

fellowship with others their own age. Yet playmates

sometimes treat a handicapped child cruelly. Forced to
mediate, to explain, and sometimes to choose between
conflicting loyalties, brothers and sisters can end up
angry at the normal world, the disabled child, and

themselves. (p. 142)

Finally, there is the problem of parents of handicapped
children having to work with professionals who may have
differing viewpoints than they do. Darling (1983) used the
concept of worldview, "the way individuals and groups
perceive and define the events they encounter in everyday
life" (p. 96) to explain the different perspectives of
parents and professionals. "Members of the same cultural
group tend to have similar worldviews" (Darling, 1983: 96),
she pointed out, although individuals within the group, may
have differing views, due to differing life experiences.
Each professional, she stated, "has a unique worldview
associated with professional training and practice as well

as with everyday social experience" (Darling, 1983: 98).

169

Professionals' clinical perspectives acquired from
professional education and practice include the use of
psychologistic theories which tend to see the cause of the
problem in the individual, reliance on a medical model
focused on curing or returning the individual to normalcy,
an attitude of professional dominance which may encourage
the parents to feel helpless, and a bureaucratic context for
the professional-patient relationship which tends to
depersonalize the patient. In addition, ordinary social
experience makes professionals subject to the attitudes of a
stigmatizing society. All of this is at variance with what
the parents are learning and feeling after the birth or
diagnosis of the handicap in their child. Thus, parents and
professionals often hold "divergent worldviews" (Darling,

1983: 113) and may see each other in a negative fashion.
Summary of the Separate World

Handicapped people may share experiences, values,
norms, and a sense of belonging together, although this
belonging may be limited to just the disability experience.
The idea of marginality expresses the difficulty handicapped
people may have in determining whether they fit into the
world of the disabled or the world of the nondisabled.
Siblings and parents of the handicapped child may experience
conflicting attitudes and loyalties as they feel the pull of

the two worlds.

170

The following description of the emerging theory
discusses (a) the acculturation process, and the ways
families with handicapped children may be likened to
immigrants, and (b) the concept of consonance. To address
each part of the acculturation process, a theory statement
is followed by specific examples from the collected data
which support it. Then, literature on the acculturation
process is reviewed and a summary statement given. To round
out consideration of the acculturation process, the final
section of the chapter discusses literature on family
strengths, which is an important part of the acculturation
process, and compares the acculturation process to McCubbin
and Patterson's (1983) theory of family adaptation to

crises.
The Acculturation Process

The process that families with handicapped children
undergo might be compared to the experiences of immigrants,
a process akin to acculturation, where strangers learn how
to survive and even thrive in a strange land. Thrust
unexpectedly into the world of special needs, families begin
with knowing little or nothing about handicaps, and move on
to having their children's handicaps be something familiar,
something they can handle, a recognized part of their lives.
How does what immigrant families experience parallel what

families with young handicapped children experience?

171

When immigrant families land on America's shores, ready
to begin a new life, they do several things in order to
survive. They:

1. Adjust to the reality of being here, whether here
by choice or necessity;

. 2. Figure out how to use the skills and experiences of
their old life to help them fit into this new life;

3. Learn the language;

4. Learn whom to trust and not trust and develop a
support and information network;

5. Learn acceptable social behavior;

6. Learn how the economic system works so they can
make a living; and

7. Decide how much of their own culture and old

lifestyle they are willing to compromise to fit in.

Families with handicapped children encountering the
world of special needs for the first time:

1. Adjust to the reality of being here, whether here
by choice (as with foster and adoptive parents) or necessity
(as with natural parents);

2. Figure how to use skills and experiences of their
old life to help them fit into this new life;

3. Learn the medical terms and professional lingo
regarding the handicap and needed evaluations and treatment;

4. Learn whom to trust and not trust and develop a

support and information network;

172

5. Learn survival behavior;

6. Learn how the medical and social services systems
work so child and family get what they need; and

7. Decide how much of their old lifestyle they are
willing to change and what they wish to keep in adapting to
the special needs.

Families with handicapped children differ from
immigrant families in one noteworthy respect: Immigrants
usually make a choice to live in the strange land whereas
families with handicapped children usually do not.
Consequently, families with handicapped children may have
some resentment about learning to live in the special needs
world, resentment that they would not have if they had made

a choice about living here.
Parts of the Procegg

The following description of the emerging theory
discusses the seven parts of the acculturation process
described above.

Theory. (1) Families with handicapped children adjust
to the reality of being here: Initially, as families with
handicapped children go through such an acculturation
process, they come to grips with the discovery of the
handicap, and with learning what the demands of the handicap
will mean in their lives. This beginning awareness of a
handicapping condition tends to be a difficult time for a

family, an upsetting of their expectations.

173

Data. As described in the emotional and cognitive

 

dimensions section of Chapter 4, the families spent time
wondering about the handicap, learning as they went,
experiencing many emotions, for example, feeling ignorant,
fearful, confused, at different points. The magnitude of
the initial shock of discovery for the study families, which
affected extended family members as well as the parents, was
reflected in something Krissy's maternal grandmother said:
"It seemed to me like the thing I'd feared most... had
happened." Similarly, Tommy's paternal grandmother
described the discovery of the handicap as "panic number one
-- and where do you go from here?"

Theory. (2) Families with handicapped children figure
out how to use existing skills and past experiences to help
them fit into this new life: In approaching the changes and
incorporating the needs, families use their skills and
experiences as a family and as individuals to help in this
adjustment -- i.e., their personal resources, their
strengths as a family, their problem-solving and
stress-management skills, their parenting skills, their
routines for getting individual family members' needs met,
the supportive relationships in their lives, their love for
each other and their child who is in need.

2333. Sandy's mother described Sandy growing up as a
"giving, thoughtful, compassionate, caring person" and these
qualities were the same ones which came through in Sandy's
description of herself as a ”counselor" for her friends and

in the way she managed her family's needs. Sandy used her

174

abilities to be giving, thoughtful, compassionate and caring
to deal with her current situation. In like manner, Sandy's
child-rearing style with Krissy was the same as with
Chuckie. Sandy devoted a lot of time to her children, and,
as noted in Chapter 3, said both her children were "spoiled
rotten," and she also said of Krissy, "it's not because
she's handicapped that she is not corrected more often.

Kids are going to be kids." Sandy approached the demands of
raising a handicapped child in much the same way she
approached the demands of raising a normal child.

The handicap did put a strain on Sandy and Chuck's
relationship, but the relationship was strong enough for
them to be able to come back together. In fact, one thing
Sandy said she appreciated was Chuck's "being there when we
need him," noting that so many husbands leave because "they
can't take it" when faced with a severe handicapping
condition in their child. Finally, Sandy and Chuck used the
supportive relationships in their lives to help them get
through the tough times. Friends who had been close before
the handicap entered their lives stayed with them to help
out as they could.

The Carter family had a multitude of family and
personal strengths to draw on in dealing with the handicap,
including the parents' ability to work together as a couple
in a comfortable manner; Sandy's desire to be involved and
work with Krissy at home; the parents' nurturing ways and

enjoyment of being parents; a sense of purpose about helping

175

Krissy make progress; hope for the future; a focus on
Krissy's strengths and her ability to make progress when her
seizures were controlled; a good support network; Sandy's
ability to be assertive enough to get needed services; the
ability to master the demands for the new learning
occasioned by the handicap; Chuckie's capability to be aware
of Krissy's needs and to know what to do in case of a
seizure; a steady income; and Chuck's enjoyment of his work
and ability to do many different kinds of work.

The Bradleys pointed out that "you could never be
prepared" for having a handicapped baby, "no matter what
anybody told you." But in learning to handle the handicap
in their lives, they drew on what they had to do the best
they could. Several things were important in this process.
Beth pointed out that it helped that they both came from
similar backgrounds and a philosophy that said "we do the
best fer our kids; it's a given, we'll do the best, no
matter what it costs," so they agreed on this from the
start. They drew on the interest and support of extended
family and friends, and found that the handicap, in many
ways, brought them closer. Yet, even as they were brought
closer in this fashion, Beth and Eric worked out ways that
they each might pursue individual interests, like Beth's
tennis and Eric's courses.

The Bradleys had many strengths to help them in
handling the handicap and making it a regular part of their

lives, including the parents' ability to work together and

176

share the burden of the handicap; both parents wanting to be
involved and working with Tommy at home; the parents'
nurturing ways and enjoyment of being parents; a positive
approach to life and a shared sense of humor; seeing the
handicap as "not so bad"; seeing their efforts being
rewarded and that Tommy was making progress; good social
supports; the parents' ability to be assertive enough to get
needed services; ability to handle the learning demands of
the handicap; a routine which allowed the parents to keep
some time for themselves; Robbie's being older and
encouraging Tommy to try things and helping him progress;
and the parents' steady income and enjoyment of their jobs.

Theory. (3) Families with handicapped children learn
the medical terms and the professional lingo: Family
members begin to learn the language and customs of this new
land. They learn about medical and other procedures to
assess the handicap, and treatment procedures which address
the identified special needs. They develop the ability to
read and interpret the specialists' reports, and understand
the effects of medications and the purpose of certain tests
and procedures, so they can discuss the child's care and
treatment in a knowledgeable manner.

253g. Sandy described many experiences, reported in
Chapter 3, which give examples of this, including her
specialized knowledge of Krissy's individualized response to
medication; her knowledge of how to read and interpret

reports, including blood levels information; and her

177

abilities to understand Krissy's behavior and discuss
Krissy's needs with doctors. Beth and Eric's involvement
with medical assessments and therapy procedures was well
documented in the reports described in Chapter 3. They
sought out the best experts available, accompanied Tommy to
all his evaluations and explained procedures to him when
they could, talked knowledgeably with the specialists, and
made complex decisions concerning his treatment.

Theory. (4) Families with handicapped children learn
whom to trust and not trust and develop a support and
information network: Family members meet the professionals,
trusting the opinions of some, and shying away from the
advice of others. They look for supports, ways to get the
information they need, and they identify people in their
lives on whom they can rely.

2333. Both families had pediatricians they had stayed
with as well as other specialists whose expertise they
valued as they chose and became involved in services for
their child. Both families had also developed dependable
support and information networks, as discussed in the
cognitive, emotional, and social dimensions section of
Chapter 4.

Theory. (5) Families with handicapped children learn
survival behavior: Family members learn how to talk to
professionals, to hold back sometimes, to assert themselves
at others, to articulate their needs as best they can. They

learn to get the information they need to make decisions,

178

learn treatment procedures to help the child at home, and
learn to handle emergencies related to the handicap. They
learn how to get through daily life with the handicapped
child. Like many immigrant families, families with
handicapped children may encounter discrimination and have
to fight for what they need for themselves and their
children. Professionals may not recognize their expertise
about their children and may act as if the parents do not
know what they are talking about.

9333. Both families talked about their experiences
learning to do what the child needed, handling emergencies
and dealing with different professionals, as discussed in
previous chapters. Stories about medical personnel seemed
to come up most as regards being treated poorly. Sandy, for
example, told how the doctors sometimes became angry with
her insistence on being involved in Krissy's treatment.
Both families described needing, handling emergencies to
learn to be assertive for their child. The Bradleys, for
example, referred to learning to be assertive as "the
emergence of the butterflies."

Theory. (6) Families with handicapped children learn
how the medical and social services systems work: The
families of handicapped children learn, as immigrant
families do,in the "school of hard knocks." They remember
and grow from their experiences; they begin to present
themselves as knowledgeable, competent people. They insist
on.their right to be involved in what happens to and for

'their child. They dismiss their doctors, if needed, and

179

find new ones who will listen and respond to their needs.
They stay with the people and the programs which meet their
needs. They weigh carefully what the specialists say,
looking for what makes sense to them. Sometimes, they
ignore the advice that is given.

2335. For the study families, presenting themselves as
knowledgeable people was all part of the learning to be
assertive. Sandy said she asked questions about what the
specialists were doing, and "if I don't like the answers, I
go elsewhere." If she was unsatisfied with what a doctor
was providing, she looked for another doctor. Beth
remembered when they began to realize that they did not have
to wait outside while Tommy was being tested, and began to
simply go along, despite protests of the medical personnel,
to be with Tommy and explain a procedure or a machine to
him. The Bradleys also remembered the time they decided
that they were uncomfortable having Tommy on a certain
medication, and although it was recommended by a top
neurologist, they decided to see how he would do without it
and took him off it.

Theory. (7) Families with handicapped children decide
how'much of their old lifestyle they are willing to change
and.what they wish to keep in adapting to the special needs:
Eventually, these immigrant families with handicapped
children become familiar with the landscape and their world
jbecomes more predictable. They gain some control, finding a

jplace for themselves in the system, making the handicap a

180

part of their lives. Doing the things their handicapped
child needs, for these families, becomes just another thing
they do, a natural part of their busy days, a normal part of
the rhythm of their lives. While fitting the needs of their
handicapped child into their lives, the families treat the
handicapped child as normally as they can, and do family
activities they enjoy, despite the problems.

In all this, families with handicapped children must
not forget the needs of their other children, the
handicapped child's siblings, who are intimately affected by
the handicap. Families balance the attention given to the
handicapped child and that given to siblings, as well as
they can, perhaps including the siblings in activities
related to the handicap. Recognizing and trying to balance
the needs of the handicapped child's siblings is all part of
what these families learn to do.

Gradually, they endeavor to make the necessary changes
in ways that they can accept, in ways that fit who they are
and what they want out of life. In addressing whatever is
indicated by their family's needs, the families decide what
is the best way to do this, how much to compromise, what to
give up, what to keep. Adapting to the handicap, they find
the land is not so strange anymore; they are no longer
strangers here. They have become acculturated.

2533. In the Carter family, as described in Chapter 3,
Sandy developed a daily routine which included daily

procedures like preparing Krissy's medicine and giving it to

181

her on a schedule, even if Krissy was asleep. She caught
Krissy at a "good" time during the day to do speech
activities, and fit Krissy's needs in along with other life
activities, for example, stopping to visit her mother on the
way back from a trip to the blood lab. It was important to
the Carters to do "normal" things with their child. The
Carters went camping, despite the time it took to be
prepared for all Krissy might need. Sandy took Krissy
grocery shopping, because Krissy enjoyed it, though it would
be easier for Sandy to shop without her.

Keeping Chuckie's needs in mind, despite the demands of
Krissy's continuing care, Sandy told of doing things for
Chuckie in the morning, helping him to get ready for school,
though he was able to do a lot of things for himself. That
was his time for her attention. Even when Krissy was
seizing, Sandy would think of Chuckie, as described in
Chapter 3, when Sandy waited as long as she could when
Krissy began seizing at Chuckie's ball game before she left
to take Krissy to the hospital, because Chuckie "misses so
much."

In general, Sandy and Chuck maintained the
one—breadwinner lifestyle they had before the handicap came
into their lives. Despite necessary changes, the family
managed to maintain things that were important to them.

As described in Chapter 3, Eric and Beth mastered the
therapy procedures and incorporated into their daily lives

ways to help Tommy, activities which encouraged him to use

182

his right hand and to correct his pronunciation. They did
not set aside time to do these things, they just did them
along with whatever else they were doing, and they fit
Tommy's multiple therapy sessions into their own busy and
complicated schedules. The Bradleys wanted Tommy to lead as
normal a life as possible, so they encouraged him to try
things, like sports in which children his age were involved.
Tommy enjoyed riding his bike, despite the fact when he was
on it, Eric "died a thousand deaths."

Eric and Beth said it was important to be conscious of
the fact that the sibling does get neglected, and they took
steps to alleviate this, with one of them doing special
things with Robbie while the other tended to Tommy's needs.
As soon as Robbie was old enough, they brought him along on
their annual trip to Boston for Tommy's neurologist visit,
making it more of a family fun trip.

Finally, despite the time and energy demands of Tommy's
handicap, Eric and Beth kept their dual-career lifestyle
much the same as they had had before they had a handicapped
child, both holding jobs they enjoyed, and still managing to
do the things their children needed.

Literature. The emerging theory compares the process
by'which families with handicapped children learn about the
handicap and make necessary changes in their lives in
response to the handicap to the acculturation process which
immigrant families undergo. Actually, it is a unique

acculturation process, where members of the dominant society

183

(of able-bodied people) acculturate to a minority culture
(of disabled people).
In the acculturation literature, culture is defined as
"a learned and shared pattern of behaviour which is
characteristic of a group living within fairly definite
boundaries and which is interacting socially among
themselves" (Berry, 1976: 9). Acculturation, noted Keefe
(1980), "is one of those terms all social scientists use
although few can agree upon its meaning" (p. 85). Padilla
(1980) described acculturation as a "dynamic and vibrant
process" (p. 4), and stated it is "a complex interactional
process involving both members of the cultural group
undergoing change and members of the host culture" (Padilla,
1980: 48). It is "one type of culture-change, specifically
change occurring as a result of continuous contact between
cultural groups" (Keefe, 1980: 85-86).
Szapocznik and Kurtines (1980) described a psychosocial
model of acculturation:
Individual acculturation is a linear function of the
amount of time a person has been exposed to the host
culture, and the rate at which the acculturation takes
place is a function of the age and sex of the
individual. Further, two aspects of the process of
acculturation itself were differentiated: the process
as it takes place along an overt behavioral dimension
of functioning, and the process as it takes place with
respect to internalized value orientations. (p. 141)
So it seems acculturation involves interaction between
members of two cultures, and culture change occurs in a

dynamic and vibrant process over time and involves change in

behavior and value orientation. If families of handicapped

184

children are seen as members of the able-bodied society who
are becoming acculturated to the "host culture" of the world
of the disabled, then this concept of acculturation is
applicable. The process of family adaptation to the
handicap occurs over time and does involve change in
behavior and values. Behavioral changes come about as an
expression of the handicap's emotional, cognitive, physical,
and social impact, and dealing with the handicap's impact on
"established values and expectations" (Fortier and Wanlass,
1984: 13) was identified in Chapter 4 as part of the
cognitive and emotional impact of the handicap on the
family.

Acculturation is not an easy process; Berry (1980)
observed that "what happens between contact and change may
be difficult, reactive, and conflictual rather than a smooth
transition" (p. 10). He suggested "there may be a
characteristic three—phase course to acculturation:
contact, conflict and adaptation" (p. 11). He viewed
adaptation as "the reduction of conflict within an
interacting system" (p. 11).

This description of acculturation continues to echo the
experiences of families with handicapped children as they
enter the services system for identification and treatment
of their child's problems and attempt to get their needs
met. There is contact; there is conflict, at least for many
families; and, over time, family efforts at coping are aimed

at some sort of adaptation to the handicap.

185

Another helpful concept from acculturation literature
is that of biculturalism. Szapocznik and Kurtines (1980)
proposed a two-dimensional model of acculturation, where the
person is able to participate in both cultural communities.
They suggested:

If the cultural context within which acculturation

takes place is bicultural, then the acculturation

process will tend to take place along two independent

dimensions.... The first dimension consists of a

linear process of accommodating to the host culture;

the second dimension consists of a complex process of
relinquishing or retaining the characteristics of the

culture or origin. (p. 144)

Indeed, this may be the best way to explain the
experience of families with handicapped children, that they
are existing and operating in two cultures, accommodating to
the world of special needs while deciding about holding onto
or giving up parts of their old lives as members of
able-bodied society. Family members themselves remain
able-bodied, but are subject to many changes and pressures
relating to being disabled in our society. Perhaps the most
accurate metaphor is that they are becoming bicultural.

Families of handicapped children may struggle to become
a successful part of the world of special needs, just as
immigrants may struggle to become a successful part of
American society. A text on immigration suggested how hard
immigrants worked, how well they did, and how they used what
could be a stumbling block as an instrument to get further
ahead. Antin (1914) wrote eloquently about immigrant

children doing well in school:

186

They who begin handicapped, and labor against
obstacles, leave our own children far behind on the
road to scholarly achievement.... conditions of life
and work that would prostrate our own boys and girls,
these others use as a block from which to vault to the

back of prancing Fortune. (p. 129)

Antin (1914) asked: "What is the galvanizing force
that impels these stranger children to overmaster
circumstances and bestride the top of the world?" (p. 129)
And she answered: "It is a special virtue, yes: the virtue
of great purpose" (p. 130).

Perhaps, for the families who do well, and who manage

to adapt successfully to the world of special needs, it is

because of this "virtue of great purpose."

Summary of the Acculturation Process

Families with handicapped children encounter the world
of special needs as they recognize and adjust to the reality
of a handicap in their child. The process by which they
adjust, at least for some families is like an acculturation
process where they become familiar with and knowledgeable
members of a new world. The world of special needs is seen
by many as a separate world. Acculturation is a dynamic and
vibrant process involving contact between members of two
cultures and resultant changes in behavior and value
orientation. In this case, members of the dominant society
(of able-bodied people) acculturate to a minority culture

(of disabled people). Able-bodied family members might more

187

accurately be said to become bicultural, as they learn to
function in both worlds.

The families work to mesh the demands of their two
worlds, moving towards consonance, as discussed in the next

section of this chapter.
The Concept of Consonance

As families acculturate, they work to establish
consonance among themselves and between themselves and their
environment, to achieve a good fit between what they want to
do and what they are able to do, and between what their
needs are and what is available to them from the larger
society. When families are trying to decide what to change
and what to keep in their lives as they respond to their
child's special needs, they try to fit in all the important
things.

The following description of the emerging theory
discusses the concept of consonance. A theory statement is
followed by specific references to the collected data which
support it. Then, literature on consonance is reviewed and
a summary statement given.

Theory. The multiple demands of caring for a young
handicapped child can tax a family's resources, but if their
world can respond in a helpful fashion to their efforts to
address their emotional, cognitive, physical, social, and
other needs, they are in a better position to achieve a

satisfying life for themselves.

188

Families work to make life better for themselves. They
aim to make their energy focused and effective. They strive
for all this to come together, for all the parts, as much as
possible, to mesh. There is a push for consonance in their
lives, for the parts to be in tune, for the demands of the
handicap and other needs to be in line with their abilities
-- for the emotional, cognitive, physical, social, and other
aspects to be consistent, congruent, within and among all
the areas. They try to have all the parts of their lives
working in harmony, and to master whatever the handicap
requires.

A philosophy emerges during all this that the handicap
is just another part of their lives. For some reason, the
child they love has a handicap, a part they did not plan on.
They do not see the handicap by itself, but as part of the
child. The fact that the child exists, that they have the
child, is more important than how the child is or how busy
life is trying to meet the needs. They accept the life that
has been given them, and move on.

Qgpg. Both families had a pretty good fit of needs and
services for their children. They were able to get good
pediatric care, the advice of medical specialists when
needed, educational programs for their child, and the needed
therapies. They felt the financial burden of all these
services, but were basically able to get what was needed.
They also had strong support people in their lives, who

helped them in different ways, as discussed in Chapter 3.

189

Sometimes the families experienced a lack of fit.
Obtaining respite care was an area where the Carters needed
a service that was unavailable to them. Also, Sandy
occasionally had a hard time getting satisfactory medical
care for Krissy, as described in Chapter 3. Finally, the
Carters had trouble with transportation, sometimes, when
their vehicles were undependable.

Transportation was sometimes a problem for the Bradleys
too, as when they tried to get Robbie into the asthmatic
swim class and were unable to find a way to get him there at
the time the class was held. In addition, the Bradleys were
having trouble getting the occupational therapy which had
been recommended for Tommy; it was hard to fit it into his
already busy schedule, but they were confident they would be
able to work it in eventually.

Consonance in the lives of the families was important
in other ways than whether services were available. The
families also needed to make decisions which were consonant
with their goals and desires. When the neurologist in
Portland suggested an institution for Krissy, as described
in Chapter 3, it was something Sandy would not consider,
saying she would never do that, "unless it came to the point
it was bad for her to be home. I don't consider her a
sacrifice." Given Sandy's feelings about her child and what
her child needed, it was not consonant for her to do

otherwise.

190

In choosing a program for Krissy, Sandy knew she wanted
one with lots of space for Krissy's motor needs, a number of
children in the program for Krissy's social development, and
enough staff so Krissy could have the individual attention
she needed. It was consonant for Sandy, being a caring,
involved advocate for Krissy, to be aware of Krissy's
multiple needs and to evaluate available programs, as she
did, with this knowledge.

Aware of the many things they wanted to do, the
Bradleys figured out a routine and a lifestyle for
themselves which worked for them, despite its hectic pace.
Being people who wanted "the best" specialists for Tommy,
they put time and energy into traveling to get the
evaluations they felt he needed. Yet, with all the energy
they put into Tommy's program, they did not let Tommy's
needs take precedence all the time. Beth told how in the
morning, either she or Eric would dress Tommy, even though
it would probably be better for him to do it himself. At
that busy time, it was more important for them all to get
out the door on time, and so they dressed Tommy. At other
times, he dressed himself. So the parents addressed Tommy's
need to work on dressing himself, but in ways that fit other
demands on their time.

With all the work Tommy had required and would continue
to require, Eric and Beth said it was never "too much,"
pointing out that if life got too busy, it was all the other

things they were doing which were too much. The therapies

191

were what he needed, so they got him to the therapies. Beth
stated what could be called a philosophy about the handicap:
"This is your kid, and you can't help but love them the way

they are, and their disabilities are just as much a part of

them as what they do at school, and how they give you a hug.
That's them and you can't disassociate it."

Literature. Many authors have addressed the idea of

 

consonance in the lives of children and families, and the
importance of good fit. When speaking in front of the
Select Committee on Children, Youth, and Families, Vincent
(Hearing, 1985) talked about the stresses that families with
young handicapped children are under, both the regular
stresses of families in our society as well as additional
stresses which they experience:

because of the way that we deliver and do not deliver
services in our communities.... in half the States in
the United States, we do not provide public early
intervention. So, now, we have placed an additional
stress on a family, a family that is often overburdened
with single parenthood, lack of education, we tell them
it is your responsibility to go find service, to
scramble, to fight, to push, to holler, and all too
often the families do that, and then they quit because
they are not responded to and they cannot make a
difference. (p. 13)

Vincent's remarks are a good example of the lack of fit
or consonance between what the family needs and what is
available for them in their environment.

Melson (1983) noted:

Stressful situations may be defined as ones in which

individuals or families recognize a poor fit between

their demands and those of the environment. Because of
such a discrepancy in demands, the normal range of

192

functioning is inadequate to satisfy needs and
expectations. (p. 154)

Thomas, Chess, and Birch (1968) discussed the concept
of "goodness of fit" (p. 137) in looking at development,
behavior, and stress in children. Goodness of fit:

implies that the adequacy of an organism's functioning
is dependent upon the degree to which the properties of
its environment are in accord with the organism's own
characteristics and style of behaving. According to
this view, optimal development in a progressive manner
derives from the interaction of the individual with
environmental opportunities and demands that are
consonant with its capacities and behavioral style.
Conversely, disorders of functioning may be viewed as
deriving in the first place from dissonances or
discrepancies between the respective characteristics of
the individual and his environment. (p. 137)

Korn (1984) studied continuities and discontinuities in
terms of temperament, from infancy to young adulthood, and
used the goodness of fit concept:

The idea of goodness of fit involves the orderly
interaction of the developing individual and
progressive demands of the environment. Thus,
individual characteristics and capacities and
environmental properties must be seen as an interacting
complex. Stresses, by themselves, are not excessive,
nor are individuals, as such, incompetent. We have to
start with the idea that child—environment interactions
are a good fit, are consonant, and that optimal
adaptive functioning is the outcome. Interactions that
are not a good fit are dissonant, and maladaptive
functioning is the outcome. (p. 191)

Bailey et. al. (unpublished) suggested substituting
"family" for "individual" in the above definition. The
definition then suggests that family characteristics and
environmental properties are an interacting complex, and

"implies that consonance of family-environment interactions

193

is associated with good outcomes whereas dissonance, or
poorness of fit, results in maladaptation" (p. 6).
This substitution must be done with care, however.

Melson (1983) noted:

Although we can think of stress felt by either
individuals or family units in terms of these concepts
of demands and fit, understanding family stress is
considerably more complex than thinking about
individual stress, since the family represents a
multiplicity of individual demands, perceptions of the
environment, and understandings about the sources of
stress. Individual differences in personal history,
temperament, and attitudes make it inevitable that
differences will exist within families -— not just
between families -- in the perception of environmental
demands, person demands, and hence, the degree of fit
between the two. (p. 155)

Melson (1983) also cautioned:

One must not conclude that stress or lack of fit
between family and environmental demands is "bad" and
that adaptation is, therefore, "good". The question of
values is a separate one. Families can adapt to
conditions that are physiologically and psychologically
harmful to them. They can respond to adverse
environments by developing destructive, abusive
interaction patterns. Such patterns may fit
environmental conditions very well, becoming stable and
even resistant to change. Adaptation does not
necessarily denote a "successful" individual or family,
just as stress is not necessarily a condition from
which families flee. (p. 155)

This consonance/dissonance is between the individual or
family and the environment. There is also cognitive
dissonance (Festinger, 1957), regarding the drive in humans
for consonance, or "consistency between what a person knows
or believes and what he does" (p. l). Festinger posited
that dissonance:

the existence of nonfitting relations among cognitions,

is a motivating factor in its own right. By the term
cognition,... I mean any knowledge, opinion, or belief

194

about the environment, about oneself, or about one's
behavior. Cognitive dissonance can be seen as an
antecedent condition which leads to activity oriented
toward dissonance reduction just as hunger leads to
activity oriented toward hunger reduction. (p. 3)

Families act to reduce this dissonance as best they
can, but sometimes the kind of help they need is just not
there. Green (1982), for example, said families search for
competent and caring professionals, and:

Though families have commented more frequently on the
absence of competent medical help, deficits have also
been noted in locating competent assistance from
dentists, attorneys, insurance agents, rehabilitation
counselors, financial counselors and trust officers.

(P- 12)

Green (1982) also pointed out the dissonance which
exists between the efforts of families with handicapped
children, or their desires, and their realities:

Most families do not see the birth of a handicapped
child as unmitigated tragedy. The dissonance of
conflicting emotions and the variance between hopes and
reality are the source of the stress.... Such is the
plight of the families of the handicapped: accepting
responsibility, but resenting the burden; wanting to
give good care, but exhausted from the dailiness of the
demands; wanting to be fair to all family members, but
feeling a special accountability for the abnormal
family member; needing extra resources to c0pe, but
lacking the time and energy to earn the money to pay
for the help; dreading institutionalization but longing
for freedom; assuaging guilt and fear and doubts with
endless toil. (p. 15)

Summary qfithe Concept of Consonance

Families with handicapped children are working to
increase the consonance and reduce the dissonance in their
lives. It is dissonant for them to want to be good parents

and relatives of the handicapped child, to want to get what

195

is best for the child, and not be able to do this. They
want to get the needs of all the family members met in some
reasonable way. They want to work on this, due to their
beliefs, and they need the environment to be responsive.

The goodness of fit concept suggests that the environment
must match the individual or family characteristics for a
good fit, and that good fit is conducive to good adaptation.
Melson (1983) cautioned that a good adaptation is not
necessarily a healthy one, and one must be aware that the

question of values is a separate issue.
Additional Literature

Two important topics related to the acculturation
process and the concept of consonance should be looked at
before completing this chapter: (a) the importance of
understanding family strengths and (b) McCubbin and

Patterson's (1983) theory of family adaptation to crises.

Family Strengpps

Families use their many strengths, those they already
have and those they develop, in this acculturation process.
Strengths have been discussed in the literature by a number
of authors. Gould and Moses (1984) talked about looking at
children's strengths, saying the professional's role is:

to guide a parent in seeing the child's strengths as

well as his weaknesses. How often parents and

professionals alike concentrate on a child's problems

and overlook the special traits and abilities that make
him such a unique little person. (p. 17)

196

The same can be said of families. How often do
professionals working with families of handicapped children
concentrate on the family's problems and overlook the
special traits that make them such a unique family unit?

Vincent (1984) discussed professionals' negative
beliefs that disregard family strengths: (a) "that parents
and family members do not know what their children can
do.... we hold parent opinion as suspect... as not valid"
(p. 37); (b) "that parents do not know what appropriate
goals are for their children... what their kids need... what
they should be working on" (p. 38); (c) "that they do not
know how to teach their kids... a lot of what we say to
parents is that you do not know how to teach. We
continuously tell them how to do it our way" (p. 39); and
(d) "that parents need us... to solve their problems" (pp.
39-40).

Pointing out that "we need to learn to tune into the
capabilities of families" (Vincent, 1984: 36), Vincent
noted that families have even gone a step beyond just
tolerating and accepting differences: "They have worked on
cherishing the members of their families with disabilities
for who they are, for what they teach them, for what they
give them, for what they are able to learn" (p. 41).

Turnbull (Hearing, 1985) told how her research
discovered strengths in families: "Often we have been
inspired by how well families do... families with children

having disabilities have many strengths and many ideas and

197

many coping strategies as well as many stresses" (p. 18).
Vincent's (Hearing, 1985) words echoed this:

Families with disabled children are under stress.
Families with disabled children are usually not falling
apart.

They are capable and competent people. They have a lot
of good ideas about how to solve their problems....

they know what they need from us as a profession, from
us as a government, from us as a society to meet their

needs. (p. 14)

Turnbull (Hearing, 1985) listed strengths families use,
including (a) social support, (b) spiritual support, and (c)
formal support. She also described a cognitive strategy
that families employ, called reframing:

There are many families who take a very difficult
situation and are able to see the positives as well as
the negatives. But, we do not really understand how
that works.

We need to know more about families who are able to
translate liability into asset, and disability into
ability. That does not mean that children with
disabilities are not extra stresses; many times, they
are, but we need to help families realize positives as
well as the negatives. (p. 19)

Some authors have commented on the lack of focus in
clinical practice and in the research literature on the
positive aspects of families with handicapped children.

Longo and Bond (1984) noted:

Few clinicians... are prepared to assess families who
demonstrate high degrees of adaptability and who
function extremely well after the diagnosis has been
presented and the initial grief reaction has passed.
There are only a few conceptual frameworks that attempt
to define healthy family functioning and even fewer
models to help clinicians differentiate parents in
disequilibrium from those parents who are stressed but
coping well. (p. 57)

198

These authors went on to say:

One common assumption is that dysfunction is a

normative pattern in families with a handicapped or

disabled child. It is conceivable that some clinicians
may expect to find problems in these families when none
exist. Consequently, an inaccurate assessment of
denial may occur. Clinical intervention strategies are
then skewed toward a nonproductive, and sometimes
dangerous, direction rather than offering realistic

support and assurance. (p. 63)

Family strengths and resources are an important element
in how families adapt to crises in their lives, both as seen
in the acculturation theory and in McCubbin and Patterson's
(1983) model of family adaptation to crises.

A detailed consideration of McCubbin and Patterson's
(1983) Family Adjustment and Adaptation Response (FAAR)
model may be helpful in understanding how the proposed
acculturation theory fits into existing ideas about how
families adapt to crises. The final section of this chapter
will describe the McCubbin and Patterson FAAR model and

compare it to the acculturation theory.
Family Adaptation to Crises

McCubbin and Patterson's (1981) Double ABCX Model of
Family Behavior, discussed in Chapter 1, focuses on the
complex interaction of factors in the family's response to
stressors, as this response occurs over time. McCubbin and
Patterson (1983) further developed this model to focus more
specifically on the processes in which families engage to
adapt to the demands made upon them. In this Family

Adjustment and Adaptation Response (FAAR) model, these

199

authors suggested there are two phases in families' response
to a crisis: (a) the adjustment phase and (b) the
adaptation phase, both of which occur within the context of
"social/cultural, situational and developmental stressors"
(p. 20). The family is a system, operating interdependently
with other social systems, and therefore their "coping
strategies involve management of various dimensions of
family life simultaneously" (p. 24).

The Family Adjustmept and Adaptation Rgsppnse_(FAAB)

 

5999;. The adjustment phase of the FAAR basically utilizes
Hill's (1965) ABCX Model. As explained in the Chapter 1
discussion, the ABCX Model suggests that the original
stressor (A) interacts with the family's resources to
respond to the stressor (B) and with the definition the
family makes of the event (C) to produce the crisis (X).

In the FAAR, this pre-crisis phase involves resistance
to the stressor, where family members encounter the stressor
(A) and respond using their resources (8) and their unique
perception of the stressor event (C) in ways which will
enable them to function in a relatively normal manner, to
avoid a situation requiring basic changes in their structure
or interaction patterns (X). McCubbin and Patterson (1983)
suggested that "a family may employ at least three basic
adjustment coping strategies, used alone or in combination,
to bring about family adjustment: avoidance, elimination,

and assimilation" (p. 21). Avoidance involves denying or

200

ignoring the stressor; elimination involves getting rid of
the stressor; and assimilation involves accepting the
stressor and taking it into the family structure without
making major changes.

The adaptation phase of the FAAR employs McCubbin and
Patterson's (1983) Double ABCX Model, with the following
post-crisis variables:

aA, a pile-up of stressors and strains which include:
"(a) the initial stressor and its hardships; (b) normative
transitions; (c) prior strains; (d) the consequences of
family efforts to cope; and (e) ambiguity, both intrafamily
and social" (p. 14);

bB, family adaptive resources, both existing and
newly-developed, which include: "(a) family members'
personal resources; (b) the family system's internal
resources; and (c) social support" (p. 16);

cC, family definition and meaning of the crisis, which
works to:

(a) clarify the issues, hardships, and tasks so as to

render them more manageable and responsive to

problem-solving efforts; (b) decrease the intensity of
the emotional burdens associated with the crises
situation; and (c) encourage the family unit to carry
on with its fundamental tasks of promoting members'
social and emotional development; (p. 18) and

xx, family adaptation, the result of an interactive
process of the above variables which constitutes the
families' coping efforts "to achieve a balance at both the
individual-family and family-community levels of family

functioning" (p. 13). Family adaptation includes a

201

"continuum of outcomes... the positive end of the continuum
of bonadaptation, and the negative end of the continuum is
maladaptation" (p. 13).

Once a crisis (X) occurs, change is required, and the
family enters the adaptation phase, which involves family
restructuring and consolidation over time. Restructuring
and consolidation are two similar processes involving the
aA, bB, cC, and xx of the Double ABCX Model. To
restructure, family members "make changes in their existing
structure which may include modifications in established
roles, rules, goals, and/or patterns of interaction" (p.
22). In the restructuring phase, family members deal with
the pile-up of stressors (aA) discussed in the Double ABCX
Model, and they use their resources and social support (bB)
to assist them in their efforts, and in their redefinition
of the situation (cC).

After these restructuring changes, the family moves on
to consolidation where family members work to "bring the
entire family into a coherent unit working together around
and in support of the newly instituted changes" (pp. 22-23).
The consolidation phase involves an interactive process
similar to that of the restructuring phase. In this phase,
a pile-up of stressors (aA) and the family's resources and
support (bB) interact with the family's shared meaning of
the situation (cC), to achieve some sort of adaptation (xX).
Adaptive coping strategies described by McCubbin and

Patterson (1983) include "synergizing, interfacing, and

202

compromising" (p. 23). Synergizing involves the family
pulling together to accomplish shared goals; interfacing
involves working at the community level so that the family,
with its changed structure, will fit in better; and
compromising involves accepting imperfect, less-than-desired
solutions.

The end product of this process is family adaptation,
either good or bad. This is defined as the "degree of
member to family and family to community fit" (McCubbin and
Patterson, 1983: 20). These authors noted:

Successful adaptation also requires coping efforts

directed at system maintenance, i.e., integration,

morale, and member self-esteem. As the family works to
restructure and consolidate, it needs to know that
there is something, i.e., the family itself, worth

making all these changes for. (pp. 23—24)

Applicatipn of the FAAR Model to Families with
Handicapped Childpgn. In the adjustment phase, families
receive the diagnosis of a handicap in their child (A), and
they use available personal, family, and community resources
(B) to help themselves make sense of what is happening (C).
Some families may deny that there is a problem (denial),
others may believe the diagnosis is in error and so
disregard it (elimination), and for others, the diagnosed
handicap may be so minor that they can simply assimilate
whatever is required by the handicap into their lives
without major changes (assimilation). For most families,

though, the diagnosis of the handicap becomes a crisis (X)

which requires major changes in their lives.

203

In the post—crisis, adaptation phase, families with
handicapped children go through two processes, restructuring
and consolidation. In restructuring, families attempt to
deal with the pile-up of stressors and strains (aA). These
include: the original stressor, (the discovery of having a
handicapped child); the changes the handicap will entail in
their lives, (any associated hardships); any normative
transitions and prior strains existing in their lives (the
stressors and strains that families with young children
normally live with); consequences of their coping efforts
(e.g., fatigue from pursuing the therapies the child needs
or added stress from taking another job to help ease the
financial burdens of the handicap); and ambiguity
(uncertainty connected with the handicap such as uncertainty
about the best course of action or uncertainty about the
future).

As they cope with the pile-up (aA), they use their
adaptive resources (bB), including family members' general
capabilities, and their skills and experiences with
stressful situations; family resources such as
problem-solving and decision-making abilities, and their
flexibility and cohesiveness as a unit; and available social
support and community services. They come to some
understanding of the crisis, (cC), a redefinition of the
event which helps them clarify what is happening and what

they can do about the handicap to make it more manageable;

204

which helps them decrease the emotional intensity of having
a handicapped child; and which enables them to carry on as a
family getting family members' needs met.

After making necessary modifications in their lives,
(restructuring), they work with any continuing pile-up of
stressors and strains (aA), using their resources and social
supports (bB) to come to a shared family meaning of their
situation (cC), and an integration of the changes
(consolidation) in ways that support the family members and
maintain their family system. This, in turn, leads to
adaptation, somewhere on a continuum of bonadaptation (good)
to maladaptation (poor).

Comparing the Acculturation Process to the FAAR. The
acculturation process, in one sense, runs parallel to the
adaptation phase of the FAAR model, including restructuring
and consolidation. Acculturation assumes, as does the FAAR,
that the family is a system operating interdependently with
other social systems, and that families must manage elements
of family life in a simultaneous manner.

Acculturation starts with the crisis of diagnosis of
the handicap (the X of the FAAR), and the family's
realization that something must be done about it -- needing
to adjust to the reality of being here (the lst element of
the acculturation theory). This happens in the context of
their regular lives as families with young children (aA of
the FAAR). Families who either deny, eliminate, or
assimilate the diagnosis in a manner nondisruptive to their

lives would not be seen as acculturating.

205

Then families begin the restructuring needed. They
engage in activities designed to use their existing
resources (bB of the FAAR) -- they use their strengths as a
family, and skills and experiences from their old life to
help them in this adaptation (2nd element of the
acculturation theory). They develop needed resources (bB of
the FAAR) -- they learn medical terms and professional lingo
(3rd element of the acculturation theory); learn whom to
trust and develop a support and information network (4th
element of the acculturation theory); learn survival
behavior (5th element of the acculturation theory); and
learn how the medical and social services systems work (6th
element of the acculturation theory).

In all of this, they decide how much of their old
lifestyle they are willing to change and what things they
wish to keep as they adapt to the special needs (the seventh
element of the acculturation theory), and determine what the
meaning of the handicap is for them (cC of the FAAR). This
meaning could be expressed as a philosophy of the handicap
(part of the consonance they seek to achieve). Once the
families recognize that the changes in their lives are
working for them, they try to establish and maintain
consonance and in effect consolidate the changes, as the
FAAR suggests.

Family members work together among themselves to
develop a shared orientation to the handicap (synergizing);

they work with the community so that their changed needs and

206

functioning will be more in balance with the community
(interfacing); and they reach solutions which, if not
perfect, are at least something they can live with
(compromising). These last adaptive coping strategies
described by McCubbin and Patterson (1983) are part of the
concept of consonance with which the acculturation theory
concludes.

The acculturation theory also suggests that, as
families acculturate, they are impacted in many dimensions
of their lives, in a simultaneous, interactive fashion.
Family members are affected emotionally, cognitively,
physically, socially, and financially. The FAAR does not
elaborate on separate dimensions of family adaptation.

Perhaps things happen in a less organized fashion
during acculturation than with the FAAR model. In the
acculturation process, families are continuously addressing
changes in response to multiple demands in their lives, and
may be in different stages of the FAAR simultaneously -—
perhaps considering the need to change in one area as they
restructure in another area and consolidate changes in yet a
third. Acculturation does not happen in identified phases,

but in a more global movement from the status of newcomer to

that of veteran.
_S_ulnmary of Family Strengths and Family Adaptation to Crises

The reviewed literature suggested that clinicians and

researchers might ignore or underestimate the importance of

207

family strengths in the process of dealing with a handicap
in a young family member. Family strengths and adaptive
resources are a crucial element in both the acculturation
theory and in McCubbin and Patterson's (1983) model of
family adaptation to crisis, the Family Adjustment and
Adaptation Response (FAAR). This model was explained,
applied to families with handicapped children, and compared
to the acculturation process to demonstrate how the
acculturation theory fits into existing ideas regarding the
family's response to a crisis.

The final chapter will summarize the research process,
address some reflections on important questions arising from
this research, and suggest directions for researchers,

service providers, families, and the general society.

Chapter 6. FINAL CONSIDERATIONS:
SUMMARY, REFLECTIONS, AND DIRECTIONS

Summary of the Research

Families encounter many challenges as they experience
the reality of a handicapping condition in their young
child. The child continues to need a responsive nurturing
environment to support growth and development, but, with a
handicap, the child's needs are different. The needs of
other family members also change with the discovery of and
adjustment to a handicap.

Since children grow and develop within the context of
their families, it is important to be aware of family
experiences and to understand family needs, in order to help
handicapped children reach their full potential as human
beings.

The purposes of this research were two-fold: (a) to
gain a deep understanding of the needs of families as they
cope with the experience of having a young handicapped
child, and (b) to generate grounded theory about families
and the demands placed on them in this situation. An
ecosystems perspective provided the conceptual framework for
the research and for the presentation of the theory.

Since the goal of this research was to understand, from
a family's perspective, what it is like to be part of a
family with a young handicapped member, ethnographic

methodology served to generate grounded theory. Two

208

209

families were studied in an indepth fashion, using
ethnographic interviewing of family members and participant
observation of family activities. Supplementary techniques
included: (a) developing genograms, (b) mapping, (c)
eco—mapping, (d) viewing family photographs and videotapes,
and (e) completing time logs of family activities.

Criteria for selection of the study families were as
follows:

1. The families were served by the referring agency;

2. The first two families meeting the criteria and
willing to participate in the study were selected;

3. The handicapped child was:

(a) aged 6 or less;

(b) of either gender; and

(c) diagnosed as having a developmental disability
(a specific diagnosis was not necessary);

4. The family of the handicapped child:

(a) consisted of two adult parents, living in the
same household with the handicapped child and siblings;

(b) had at least one sibling in the family;

(c) had at least one of the child's grandparents
in an active relationship with the family and available for
contact; and

(d) were located geographically such that frequent
home visits were possible.

Data were recorded by tape recording and notetaking and

analyzed by the joint collection-coding-analysis process

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called the constant comparative method. The time frame for
involving these families was a period of about 18 weeks
each. Total time spent with the families was 68 hours.

This research process resulted in many products, only
one of which was the theory just presented which was
generated from the data collection. The research also
yielded questions and reflections and indicated directions
in which the research material could be used. After
discussing reflections on some important questions coming
out of this study, this chapter offers a summary of the
theory which emerged from the research and suggests

pertinent directions.

Reflections

One of the benefits of the ethnographic method is its
ability to help the researcher obtain information and ideas
that would never be tapped with other methods. Going
directly to the families, without any specific notions about
what is important or not important, the researcher is not
bound to find information to support or deny specific
hypotheses, but is free to explore what is there. A
researcher who is testing hypotheses looks for answers which
support the hypotheses or not. The ethnographer essentially
goes in not to get answers, but to learn about questions.
The ethnographer is looking for the right questions, that
is, what to ask to understand something important about the

target population as a whole.

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Some important questions came from this study,
questions which were not answered by the theory. Ideas
about these questions are more properly called reflections
than theory, and so are offered here, apart from the theory.
These questions include:

1. What is handicapped?

2 What is acceptance?

3. What is support?

4 What happens to family members' anger and
grief?

5. What are the costs to the family of having
the handicapped child?

These questions are not new, and have been addressed
elsewhere, in the literature, and most certainly in the
hearts and minds of those whose lives are intimately
connected with handicapping conditions. My purpose here is
to share ideas from this research which readers may find of
interest.

1. WHAT IS HANDICAPPED? This question arose from data
collection with the Bradleys. If a child has a handicap and
the people in his world say he isn't really disabled or
handicapped, while admitting he needs the many therapies he
is getting and while putting lots of energy into meeting the
child's special needs, are they denying the handicap? How
are they perceiving the handicap? How can a child both be

"handicapped" and "not really handicapped" at the same time?

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Perhaps having a handicap is in the eye of the
beholder. If a handicap is something that hinders you,
prevents you from getting what you want, keeps you from
functioning in ways that are important to you, then it is a
handicap, a hindrance. You are disabled, not able to do
what you want. But if you are able to get what you need to
make the handicap less of a hindrance, if it seems you can
do most everything that you want, that you can compensate
somehow, then, though you still have special needs, maybe it
seems as though you are not really handicapped. If you are
the parents of a handicapped child for whom all the right
things usually happen, in terms of services available and
people there to assist in getting what you want for yourself
and your family, if you can get through the day and the week
and it feels like the norm, rather than something
overwhelming you, then maybe you can say the child isn't
really handicapped.

Does having a handicap or disability make you
handicapped or disabled? Yes and no. Consider that
handicappedness really exists on a continuum -- people who
are "well" may have some degree of illness, but still be
considered well, just as those who are "ill" often have some
degree of wellness. People who are considered "able-bodied"
may have some degree of disability, and those who are
"disabled" may be quite able, even gifted, in certain
aspects. As noted in Chapter 4, Shearer (1981) pointed out

that there is a continuum of abilities and inabilities which

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exists in all of us. Part of this may be attitudinal:

There is "having a handicap" and there is "being
handicapped." The former is a situation in which one finds
oneself, the latter is a response to that situation.
Accepting that one "has a handicap" and dealing with the
situation such that the focus is on one's strengths and
abilities to develop as far as possible may make it that one
does not see oneself as "being handicapped."

Maybe the concept of handicapped as perceived by the
family members, as felt on a day-by—day, this-is-the—way—
we-live basis, has to do with how well they have mastered
the challenges of the handicap, how well the child seems to
be doing, how well they trust their abilities to keep on
handling things, and how satisfied they feel about the
system's ability to respond. In the context of a world
where things are working, where there is a good fit between
what is needed and what is available, maybe it ends up
feeling like "not really handicapped."

Perhaps the "victim" vs. "survivor" attitude is
applicable here as well. Is the experience of having a
handicap different if one sees oneself as a "victim" of a
handicapping condition, rather than as a "survivor" of that
same condition? In Chapter 4, I noted Peters' (1987)
discussion of the term "victim" and its emotional overtones
that one is helpless, powerless, and dependent. But
"survivor" is a word suggesting one has weathered the storm,

managed to make it through, and has survived or mastered the

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experience. Perhaps there is a third level here too, that
of transcending the experience, where one has so thoroughly
adjusted to the fact of having a handicap, that it is no
longer thought of as a separate, noteworthy part, no longer
seen as a challenge one has overcome or something one has
"survived," but simply something one has.

2. WHAT IS ACCEPTANCE? This questions first arose
with the Bradley family as I grappled with the question of
what is handicapped, and then again, more forcefully, with
the Carter family. If you judge by the amount of energy
that the Carter family put into meeting Krissy's needs, it
seemed that they had accepted her handicap and all that it
meant to their family. They admitted they did not know how
bad the brain damage might be and they did not know what the
future would bring. Yet Sandy Carter seemed to be saying
that if they could control the seizures, she hoped that
Krissy would be able eventually to take care of herself.
Chuck Carter hoped that one day Krissy would "outgrow it,"
though he said he did not know if that would be or not. Was
this realistic thinking about a child as severely
handicapped as Krissy who, at age five, was not yet toilet
trained, not talking, was having continuing seizures, making
only slow progress, and was functioning in many ways at a
2-year level? Isn't acceptance of the handicap acceptance
of the reality? How does acceptance of the handicap relate

to realistic thinking about the handicap?

215

Perhaps, from one point of view, it was unrealistic to
think that Krissy might outgrow it or even be able to take
care of herself when older. Krissy was delayed in her
development and her seizures were still not controlled. At
least one doctor had told the Carters Krissy should be
institutionalized. But her pediatrician noted that Krissy
could make good progress when she was seizure-free, and
Krissy was having fewer severe seizures at the time of the
research than she had been having a year before. Krissy
could do some things that she could not do before. On her
good days, she could make connections, play with toys,
explore her environment, and work in a cooperative fashion
with her parents and teachers. Who is to say how far she
could go, if they could control the seizures? Who can say
what her potential is?

For everyone, there is a ceiling on developmental
potential. For children, at age five, it is impossible to
say what that ceiling might be. It is the same with Krissy.
Recognizing that Krissy could make good progress in her
development when she was seizure-free, the Carters were
accepting the reality of the handicap at that point; they
realized Krissy was slow in her development, and that she
had suffered some brain damage. They accepted this and
worked to make sure Krissy got what she needed -- the loving
nurturance of her family, special care to control the
seizures, and therapy and education to ameliorate the

effects of the handicap. As for the reality of the future,

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they were living one day at a time, and they weren't
addressing any future reality. Since that reality was not
clear, how could they address it? Who could say, with any
certainty, what that reality would be?

Acceptance of the handicap is a process, not something
one "accepts" at one point, and then all the issues are
resolved forever. It takes families time to assimilate and
understand all that must be done, before they can work
through to acceptance. Even then, their perspectives on the
handicap may change over time as the requirements of the
handicap change with the growing child and as the multiple
needs of family members change. Neither the child, the
family, nor what the handicap requires remains static. Does
acceptance of the fact that the child has special needs
which require extra time and energy change in this '
situation?

Perhaps acceptance of the handicap and where the family
members are with it is related to some sort of balance
between the reality of today tempered with hope for
tomorrow, recognition of where they are and where they have
been mixed in with hopes for where they want to go.

Is progress also related to hope? The Carters had a
lot of hope for Krissy and trusted in their ability to keep
providing her with things she needed to continue making
progress. Without this hope, maybe all her progress would
stop; without the hope, it would be difficult to keep

putting so much energy into her program.

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What about denial of the handicap? Could it be that
denial of reality is related to the absence of hope? A
parent who says a handicap is so severe there is no hope,
may sound realistic, especially to those who would say the
child should be in an institution. But is this not denying
the potential that may be there for the child to make some
progress?

The Carters were working hard to help their daughter
reach her full potential. They were accepting the reality
of the handicap, of where Krissy was, and the amount of time
and energy she required, bringing that into line with where
they had hoped she would be, facing the next steps in her
development. Perhaps an important part of working with her
and facing these next steps was their strong hope for the
future. With hope, parents can work with the child to reach
whatever the full potential might be. What they hope for
may not sound realistic to others, when related to where the
child is, but it is part of their acceptance of the
handicap, their understanding of what they want to do about
it, and their belief that sometimes people achieve things
you never thought they would. With perseverance and
commitment to a goal, they hope for the best and keep on
going. They focus on what they have and what they might
accomplish.

3. WHAT IS SUPPORT? This question arose from

exploring the support networks of both study families. In

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both families, there were support people available, but each
family described their network differently.

People in certain roles and relationships -— family
members, friends, professionals -- may or may not be
available to do what is needed, when it is needed. The
peeple one might expect to be available may or may not be,
those who are available may not be the ones you would
expect, and those who are available are there in different
ways.

One might expect, for example, that one's parents and
siblings might be the people to whom one would turn for
support when one has a handicapped child. This was largely
true for the Bradley family where many extended family
members were very supportive. This was only partially true
for the Carters, where Sandy's mother and sister helped out
in some ways, but the rest of her family and all of Chuck's
family were uninvolved. The Carters however, had a strong
support system in their friends, who were "like family" to
them.

One might not expect that the doctor who ordered the
DPT shot for Krissy without telling her parents that the
shot could be harmful to her, and whom they were suing
because of this incident, would be someone they would trust
to provide continuing medical care for her, and would be a
major person in their support network. Yet this was the
situation with the Carter family, and it was working well

for them.

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Geography plays a role in the ways support people are
available or not. Sandy's sister Linda had not been
involved in Krissy's care before she and her family moved to
a home closer to the Carters. Proximity made Linda's home a
convenient place for Sandy and Krissy to stop for lunch
after preschool, on the way to Krissy's speech therapy, and
made it more possible for Linda to be available for
babysitting. For other types of support, proximity made no
difference. Distance did not stop Tommy's maternal
grandparents from being among the family's strongest
cheerleaders, nor did it diminish their ability to provide a
shoulder to cry on when needed. Proximity did not help
Eric's step-brothers, who lived nearby but who had little
contact with the Bradleys, to be more involved with them.
Nor did proximity help change the non-availability of
Krissy's paternal grandmother who said: "Don't let her have
a seizure here."

Personal situations also affect who is available to do
what. Sandy's sister Linda felt she could do little to help
Sandy out, with the birth of her twins and the demands of
caring for them. When her boys were old enough to require
less constant care, Linda became more available to offer to
care for Krissy, at least sometimes during the day. Sandy's
mother used to be available to care for Krissy, but with her
health problems had become unable to do this. She helped
out as she could, caring for Chuckie sometimes, and

participating in some activities with Sandy and the

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children. Transportation difficulties, and the distance
from Sandy's mother's home to the Carters', made it
difficult for her even to drop by to relieve Sandy a bit, as
she said she'd like to do. Although Sandy's mother was
involved in a caring way, Sandy did not use her as one of
her main emotional supports. Indeed, Sandy said when she
needed to talk to someone, other than Chuck, it was her
friend Teri to whom she turned.

Perhaps, with a handicapped child in the family, people
will be there for you, or not, in ways they might have been
there even if the child were not handicapped. Perhaps there
is an element of objective reality, for example, as regards
distance and how it affects support, as well as an element
of personalities and emotions here. Maybe some people let
things in their own lives or the reality of distance serve
as a reason for not being more involved; others do
everything they can to overcome whatever obstacles there
might be to being supportive. Perhaps, too, the handicap
may serve to bring you closer to some people, something to
rally around, something that cements an emotional bond. It
can also drive people apart, making it more difficult to
make connections.

4. WHAT HAPPENS TO THE ANGER AND THE GRIEF? Members
of both families told the story of their lives, and shared
feelings of anger, frustration, confusion, and grief. But
these were not the dominant feelings with which they told

their stories, although they said these feelings still

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surfaced. How does accepting the handicap and fitting it
into your life relate to resolving feelings of anger and
grief? What happens to the early strong feelings as family
members move to accept the handicap? Does a parent ever
"get over it?" Does accepting the handicap mean there is no
more anger or grief? If there is still some anger and
grief, does this mean they have not accepted the handicap?

The primary feeling the study parents related seemed to
be the delight in their children and what they could do, the
things they had attained. And yet there were echoes of
grief in Beth's comment about wondering about the child that
would have been, and how hard it was to answer Tommy's
occasional questions about why his hand did not work. There
were undertones of anger in their telling about seeing
parents who did not seem to appreciate the healthy child
they had. And there was frustration in their stories of how
hard they must work to get some services for Tommy. There
was some confusion and dread as they thought about his
future and wondered if he would be able to do as well then
as he had been doing.

For the Carters, the situation was similar. They were
proud of what Krissy was able to do, and they delighted in
her progress. Yet Sandy was appropriately angry when a
professional would not accept her knowledge of what Krissy
needed. There was anger and grief in the knowledge that
Krissy was born a perfect baby and an imperfect medical

system took away that perfectness. There was frustration in

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trying to get a sometimes unyielding medical and social
services system to work. There was confusion sometimes
about what was best to do for Krissy and which of two
seemingly knowledgeable doctors with totally different
answers might be right.

Perhaps after family members have worked through the
initial strong feelings and have begun to accept the
handicap in their lives, they also accept the emotions which
remain. After all, acceptance and understanding of the
handicap is an ongoing process, so why should the emotions
associated with this be static? Perhaps feelings are worked
through on different levels, involving self and family,
extended family and friends, strangers and the wider system,
and anything beyond the here and now.

Perhaps it is too, that, with caring for a handicapped
child, there are many changes as life goes on. The child
changes (or doesn't change as might be expected), the
parents change, the needs of the family and child change.
There is constant readjustment. In one sense, there is a
chronic loss, or re-loss, as the child gets older, and a
chronic need to face the restrictions of the handicap in new
ways. Perhaps it is that the anger and the grief and other
strong emotions remain, but not in a way that overtakes
daily life. Perhaps strong feelings re-surface at various
points in time as new issues arise, needing to be addressed.
So maybe it is reasonable, given all these factors, for

there to be some occasional grappling with grief and anger,

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thought to be resolved, and it has to do with the changing
nature of this reality for the family, and is related to
acceptance of the handicap in this fashion.

5. WHAT ARE THE COSTS TO THE FAMILY OF HAVING A
HANDICAPPED CHILD? Both families could, when asked,
identify benefits to having a handicapped child, as noted in
Chapter 3. But it is also important to think about other
effects of having a handicapped child. The benefits are the
plus side of a hard situation; what is the minus side? What
are the costs of having a handicapped child?

Stress theory suggests that individuals and families
respond in an individual fashion to a stressor. The actual
stress experienced by the family, the actual response to the
demands of having a handicapped child, will be different for
different families and for individuals within those
families. The cost to the family of having a handicapped
child is the strain on the family members and the family as
a whole produced by having to deal with the stressor.

Both of the study families seemed to be functioning
very well in terms of meeting their handicapped children's
special needs, getting the special needs evaluated and
addressed, participating in weekly therapies, and
incorporating needed changes into their daily lives. Yet,
even though the parents said it never got to be too much and
that this was what parents did for their children, and even
though the parents were able to describe their efforts as

all part of the daily routine, their lives could not be

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described as easy. One cost for these families was the
great expenditure of energy needed to maintain the hectic
pace of daily life, and the juggling required to get
everything done, a cost partially absorbed by their good
support systems.

For some families, there may be more serious costs
which are not absorbed by support systems. The impact of
having a handicapped child is felt in several dimensions, as
discussed in Chapter 4. The drain on physical energy, the
continuing emotional stress, the pressure to learn so many
new things and make so many changes, and the shift in social
relationships may contribute to undesired situations such as
(a) difficulties in family relationships, as might be
indicated by family violence, or separation and divorce; (b)
personal problems related to unhealthy coping efforts, such
as eating disorders, and alcohol or drug addiction; and (c)
individual's physical or emotional problems stemming from
stress-related illness and burnout.

Having a handicapped child may have some elements which
are identified by some families as benefits, but which, for
other families, are more appropriately seen as costs. With
any life-altering tragedy, one encounters "existential
questions" (Veninga, 1985: 211), as noted in Chapter 4. It
is an occasion to look at fundamental questions of life and
death, an opportunity to become more reflective and
introspective, and more aware of one's feelings, perhaps

looking at issues that you ordinarily would not look at, or

225

looking at them earlier than you otherwise might. For some,
this is a benefit; for others, who do not want to be more
aware of these issues, and who are frightened by these
questions, it is a cost which causes them to pull away and
shut down emotionally.

Parents of handicapped children may also have
opportunities to become more involved with the broader
community than parents of nonhandicapped children, to travel
more and meet more people. To get what their child and
family need, they may have to be involved with medical and
social services, and thus they may tend to have broader
community contacts than they otherwise might. The parents
may become very knowledgeable about the child's handicap and
about working their way through a complex and sometimes
frustrating services system, may increase their abilities to
know what is needed and go after it in an efficient manner,
and may experience personal growth because of this. This
would be seen as a benefit of the situation. On the other
hand, the increased stress of having to try to get the
services could make the parents feel like falling apart
rather than making them feel stronger. If that is the case,
the situation might be called another cost of having the
handicapped child.

Perhaps it is best to think of the costs and benefits
of having a handicapped child as effects or consequences of
the impact of the handicap on the family, seeing that there

are some pluses as well as minuses, and that these may be

226

viewed differently by involved individuals. It is worthy of
note that perspectives can change over time, and what looks
like a cost at one point in the process of adjusting to the
handicap may turn into a benefit later, just as an effect at
one point may seem a benefit, only to be seen later as a

cost.

Summary of Reflections

These reflections on questions raised by the research
suggest other areas of the experiences of families with
handicapped children which yield rich food for thought on
the experience of being handicapped, acceptance, support,
anger and grief, and the costs of the handicap. The final
‘ section of this chapter focuses on directions suggested by
this research for researchers, service providers, families,

and members of the general society.

Directions

Summarizing the theory may be helpful here before
discussing directions which the theory suggests for
researchers, service providers, families of handicapped

children, and members of the general society.

Summary ofythe Theory

The theory says that there are multiple dimensions of
the impact of a young child's handicap on the family and

that these are dealt with, or at least encountered, in a

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comprehensive, interactive fashion, over time; that families
learn as they go and that they may be emotionally upset,
mentally uncertain, physically exhausted, and/or socially in
flux, or even ostracized. And yet, their child is in need
and some action is required if they are to meet the need.
Having a young handicapped child occurs in the context
of being a family with a young child; families cope with the
stressor of a handicap in the midst of all the things they
have to deal with anyway as a family with young children.
The experience of discovering a young child's handicap,
at least for some families, is similar to the experience of
immigrants encountering a new world. They adjust to the
initial reality of being in this new world, then they begin
to use their skills and knowledge to help them adapt. They
acquire skills to deal with the handicap, learning to
perform therapeutic procedures, building a support network,
becoming familiar with medical and other professional terms,
coming to understand the medical and social services
systems, and generally learning how to survive. They look
for ways to meet their child's needs as well as the needs of
other family members. As the families learn about the world
of special needs, they become more knowledgeable, more adept
at getting what is needed, and they try to make things fit,
so the parts of their world mesh. They work to keep intact
some of the important things in their lives even as they
make necessary changes, but they want things to make sense
to them; they work to establish consonance among themselves

and between themselves and their environment.

228

As this acculturation occurs, it is important to
remember: (a) Families with handicapped children are much
like families with nonhandicapped children, and want many of
the same things for their children; (b) families with
handicapped children will have different tasks imposed on
them because of the nature of the handicap their child has,
so the things each family seeks to accomplish are different;
(c) at the same time, families with handicapped children
have to deal with some of the same general problems similar
to other families with handicapped children; and (d)
families are unique and will do this acculturation in their

own ways.
Directions for Regearchers

There are many ways that this research might generate
new research initiatives. Researchers might test out the
acculturation theory, and look more closely at elements of
the theory such as demands on families in the many
dimensions, existing family strengths and development of new
resources, and how families achieve consonance in their
lives, or they might pursue more information on a minor
aspect of the theory such as parent-professional
relationships.

To test out the acculturation theory, a research design
might look at a number of families over time, and see how
the demands placed on them change, how their perceptions

change, and what helps cause the changes, that is, what

229

moves the process along and what are the important variables
in this process. The families might be selected from an
agency which is set up to assess and plan treatment for
children with special needs, so that the families could be
invited to participate in the study at the point of
diagnosis of the handicap. The families could be followed
over a period of time, e.g., five years, to chronicle what
happens as families acculturate. Ecological assessment
tools and survey questionnaires could be used to identify
the stressors for the families, their response to the
stressors, family strengths and resources, and the meaning
the handicap has for them at different points in time.

Researchers might seek to answer such questions as:
What are the demands associated with the handicap that the
families see in their lives? How do families handle all the
demands? Who helps them and how? What kinds of strengths
and resources do they have available or are they able to
develop to handle the demands? Are they able to make it all
come together in a reasonable way for themselves? What are
the things that don't work well for them? Have the families
developed a philosophy about the handicap, or how do they
see the handicap? What meaning does it have for them? What
are the "unanswered" questions for them and how have they
resolved them?

To look at the ways families achieve consonance in
their lives, researchers might ask how the families see

themselves fitting into the world of special needs, and how

230

this consonance changes over time, perhaps asking how the
families fit the requirements of the handicap into their
lives, or asking how they fit into their two worlds, on a
concrete, day-to-day basis, as well as in a more general or
abstract sense. The researcher would explain the concept of
consonance, saying that families with handicapped children
have many demands placed on them; they must deal with the
things that all families with young children deal with, and
they must deal with the things that the handicap requires
them to do -- in a way they are members of two different
worlds. The goal of the research would be explained as
finding out how families with handicapped children see
themselves fitting into these two worlds.

Since the families are working towards consonance as
they acculturate, an appropriate null hypothesis might be:

H1: There is no difference in the family's perception
of consonance in their lives in the beginning and ending
phases of the study.

In addition, researchers might look at families'
ability to obtain appropriate services for themselves and
their child, suggesting this ability would increase over
time as they acculturate, using the null hypothesis:

H2: There is no difference in the family's ability to
get services for themselves and their child in the beginning
and ending phases of the study.

Researchers might also hypothesize that families with

greater resources or a clearly identified support group

231

would perceive more consonance in their lives, using the
null hypotheses:

H3: There is no difference in perception of consonance
in those families who have a clearly identified support
network as compared to those families who do not have a
clearly identified support network.

Finally, another research focus could be on the ways
that different professionals approach families, how they
decide to include the family in decision-making or not, and
what kinds of parents they find easiest or most difficult to.
work with. This could be a survey of those in various
disciplines, including doctors, nurses, teachers, child
development specialists, physical and occupational
therapists, and speech pathologists. Questions might be
asked about: what they see as the most appropriate role for
parents in the decision-making, care, and treatment of their
child's handicapping condition; what they see as needs of
families with handicapped children; and what are some ways
to encourage parents' appropriate involvement in
decision-making, care, and treatment.

A related research effort could ask similar questions
of parents about the kinds of professionals they like to
work with and why. Questions of parents might include: the
degree of involvement they want in making decisions and
providing care and treatment for their child; their view of
their role in working with professionals; how well they

think most professionals are aware of the needs of families;

232

which kinds of professionals listen best to parents'
comments and concerns; how well are the parents able to

articulate their needs; and what kinds of help do they need

to do this.

Directions for Service Providers

Using the acculturation theory, professional service
providers might move towards a deeper understanding of the
experiences of families with handicapped children, knowing
that the families are undergoing a process which affects
them in many ways.

Families need to be aware of what they can do and
learn, and to have the professionals involved with them
focus on their strengths, not just on their needs.
Professionals' appreciation of the multiple adaptations
families are making, and professionals' understanding that
adaptation and acceptance do not happen quickly might help
families in making these adaptations. It takes time for
families to absorb everything and to make needed changes
while keeping their lives as something they can still
recognize as their own. Families must assimilate the needed
changes into their values and lifestyle, and may need to
address some issues more than once in this process.

Having a handicapped child intensifies life, and may
exacerbate an existing or potential problem the family
already has. The handicap itself may be a cause of, an

effect of, or only indirectly related to, other problems a

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family has. Families with handicapped children are all
different. Some families may just need help due to the
nature of their situation or the nature of the handicap
itself; these are healthy, functional families who are
basically able to cope well. Other families may be burdened
by general life demands, as well as those of the handicap,
and may have other needs, apart from the handicap. Longo
and Bond (1984) suggested that categorizing families with
handicapped children may pose some difficulties for
clinicians who tend to see families as either normal or
deviant, pointing out that "families with handicapped
children may in fact be neither normal nor deviant but
something else entirely" (p. 63).

Practitioners could consider that families who are
basically healthy and functional may look unhealthy and
dysfunctional when they are first responding to the crises
of the diagnosis of the handicap in their young child. At
this point, they are healthy families responding to a major
stressor and they may need help to weather the crises and
begin adapting in healthy directions. Those who would help
families in this situation would do well to distinguish
healthy families responding normally to a crisis situation
from families who are truly dysfunctional. A careful
assessment of the family's general style of functioning and
evidence of their adaptive coping strategies may be helpful

in this situation.

234

Antonovsky (1979) talked about clinicians who, from
training and experience, have a pathogenic orientation which
looks at what's wrong and focuses on understanding the
sources of behavior. He advocated moving away from this
orientation towards a "salutogenic orientation,... (which)
can lead to working with the patient to engage in
goal-oriented behavior that promises success, thereby
strengthening the sense of coherence" (p. 125). It is a
focus on where the person is going, not on where the person
has been.

Professionals can use the acculturation theory as a
positive approach for looking at families responding to the
crisis of having a handicapped child, an approach which has
a salutogenic orientation. Thinking of families as
immigrants to the world of special needs may help
practitioners to be sensitive to families' needs for
information and support, and to their needs to be involved
in their child's care and treatment in ways that are
comfortable for them. Instead of focusing on the stress the
families are experiencing, practitioners could see the
families as working their way towards more understanding and
control, and recognize that it is normal for families under
the stress of discovering that their child is handicapped to
experience a time of very strong feelings and mental
confusion. This may help service providers to remember that
families have needs too, not just the child. The families
are dealing with many things, all of which take a good deal

of time and energy, and their efforts should be supported.

235

Families in this process are learning about what they
need. Perhaps service providers could look at families to
see where they are and what they are saying they need in
order to function better, and then work to feel comfortable
seeing and focusing on strengths rather than weaknesses.

Counselors and family educators who wish to focus on
strengths and assist families using the acculturation theory
as a guide might set up a program to help families identify
and clarify the important elements of the acculturation
theory for themselves, to help them achieve a better sense
of understanding and acceptance as to where they fit in.
These elements include: the emotional, cognitive, physical,
and social demands on the family; the difficulties of being
part of two worlds; the ecological environment; adaptation
of family members as individuals and as a family unit;
achieving consonance; using family strengths and resources;
acquiring needed resources; and clarifying family values and
family meaning and definition of the handicap.

The goal of this program would be to help families
identify where they are and how they fit into the two
worlds, and determine what are the important elements of
their lives which they wish to keep, how best to compromise,
and how to achieve a healthy consonance within the family
and with other parts of society.

More generally, a course for families and professionals

could be developed to help participants better understand

236

the experiences of families with young handicapped children.
Topics in this course might include:

1. The ecological context of family life with a young
handicapped child;

2. Tools for ecological assessment of family
situations;

3. The multiple dimensions of impact of a handicap in
a young child on the family;

4. Theories of family stress and adaptation to crises;

5. The world of special needs and what the accultura-
tion process suggests regarding families' differing needs as
they go through this process;

6. Consonance in the lives of families with handi-
capped children; and

7. Other topics of interest to course participants,
such as societal attitudes; development of a social support
network; the concept of "what is handicapped"; the benefits
and costs to families of having a handicapped child;
resolution of emotional issues; cognitive understanding of
the handicap; acceptance of the handicap; legal issues for
families with handicapped children; the ease/difficulty of
accessing services; needs of professionals who work with
handicapped children and their families; parent/professional
relationships; special needs of fathers, mothers, siblings,
or grandparents of the handicapped child; the differing
impacts of mild, moderate, or severe handicaps; and the

nature of various handicapping conditions.

237

This course could be designed with three audiences in
mind: (a) the families themselves; (b) professionals who
work with families with handicapped children; and (c) a
mixture of family members and professionals sharing their

perspectives and learning from each other.

Directions for Familieg

With this theory, families could look at themselves
from the viewpoint that it is natural for them to feel
angry, afraid, confused, and tired. Families who were just
beginning this process could be encouraged, knowing that it
is possible to make this situation feel more routine, to
know that to feel out of control about this, especially in
the beginning, is normal, but that with time, some sense of
familiarity and coherence is possible.

It may also be helpful for families to know that this
is a process through which many families with handicapped
children go, a comprehensive adaptation that families go
through in their own ways. Families could see themselves as
immigrants in the world of special needs and accept that
living and working here while learning the ways of this new
world will have inherent anxieties and insecurities. It
takes time to assimilate all the changes the handicap brings
into their lives, and the demands of the handicap will
change with time as will the family's response to the
demands. Families are in a complex situation which makes

demands on them in many areas of their lives.

238

The theory suggests a way for families to come to
self—understanding and self-acceptance in a difficult,
ongoing situation, to understand their experiences in a
positive light. Families may come to accept their place in
this strange land without losing sight of who they are and
where they came from. They may focus not on the ways they
are different or the ways they are the same but on the ways

they might fit as they deal with their two worlds.

Qirections for Society

Finally, members of society could begin to look at
families with handicapped children differently. The general
society could work to help families to optimize the
consonance between the family and their environment, aiming
to understand family needs and respond with helpful
attitudes and the development of appropriate services.
Optimizing this consonance could help to decrease the stress
of having a handicapped child, perhaps making it less a
catastrophe or crisis for families as they endeavor to deal
with the handicap and all it requires.

Does having a handicapped child have to be seen as a
crisis for families? At least one other event that has been
seen in the past as a crisis for families is now being
suggested as being more normative, or within the realm of
things that commonly happen to families, and less
catastrophic than it used to be. In an article on divorce,

Ahrons (1983) pointed out that:

239

The high incidence of divorce in our country requires
that we conceptualize divorce in terms of a model that
does not regard it as an indication of abnormality and
emotional instability. Divorce can be conceptualized
as a normative family transition or change. It may be
seen as a transition like many other normal family
changes, such as a death in the family; divorce, like
other transitions, can bring unhappiness to families,
and it does demand a change in family structure, rules,
and roles. These changes, however, do not mean that
the divorced family is 'bad' or 'sick'. (pp. 105-106)

Could having a handicapped child be seen as a
transition, like other transitions, which can bring
unhappiness to families, and which demands changes in family
structure, rules, and roles, but which is just something
that happens to some families, something which can be dealt
with? Perhaps if our society were able to recognize and
respond to the needs of handicapped children and their
families, and help them to optimize a healthy fit between
the families and their environment, then maybe the
experience of having a handicapped child would become more
of a "normative" event and less of a catastrophe for
individuals and families, as Ahrons (1983) is suggesting
that divorce is becoming. A better fit of needs and
services could help decrease some of the hardships
associated with the handicap, and reduce some of the costs
of the handicap to the family. For this to happen, we need
to listen to families as they tell us what they need so that
we may support families and enable them to use their many

strengths and resources in adaptive ways.

240
Summary of Directions

Suggestions for directions in which the theory might be
used were given for researchers, for service providers, for
families, and for society in general. The acculturation
theory offers a positive or "salutogenic" way to view the
experiences of families dealing with a handicap in a young
family member as they experience and adapt to this crisis in
their lives.

Initiatives for research might include testing the
acculturation theory and/or seeking more information on its
major elements such as family demands in multiple
dimensions, family strengths, support networks, family
perception of consonance in their lives, or a related topic,
looking at parent-professional relationships. Practitioners
might use the acculturation theory to help families focus on
their strengths and to help support families' efforts to
make sense of their situation and establish a sense of
consonance in their lives. Suggestions are included for a
program and coursework which counselors and family educators
might offer to interested families and professionals.

Using the acculturation theory, families might be
helped to come to self-understanding and self-acceptance of
their difficulties in adapting to the handicap, with a focus
on where they fit in their two worlds, rather than on the
ways they are the same or different from those around them.

Finally, members of the general society, could move towards

241

looking at ways to help the experience of having a
handicapped child become more of a normative transition and
less of a crisis by supporting the development of needed

services.

APPENDICES

APPENDIX A

Letter For Families*

Dear Parents,

As Diane or Rose has explained to you, I am a doctoral
candidate planning research to learn more about what it is
like for a family to have a child who has a handicapping
condition. Getting an indepth understanding of the feelings
and concerns of families who are in this situation, and
identifying things in their lives which are important to
them, may be helpful in developing programs and services so
that, in the future, professionals might better address the
needs of all family members in this situation.

If you agree to participate in this research, you, your
children, and the children's grandparents would be asked to
take part in visits with me at your home, at the Referring
Agency, and possibly at some other convenient place. Phone
contacts would supplement the visits. A visit would involve
my talking with members of your family, individually or
together, and observing family activities. These visits
would be scheduled at your convenience. A total of about
20-25 hours of visits would take place over the next eight
weeks.

Please understand that you are under no obligation to
participate in this research; participation is strictly
voluntary. Refusal to participate will not change any
aspects of your child's or family's involvement in the
services you are currently receiving. It is entirely up
to you if you want to participate.

If you would like to discuss this further with me,
I am available at (207) 667-5357 most weekdays. If you
prefer, you can ask Diane or Rose to have me call you. I
would be very happy to describe the research in more detail
and to answer your questions.

Sincerely,

Mary Veit, M.S.W.
*For reasons of confidentiality, the actual name of the

referring agency is omitted here and pseudonyms are used
for agency staff.

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243

Consent Form*

I understand that a study of families with handicapped
children is being conducted at the Referring Agency under
the direction of Robert P. Boger, Ph.D. from the Institute
for Family and Child Study at Michigan State University, and
carried out by the researcher, Mary Veit, M.S.W.

I understand that information relating to my family's
involvement with my child's handicapping condition will be
collected. This will include all family members and will
utilize agency records, family assessment tools, and
contacts with family members and professionals providing
services to my family.

I understand that my family and I will be visited at
home and other agreed-upon places, for interviewing of
family members and observation of family interactions.
Individual family members, including children, will have
the opportunity to decline participation in the research.

I understand that I am under N0 obligation to partici—
pate in this study, and that I am free to discontinue
participation in the study at any time WITHOUT penalty from
the Referring Agency or the researcher. I also understand
that I may REFUSE to answer any question asked of me.

I understand that all information given will be treated
CONFIDENTIALLY, that my name will NOT appear on any written
reports or records, and that the research report will be
shared with me before the final draft is completed.

I understand that my participation in the program does
NOT guarantee any beneficial results to me, my handicapped
child, or any family member.

I give my permission for the researcher, Mary Veit, to
review my child's records and to interview the Referring
Agency staff with regard to material which is relevant to
the study.

I understand that, at my request, I can receive a
summary of the research findings after my participation is
completed.

Child's Name
Child's Birthdate

Date Signed (Parent)
Date Signed (Parent)
Date Signed (Witness)

*For reasons of confidentiality, the actual name of the
referring agency is omitted here.

APPENDIX B

Specific Research Activities with Each Family

I. The Bradley Family

Research Period: December 1985 to June 1986 for a
total of 41 contact hours over 14 sessions.

Locations of Visits: the family home and cars; the
local bowling alley; the YMCA gymnasium; McDonald's
restaurant; the homes of two extended family members; the
homes of two of Tommy's babysitters; Tommy's preschool
classroom and physical therapy treatment room.

Activities: interviewing and observing parents and
children (together and alone -- usually both parents
together, with the children playing in and about the house);
interviewing Tommy's paternal uncle, his paternal
grandmother, and talking with his maternal grandparents on
the phone and in person; viewing family photos and
videotapes; using a Polaroid camera with the children to
take and discuss pictures; observing and participating in
family activities including bowling, basketball, and bedtime
routine; accompanying Tommy through a day, observing him
‘with his peers, teachers, babysitters, and physical
therapist; attending a family dinner; talking with the
.referring agency's social worker; calling the city planner

Jfor demographic information.

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245

II. The Carter Family

Research Period: May 1986 to September 1986 for a
total of 27 contact hours over 12 sessions.

Locations of Visits: the family home and car; the
homes of two extended family members; the local miniature
golf course; McDonald's restaurant; Krissy's pediatrician's
office; the hospital blood lab; Krissy's preschool classroom
and physical therapy treatment room.

Activities: interviewing and observing parents and
children (usually Krissy's mother and brother, with Krissy
playing nearby; Krissy's father and brother were seen
together for one visit); interviewing Krissy's maternal
grandmother and her maternal aunt; viewing family photos;
observing Krissy's bathtime, speech exercises, preschool
session, and physical therapy session; playing miniature
golf with Krissy's brother; learning to diaper, dress, feed,
and give medication to Krissy; talking with the referring

agency's social worker.

APPENDIX C

Preparatory Notes

The following notes helped me prepare for the first
interview with the Bradley family; preparatory notes for
later interviews focused on areas of specific interest as
the data collection itself was more focused. This planning
for each visit included such things as purpose of the visit,
specific questions I wanted to ask, topics I wanted more
information on, things I wanted to be alert for (e.g.,
information on certain categories), and things I needed to
do (e.g., bring my camera). Sometimes I added a quote or
some notes from readings on the ethnographic method, as I
did in this sample, or I wrote the research questions into
these preparatory notes, reaffirming for myself the intent
of the research visit.

Preparation for the First Meeting
with the B Family
12/25/85

Purpose of meeting: Introduce self, describe study,
outline expectations, establish rapport, get to know all
family members; make outline of general plan for data
collection with the family -— who to see, when is best time,
what to do; get consent forms signed.

1. What did the referring person tell them?

246

247

2. My study is to understand what it is like to be
part of a family with a handicapped child. How would they
like to tell me about their family?

3. Who is in the family? What is the handicapped
child's special need? Age of sib?

4. Describe family home.

5. Make sure parents understand children will not be
pushed to be part of specific interviewing or other research
activities; they have the right to decline participation.

6. Check to see if family minds tape recorder being
used.

7. Ask about using camera.

8. Plan kinship charting, mapping exercises.

9. Get some family history, if possible.

(These last three items were not done until later.)

(Following these questions, I made several pages of
notes from Spradley (1979), about elements of ethnographic
interviews, such as explanations for informants, expressing
cultural ignorance to help the informants understand that
the ethnographer wants to learn from them, and asking
ethnographic questions. This helped me to refresh my mind
on elements to include when conducting an ethnographic

interview.)

APPENDIX D

Examples of Memos

I. Data Collection Memo

Following is a memo written in the "memo" column on the
field notes form, during data collection on the March 22,
1986 visit. I had noted previously that the family seemed
to be saying in different ways that Tommy was not really
handicapped, though to my mind, he clearly had a medical
history which indicated a handicapping condition, and he
needed the therapies he was receiving to maintain and
improve his physical functioning. The memo was an effort to
clarify for myself "what is handicapped?," and to find a way
Tommy's not being handicapped might make sense, given the
physical reality. "R" refers to Tommy's older brother, who

had asthma.

T as not Really Handicapped

What is handicapped? —- has to do with the nature of
the handicap, with what you can do about it -- you learn
what you have to do to deal with the child's special needs
and you fit it into your life. If you feel like you can
handle it and get through the week, it doesn't feel like
.handicapped, it feels like the norm. R's asthma you can't

Iolan around as easily; repercussions of not handling R right

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249

may be more dramatic, not know what'll happen, T is more

predictable.
II. Analysis Memo

Occasionally during data collection, I noticed what
seemed to me to be contradictions in what the family members
were sharing with me. The above memo is an example of this.
During the analysis phase of the research, a review of data,
codes, and memos highlighted the importance of looking for
and working through these apparent contradictions. The
following memo helped me to capture a fleeting impression of
the critical role contradictions play in ethnographic
research, and elaborate on the idea so that it might be
available for use in the description of methodology.

Memoing served to get the idea down quickly, even in the
midst of another review or analytical task.
Looking For Contradictions
10/25/86

I found looking for contradictions in what I seemed to
be seeing/hearing during data collection, and then following
up on the contradictions until they made some sort of sense
to me to be a really helpful technique. Asking directly
about the contradiction was not the way to do it. Repeating
what was said and encouraging elaboration at first, thinking
about what bothered me about the original observation/

interview, writing it down in the journal or in the notes,

250

thinking about it in a relaxed time, jotting ideas onto memo
cards if the ideas came to me when I couldn't spend time
thinking about them, letting the ideas mellow a bit,
listening for use of words, observing some more, asking more
questions in a focused manner on related topics, asking a
question directly about the contradiction, but in a manner
that says: "Before you told me this and then you told me
that and I'm trying to figure out how the two go together,"
or saying: "I heard you say Y, but I also see X, can you

tell me more about X?"
Example of Contradiction: T "not really Handicapped"

Think about the contradictions they have to live with:

e.g., family says they are like "normal" family, one
with nonhandicapped children, but they have concerns for the
future of their handicapped child that "normal" families do

not have.
III. Report Writing Memo

After data collection was completed, a review of all
the data, codes, and memos assisted in the analysis of the
research and in the organization of the final report. The
following memo, written informally, off the top of my head,
served to focus my thinking about the method itself, in an
effort to clarify how the method might be described when

'writing the final report of the research.

251

What Does an Ethnographer do in Developing Grounded Theory
10/5/86

Ethnography is a method for gathering information about
people, going into their lives, somewhat as an
anthropologist goes in to study people of another culture,
learning about them first hand. Ethnographers rely on
themselves and their skills as the instrument of
measurement. They have a plan for what kinds of things they
want to look at, and they begin talking to people and
teaching the people what they want to find out about. Then
the people start teaching them.

The people they talk to are called informants. Ethno-
graphic interviews, friendly conversations which evolve into
more structured interviews, are used to encourage the
informant to share information on the research questions and
areas of interest. This is open-ended interviewing, with
the researcher pursuing topics which arise and which are
important to the informant or which seem to be related to
the whole gestalt of the research or to some specific area.
The interview questions get more and more focused and may
include other activities such as card sorting.

It is important to listen to informant's words,
listening to how they use their words, and not so much for
the meaning. The meaning will come once you understand the
use. Informants' specific language is important; the
ethnographer strives to use the informants' words,

rephrasing them and not paraphrasing them, and encouraging

252

informants to use their own words and not translate what
they are saying into the ethnographer's words. (This is
hard to do.)

Participant observation is also used for the researcher
to get an idea of what these folks' lives are like, to feel,
to know as well as she can who they are. Participating can
be maximum or minimum; there is a continuum of total
observing to total participating, and the researcher decides
where along that continuum her research activities will fall
on a given occasion. She would use any of the techniques --
interviewing, observing, participating -— or some
combination of them, all the way through the research, in an
effort to help it all make sense to her.

To start off, the researcher goes in to get a broad
idea of who this family is. What are they like, what is
their home like, what objects do they have which seem to be
important, what is the lay of the land? Physical structure,
geography, neighborhood, the house, and the layout of the
rooms are all noticed. Interactions between the informants
are also noticed: who talks and when, who interrupts, who
answers questions, who sits silently, who is not there at
all -- these things all tell the researcher something which
may or may not be important to the total picture.

After getting this sweeping view, the researcher goes
back for more details related to the specific areas of

interest, and fills in the fine details. In some ways it is

253

like doing a puzzle, where you don't have but a vague idea
of the scene you will be putting together, so you first look
for the edges so you might get your bearings and then you
start to look at other pieces, rejoicing as you complete
parts of it and something is recognizable and then working
all the harder to find the pieces you need to make it all
come together. Doing ethnography is like doing a mental
puzzle. After you find your edges and define what you are
looking for, you look at all the pieces you have collected,
indeed, as you focus more as your visits proceed, you really
work for some pieces, and you try to see where and how they
fit. You probably end up with enough pieces for several
puzzles, but you choose the pieces that seem the most
relevant to you and pull it together so it all makes sense,
being careful as you go that you make it clear how you
started and where you went so that others interested in your
research might understand how you decided what was important

and how you got where you did.

APPENDIX E

Involvement of Extended Family Members

Having a child with a handicap impacts not just the
parents and siblings of the handicapped child; it affects
extended family members as well. The effects of the
handicap ripple out from the child, touching those who care
about the child and family, from the parents who deal with
it on a daily basis, to relatives and friends, near and far
away. The daily lives of those not in daily contact with
the family may be less affected, but the impact -— the
interest in learning about the handicap, the concern about
the outcome, the joy at the child's progress —- is there for
those who care and are involved with the child and family.

Involved extended family members in the study families
-- Tommy's paternal uncle and grandmother, his maternal
grandparents, and Krissy's maternal aunt and grandmother --
spoke with great pride about the child, about the child's
personality and abilities, and about the wonderful job the
parents were doing. These involved extended family members,
apart from whatever other specific supports they provided,
‘Which were detailed in Chapter 3, were a cheering squad for
‘the child as well as the parents, sharing the joy of

Iarogress and affirming the good work the parents were doing.

The grandparents talked about being involved in their

ilxandicapped grandchildren's lives in much the same way they

254

255

talked about being involved in the lives of their
nonhandicapped grandchildren. The close-by grandparents
participated in some family activities, visiting the child
and other family members, while the long—range grandparents
kept in touch by letters, phone calls, and occasional
visits. The long-range grandparents said that their daily
lives were less affected by the handicap than they would be
if they were involved daily. All the grandparents described
keeping track of the handicapped child's progress pretty
much in the same ways they described keeping track of their
other grandchildren's progress.

The study grandparents, especially, told about
celebrating each small step: Tommy's paternal grandmother
said they were "all pleased with every bit of progress"; his
Inaternal grandmother said they were "excited about every
step forward he takes"; Krissy's maternal grandmother said
"each accomplishment she has is a milestone." All three
grandmothers told about taking their cues and getting
information from the parents about handling the handicap.
Sandy's mother described Sandy's attitude as "tremendous,
it's helped all of us." Both of Tommy's grandmothers
<described not being sure about letting him do certain things
‘When he was younger and going along with Beth's attitude of
"let him go,... he's got to learn." Finally, all the
1grandparents mentioned their active involvement in church or

their belief in God or prayer.

256

The grandparents' unique perspective was that with a
handicapped grandchild they hurt twice. Sandy's mother
described how it hurt to have to watch Sandy and her family
go through this: "Seeing Sandy going through this is almost
as hard as seeing the baby seize.... As a mother you'd like
to take the hurt away, but you can't." Beth's mother echoed
this sentiment, talking about the sadness they felt that

”our children have to go through all this."

APPENDIX F
Factors Affecting the Total Impact of the Handicap

Over the course of this research, information appeared
which suggested that as the families adjusted to the
handicap, learned about its demands and fit them into their
lives, several factors about the handicap and about their
whole situation helped to determine its total impact on the
family. By carefully noting these impressions and thinking
about the differing impacts of the different handicaps on
the study families, I developed a framework for looking at
factors affecting the total impact of a young child's
lhandicap on the family. The framework follows a paradigm
\JBed by Lipman-Blumen (1975) as a framework for looking at
family crisis. Areas to consider to understand the total
impact of the handicap on the family include:

1. How Severe: What is the nature and severity of the
Ihandicap? What does it demand of the family?

2. How Disruptive: How disruptive or intrusive are
‘the special needs to the family's lifestyle and their daily
schedule? Can the family incorporate the child's special
lieeds into their daily lives in some manner?

3. How Predictable: How predictable are the demands
<>f the special needs? Is the family generally able to

I>redict the child's needs?

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258

4. How Clear: Has the handicap been identified? Is
there a clear diagnosis and prognosis? Is there a clear
understanding of what the child needs?

5. How Much Worse: Is the handicapping condition one
that is fairly stable? Has the damage been done or might
there be more damage? Is the handicapping condition
expected to get worse?

6. How Familiar: How familiar are the parents with
handling the demands of the handicap? Is the handicap
something they feel they can handle?

7. How Restrictive: What are the restrictions on the
family's activities? Are family members pretty much able to
pursue important family and personal activities, although
they may not be able to do everything they would like?

8. How All-Encompassing: How all-encompassing are the
demands of the handicap? Can the family members still
manage some individual lives for themselves? Is the family
able to consider and meet the needs of all the members of
the family?

9. How Effective: How effective are the family's
efforts in ameliorating the effects of the handicap?

10. How Resourceful: What personal and family
resources do family members have to cope with the handicap?

11. How Supported: What kind of support system does
the family have or are they developing?

12. How Much Access to Services: Does the family have

access to services needed to meet the special needs? Are

259

there competent, responsive, caring professionals involved?
Are there programs available to address the child and
family's needs and help the child progress? Is there

adequate transportation and funding?

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26

4. What do the family members identify as strengths

they have to cope with their life stresses?
5. What do the child, the parents, the grandparents,

and the siblings perceive as helpful or not as they interact

with the services available to them? How good a "fit" of

needs and services is there?

 

 

 

 

25

following: (a) family members' personal resources (money,
health, education, cognitive abilities, and psychological
characteristics); (b) family system resources (adaptability,
cohesiveness, internal organization, decision-making and
problem-solving patterns); (c) social support networks (kin,
friends, neighbors, social service organizations, and
self-help groups); and (d) coping mechanisms of families as
pro-active and not just reactive adaptors (McCubbin, et al.,
1980). Since individuals tend to perceive the stressor and
resources in their own manner, the family response to the
stressor and the use of resources is some combination of

individual and interactional responses.
The Research Questions

Using the foregoing information on the topics of
families with handicapped children, the stress concept, and
family stress, the following questions were developed as a
guide for this research:

1. What is the impact on the family (parents,
grandparents, siblings) of having the handicapped child as a
family member? What is it like for the handicapped child to
be a member of this family?

2. What changes do family members perceive as having
occurred in their lives as a result of the child's handicap?
3. What stresses do the family members perceive in

their lives? How are these stresses expressed by family

members? Are there any benefits to having the handicap?

 

 

 

 

ll
.. l
8. Related to scarcity or surplus: Does the crisis 1
represent too much or too little of needed commodities? i

9. Perceived to be solvable or unsolvable: Is this
something the family can do something about, or is it
unsolvable?

10. Of what substantive content: Is it primarily in
the ”political, economic, moral, social, religious, health,
or sexual domains" (p. 890)?-

Lipman-Blumen (1975) also described aspects of any
social system which will affect its response to crisis.
These aspects include: (a) level of organization, (b)
degree of adaptability, (c) availability of resources, (d)
past experience with similar situations, (e) effectiveness
in resolving similar crises, (f) the scope and intricacy of
pre-crisis roles, and (9) amount of time since the last
crisis and the essence of that crisis.

Melson (1980) noted that, like individuals, "certain
family systems may be more vulnerable to stress than others"
(p. 243). She cited adaptability and cohesiveness as
important characteristics to consider as regards
vulnerability. "Adaptability refers to the system's ability
to change its functioning in response to new demands without
undue strife or psychological discomfort, while cohesiveness
refers to the level of organization of the system” (p. 243).

Families use many different resources to manage
stressors in their lives. In the 1970's investigators

looked at a variety of family resources including the

 

23

Influence of common family values, ethnic and religious
beliefs, and other family characteristics may modify
individual perception and family consensus about the nature
of the stressor and alter the impact of the stressor. For
example, social meaning of the stressor and of appropriate
coping responses may help family members weather the
situation by helping them make sense of it all, and by
suggesting ways to handle the situation.

In considering the individuality of families' responses
to crises, Lipman-Blumen (1975) suggested that families will
respond differentially to crises according to whether the
event is:

1. An internal or external problem: Does it strike at
their internal organization or is it outside of them?

2. Pervasive or bounded: Does its impact spread to
affect their whole lives, or can it be limited within
certain boundaries?

3. Of gradual or precipitate onset: Was there time to
prepare for the event, or did it just suddenly happen?

4. Intense or mild: How severe is the crisis?

5. Transitory or chronic: Is the crisis seen as a
temporary problem, or a long-term one?

6. Random or expected: Was the stressor totally
unexpected, or was there some degree of predictability about
it? '

7. Generated naturally or artificially: Has the
crisis arisen from natural sources or "through technological

or other human-made effects" (p. 890)?