THESIS [Date d , A. J, :m'»-HOM"W"‘¥l This is to certify that the thesis entitled UNDERSTANDING FAMILIES OF THE HANDICAPPED presented by Susan Thurow Miller has been accepted towards fulfillment of the requirements for Ph.D. degnmin Elementary and Special Education Major professor June 12, I981 0-7639 NIVI£3‘_J RETURNING MATERIALS: Place in 500E drop to LJBRARJES remove this checkout from Ailing-III. your record. FINES will be charged if book is returned after the date stamped below. _\ ,2.) .. t. a“! ‘r UNDERSTANDING FAMILIES OF THE HANDICAPPED By Susan Thurow Miller A DISSERTATION Submitted to Michigan State University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Department of Elementary and Special Education 198l ABSTRACT UNDERSTANDING FAMILIES OF THE HANDICAPPED By Susan Thurow Miller Parents of the handicapped have been a potent force in the development of programs and services for handicapped children and adults for nearly half a century in this country (Burello, l978). The initiation of many special education programs has often been due to the efforts of parents with the professional offering little, if any, assistance. Most professionals have also been interested in program improvements, but their perspective has been different from that of the parents. This study focused on the parents' experience and per- spective, particularly as that experience related to unsatisfactory interactions with professionals. The primary purpose of this study was to identify specific gaps in understandings that professionals in special education have about parents of the handicapped. A secondary purpose was to criti- cally evaluate selected aspects of a course designed to sensitize special education professionals to the problems and situations of parents of the handicapped. The special education students in the course served as the source of subjects repreSenting professionals. Parents of the more severely handicapped were selected since the problems presented by Susan Thurow Miller these children create serious tensions, presumably not fully understood by students. It was expected that these two groups would respond dif- ferently to a Parent Issues Questionnaire (PIQ) that had been designed to highlight differences between parents and professionals. Another source for discovering gaps in the students' under- standings of parents was the journal assignments; students were asked to identify new insights they gained throughout the course. A student evaluation form was designed to provide feedback about the course con- tent and materials. Among the course components were six video-taped interviews with the parents of a handicapped child, intended to serve as a stimulus to the thinking and empathic feeling of students. Few dramatic differences were identified between parents' and students' responses to the P10. However, students were able to express an abundance of insights that were appropriate and related to the course content. Students were primarily positive in their over- all reaction to the course content. The most effective course com- ponents were video-tapes of the parent interviews and the presence and participation of parents in class. I would like to dedicate this writing to the following people: To my daughter Cindy, whose existence and condition prompted this work and who, through no fault of her own, has been the source of more anguish to the ones who love her than she will ever be aware; To parents of the handicapped, whose suffering has been com- pounded by the insensitivity of the professionals who have tried to help them; And last, to the professionals who work with parents and families of the handicapped in the hope that some of them may gain insights that will be helpful to the families with whom they work. ii ACKNOWLEDGMENTS This dissertation is truly a product of the combined efforts of my family, friends, and advising professors. I would first like to thank my committee members (Drs. Henley, Keller, Melcer, and Featherstone) for supporting me in this somewhat deviant-type work; especially Ed Keller, who spent hours helping me conceptualize what I wanted to do and then to focus on the product after it was completed. Thanks to my sister, Judy, whose idea for video-taping parents of the handicapped got me started. An especially warm thanks to Tryn and Chris Clark for their indispensable and varied contribution to the dissertation materials, and for being my friends-—before, during, and after it was completed. Thank you Jeb Blom for your time and excellent interviewing skills, and Mary Jane Wilson, who helped make the taped interviews a professional product. Thanks also to the par- ents of the handicapped and the students who participated in the study. And last, thanks to my two daughters, Donna Sue and Cindy: to Cindy, whose life and situation gave me the motivation to do the proj- ect in the first place, and to Donna Sue, whose pride in me cheered me through some of the more difficult months and who tolerated me while I struggled! iii TABLE OF CONTENTS Page LIST OF TABLES ..... . .................. vii Chapter I. INTRODUCTION ..................... l Statement of the Problem .............. 1 Literature Regarding Parent-Professional Misunderstanding ................. 3 Importance of Understanding Families of the Handicapped .................... l3 Current Approaches in Universities and Colleges to Help Prepare Professionals to Understand the Families of the Handicapped ............ l4 Purpose of the Study ................ 14 II. DESIGN AND METHODOLOGY ................ 16 Design of the Study . ................ l6 Participants in the Study .............. l8 The Parent Group ................. 18 The Student Group ................. l9 Instruments ..................... 21 The Parent Issues Questionnaire .......... 2l Journal Assignments . . . . . ........... 23 Student Evaluation Form .............. 24 The Video-Taped Parent Interviews .......... 25 Tape 1, "Family Energy" .............. 25 Tape 2, "Search for a Diagnosis" ......... 25 Tape 3, "Receiving the Diagnosis" . . . . . . . . . 26 Tape 4, "Management of Services" ......... 26 Tape 5, "Leaving the Natural Home" ........ 26 Tape 6, "Planning for the Future" ......... 27 Other Procedures .................. 27 Treatment of the Data . . .............. 28 iv Page 111. FINDINGS ....................... 29 The Parent Issues Questionnaire ........... 29 Comment on the Analysis of Data From the Parent Issues Questionnaire .............. 29 Report of Data From Topic 5, "Leaving the Natural Home" .................. 3l Report of Data From Topic 2, "Search for a Diagnosis" ................... 37 Possible Reasons for Absence of Major Differences Between Groups ................. 41 Report of Data From Topic I, "Family Energy" . . . 43 Report of Data From Topic 3, "Receiving the Diagnosis" ................... 50 Report of Data From Topic 4, "Management of Services" .................... 55 Report of Data From Topic 6, "Planning for the Future" ..................... 60 Summary of Data From Topics l, 3, 4, and 6 . . . . 62 Conclusion to Parent Issues Questionnaire ..... 63 Journal Assignments ................. 64 Topic l, "Family Energy" ............. 67 Topic 2, "Search for a Diagnosis” ......... 69 Topic 3, "Receiving the Diagnosis" ........ 73 Topic 4, "Management of Services" ......... 76 Topic 5, "Leaving the Natural Home" ........ 8l Topic 6, "Planning for the Future" ........ 85 Summary: Journal Assignments ........... 86 Student Evaluation of the Course .......... 88 Global Comparison of Course Components ...... 88 Report on Individual Components .......... 92 Insights and Introspective Thoughts Reported on the Course Evaluation Form ........... 98 IV. CONCLUSIONS AND RECOMMENDATIONS ............ 102 Summary ....................... 102 The Problem .................... l02 Methodology .................... lO3 Findings ..................... 105 Discussion and Recommendations ........... l07 Gaps in Understandings .............. 107 Recommendations for Future Course Content ..... llO Implications for Further Study ........... lll Page APPENDICES .......................... 114 A. LETTER SENT TO EXECUTIVES OF LOCAL CHAPTERS OF THE ASSOCIATION FOR RETARDED CITIZENS ........ 115 B. PARENT ISSUES QUESTIONNAIRE .............. 117 C. JOURNAL ASSIGNMENTS .................. 127 D. STUDENT EVALUATION FORM ................ 131 REFERENCES .......................... 135 vi LIST OF TABLES Table Page l. Age Ranges of Parents and Ages of Their Handicapped Child or Adult ............... . . . . 20 2. Distribution of Coded Responses to the Question, "Who Will Help You the Most With This Decision?" ...... 32 3. Distribution of Coded Responses to the Questions, "What Are Some of the Thoughts That Go Through Your Mind As You Begin to Explore the Possibility of Your Child Living Somewhere Other Than Your Home?" and "What Feelings Do You Have As You Approach the Department of Social Services Office to Ask About a Foster Home?" ........................ 35 4. Distribution of Coded Responses to the Question, "Where Do You Go for Help?" .............. 38 5. Distribution of Coded Responses to the Request for Thoughts and Feelings as Parents Search for a Diagnosis ....................... 40 6. Distribution of Coded Responses to the Question, "What Do You Have to Do to Get Organized?" ......... 44 7. Distribution of Coded Responses to the Question, "What Are Some of the Thoughts You Have As You Prepare?" . . 46 8. Distribution of Coded Responses to: An Invitation to Take the Family Out to Dinner ............. 50 9. Distribution of Coded Responses to the Question, "What Is the First Thing You Do?" .............. 52 10. Distribution of Coded Responses to EPPC Meeting ..... 57 ll. Distribution of Coded Responses to: Questions About Thoughts and Feelings As Respondents Anticipate and Participate in the Staffing Meeting Concerning Their Handicapped Child' 5 Inappropriate Behavior ...... 59 vii LIST OF TABLES Table Page 1. Age Ranges of Parents and Ages of Their Handicapped Child or Adult .................... 20 2. Distribution of Coded Responses to the Question, "Who Will Help You the Most With This Decision?" ...... 32 3. Distribution of Coded Responses to the Questions, "What Are Some of the Thoughts That Go Through Your Mind As You Begin to Explore the Possibility of Your Child Living Somewhere Other Than Your Home?" and "What Feelings Do You Have As You Approach the Department of Social Services Office to Ask About a Foster Home?" ........................ 35 4. Distribution of Coded Responses to the Question, "Where Do You Go for Help?" .............. 38 5. Distribution of Coded Responses to the Request for Thoughts and Feelings as Parents Search for a Diagnosis ....................... 4O 6. Distribution of Coded Responses to the Question, "What Do You Have to Do to Get Organized?" ......... 44 7. Distribution of Coded Responses to the Question, "What Are Some of the Thoughts You Have As You Prepare?" . . 46 8. Distribution of Coded Responses to: An Invitation to Take the Family Out to Dinner ............. 50 9. Distribution of Coded Responses to the Question, "What Is the First Thing You Do?" .............. 52 10. Distribution of Coded Responses to EPPC Meeting ..... 57 ll. Distribution of Coded Responses to: Questions About Thoughts and Feelings As Respondents Anticipate and Participate in the Staffing Meeting Concerning Their Handicapped Child's Inappropriate Behavior ...... 59 vii 12. 13. 14. 15. Frequency of Students' Responses to Which Course Components to Keep or Omit .............. Students' Ranking of Course Components ......... Student Responses to Questions about Journal Assignments . Rankings of Topics viii Page 89 90 92 94 CHAPTER I INTRODUCTION Statement of the Problem Parents of the handicapped have been a potent force in the development of programs and services for handicapped children and adults for nearly half a century in this country (Burello, 1979). The initiation of many special education programs has, in fact, more often than not been due to the efforts of parents, with the profes- sionals offering little if any assistance. This drive by parents to guarantee appropriate programs for their handicapped children has been forcefully demonstrated during this last decade by a flurry of court cases allegating abuses in the existing programs and seeking to establish student and parent rights related to the special education efforts in the public schools. An example of such litigation is the Pennsylvania Association for Retarded Children suit against the state of Pennsylvania in 1970. In this suit, the parents of l3 retarded children charged the Commonwealth of Pennsylvania with neglecting to provide for the care, training, and supervision of children who had been excluded from the public schools as uneducable and untrainable. The immediate result of this litigation was the establishment of the right of the mentally retarded in Pennsylvania to an education in the public schools. This precedent-setting case set the stage for future court action that expanded the principle of "the right to an education" 1 to all handicapped children. Finally, this principle was incorporated into various state laws and ultimately into Federal Law 94-l42, The Education of All Handicapped Children Act. This example of parental action is the high-water mark in the efforts of parents to influence and improve services for their children. It was built upon decades of work at local and state levels. Most professionals have also been interested in program improvements for handicapped children, but the perspective has been different from that of the parents. The parent has seen the imme- diate desperate need for service, the program faults, the lack of priority for their children's need, the prospect of a lifetime of dependency by their children, and their own need for understanding, support, and relief from the crushing burden of the constant presence of the problems generated by a handicapped child. They have been frustrated over and over by the negative response and lack of compre- hension of the situation by the professional. Such a situation may be debilitating. It may also be motivating. In many it has resulted in a drive for action. This accumulated drive reaction began to be mobilized into a powerful force for change in the 19505 with the organization of parents into groups that have influenced government at all levels. Most professionals do not share the experience of being parents of handicapped children. It was an assumption of this writer that most professionals are not even aware of the perspective of the parents and how it differs from their own. It was further assumed that the difference 'hi perspective between parents and professional is a negative factor in the develOpment and improvement of appropriate programs and services for handicapped children and that efforts to bring about greater awareness of the parental viewpoint on the part of professionals will be a positive step for future program develop- ment. li:wasthis difference in perspective between parent and pro- fessional that was the concern of this writer. Examples given have dealt with special education and the professionals involved in that program effort. The parent-professional perspective problem, however, is not limited to this field but includes all professionals who work with parents of the handicapped, including physicians, psychologists, and social workers. Although this problem area, as any other, has two sides (two perspectives), it was the intent of this writer to concentrate on ways of improving the professionals' understanding of the parents' perspective. Literature Regarding Parent-Professional Misunderstanding Parents have written regarding their frustrations and the problems they have encountered with professionals as they seek assistance for themselves and their children. One example is the publication Parents Speak Out (Turnbull & Turnbull, l978), in which various problems and situations were detailed that demonstrated the gap in understanding that exists between parent and professional. Articles written by parents abound with descriptions of problems experienced with professionals. One problem area deals with the parental perception of the professional as tending to "blame the victim" (parent) for the problems. James Gallagher (l978),a professor of education at the Univer- sity of North Carolina, is also the parent of a child with bronchial asthma. Gallagher wrote: One of the unfortunate components of the era in which our child was growing up was that one of the predominant theories about bronchial asthma was that the parents could be the cause of the condition, rather than being part of the victims of it. We spent many hours being interviewed and questioned, with the obvious purpose of seeing if we were, in some fashion, precipi- tating the attacks of our child through our own anxieties and problems. Since we, in our other roles, were used to interview- ing people, it was transparent in many cases what the intent of the questioning was, but that did not make it any less frus— trating. (p. 203) Mary Akerley (1978), a former teacher currently serving on several developmental disabilities and Mental Health Association boards, has a son diagnosed as autistic. She wrote about her experi- ences with professionals: We worked with two doctors at that school (sequentially--we weren't that bad!). Neither ever came right out and said, "You caused it," but everything they did say was based on that premise. Our involvement with a parent organization was viewed as a way of avoiding our emotional duty to our child; never mind that he was improving dramatically, in no small part because of what we had learned through that involvement. Our failure to need their kind of help was “blocking,“ our by-now angry fighting back, "resist- ance." The real mind-blower for Doctor Number One was my refusal to admit I hated and resented Eddie because I had had to turn down a graduate fellowship when full-time study would have kept me away from him too much. Doctor Number Two picked up the theme and kept "working with me" ("gn_me" is more like it) to admit my anger. Finally I blew: "You bet I'm angry, Dr. 8., and I know what I'm angry at--you!" (p. 42) Similarly, Roos (l975), a clinical psycholgist who is the parent of a mentally retarded son, wrote: The prevailing attitude of professionals towards parents of clients (during the l950$ and early T9605) was one of criticism and blame. Parents tended to be perceived as responsible for much of their child's psychological problems. Parents were either villains or at best--incompetent. (p. 340) A second problem area parents experience is their perception that they as parents have little or no credibility with the profes- sional. The professional tends to discount the parent's input and relegate the information offered by the parent to the status of obser- vations made by an over-anxious or even neurotic parent. In the article "Parents and Families," Roos (l975) described this behavior of professionals as the "Deaf Ear Syndrome." He wrote: Some professionals seem unable to hear some of their clients' statements. Parents of retarded children have at times become infuriated when their most earnest requests have been totally unheeded. They sometimes gain the impression that they are per- ceived as complete ignoramuses, so that any suggestion they might make regarding their own child is categorically ignored. This propensity on the part of some professionals to ignore parental suggestions or information may result from their destructive stereotypes of parents. (p. 339) Gallagher (l978) described the same problem: One of the disturbing aspects of dealing with the profes- sionals is thatwhen one is playing the role of parent, one is automatically stripped of any knowledge or expertise that one might otherwise possess. Even simple parent observations are suspect because of the possibility of "bias." Over a period of ten years we both became quite expert in our ability to identify the onset of an attack and to predict the course of that attack. On many occasions, we tried, more or less desperately, to share those predictions with physicians with whom we had come in con- tact on an emergency basis. We almost uniformly found our judg- ments to be discounted. For example, we became aware of the medical strategy of choosing the least intrusive treatment and seeing if it will work. If it doesn't work, then try the next most intrusive effort or drug and continue in this way until one finds the level of treatment necessary to achieve the desired results. This is fine for the ordinary patient. Whenever doctors adopted this routine strategy, we often found our son in the midst of a severe attack before the level or strength of medication could be applied that could prevent it. On numerous occasions we tried to point out to the doctor that our son goes into attacks sharply and severely in almost a toboggan-slide style. Unless one could catch him before the toboggan had a chance to gain momentum, he would be in the midst of a severe attack before anything could be done. Much to our frustration, we watched our son go into such attacks as the doctors ignored our comments and proceeded in a plodding fashion to apply slightly stronger and stronger medica- tion as the last medication failed. All too often we had to observe our youngster in the midst of a severe attack. Fortu- nately for us, those physicians with whom we became acquainted over an extended period of time formed a relationship of trust with us which allowed us to work as a team. Then our own obser- vations and years of experience were brought to bear on the situa- tion in a constructive fashion. It certainly came home to us how easy it is for the professional to ignore parents' expressions of feelings or observations or intuitive judgments as to what might be the best course of action. (pp. 202-203) Parents' lack of credibility is not limited to the medical profession. Parents also have problems with the educational profes- sional. Jane Schulz (l978), mother of a mentally retarded adult and associate professor in the Department of Special Education at Western Carolina University, pointed out: A final factor that is detrimental to the parent-teacher relationship is the reluctance on the part of the teacher to accept the abilities of the parents. Since I was a parent before I was a teacher, I readily relate to this idea. . . . My sugges- tions were never welcomed. I was enthusiastically encouraged to help with the field trip to the airport and to make popcorn balls for the Christmas party. And yet, during periodic visits to the classroom, I saw teen-agers wasting valuable time taking naps, obese children constantly snacking, my son learning things he had known five years before. As a parent and as a teacher, I knew these practices were educationally unsound. Perhaps the threat to the teacher is that the lack of good educational programming will be discovered. (p. 31) Another problem area is the reluctance of the professional to give definite answers regarding diagnosis or to give such informa- tion in a blunt and insensitive manner. Akerley (l978) wrote about her experiences working with different professionals while trying to find out what was wrong with her son: Finally the time does come when not even the most conserva- tive professional can deny the existence of a problem. . . . With luck, our pediatrician refers us to an appropriate specialist and we are (or should be) on our way. We transfer our trust to the new god and wait expectantly for the oracle to speak. Instead of the strong, authoritative voice of wisdom we more often hear an evasive stammer: "Can't give you a definite diagnosis, . . . uh, mumble, mumble . . . virtually untestable. . . . Let us see him . . . cough, cough . . . again in a year." Ironically, when the oracle is loud and clear, it is often wrong: "Seriously emotionally disturbed, it's a severe withdrawal reaction to maternal ambivalence." The parents have just been treated to their first dose of professional puffery, and it is very bitter medicine, all the more so for being almost totally ineffective. . . . We were referred to a pediatric neurologist. Considering what I know now, it was an unusually enlightened choice. For most parents of children like Eddie, the first referral is to a child psychiatrist who considers them, not their child, the pri- mary patients. The neurologist and her colleague, a psychologist, did the best evaluation they could with a subject who was at best uncooperative, at worst totally unresponsive. The results, however, were singularly unhelpful: "We can't give you a diagnosis; his symptoms don't fit any known syndrome. We've never seen a child like this." John and I didn't know whether to weep or take a bow. I remember trying to pry something more specific from them: "Is he retarded? Autistic? (I had learned the word about two weeks earlier) Disturbed?" All of the above? None of the above seemed more like it; at least none of the familiar labels appeared to hit the mark precisely enough for the pros to be comfortable with it, but in their desire to be precise, they overlooked the need to be supportive. We felt totally abandoned. If they didn't know what was wrong, who would? And if no one knew, then no one would know what to do. Eddie was trapped in his misery, and we were trapped right in there with him. (pp. 40-41) Typically, the period of time during which the parents search for a diagnosis to their child's problem has the parents repeatedly questioning the doctor and receiving vague responses. Eventually the diagnosis is given and often given bluntly. Dr. Elsie Helsel (l978) is an associate professor and Coordinator of Special Education at Ohio University. She wrote about this experience concerning her mentally retarded son, Robin. I remember vividly the details of how I found out that Robin was seriously impaired. Robin was a second child, and from the time he was six months old, I had been questioning my pediatrician concerning his lagging development. For about a year, the pedia- trician had been turning aside my questions and delaying any unusual procedures. Finally he agreed to a diagnostic work up at Children's Hospital. When the orderly brought Robin back from one of the procedures, a pneumoencephalogram, he inadvertently left Robin's hospital charts in the crib. I picked them up and read, "Entering diagnosis: Mental Deficiency." Before being discovered, I had read all of the reports. Soon, however, a harried nurse entered and snatched the charts from my hands with a stern admo- nition that I had no right to read their contents. In no time at all, a small group of white coats and dresses came bustling into the room to talk with me until my pediatrician could be summoned. When he came, they respectfully withdrew and left him with the awesome task of explaining why he had not leveled with me earlier concerning what mental deficiency was, what the prognosis was, and why I shouldn't rush off to Johns Hopkins where I had a pedia- trician friend on staff. The only thing I really remember from that encounter is a garbled explanation of mental deficiency and the doctor saying, "We can't all march in the parade!" Our story is not atypical--lots of parents have told me simi- lar ones. Yet it has something to say to professionals concerned with the diagnosis and assessment of multiply handicapped children today--listen to the parents. They are frequently giving you the diagnosis. (p. 97) A more general, but perhaps more pervasive problem area between parents and professionals stems from the professionals' lack of aware- ness about the practical day-to-day needs of parents, including the excessive energy depletion and the constancy of care required to raise a handicapped child. Martha Dickerson (l978) is a school social worker and a foster parent to four retarded teenage boys. She wrote, I believe that as a professional social worker I have developed more genuine empathy for parents who accept the challenge of raising a child with a disability. I'd like to think that I was doing a reasonable job working with parents five years ago just because I cared and wanted to be helpful to them. But I don't believe I had an understanding of what it was like to live twenty-four hours a day, seven days a week with a child who was not meeting all of a mother's dreams. . . . As a result of having the four retarded children living with us, I believe I am more in touch with what it's like to live with a child who takes a very, very long time to learn something that is as basic as toilet training. My two biological children were toilet trained by three. I don't remember a wet bed after that. It was a whole other issue with two of our four retarded boys. To toilet train a thirteen- and fifteen-year-old and to deal with wet beds when a boy is sixteen is a very different thing. I am more tuned in to what that does to a mother, father, and a family system. (p. 79) Dr. Helsel (l978), in "The Helsels' Story of Robin," referred to this oversight by the professionals as she gave suggestions to those who work with families of the handicapped: First, the old cliché of "parent counseling" must go. The needs far exceed those of parents and they certainly encompass a great deal more than counseling in the traditional sense. A handicapped person places stresses on the whole family, so the whole family needs support and help in understanding the handi- capped child's condition, his needs both present and projected, the extra demands his presence will place on the family. . . Much of what the family needs does not fall into the realm of counseling. They need information, skills knowledge, management techniques, individual and group therapy. We would like to sug- gest a term . . . family supportive services. (p. ll3) In the professionals' eagerness to "counsel" parents of the handicapped, they often fail to recognize that the parents are asking for help of a more practical nature. This tendency to want to counsel parents can sometimes be traced back to the training the professional received in colleges and universities. Ann Turnbull (1978) was a faculty member of the Department of Special Education at the University of North Carolina before she became the stepmother of a retarded child. She wrote: What goes on in training programs in the name of education is sometimes shocking. It has become very prevalent in special edu- cation departments of colleges and universities to offer courses 10 on working with parents. I cringe at the thought of some of the course syllabi I have reviewed. In many of these courses, very limited attention is directed toward helping parents solve the day-to-day problems which almost invariably are encountered, yet weeks are devoted to the "psychological insight approach to parental guilt." Many such courses are a fraud and tend to insure further conflict and unsatisfactory relationships between parents and professionals. Extended practicum with families of handicapped children and the provision of respite care for fami- lies should be standard requirements for courses which purport to prepare students for working with parents. (p. l38) The last problem area identified here relates to inconsistency within the various professions regarding theoretical approaches--both over time, as theories change, and at any one time as various practic- ing professionals espouse their current approaches. For example, in Roos's (l975) article, reference was made as to how his treatment orientation toward mentally ill clients was heavily influenced by the psychiatric model prevalent during the time of his training. Trained as a clinical psychologist and indoctrinated into the psychiatric model prevalent during the 1950's I began my profes- sional career dedicated to ferreting out the psychopathology that lurks within the souls of men. Equipped with an awesome armamentarium of psychological tests and projective techniques, I stalked the unfortunates who had become ensnarled in outpatient clinics and mental hospitals. (p. 339) The parent may receive different recommendations for the same situation, not necessarily based on the needs of the handicapped child, but rather on the prevailing theory that the professional advocates, as the Culbertson (l977) study suggested. In an article titled "The Search for Help of Parents of Autistic Children, or Beware of Profes- sional Groupthink," Dr. Culbertson wrote, These observations suggest that often the advice and recom- mendations given to parents of autistic children by psychiatrists, psychologists, social workers and others may be largely determined by a professional's personal theoretical stance, rather than a 11 treatment strategy based on evidence as to the effectiveness of various treatment programs in particular kinds of cases, with little if any assurance that the methods used will indeed be useful to the child or the family. Such characterizations of professionals' behaviors have been made in the l950$ by Patterson (l959), later by Rosenthal (l962) and by Clarizio and McCoy (1976). Patterson (l959) commented that psychotherapist recommendations and procedures are more likely to be contingent upon the training and experiences and theoretical preferences of the psychotherapists than upon a diagnosis of the condition of the particular client. Clarizio and McCoy (l976) state "in practice, the type of therapy one receives depends primarily on the orientation of the therapist and only secondarily on the child's diagnostic label (p. 97.)" (p- 63) Clearly, whether the professional's approach is a reflection of the training he/she received or a reflection of the current theo- retical model, the needs of the handicapped person and family may become secondary to the implementation of a favorite theoretical approach. Similarly, the expectations that professionals have of parental behaviors, especially their reactions to having a handicapped child, can also be linked to the prevailing attitude or treatment approach the professional holds. As an extreme example, the love a parent had for a mentally retarded child was considered by some medical professionals in the 19405 to be morbid and inappropriate, and indicated the parents needed psychiatric treatment (Wolfensberger, l98l). Even more astound- ing is the fact that, at one time, some members of the American Psycho- logical Association actually considered euthanasia of mentally retarded children to be appropriate and that relieving parents of guilt over the euthanasia of their mentally retarded child was "good mental hygiene" (Wolfensberger, l98l). 12 As the professionals' attitude changes over time, so does the professionals' expectation of the "appropriate" or "healthy" parental response. For example, formerly it was considered appropriate to institutionalize a child as soon as he/she was diagnosed as retarded (Avis, 1978). Now, that same behavior would be considered rejecting and heartless. Current theories about parents' response to a handicapped child speak to the aspects of parental response, including denial, guilt, ambivalence, etc. (Chin, Winn, & Walters, 1978; R005, 1963). Some writers have discussed the parallel between parental response and the grieving process (Solnit & Stark, 1961). Olshansky (1962) wrote that a state of chronic sorrow is a normal and not a patho- logical parental response to having a handicapped child. Each change or shift in attitude of the professionals toward behavior of parents of the handicapped and the handicapped themselves prompts a different set of professional expectations about appropriate parent behaviors. The correct or appropriate parental behavior then according to the professional can change over time, as a reflection of society's attitude toward the handicapped, and can change from profes- sional to professional often based on the prevailing theory or atti- tude at the time the professional received his or her training. Little wonder, then, that parents become frustrated by professionals' incon- sistent attitude and expectation toward them as their handicapped child matures from child to adolescent to adult. 13 Importance of Understanding Families of the Handicapped It was an assumption of this study that interactions between parents and professionals will be improved if the professional can be given a heightened understanding of the life situation of parents of the handicapped. This improvement in understanding should result in a better relationship between parent and professional which will benefit all parties and improve services for the handicapped person. Parents are the primary caretakers, decision makers, and planners for their child. In the case of the severely handicapped, this responsibility continues for life. Parents need good supportive professional assistance in order to carry this awesome burden of responsibility. Professionals will become more efficient and effective in their tasks if time and energy are not wasted through approaches and tech- niques that are inappropriate in light of the perspectives of the parents. The professional can find support and assistance from the parent both in deve10ping appropriate approaches to working with a child and in having these techniques carried into the home and rein— forced there. Such a working relationship can be developed. Without it, parents' energy may be directed to negative obstructing activi- ties, e.g., complaints, hearings, court cases, or simply resistance to those programs and services designed for their child. One goal, of course, is the best and most appropriate pro- grams for the handicapped. It is obvious that such effots are not likely if there is a lack of understanding and trust between parent 14 and professional. It must become the responsibility of the profes- sional to seek to establish rapport with the parent, and the first step must be to develop the best possible understanding of the world in which parents of the handicapped child live. Such understanding will never be complete or perfect, but a willingness to look into this world will provide insights that may begin to bridge the barrier that too often adds to parental burden or program ineffectiveness. Current Approaches in Universities and Colleges to Help Prepare Professionals to Understand the Families of the Handicapped One would expect that college programs designed to prepare professionals to work with handicapped children and adults would incorporate into thecurriculwn,experiences that would help the aspir- ing professional to understand better the concerns of parents and families of the handicapped. A search for information about such training efforts, however, revealed a paucity of literature related to this topic. Much litera- ture was available concerning the notion of professionals educating parents through such programs as behavior modification, parent effec- tiveness training, etc., but nothing was found in the literature concerning efforts to assist professionals in learning about parents and the experiences of families of the handicapped. Purpose of the Study The purposes of this study were to: 1. determine the reactions of parents of the handicapped to certain hypothetical family life situations. 15 2. determine the ways in which professionals in training believe they would react to the same hypothetical situations. 3. determine any differences between parental and professional reactions regarding the hypothetical situations. 4. identify insights gained by professionals in training as a result of exposure to course elements designed to sensitize them to parent problems. 5. critically evaluate selected aspects of a course designed to train special education professionals at Michigan State University. CHAPTER II DESIGN AND METHODOLOGY Design of the Study A university graduate class of special education students was used as the setting for the study. The pre-existing purpose of the class was to improve the ability of the students, mostly special education teachers, to work with the parents of their handicapped students. The writer, working with the instructor of the course, modified the course by building into the course features that would further the major purpose of this research: namely, to discover gaps in professionals' understanding of parents. Two of these new features of the course developed around six major issues in the lives of parents of handicapped children, which the writer identified on the basis of her readings, her experience with other parents, and her own personal experience. These issues, described more fully as appropriate in later discussions of the research measures and findings, are labeled as follows: Family Energy, Search for a Diagnosis, Receiving the Diagnosis, Management of Ser- vices, Leaving the Natural Home, and Planing for the Future. These six issues served first as the basis for the develop- ment of six video-taped interviews with parents of a handicapped child. These tapes were used to present, as clearly and dramatically as possible, the experiences of one set of parents in regard to each 16 17 of these six issues. These presentations were intended to serve as a stimulus to the thinking and empathic feeling of the students. It was hoped that out of these tapes and the discussions they generated, the students would become aware of aspects of the lives of parents of which they had previously been unaware. The second application of these six major issues was in the development of the Parent Issues Questionnaire. This questionnaire consisted of a set of stimulus situations followed by questions asking what the reader would think, or feel, or do if he/she were in the described situation. The questionnaire was administered to a group of parents of handicapped children, selected for this purpose, and to the students in the university course. It was assumed that differences between the responses of parents and students would highlight the gaps in students' understandings of the feelings and thinking of parents. To capture the new insights that students were presumably gaining by participation in the course, students were asked to respond to what were labeled Journal Assignments. These assignments were intended to elicit from students, on the basis of their own introspec- tions, statements as to new perceptions of the problems, thinking, feeling, etc., of parents of which they had been previously unaware. Finally, as a by-product of the more central concern of this study, it was decided to seek student evaluation of certain aspects of the course. This purpose was accomplished by administration of what was labeled the Student Evaluation Form. 18 Participants in the Study The Parent Group A group of parents was needed to provide responses to the Parent Issues Questionnaire with which the responses of the students could be compared. Several considerations played a part in the selection of parents. First, it seemed obvious that the parents should be reasonably articulate and comfortable with the task of responding to the "as if" character of the stimulus situations in the questionnaire. Second, these parents should be typical of the kinds of parents with whom professionals have considerable contact. Finally, many of the parent problems defined as major issues in this study involved severely handicapped children, and, therefore, parents of children with relatively severe handicaps were chosen. A group of parents satisfying these criteria was found at a conference of the Association for Retarded Citizens of Michigan. Prior to the conference, a letter had been sent to executives of local chap- ters of this association throughout Michigan, asking for parent partici- pation (Appendix A). At the conference the writer addressed the general assembly to solicit parents who would be willing to meet briefly for instructions and for the filling out of the questionnaire. Eventually, 21 parents volunteered and completed the Parent Issues Questionnaire. Since the writer's goal had been to secure approximately 30 parents, additional volunteers were solicited from among parents of severely mentally impaired children with whom the writer was acquainted. In this manner, eight more parents were added to the group for a total of 29. 19 While it is obvious that this group of parents was a volun- teer group and therefore not representative of all parents of severely impaired children, this fact was not seen as a serious problem for the research aims of this study. While this group was probably more 'articulate, activistic, and perhaps desirous of being heard than the average, there seemed no reason to believe that the problems they encountered, and the feelings they experienced, differed significantly from those experienced by nonvolunteers. And, in any case, these "activist"-type parents are probably the ones most frequently in active contact with professionals. In Table 1 are presented the age ranges of parents, along with the ages of the children represented in each parent age range. Note that 20 out of the 27 parents had handicapped children (or adults) who were 10 years old or older. Of the 27 children, 15 were reported by the parents to be mentally retarded. The parents reported that three had been labeled brain damaged; four, severely multiply impaired; and two, cerebral palsied. Three parents gave no response to the ques- tion as to the label that had been given their child. With the exception of one child reported attending a class for the hearing impaired, and a 22-month-old who attended no program, all of the handicapped persons were in segregated programs specifically designed for the more severely handicapped. The Student Group A summer class in special education was chosen as the source of "professionals" for the study since it was assumed to include 20 persons relatively new to the field who would, in the future, be working with parents. In addition, of course, it was a captive group who could be asked to respond to various measuring instruments over a period of time. Table 1.--Age ranges of parents and ages of their handicapped child or adult. Parent's Number of Ages of Children of Parents Age Range Parents in the Given Parent Age Range 30-35 9 11,lO,lO,9,5,4,4.5,3.5,3 36-40 1 11 41-45 4 22, 19, 15, 22 months 46-50 3 19, 18, 10 51-55 4 33, 20, 18, 15 56-60 3 28, 26, 20 61-65 2 29, 24 66-70 0 none 71-75 __1__ 34 Total 27 Thirty-six of the group of 43 members of the class had profes- sional positions relating to special education, 2 were teacher's aides in special-education settings, and 5 were full-time students in special education or related areas. Eleven of the class members were parents of normal children; all others were nonparents. The students fell in age-class intervals ranging from 21 to 45, with 33 members falling in the 21 to 30 age range. The group consisted of 37 women and 7 men. 21 Since all of the students were, through their training and/or experience, knowledgeable about the field of special education, it is probable that they were somewhat acquainted with the problems of parents of handicapped children. Somewhat sophisticated subjects were desired for this study since, as noted previously, parents com- plain about the 1ack of understanding on the part of presumably com- petent professionals. It was reasonable, therefore, to select knowledgeable people from whom to attempt to elicit the kinds of failures in understanding about which the parents complain. Instruments The Parent Issues Questionnaire The Parent Issues Questionnaire (PIQ) is an instrument designed originally to highlight differences between parents and professionals in their responses to a set of stimulus situations. The stimulus situations are six descriptions of hypothetical, but typical, experiences of parents of the handicapped. Each situation is followed by three or four open-ended questions requiring the respondent to assume the role of the parent in the story. (See Appen- dix B.) The six issues covered by the questionnaire are the same as those discussed in the video-taped interviews. The situations and experiences were designed to portray dilemmas unique to parents of the handicapped. It was anticipated that the parents would more readily iden- tify with the parents in the stimulus situations, and as a consequence would give responses that would be similar to the responses of a 22 parent in a real-life situation. Students, on the other hand, would be less able to identify with the parent in the hypothetical situa- tion and thus would be less able to produce a probable real-life response. The parent responses, therefore, were to be considered as a criterion against which the student responses would be evaluated. It was assumed that, from these differences between the responses of parents and students, the gaps in the students' understanding of parents could be inferred. This research strategy can be exemplified by a consideration of the issue labeled Leaving the Natural Home. Questions following this stimulus situation were designed to elicit the strong sense of ambivalence parents feel when contemplating placement of their handi- capped child outside the natural home. It was anticipated that stu- dents would not understand this ambivalence, and hence their responses to the questions would not express ambivalent feelings. From this it would be inferred that a gap in student understanding had been iden- tified. The PIQ was pilot tested using four parents of severely men- tally retarded children and a class of special education students comparable in make-up to the class used in this study. It was deter- mined that the written instructions were clear to the subjects and that their responses were amenable to the anticipated coding procedures. It was suggested that a second stimulus situation be developed for the Management of Services issue. This suggestion was followed, and a second stimulus situation was added. No further modifications in the PIQ were made. 23 The written instructions for completing the PIQ (see Appen- dix B) were given to both parents and students. The parents were instructed to fill out the questionnaire alone, not as a couple, in those instances when a husband and wife both completed the form. At the conference there was a box at the registration desk for parents to return their completed questionnaires anytime during the three-day meeting. There were no time constraints; parents were asked to fill out the questionnaire at their leisure. The PIQ was administered to the students at the beginning of the first class session. Instructions for completing the form were the same as those given to the parents. Students handed in the com- pleted PIQ before leaving class. Journal Assignments One source for discovering gaps in the students' understand- ing of parents was the journal assignment. (See Appendix C.) The students' journal assignment served two purposes: (1) to help stu- dents integrate and make use of the course content and (2) to help students identify new insights they gained about parents and families of the handicapped throughout the course. It was through the process of identifying insights that a major purpose of the study was accomp- lished: namely, to have the student identify what it is he/she had not understood about parents and families of the handicapped. It was assumed that as students identified insights, this would indicate what they had not understood or appreciated about parents of the handicapped and their experiences prior to taking the course. 24 One of the objectives of the journal assignments was to make the experience of the parents less remote and therefore less threaten- ing to the student and to provide a common frame of reference with which to interact with the parent. This was accomplished by questions on the assignments which helped the student recognize similarities between his/her experiences and those of the parents. The process of journal writing in helping students make mean- ing out of an experience was demonstrated by Chris Clark (1981) and Sally Glassberg (1978) at Michigan State University. The journal questions were designed after discussions with them and a perusal of The Diary by Tristine Rainer (1978) as a reference. At the end of class discussions, the journal assignment was explained to the class. The author described the purpose of the journals and assured students that their responses would be confiden- tial. Names were not required, but students were asked to write their Social Security number on them. Students were asked to turn the jour- nal assignments in at the beginning of the next class meeting. Student Evaluation Form The Student Evaluation Form (see Appendix D) was designed to provide feedback from students about the course content and materials in order to improve them for future teachings of courses designed to help professionals understand families of the handicapped. The form was developed by the writer with assistance from the principal instructor for the course. 25 Students were asked to rank course components that helped them understand families of the handicapped best and to indicate "Keep" or "Omit" for all components. Several questions related specifically to those course components of particular interest: namely, video-tapes, PIQ writing experience, and journal assignments. The Video-Taped Parent Interviews As part of the effort to present to students the experience of parents of the handicapped as clearly and dramatically as possible, the writer developed six video-taped interviews of parents of the handicapped in conjunction with a university instructional and public television facility. Each interview topic was designed to cover cer- tain specific aspects of raising a handicapped child. Following are brief synopses of each interview. Tape 1, "Family Energy" The parents discuss the day-to-day life with Martin. The parents describe their family and give an overview of Martin's medical history. Highlighted in the tape are respective roles that the father and the mother played in Martin's care. Dra- matically illustrated are the constant state of alertness neces- sary to care for Martin at home, and ways in which the family adapted and directed its energy to provide the necessary care for Martin. Tape 2, "Search for a Diagnosis" The parents describe the agonies and frustration they experi- enced from their first awareness that something was wrong with Martin, the search for adequate medical help, and the conclusion (reached years later) that no definitive medical answer would ever be found. Several dramatic incidents cited by the parents illustrate how they learned to be aggressive when interacting with profes- sionals (especially the medical professionals). These incidents 26 offer a new perspective on the classic "shopping around" syndrome. Possible reasons for the consistent lack of support from profes- sionals during this time of Martin's life are discussed. Tape 3, "Receiving the Diagnosis" The parents discuss what it is like to hear diagnostic reports about Martin, the panic felt when professionals did not agree on their assessment of him, and how they decided to take over respon- sibility for decisions about Martin's educational program from the professionals. The parents compare the validity of professional observations made in only one context with their observations of the "whole child" in all facets of daily living. Suggestions are made for improving communication with parents when giving diagnostic information. Tape 4, "Management of Services" The parents explain how they acted as Case Managers to set up a "support system" for Martin each time they moved to a new com- munity, including the education of professionals and the coordi- nation of needed services. Also discussed are the frustration of working through hospital personnel to get needed help, the time and energy required to coordinate community services, and the reward of finally locating and obtaining the services. The parents tell about problems encountered at the Educational Planning and Placement Committee meeting before Martin was enrolled in school and how they felt it necessary to suppress their real feelings in order to maximize communication with the professionals. Tape 5, "Leaving the Natural Home" The parents discuss the factors that led to their decision to place Martin in residential care. These factors included trial experience for Martin on medical grounds and as a respite for the parents and the rest of the family. These trial experiences demonstrated the need for a more permanent placement. The gradual separation process between Martin and his family is discussed, including Martin's apparent happy adjustment to caretakers other than his own parents, the family's continued involvement, and their concern for Martin's life and happiness after he moved away. 27 Tape 6, "Planning for the Future" The parents describe their views of Martin's future and the plans they were beginning to make for his future. The separation process as described in Tape 5 reached its ultimate with Martin's death. The remainder of the interview deals with the circum- stances around Martin's death, the family's reaction to it, and how the family continues to remember Martin. It was decided that one set of parents would be interviewed covering all six topics. The television producer and the project director (writer) felt that using one set of parents was especially important to establish and maintain rapport between the audience (students) and the parents on the tape. Additionally, the continuity of experience over all six topics was more likely to remain intact by the use of one set of parents. A professor of psychiatry agreed to be the interviewer. Inter- view guides were developed by the writer for each of the six interviews. The parents to be interviewed were made aware of the topics to be covered, but did not know the specific questions they would be asked; the interviews were in that sense spontaneous. No editing was done after taping. During five class sessions, one or both of the parents on the videotape were present in the class and participated in class discus- sion. It was at the end of these sessions that the journal assignments were handed out to the class, to be handed in at the beginning of the next class session. Other Procedures There were three other instructional materials used in the course: 28 1. Articles from the book, ParentsgSpeak Out (1978) were assigned to expose students to the experiences of additional parents of the handicapped. Specific articles were selected to cor- respond with the topic that was to be discussed during each class session. 2. The advance organizers were designed to orient students to the video-taped interviews. Questions on the advance organizer helped students focus on the major issues discussed in the interview. 3. The Same/Different sheet was designed to capture the reactions of students to the parents on the video-tapes. Specifically, the students were asked to describe when they agreed or disagreed with the parents. Since students generally agreed with what the parents did, very little information was gained from this sheet; therefore, data from this sheet were not TEPOFtEd- Treatment of the Data The methods of analysis are described in Chapter III, along with the presentation of the data. CHAPTER III FINDINGS The Parent Issues Questionnaire Comment on the Analysis of Data From the Parent Issues Questionnaire The process of coding responses to the Parent Issues Question- naire was first attempted with two of the six topics from the ques- tionnaire. It was assumed by the writer, based on personal experience, discussions with other parents, and parents' accounts in the litera- ture, that Topic 5, "Leaving the Natural Home," and Topic 2, "Search for a Diagnosis, would elicit powerful reactions from parents, reactions that would be poorly understood by those who had not lived through the situations described. For example, it was expected that few students would understand the fear of the unknown and the panic parents experience until they know what is wrong with their child, and that, therefore, in their responses to Topic 2, differences between parents and students would become readily apparent in the coding. In line with this thinking, these two topics were carefully coded, and every effort was made to detect differences between the responses of parents and students. A second coder was used to check on the consistency with which the codings could be made. Since there was usually high agreement between the coders, no formal measure of agreement was attempted. Instead, both sets of codings are presented 29 30 for the reader's inspection. When a second coder was to be used, the writer prepared paragraphs defining each coding category, based on her experience in coding the material. These paragraphs supported the writer's verbal instruction of the coder. As will be seen, no appreciable differences were found in spite of these efforts. The procedures for coding responses to the remaining topics were there- fore shortened: frequently no effort was made to use a second coder, and no great effort was expended on seeking to develop coding cate- gories beyond the major response patterns. Another reason for avoiding extensive analysis of the data from the Parent Issues Questionnaire was the fact that inherent weak- nesses in the instrument became apparent as the responses were coded. These weaknesses are described later in the discussion of the results for Topics 2 and 5. "Anticipated" and "additional" responses.--In the reporting of the responses to the Parent Issues Questionnaire, the responses are discussed under the headings Anticipated Response (or Responses) and Additional Responses. The anticipated response is the response that the writer expected parents to give. That is, the stimulus situation was specifically intended to elicit this response from a parent who had presumably lived through an experience similar to that presented in the story. It was assumed, therefore, that more parents than students would give this response, and thus a gap in the students' ability to understand parents would be revealed. Under the Additional Response heading are reported the codings of all other major response patterns given by the respondents. 31 For some topic questions the categorization of responses was obvious and uncomplicated. For example, there was no problem in cate- gorizing the person to whom the parents would turn for help as a "professional" or a "nonprofessional." In such instances the coding was done by the writer, and no coder agreement was considered neces- sary. However, when coding categories became more complex, a second coder was used. When two coders were used, the results of both sets of codings are presented. Since there was generally close agreement, the codings were averaged, and the reported percentages of subjects responding to each coding category were based on these means. The first two topics (2 and 5) will be reviewed in detail. The stimulus situation is briefly described. For a more complete description, refer to the actual Parent Issues Questionnaire in Appendix B. Report of Data From Topic 5, fiLeaving the Natural Home" Stimulus situation.--The father returns from work to find the mother crying and the handicapped child wandering through the house. A crisis occurs when the father insists that the child be moved out. Question 1. Who will help you the most with this important decision? Anticipated response: It was expected that parents would tend to seek help more frequently from family and friends, while stu- dents would tend to seek help more often from professionals. Additional response: One additional category, "Myself," was added. 32 Findings: Table 2 indicates how many respondents from each group named at least one person in each of the categories. The intent was for the respondent to give only one response to this ques- tion. However, respondents in both groups usually gave more than one response. For this reason, the percent column in Table 2 may add to more than 100 percent. Table 2.--Distribution of coded responses to the question, "Who will help you the most with this decision?" Coding Categories Parents (N=27) Students (N=40) N % N % Professionals 10 37.0 24 60.0 Nonprofessionals 11 40.7 27 67.5 Myself 5 18.5 1 2.5 Both groups tended to indicate sources of help fairly evenly between professionals and nonprofessionals. However, it should be noted that a greater percentage of students than parents mentioned both professionals and nonprofessionals. This fact means that students more often than parents gave several responses. The tendency for stu- dents to give multiple responses continued throughout most of the ques- tions on the questionnaire. In view of this general tendency, the fact that a higher percentage of parents than students expressed the "Myself" category is of some interest. 33 Question 2. What are some of the thoughts that go through your mind as you begin to explore the possibility of your child living somewhere other than your home? Question 3. What feelings do you have as you approach the Depart- ment of Social Services office to ask about a foster home? Many respondents wrote about their thoughts when asked for their feelings throughout all six topics in the questionnaire. Feelings are defined here as emotions described by words like "anger," "frus- tration," "scared," "happy," "joy." Since respondents did not readily distinguish between thoughts and feelings the analyses of these ques- tions were combined whenever thoughts were expressed that related to the stimulus situation even though it followed a question about feelings. Anticipated responses: It was anticipated by the writer that the parent's sense of ambivalence and a tendency to judge herself (himself) negatively would be expressed most often by the parents. The following two paragraphs describe the categories of "Ambiva- lence" and "Negative Self-Evaluation" as developed by the writer, first on an a priori basis and then through a reading of the responses. Ambivalence--The parent expresses doubt about whether she/he should do this (place child outside the home) without necessarily identi- fying the source of the indecision. For example, she asks herself, "Is this the right decision?" or says, “I can always change my mind." She hasn't completely decided that this is the right thing to do. (Does not include parent's statement that she will not place child.) Negative self-evaluation--Statements which reflect parent's ques- tioning her own adequacy as a parent or person. Typically, "Am I a bad mother? responsible parent? selfish? impatient?" Comments that were directed to the parent about herself and judged nega- tively. ‘ 34 Additional responses: The remaining four coding categories are described in the following paragraphs used by the second coder. Concern about quality of love and care: Parents expressed concern about the quality of love and care the child will receive from foster parents in another home; for example, "Will they love him like we do?" "Will he be a part of a family?" or "Will he be well taken care of?" How will others think of me? How will others think of me/react to me as I do/consider this? Parent is concerned about how others, family, friends, social workers, will judge her or treat her because she is considering moving her child out. Typically, "What will they think of me? could also include "What will my child think or feel of me?" Also includes concern that the social worker will understand the problem. Have I tried everything? Parent asks herself if she has tried everything.T“Isn't there another way?" Parent may state another option to foster care. Does not include the statement that she will not put child in home. Parent recpgnizes the external pressures. Parent recognizes the external pressures (outside herself) that support the move. "Insti- tutions are horrible, but I may lose my husband." "I realized I couldn't drain the rest of the family." "My child has put stress on the marriage." Parent states the necessity for the move without necessarily stating why. "This situation cannot continue." Findings: Table 3 indicates how many parents and students expressed each category. From the table it can be seen that a higher percentage of students than parents gave responses in the anticipated categories: ambivalence and negative self-evaluation. This is exactly the opposite of what was expected. Students did tend to express more frequently a negative self-evaluation than did parents. Some of the responses written by students were very self-condemnatory. Parents, on the other hand, did not express negative thoughts toward themselves as often or as strongly, perhaps because they were more aware of the real stresses and may have resolved the issue of their adequacy as a person or parent long ago. 35 m o..~ m.m m w o m.m m._ _ N wmcvgoaem>m node“ H m>ez v o.Pm m.~_ N_ mp m m.m_ o.m m m woe do xcwca mgmspo __P3 3o: o o.mp o.o w e m.m o.o~ 0.x m N Pmcgmpxm mzu mmecmouwwcmwwwum m m.~¢ o.mp op mm m.m o.om o.m w o cowumspm>mukpmm m>wpmmmz p o.mm m.mm em mm N o.~m o.o_ op op mucw~m>wne< N o.m¢ m.op NN up _ ¢.¢¢ o.m_ N, N_ m>o_ do apw_a=c ozonemnmwunmw xcmm & gmmww mono“ xcmm & Emmww mono“ Acommumu mcwuou Aoenzv moemuzom Akmuzv mbcmeea gwmeo; emumoe a “zone xmm op mowewo mmow>emm meuom mo pcmsugmamo mcp zomogqam :0» mm m>ms so» on mmcwpmmm pong: new =~wsoc Lao» cusp gmsuo mgmszmsom mcw>wp upvco Lao» mo mpwpwnwmmoa any mcopaxm ow swoon no» mo ucwe Lao» cmsogsu om pug» mpgmzosu mgp Go «sow mew pang: .mcowpmmzc on“ on mmmcoamme vmvou mo cowuanwgpmwanu.m open» 36 As can be seen from the table, parents were concerned most frequently about the quality of love and care that the child would receive from foster parents in another home; second, they expressed their ambivalence about the move; and third, they recognized the exter- nal pressures that caused the move and tended to display negative self- evaluation. Students expressed most often their ambivalence about the move; then, second, their concern over the quality of care; and, third, they tended to judge themselves negatively. Another way of comparing groups is to rank order the categories according to the number of responses given to each category. These rankings are presented in the column headed "Rank." From the table it can be seen that the largest discrepancy between the two sets of rank- ings occurred for the category "Parent recognizes the external pres- sure." Parents appeared more responsive to external pressures. Note again the tendency of students to give multiple responses, as evidenced by the higher percentages. Question 4: In addition to the reasons presented in the story above, what other reasons could you have had for considering placement of your child outside the natural home? Question 4 was designed for instructional purposes in order that the students would think about reasons parents in other situations might have had for placing their child out of the home. It did not relate to this specific story. Responses from this question were not intended to be reported in the study. 37 Conclusion: Topic 5, “Leaving the Natural Home".--It may be concluded that there was very little difference between parents and students in their responses to the stimulus situation in Topic 5. Rgport of Data From Topic 2, T'Search for a Diagnosis" The second topic for which differences between parents and students were expected was “Search for a Diagnosis," Topic 2. Stimulus situation.--The story describes a parent who is concerned that there is something wrong with her infant, and who is not able to get any help; even is accused of being an over-anxious parent. Question 1. Where do you go for help? Anticipated responses: The expectation was that students would tend to seek help more often from school professionals, while parents would tend to seek help more often from the medical profes- sionals. It was expected that students would be more aware of the child's developmental levels and parents would be more concerned with etiology. The following categories were used for coding purposes: 1. School professionals: intermediate school district, Child Find, special education teachers, special educa- tion director 2. Medical professionals: pediatrician, another doctor, a clinic at a large medical center Additional responses: The following two categories were added after an examination of all protocols: 1. Family and friends: family, spouse, clergy, other parents, local Association for Retarded Citizens 2. Library 38 Findings: Table 4 indicates where the two groups sought help. If a respondent named more than one example from one category, it was counted only once. The percentages from both groups seeking help from the medical profession were very close, in contradiction to what was anticipated. Nearly half of the students indicated they would seek help from school sources, while only 20 percent would seek help from family and friends. Parents were evenly divided between school sources and family and friends, which may indicate a slight difference between groups when choosing sources of help. Table 4.--Distribution of coded responses to the question, "Where do you go for help?" Coding Category Parents (N=27) Students (N=40) N % N % Medical professionals 20 74.0 31 77.5 School professionals 9 33.3 19 47.5 Family and friends 9 33.3 8 20.0 Library 1 4.0 3 7.5 Question 2. What are some of the thoughts that go through your mind as you try to decide what to do? Question 3. What are the feelings you have during this time? Anticipated responses: It was anticipated that the following two categories would be expressed more often by parents than by students. 39 Doubting one's own judgment--Parent questions her own perception. Could include the thoughts "Am I crazy?" and "Am I really an over- anxious parent?" "Is there something wrong with me/my perception?" It is not "Hope I'm doing the right thing." Need for immediate action--Concern that something be done soon. Fear of delay,T1mpatTEnt to get action. It is often expressed as a fear that the condition will become worse if help is not found soon. Additional responses: The remaining categories were defined from an examination of the protocols. Negative thoughts/feelings about the medical profession (the system--The parent is critical of the medical profession and accuses them of not listening to her or using her knowledge, not telling her what they do know, "not telling me the truth." Feeling of aloneness--Helplessness, a sense that no one under- stands the situation as you do. Cut off from help or isolated. Findings: In Table 5 are reported the number and percentage of subjects' responses in each of four categories. The rankings of the categories according to frequency of responses are also reported for each group. From this table it can be seen that a higher percentage of students than parents gave responses in the "Doubting one's own judgment" and "Need for immediate action" categories, in direct oppo- sition to what was anticipated. The very low percentage of parents who gave responses in the "Need for immediate action" category was particularly surprising to the writer. The most frequent responses of the parents were the categories, "Negative thoughts about the medical profession" and “Doubting one's own judgment." These two categories were also the two most frequently mentioned by students. Note, however, that over half of the students expressed thoughts that indicated they doubted their own judgment, 40 m m.NN o.m N FF e o.m m.N N m cowyom mpmwuweew god nmmz e o.oF m.o m w m m.mp o.m a o mmmcmcopm No acmmem P o.mm o.NN PN MN N m.~m m.w m m acmEmczn czo m.mco mcwpasoo N m.N¢ o.NF NF op — m.mm o.m op m cowmmmwoga quwums asp psoam musmsosa m>mummmz xcam N cmmww macaw xcam N emmwu macaw Aoeuzv mocmuspm ANNHZV mpcmema meoampmu mcwuou .mwmocmmwv m Low cugmmm mucmcma mm mmcwpmmN cam mpnmzogu god wmwzcme asp cg mmmcoammg umuou we cowpznwgpmwonl.m «Famh 41 while less than one-third of the parents did. It should be pointed out again that parents tended to say less than students throughout the questionnaires. Note that in this case only one-third or fewer of the parents expressed responses in any one of the four categories. Students were somewhat more concerned with the category, "Need for immediate action,“ than parents, as indicated by the ranking that category received from both groups and the very low number of parents (3) who expressed it. Possible Reasons for Absence of Major Differences Between Groups Differences found between the groups in response to Topics 2 and 5 were very slight and were not considered to be strong enough to reveal ways in which students do not understand the reactions of par- ents to these situations created by the presence of a handicapped child. There are some possible explanations for the difficulty of identifying differences between the parents and students using the Parent Issues Questionnaire. 1. Parents often were unable to separate their own experience from the one in the stimulus situation and answered the questions as if they were talking about their own handicapped child and family. For example, in response to Topic 6, where the respondent was asked to assume that he/she was about to write a will, many parents said, "We're not old enough to have to consider this" or gave other reasons why they had not written a will, and left the questions unanswered. The fact that parents were unable to "pretend" that they were the parent in the stimulus situation destroyed the premise on which the Parent 42 Issues Questionnaire was based--that is, that the parents could put themselves in the role of the parent as described in the stimulus situation. 2. Many of these parents had had similar experiences many years ago and were somewhat removed, at least in time, from the actual experience as described in the stimulus situation. 3. Some of the parents had not experienced all of the phe- nomena involved in the stimulus situations and may not have been through the trauma and the thinking process that the topic was intended to elicit. Several parents wrote on their questionnaire, "Have not experienced this" (to Topic 5, for example) and left the rest of the page blank. 4. Many of these parents had higher-functioning children or adults than those described in the stimulus situations and may not have been able to relate to the intensity of the problems presented by the most severely handicapped child. 5. Parents were less verbal altogether; they wrote fewer and shorter sentences, and many left questions unanswered. It seemed to the writer that the parents felt no obligation to answer a question if they did not want to. Students, on the other hand, tended to say everything. Their answers usually covered the space allotted to them on the questionnaire and dealt with every possible aspect of the question. It is possible that as students they had a student response- set to answer everything they could imagine instead of keying in on one or two prominent concepts. The parents' answers became like a subset of the students'. 43 6. The Parent Issues Questionnaire as an instrument may be insensitive to the differences between these two groups. The develop- ment of the Parent Issues Questionnaire was based on the rationale as previously described, but it had not been validated as an instrument capable of determining differences between parent and student groups. The writer looked over the responses to the remaining four topics; the general impression was that the responses of both groups were similarly indistinguishable and suffered from the same problems as those just cited. Therefore, no effort was made to continue to look for differences between groups. However, it was felt to be worth- while to continue the coding of responses in order to describe the range of responses that were given to this type of stimulus material. Report of Data From Topic 1, "Family Energy“ Topic 1 included a description of three situations confronting parents of handicapped children not usually confronted by the profes- sional, each of which will be discussed in turn. Stimulus situation l.--Respondents were asked to assume that they were taking their handicapped child to Sears to be fitted for shoes. Question 1. What do you have to do to get organized? Anticipated response: It was anticipated that parents would have a wider variety of responses than students and give more atten- tion to the toileting and medication needs of the child. Findings: Table 6 indicates the ideas expressed by the groups and the number from each group who expressed them. 44 Table 6.--Distribution of coded responses to the question, "What do you have to do to get organized?“ Parents Students Ideas Expressed (N=27) (N=40) Both students and parents Activities related to feeding and dressing the children 19 18 Activities related to toileting the handicapped child 4 16 Making arrangements for the kinder- garten child 11 10 Getting up early 4 2 Start laundry before leaving home 2 1 Take along diapers and medication 10 10 Explain to the handicapped child what is happening 3 5 Students only Getting myself ready 5 Plan to go when stores aren't crowded 5 Be mentally ready; "psych up" for the errand 3 Prepare the day before (make casserole) 3 Parents only Plan to go when medication is most effective 1 45 Students reported a wider variety of things to do, as can be seen from the table. Both students and parents listed activities relating to feeding and dressing the family, toileting the handicapped child, making arrangements for the kindergarten child, getting up early, and starting the laundry before leaving home. Both groups mentioned taking along diapers and medication. The only idea expressed by parents that was not expressed by students was to plan to go to the store when the medication given the child was most effec- tive. The additional students' suggestions revolved around planning ahead. Contrary to what was expected, the students' ideas were more numerous. One possible explanation is that the students, almost all of whom were employed teachers, drew upon their experiences in plan- ning for field trips, and therefore were able to anticipate better the variety of needs that might arise in taking children to a store. Question 2. What are some of the thoughts you have as you prepare? Anticipated responses: There were three thoughts that the writer expected parents to express as they anticipated the sh0pping errand with their handicapped child: 1. Concern that the child would wander away in the store, while the parent was attending to the kindergarten child. 2. The necessity of having to explain to the salesperson that the child cannot talk, and tell him/her where his/her toe is. 3. Concern that the handicapped child will wet on one of the chairs in the store while being fitted. 46 There was no a priori expectation for how students would respond to this question. Findings: Table 7 indicates the thoughts expressed by both groups. Table 7.--Distribution of coded responses to the question, “What are some of the thoughts you have as you prepare?" Parents Students Ideas Expressed (N=27) (N=40) Concern over child's overall behavior in the store: wetting, temper tantrums, running around l9 17 Negative reflection; e.g., "life is hectic, a hassle, I dread going to the store." 11 8 Concern over the stares of strangers and others in public 9 9 Concern about the shoes: right fit, fact that the child can't tell you if they fit 6 2 Wish my husband were: with me, around more, helping me more 5 3 Concern about her own behavior: that she appear calm and coping, as if she didn't have a problem 5 3 Hope for a good salesperson and fast service 4 13 Wonder what the salesman is thinking 2 5 Everything expressed by the parents was also expressed by the students. Respondents from neither group were concerned with the 47 kindergarten child, since both had included in their preparation to wait until the kindergarten child had gone to school or had arranged for a babysitter. Neither parents nor students mentioned the neces- sity of having to explain the child to the salesperson, as had been anticipated. Both parents and students expressed concern with the child's overall behavior in the store--not merely wetting on the chair, but concern over whether the child would have temper tantrums. Qgestion 3. What are your feelings while you are at the store? Protocols were examined for words describing feelings. As mentioned earlier, parents and students often wrote their thoughts when asked for their feelings. Included here is a listing of the words respondents used that describe feelings, with no attempt to link them to a specific thought. Anticipated response: It was anticipated that when asked to describe their feelings while at the store, parents would use words like anxiety, anger, impatient, embarrassed, and self-conscious. There was no assumption about what students would say. Findings: Following is a listing of the words used by both groups when asked to describe their feelings while at the store with their child. Note again that students used many more words when expressing their feelings than did parents. Many of the words anticipated by the writer-~anger, impatient, self-conscious--were mentioned by the students only. Others were mentioned by both groups. Only students (3) expressed positive emotions in response to this question: namely, happy, joy, and pleasure. 48 Parents Only Parents and Students Students Only Caution Embarrassment Apprehension Exhausted Anxiety Tired Tension Some anxiety Frustration Some self-consciousness Anticipation Anger Happy with little things Some joy Pleasure Awkward Feeling of dread Impatient Stimulus situation 2.--Your neighbor is coming over this morn- ing with her normal three-year-old. Your handicapped child is at home since it is a teacher's inservice day. Questions 1, 2, and 3 used here were designed to elicit the anticipated response. Question 1. Is there anything special you do to prepare for her visit? Question 2. What are your thoughts as you prepare for her visit? Question 3. What are your feelings as she is visiting with you over coffee? Anticipated response: The parent of the handicapped child makes a comparison between her own eight-year-old and the neighbor's normal three-year-old, either while anticipating the neighbor's visit or while visiting with her over coffee. The comparison should con- tain an element of envy, sadness, or jealousy that her child could do as much as or more than the handicapped child could do. Two coders used the above paragraph to determine whether the respondent expressed the category of "Comparison" or not. Findings: It was found that 7.5 or 28 percent of the parents expressed thoughts that indicated they had made the comparison. Nine 49 students, or 22.5 percent of the student group, made the comparison. Obviously, there was little difference between the two groups in their tendency to compare the children. Stimulus situation 3.--Tonight your spouse has offered to take the whole family out to eat. Questions 1 and 2 were designed to ascertain whether the parents wanted to go out to dinner or to stay at home. Question 1. How do you feel about taking the family out to dinner instead of preparing dinner at home? Question 2. Are there any special feelings you have while you are at the restaurant with your family? Anticipated response: It was anticipated that more parents of handicapped children would find it to be as much trouble getting ready to go out as it would be to eat at home. It should be a definite sense of "yes" or "no"; if the respondent stated one reason to go out and another reason to stay home, the response was included under the "Undecided" category. Findings: In Table 8 are the results found by two coders in assigning responses to one of the three coding categories. Parents either loved the idea of going out to dinner or expressed right away that it was a lot of trouble and "not worth the hassle." Over half were positive about going out, a result that was not anticipated. Note the number of students in the "Undecided" category. Typically, they would state one reason to go out: "It would be good for the child or family"; then they would state that it really was a lot of trouble to get ready and not much fun since people often stared at 50 the handicapped child. This is another example of the tendency of the students to give several responses. Table 8.--Distribution of coded responses to: an invitation to take the family out to dinner. Parents (N=27) Students (N=40) Coding Category Coder Coder 7 Coder Coder 7 A 8 Mean ° A 8 Mean ° Primarily positive 15 15 15 55.55 14 15 14.5 36.25 Primarily negative 11 11 11 40.70 12 13 12.5 31.25 Undecided l l l 3.70 14 12 13.0 32.50 Totals 27 27 27 99.95 40 40 40.0 100.00 Report of Data From Topic 3, "Receiving the Diagnosis'I Stimulus situation.--In this situation the doctor, after repeated questions from the parents, reports to the parents that their infant is mentally retarded and probably should be institution- alized. Question 1. What is the first thing you do? Anticipated response: It was anticipated that the parents would start to cry and hug the baby. There was no a priori assump- tion about what response students would make. The first coding category, therefore, was: "Cry and/or hug the baby." Additional responses: Based on an examination of all the protocols, the following additional categories were identified: 51 Adamantly refuse to institutionalize the baby or give the baby up. Express a desire to go home. Ask the doctor for more information or request a second opinion. Get angry at the doctor, social worker, or at somebody. Findings: In Table 9, the five responses of both groups to this question are presented. From the table it can be seen that both groups responded primarily by crying or hugging the baby. Note, how- ever, after that response the two groups tended to have different reactions. The parents made comments that indicated their refusal to institutionalize the baby, and some expressed a desire to go home. The students, on the other hand, expressed anger and requested more information or a second opinion. Note the relative frequency with which students and parents got angry and requested more information of the doctor, as indicated by the rankings these categories received. Perhaps this is an experi- ence that the parents were able to relate to in a way the students were not. It may be that people in shock don't get angry or ask for more information, but tend to withdraw and heal a little first. Note also the category, "Refuse to institutionalize." Parents reacted more to the idea suggested by the doctor to institutionalize the child. Question 2. What was the overwhelming or dominant thought you had as the doctor gave you the diagnosis of mental retar- dation? Question 3. What did you feel as he told you your child was retarded? Questions 2 and 3 were designed to assist the writer in coding and describing the responses to this situation. However, the real 52 m N.NN m.m o_ m m N.F m. P o Noose paw N o.mN o.o_ _F m a m.m m.F N _ cowpmecoecw wees “masque e m.N o._ _ F m o.m m.N N m use; om op madman mmagaxm m o._ m., P o N o.ON m.m o m mNF_a=owb=pwum=w co mmscmm _ N.N© m.NN NN NN F o.mo o.N_ N_ 0_ Name m=;\xeo xcem cam: m < cam: m < N Lmuou Lavou scam N Lmvou Lmuou xcommgmu mcwcou Aoeuzv mpcmvzum ANNHZV mpcmcaa =Nou 8N mcwgp Swede 8;» m? um23= .compmmzc on» op mmmcoamme nmuoo we cowuznwgpmwouu.m mpamp 53 essence of the responses anticipated for all these questions was contained in responses to Question 1, possibly because that question focused on the first reaction of the parent. Respondents answered in a more detached manner to Questions 2 and 3, moving away from the heart of the story. With the movement away from the immediacy of the situation, the differences between students' and parents' responses seemed to lessen. Responses: Following is a listing of the concepts expressed by both groups when asked Question 2: "What was the overwhelming or dominant thought you had as the doctor gave you the diagnosis of mental retardation?" Thoughts expressed by both parents and students: Concern over how husband, family will react to the child being retarded. Why did this happen to me?/us? What should I do next? Concern about their ability to cope with situation. Concern about what the child needs/programming and how to provide it. My baby is still lovable. Thoughts expressed by parents only: I wish it were a bad dream. I hope he will outgrow it. Thoughts expressed by students only: What is the degree or severity of mental retardation and its meaning? I will think about lesser degrees of mental retardation and try to get used to the idea. 54 As mentioned earlier, these thoughts are somewhat removed from the immediate situation. The wishes of parents, that it was a "bad dream," or that the "child will outgrow it," contrast with the students' more objective curiosity about the level of mental retarda- tion. Many respondents did not answer questions about feelings with words describing feelings, as has been mentioned earlier. Below is a listing of the words used by those parents and students who did use emotion-words when asked to describe their feelings (Question 3). Words used by both students and parents: Denial, disbelief, relief (confirmation of suspicions), anger, rage, shock, scared, emptiness, and sad. Words used by students only: Embarrassment, shame, loss, pity for self and child, resent- ment, guilt, sick, depressed, failure, defeat, hurt, hate, frustration, caring and love for child, sorrow, disappoint- ment, alone, confused, devastated, upset, empathy for the child, billion machines going off in my brain. Words used by parents onLy: total blank, despair, appalled, overwhelmed, physically worn out, anxiety, world crushed, heartache. Here, again, students used more words in responding to this question. Question 4. What (if anything) could the doctor have done to make this interview less painful to you? The purpose of this question was to gather information from parents about how they thought the interview described in the stimulus situation might have been handled better from the point of view of 55 the parents. This question was not analyzed for the students. Following is a list of suggestions made by the parents. Responses: The doctor should have shown more empathy and caring for the baby, and not been so rude and unfeeling. The doctor should tell the parents about other services and set up an appointment for them at a school or clinic. The doctor should have taken more time and given more infor- mation about diagnosis, and included the positive aspects. The doctor should have left out the reconmendation to institutionalize. The doctor should have offered counseling. The doctor should have introduced me to other parents of the retarded. The doctor should have checked the baby better before. Meet with both parents there. There is no easy way to handle it; to the point is best. Report of Data From Tgpjc 4, "Management of Services“7 Following are two situations involving a meeting between the professionals and the parents of the handicapped child. Each situa- tion will be discussed in turn. Stimulus situation 1.--The parent of the handicapped child is at an EPPC meeting. Everyone enthusiastically comments on the progress the handicapped child is making and how they love working with him. The respondent is asked four questions relating to the EPPC meeting. The situation was intentionally set up so that the professionals outnumber the parent and were enthusiastic about 56 seemingly irrelevant tasks the handicapped child had accomplished. They were also affectionate and caring toward the handicapped child. ,Question 1. What thoughts occur to you as you get ready for the meeting? Question 2. What are your thoughts during the meeting? Question 3. What is your overall feeling during the meeting? Question 4. What do you do when they turn to you and ask you the question (if you have anything to add)? The questions were designed to elicit the anticipated response. Anticipated response: It was anticipated that parents would feel skeptical about the enthusiasm of the professionals and the seemingly meaningless goals they had set for the handicapped child. It was also anticipated that students would approve of the goals but would know that they were incomplete. Following is a description of the first coding category. Parent is skeptical about the professionals' behavior at the EPPC meeting. The parent questions the judgment of the professionals and indicates a generalized,although low level, lack of trust of the professionals. Examples of the parents' thoughts that fit the category are: Is their enthusiasm covering up for my child's lack of progress/their incompetence? Are they loving him and not teaching him? What good are their goals? or Their goals seem inappropriate to me. Would you love my child so much if you had to care for him 24 hours a day? Why are there so many professionals here; are they all really necessary? Additional responses: An examination of the protocols showed another response was fairly numerous from both groups: Parent is thankful/appreciative of the professionals' help. They like the fact that the professionals seem to care about their child, and express thoughts that indicate a trust of the professionals. Their general feeling about the EPPC meeting is good; they are optimistic, hopeful about their child's progress. 57 Both: Many respondents expressed both skepticism about the profess1onals and thankfulness to the professionals. This type of response was coded in the "Both" category. [jugipgsg In Table 10,the coded responses to Questions 1, 2, 3, and 4 are presented. Table lO.—-Distribution of coded responses to EPPC meeting. Parents (N=27) Students (N=40) Coding Category N % N % Parent is skeptical of professionals 10 37 23 57.5 Parent is thankful to professionals 7 26 5 12.5 Both 6 22 10 25.0 Total number of respondents who expressed one of the 23 85 38 95.0 categories From the table it can be seen that over half of the students expressed skepticism about the professionals in the story. Less than one-half of the parents who expressed one of the responses were skep- tical of the professionals. Nearly half of the parents who did express the categories were either thankful to the professionals or thankful, with reservations, as indicated by the "Both" category. Note the low number from the student group who were thankful to the professionals. Parent responses were more positive toward the professionals in this situation than was anticipated. It is possible they did not 58 realize that the goals the professionals mentioned in the stimulus situation were inappropriate. These parents did not seem to be bothered that the goals the professionals spoke of were not relevant to the development of the child's self-care skills, even though the accomplishment of self-care skills would make the handicapped child's care much easier for the parents. Parents were appreciative that someone was taking an interest in the handicapped child, even if what he/she was learning seemed to be of little use to the parents or the child. Most of the students were clearly critical of the professionals in the story. The five students who were primarily thankful to the professionals may not have worked with severely handicapped children or been aware of goals that were more appropriate for the handicapped child described in the situation. Stimulus situation 2.--The parent has been called in to a staffing meeting with several professionals at the school. Her/his handicapped child has been acting out, and the school personnel are hoping that the parent can offer some assistance in setting up a behavior modification program at school to curb the inappropriate behavior. Question 1. What thoughts ocCur to you as you get ready for the meeting? Question 2. What are your thoughts during the meeting? Question 3. What is your overall feeling during the meeting? ,Question 4. What do you do when they turn to you and ask you the question (Could you describe for us a little about how Johnny acts at home?)? 59 The questions were asked to elicit thoughts and feelings of the respondents as they imagined themselves anticipating and partici- pating in the meeting. Anticipated responses: Parents blame themselves. Parents blame themselves for the child's behavior at school. The parent may think, for example, “Have I done something wrong at home?" Parent feels that she/he will be blamed by others. The parent is apprehensive about or finds verification for the thought that the school personnel blame her for the handicapped child's bad behav- ior. The parent believes the school personnel will either secretly find fault with her or criticize her openly. Parent expresses resentment about lack of privacy. The parent expresses resentment that her private family life must be discussed by a group of strangers in order to help her handicapped child. Additional responses: Parent expresses gratitude to the professionals. The parent expresses appreciation and gratitude for the help the school personnel are giving them. Findings: In Table 11, the responses from both groups in each of the categories are presented. Table ll.--Distribution of coded responses to: questions about thoughts and feelings as respondents anticipate and par- ticipate in the staffing meeting concerning their handi- capped child's inappropriate behavior. Parents (N=27) Students (N=40) N % Rank N % Rank Coding Categories Parent expresses gratitude to professionals 6 22 1 Parent blames herself ll 2 Parent feels that she/he will be blamed by others 2 7 3 9 22.5 1 Parent expresses resentment about lack of privacy 0 O 4 O O 4 01 15.0 12.5 N w 0'" 00 60 From the table it can be seen that very few respondents from either group made responses in any one of the four categories. How- ever, a greater percentage of students than parents made statements that indicated they felt that the school personnel would blame them. No one expressed resentment that their private family life was dis- cussed. Clearly, the results did not fit with the anticipated responses. A greater percentage of parents than students expressed appreciation for the help they were getting with their child's behav- ior. This finding, along with the low number of parents who feared that the school personnel would blame them for their child's behavior, could indicate their trust of the school personnel. Report of Data From Topic 6, T'Planningjor the Future" Stimulus situation.--The parents of an l8-year-old handicapped daughter are anticipating writing their will. Question 1. What could be some of the reasons that you have neglected to write a will up to this point? Question 2. What thoughts occur to you as you begin to prepare to write up a will? Question 3. What is the predominant feeling you have as you think about your daughter's future? The questions were designed to help the respondents ponder their daughter's future with the intent of eliciting the anticipated response. Anticipated response: The parent expresses a sense of dread, depression,