SIBLINGS OF THE DEVELOPMENTALLY DISABLED ,,, by Susan Marie Bavaria Trinit'y College, 1971 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the Master of Arts Department of Communication 1985
This thesis for the Master of Arts degree by Susan Marie Bavaria has been approved for the Department of ,Communication Jon A. Graham M. Sterritt !>--I o f<;Date ______________
Bavaria, Susan Marie (M.A., Communication) Siblings of the Developmentally Disabled Thesis directed by Associate Professor Jon A. Winterton The purpose of this investigation was to explore certain aspects of a person s 1 ife growing up with and relating to a developmentally disabled sibling in the hope of discovering elements that help families cope. Twenty of both sexes between the ages of 14 and 39 were questioned using an interview schedule devised by the author. A chi square test was used to determine if there was a xelationship between scores on a Family Satisfaction Index (Walter 1977) and decision making, parentcommunication, and understanding of the handicap as they related to the developmentally disabled sibling. No relationship was indicated. Open-ended questions provided insightful information about sibling relationships when one is developmentally handicapped. Findings suggest that there are many facets that go into family satisfaction and comparing embroiled families with intact families using a family systems model may be
a better way to isolate facto/s\hat co7ld p .,a family at dsk for emotional strai(. ",/ ., I i The form and content of iv
CHAPTER I. CONTENTS THE DEVELOPMENTALLY DISABLED AND THEIR FAMILIES: A CONTEXT II. SIBLINGS OF THE DISABLED: A PROFILE III. METHOD: A PROCESS OF DISCOVERY Choosing the Problem . . . . Variable Selection . . . . Formulating Hypotheses Interview Schedule Construction . .. Sample Selection . . Pilot Study Data Analysis . . . IV. RESULTS: CONSEQUENCES OF INQUIRY v. DISCUSSION REFERENCES APPENDIX. A. INTERVIEW SCHEDULE . B. COVER LETTER c. OF FAMILY RELATIONS D. CONSENT FORM v -..; : .. :::.-: 1 15 26 26 28 29 30 35 37 38 39 53 57 60 66 68 73
Table 1. 2. 3. 4. 5. TABLES Frequency of Sibling Involvement in Decision Making Decisions in Which Intact Siblings Want to Contribute . . Foremost Information Source for Intact Sibling About the Handicap Knowledge of Handicap by Intact Sibling .. . . . . Sources of Pride for the Intact Sibling . . . vi 42 42 43 45 47
CHAPTER I THE DEVELOPl>'lENTALLY DISABLED AND THEIR FAMILIES: A CONTEXT This is a study about families, special families, embroiled families (Bank & Kahn, 1982), families unique because of the presence of a mentally handicapped child. These families function similarly to many other families except for that one variable which can and often does have an everlasting effect on all members of the family. Why it overwhelms some and goads others to integrate the disability into the fabric of family life and even become stronger because of it is not totally understood. A myriad of emotions and interactions play themselves out constantly in a family system. A family with a disabled child is, in actuality, a family under severe stress (Kaplan, 1969). Although the stress may ebb and flow according to the external and internal strains on the family, it is an everpresent constant, a reality with which they must deal. No absolute formulas can be applied because handicaps and families differ widely. But how a family functions before the child is diagnosed developmentally is extremely relevant.
2 The diagnosis of developmental disability is one of the most sorrowful, tragic communications a parent can receive. It is, in many cases, tantamount to a death knell for the newly born child. No matter how it is presented, when parents receive information that their child is retarded, it dashes their dreams and their hopes for the child and themselves. In the past, a diagnosis such as this would have meant instant banishment to a state institution, the horrors of which many of us have become aware. This dinosaur of mental health care conjures up images of gray walls and day wards with idle, babbling, men or women all in tattered robes, lurching in drugged stupors; and back wards with untold atrocities and freaks in filthy conditions. It was the dark ages for the mentally retarded and the state hospitals were truly dumping grounds for many people who did not belong there, but did not have anyplace elie to go. For years this dissimilar assemblage was lumped under the restrictive label "mentally retarded" but, in reality, there is a greater gap between "mild" and "profound" retardates than between "mild" and so called "normal" people. Most people classified as mentally retarded will, as adults, become indistinguishable from the general population (President's Committee on Mental Retardation, 1976). This points out a pernicious effect of labeling.
3 The term mental retardation connotes a negative image of a person who may be slow, dumb-witted, inept, etc. Part of the term itself, "retarded," has been used as a descriptive adjective denigrating the person being described. No matter how it is used, it is never positive. The more acceptable terms used today are: mentally handicapped, developmentally disabled, mentally deficient, person with special needs, and learning disabled. They are not synonymous but there is some overlap. What is important to note is the shift from inherently negative words to a more positive and less restrictive vernacular. This reflects the evolution and progress made by developmentally disabled people during the last decade. Initiated by federal Public Laws and strengthened through litigation and state support, the developmentally disabled movement made tremendous strides towards public recognition and acknowledgment of their plight. The term "developmentally disabled" arose from a recognized need that several categories of handicaps, including mental retardation, cerebral palsy, and epilepsy, overlapped considerably. For example, 66% of cerebral palsied individuals and 30% of epileptics are also mentally retarded (Wiegerink & Pelosi, 1979). The needs of these people required them to have specialized
services over an extended period of time. Consequently, Public Law 91-517, the Developmental Disabilities Services and Facilities Construction Act of 1970, was instituted to redefine these disabilities in a way that enabled more broadbased dispension of services to those in need. Paraphrased, the law defined "developmental disability" as one attributed to mental retardation, cerebral palsy, epilepsy (or closely related impairment) requiring treatment similar to that required for mentally retarded individuals, originating before the age of 18, and expected to continue indefinitely (Hollingsworth, 1978). The year 1975 produced the Developmental Disability Act which added autism to 4 the list. Much debate ensued in Congress over whether "learning disability" should be added as a category but a compromise was reached to allow dyslexia only when it resulted from one of the former disabilities. President carter signed Public Law 95-602, the Developmentally Disabled Bill of Rights and Assistance Act, in 1978 which provided the legal framework for the movement. Other cases and Public Laws have made an impact on the movement. The 1974 Education for the Handicapped Act ushered in many changes in the public school system and was the impetus for normalization of many children into classrooms. The following rights have been defended
5 by recent litigation and continue to be tested in the courts. They include: the right to live in the community (zoning cases), having a barrier free environment, marrying and enjoying sexual freedom, employment without discrimination, and benefitting from medical care. Most cases use the 8th and 14th Amendments as the basis for their arguments. The 8th Amendment which forbids cruel and unusual punishment, was used in the famous 0Willowbrookn trial which stated among many points, that the mentally retarded had the right to be protected from deterioration in an institution with no programming. The 14th Amendment, which forbids deprivation of life, liberty, and the pursuit of happiness without due process, provides the basis for cases that fight for many basic rights that we take for granted. States may vary in what they "allown disabled people to do, but many programs which receive federal funds .have additional conditions attached to the usage of those funds which stipulate incorporating the handicapped into the programs. Although milestones have been made in some areas, the closer handicapped people come to enjoying full status as consumers and citizens, the more opposition they sometimes experience, especially when it comes to sharing residential neighborhoods. They are a long way from being represented substantially in the work force and experiencing healthy neighborhood acceptance.
The developmentally disabled, limited in their mobility, socialize mostly with friends and family. Their personal needs necessitate interactions with the general public only when they travel to and from work 6 or buy food and clothing, consequently, few real relationships develop outside the immediate coterie of peers and family. If the person is also in a sheltered workshop instead of in the competitive labor market, out-side contact is further restricted. This narrow range of activity has a dual effect. The general public, deprived of meaningful contact, continues to see the developmentally disabled in existing stereotypes and the developmentally disabled, systematically denied the opportunity to interact and build relationships, do not fully develop their social and interactive selves. In addition, they do not draw attentiQn to themselves through high profile activities; n6 sit-ins, no disr ruptions, little vocal action at al,l although self-i advocacy is encouraging some to be quite vociferous about their condition. There are crucial issues facirig mentally handi1 capped people and their families to;day. Independent I living and working in the labor force stand out as two of the most important odes. Transporation and accessibility follow close behind. Deciding to
7 place a son or daughter in a residential group home or allowing them to travel by train and thus work at a regular job rather than stay in the protective cocoon of a sheltered workshop are complex decisions that involve relinquishing some parental responsibility. There are always risks when exposing children to more societal interaction. Parents, for the most part, have made all the decisions for the child throughout his life so it is natural that they are more protective about this particular offspring. But the thrust now is towards more independence and if parents opt for that there are choices they can make. At least the options in living situatons, employment, accessible programs, and transportation provide a broader range of alternatives than previously were available. The developmentally disabled have progressed along a continuum struggles still confront families who live within the current parameters. Certain emotional constants can haunt families with a handicapped child. The strain may worsen an already tenuous family situation or it may encourage a good one to thrive more. Developing a strategy for coping with the situation is unique in every family. Research indicates that there are universal emotions which often accompany the presence of a mentally retarded
child in a family. Anger, guilt, loneliness, fear, and marital stress are common states of feeling that resurface intermittently in both parents. "Chronic sorrow" (Wikler, Wasow, & Hatfield, 1983, 313) is a term that describes the sadness that affects parents over time. These emotions permeate a family's foundation. Most research has focused on the pathology of an embroiled family. Depression, physical illness, divorce, and alcoholism have all been cited as fallout consequences. Until recently, professionals have not approached this family from a positive perspective that presupposed something good emerging from the situation. However, there are instances of families being strengthened by their experience. A profile of this family is slowly being developed since helping professionals feel that certain factors precede what they consider healthy coping family ecologies . Even with this awareness, Wikler discoverd that only 9% of caseworkers perceived parents as deriving strength from having a mentally retarded child. In actuality, 75% of the parents felt stronger! This provided some impetus for her conclusion that more success oriented family frameworks were needed and that those whose strength had been augmented by having a handicapped child were not the "odd few." 8
9 In a society that places such a premium on intelligence, achievement, social advancement, and material goods, it is not unusual that there would be a discrepancy in thoughts between the professionals and the families themselves. It is really a statement about the values deemed desirable in our society and those which are not. Having a mentally retarded child is not a desired trait in any family but neither is it as totally negative as parents are led to believe frQm infant diagnostic tests. Sarason warns that the medical profession, while delineating in minute detail the origin and clinical prognosis of a particular individual, neglects the family context within which the child will grow and function (Sarason, 1979). Medicine, by its exacting nature, wants to predict a person's fate cleanly and completely. However, in reality, the intrafamily social. dynamics are probably the most critical factor in how expansive a child's total growth will be. Too often parents are left with a total medical description of a condition and no expectations of what that means in the child's and their future life together. This is not unique to mental retardation. A study of cancer patients revealed that physicians do not deal well with the psychological and interpersonal implications of the disease to their patients and rarely address the
10 families as an important factor affecting patient out come (Sarason, 1979). The importance of the family as the singular most vital factor in emotional, physical, and mental development when the etiology of the disease is unpredictable cannot be overstressed. One must keep this perspective in mind when discussing mental retardation in the u.s. today. While a disabled baby does not affect every family, couple, or sibling in the same way, the general societal and medical assumption is that the birth of an infant with special needs is adevastation. The initial encounter between medical personnel and parents stands out in the literature as one of parents' strongest complaints and sources of anger. Perhaps the physicians need to be sensitized to giving helpful information to a parent about.whether their child will be able to walk, speak, read, or write rather than a perfunctory medical diagnosis. Guilt, loneliness, fear, anger, and marital stress can continually but the healthiest couples are those who deal with them, resolve them, or at least come to terms with them and move on. Guilt sufferers must learn not to question endlessly how they might have prevented it or what they did. that caused it. Ruminating over and over in the mind cannot
help. Analyzing why and determining if it will affect future childbearing potential is But dwelling on unknown causes beyond a certain point can strangle attempts to move on and exacerbate existing family turmoil. As joyful an event as a new birth usually is becomes exponentially more tragic when it goes awry. The finality of death somehow seems easier to cope with both within the family and outside of it than the unknown and seemingly hopeless future of a mentally baby. (Again that negative bias.) If a death or a catasttophe strikes, people rush to shore each other up and offer hope. But in the case of bearing a.developmentally disabled child, people, perhaps because it is a reminder of their own fallibility and their luck, sometimes remain distant from the stricken family. At a time when most families need support and love, they sometimes endure their sorrow with fewer friends around. The future looms like a black cloud in the borizon for parents faced with this problem. As time goes on and the family integrates the child into their scheme 11 of living, the future does not appear as ominous and parents feel more in control of their life and family. Buta fact of life is that most developmentally disabled
people will need some type of guardianship at least in the future. Unless the child is institutionalized at birth with the stipulation.,.that he will always remain . .. ::.12 there (and that is not necessarily allowed by law today depending on the degree of handicap), all parents must deal the ultimate fate of their No parents consider death as such a real part of life as those who have handicapped children. Since they are the predominant caregivers throughout the child's life, their death signifies a critical juncture for the whole family. Sometimes there are diverse opinions about how the mentally handicapped sibling will continue to live. If protective parents have kept the child home all his life and the normal siblings have felt that a group home would be more suitable, the death of the last parent raises serious problems for all involved. A 45-year-old mentally handicapped person who has had one base of operation all his life may or may not be able to switch residences without a great deal of trauma. If parents have also stipulated that they "never want ____ in a group home" or "always want the family to care for ," the remaining normal siblings must deal with a ------tremendous amount of guilt. Future caretaking responsi-bilities and plans persist as one of the most potentially
volatile decisions especially for families with older children. 13 Marital stress is a given in any marriage. A mentally retarded child can be a rallying point in a marriage or a wedge that finds the weakest crack. Again it is the strength within the marriage before the mental handicap which is the factor that predetermines the success potential in adapting to an almost overwhelming variable. Certain factors have been isolated as being signifi cant in helping parents (and consequently families) adjust. A strong religious background seems to predict a greater acceptance and orientation to caring for the child at home CCrnic, Friedrich, & Greenberg, 1983). Social support and locus of control have also been isolated .as highly (Crnic et al., 1983). Social class status (and subsequent money for respite care>, marital integration and satisfaction, and more relaxed attitudes and expectations may, in general, release the stress of having a handicapped child. What is by the parents and by the siblings, both normal and handicapped, most definitely is circular and reciprocal. The family is the sum of its parts and the emotional quotient is dependent on those factors too.
While this chapter has given an overview of the dynamics and challenges facing embroiled families, it. has also hinted at the complexity and the many factors needed in developing a coping strategy. More information is needed by professionals so they can avoid bias and deal with the realities. When families with developmentally disabled children are studied, the parents, and particularly 14 the mother, have been the roles most often evaluated. Siblings and fathers have been relatively neglected by researchers when compared to mothers (Seligman, 1983). The next chapter deals specifically with siblings of the mentally handicapped: how they function and evolve in families with special needs.
CHAPTER II SIBLINGS OF THE DEVELOPMENTALLY DISABLED: A PROFILE Any study which purports to examine relationships between siblings whether as children or adults must consider the matrix which nourishes them: the family. Everything happening in a family creates the milieu in which each member nA family works when its members feel good about the family, when their needs are being met and development and relationships flow smoothlyn (Garbarino, 1982, p. 72). The kind of communication that goes on and whether it is open and honest may be one good barometer of the emotional health of the family's environment. Siblings have not had the extensive examination and scrutiny that other family relationships have undergone. The mother-father and parent-child dyads have been studied more often because their importance in terms of overall health development are considered more crucial. However, siblings have exerted influences on one another in very special ways. It is the one relationship that can begin before one can talk and last a
16 lifetime. As a subset, they "exert an important mutual influence for good or ill, throughout the lifespan" (Adams, 1981, p. 32). Whether the influence is weighted toward the "good" side resides with the parents. "In any family system, the relationship between the parents largely determines the climate and overall effectiveness of family life" (Meyerson, 1983, p. 293). Pathological expressions as well as positive ones stem from the parents and the total family experience. In essentially all the studies of children with mentally handicapped siblings, the attitudes of the normal ones directly reflected the parent's attitudes (Fischer & Roberts, 1983, p. 399). This is a refrain found repeatedly in the literature. San Martino and Newman (1974) state that how a child deals with a mentally retarded sibling is determined by the "family style" expressed by the parents and other siblings. Grossman (1972) also dis in her prodigious study of 80 college students that the total family's handling of the situation set the tone for the way the individual members responded. It is important to have this perspective when studying a whole system. Although they are very likely to mirror their parent's attitudes, siblings experience their own unique fears, guilt, anger, loneliness, and feelings
of ambivalence about their retarded siblings. Their reactions are similar to those experienced by children with chronically ill siblings who may also encounter resentment, hostility, and guilt within themselves as byproducts of living with a sibling suffering from cystic fibrosis, leukemia, muscular dystrophy, or other serious ailment (Travis, 1976). 17 The dynamics of a family with a child that needs ongoing attention .takes away parent time from a sibling who, because of his health, can be more self-sufficient. It is natural for even an emotionally healthy child to get angry at parents, and sometimes the disabled sibling too, for the disruptive effect on his life and the seeming inability to live normally. Parents, especially iri the beginning, must spend inordinate amounts of time seeking medical care and therapy for the sick one. This extra attention may be perceived as favoritism and cause jealous feelings to emerge. The relentless search for the best medical care may lead to a feeling of exclusion for the well one. It should be mentioned that these emotions are universal among children experiencing chronic stress in a household. Having sorrowful or angry feelings intermittently is quite normal. Developing a coping strategy is not about denying feelings but acknowledging them and dealing with them. Experiencing a loss
such as the loss of a hoped-for healthy child may parallel the actual loss through death of a loved one (Seligman, 1983). The stages of anger, denial, grief, and, finally, acceptance are not uncommon. Family 18 therapy often helps families get to the acceptance stage so they can focus on the present and future needs of themselves and their families. Sensitive parents who devote special time to their healthy offspring and allow them to exchange information about their feelings and frustrations move towards fostering more positive inter-action in the home. But it is not easy under the best of circumstances, children sense a nfragile qualityn about the home sometimes (Meyers, 1978). If they want to especially please their parents they may not want to ndisturb their'already troubled worldn by speaking out (Meyers, 1978). There is a dearth of information about normal siblings with mentally retarded brothers and sisters. In a recent overview article which highlights the problems and outlines the areas which should be addres-sed by professionals, the author states that, given the paucity of consistent,.conclusive, research findings, the best way to investigate and identify the needs and problems of the siblings .of mentally retarded would be to find out from the siblings themselves what the problems are. (Wasserman, 1983)
A review of existing research, including the Grossman study mentioned and another one of teenagers who met in discussion groups, reveals several areas-of vulnerability, areas that may be potential sources of stress for this group. These include the following: 1. Their need for information about the handicapping condition and its effect on them physically. 2. Their need to understand and work, through emotional reactions that stem from having a mentally retarded sibling. 3. Their concepts of themselves, their selfidentities-in relation to a retarded, close family member. 4. Their need to develop strategies for coping with this predicament in their lives. Some studies have attempted to focus on these points. The need the normal siblings have for information is a theme in the research. Schreiber and Feeley (1965) found that accurate and up to date information about their mentally retarded sibling is what children want. Murphy, Pueschel, Duffy, and Brady (1976) relate that even very young children are aware 19 of the anxiety their parenis are experiencing and are receptive to communicating about it. Pearlman and Scott
20 (1981) suggest that parents should initiate dialogue as soon as possible with their children about the nature of the handicap and gear it to a level the child will understand. Working through emotions were mentioned before but Grossman's (1972) study mentions the perils that may befall those who fail to deal with it. In her study she concludes that 50% of those with a handicapped sibling were damaged by the experience and manifested it through feelings of resentment, bitterness, guilt, and deprivation. Children often feel "different" because they have a developmentally disabled sibling. When children are involved with the rest of the family in treatment programs and consequently come in contact with other siblings in similar situations, it seems to alleviate fears of not being "normal." A common bond develops among the normal siblings whoreally have a lot to share about their experience but do not ofte.n get the chance. Therapists who have used family centered programs are convinced of its value but this author is further convinced that multi-family and. multi-sibling interaction offers opportunities for unique and much needed sharing. Involvement in decision making and other home treatment programs seem to help integrate a family more.
21 Older children welcome the opportunity to in their sibling's treatment and show much curiosity and interest in how well they perform tasks (Murphy et al., 1976). Research in the past indicated more recurrent pathology among families with handicapped children. Alcoholism, depression, and divorce have been cited as consequences. However, recent studies have shown a reverse trend among this deviance-susceptible which are mentioned in the text below. studies conducted in the early 1980s indicate that families with mentally retarded children are g9ing through a positive transition period. What constitutes these changes quite possibly ranges from increased services and education of the disabled in the mainstream to landmark court decisions and subsequent community integration and visibility. Additionally, medical discoveries and inquiries have helped lift the stigma associated with those related to the handicapped in the past. Since so many occurrences thrust this population forward simultaneously, it is difficult to exactly why recent studies reflect the positive change. Lipner (1982) examined siblings of the mentally retarded and hypothesized that not only would they be lower in self-concept and perceive parents as more
22 demanding and punishing and less nurturant but that the phenomenon would be exacerbated among normal female siblings. Results were insignificant on both counts. When 52 families were studied, half involving the presence of a mentally retarded child, their intrafamily functioning and the self-concept scores of the older normal sibling matched that of the control grqup (Horowitz, 1982). Whether intrafamily pathology within embroiled families is declining is uncertain. Certain factors do affect adjustment: the degree of the handicap, the family socioeconomic level, family size and the number of siblings, religion, and, most importantly, parental However, this newer research hints that there may be aspects unique to strong families, regardless of the presence of a special Researchers need to.be encouraged to explore more creative solutions for ameliorating stress in special families and also compare them to their intact counterparts who do not harbor a developmentally disabled child . From what we have examined thus far, it is indicated that helping siblings cope ultimately helps families cope better too. We know that family members mutually affect each other in varied ways and that a
23 kind of emotional symbiosis forms, for better worse, among them. Certain factors have emerged as edging siblings toward the more positive side of the continuum in terms of integrating a handicapped sister or brother into their lives. These factors include communicating openly and expressively, being informed of the disabled one's prognosis, feeling comfortable enough to reveal positive and negative emotions to other family members, especially parents, knowing whether their child-bearing ability is affected, and being involved with decisions about the handicapped sibling which ultimately, involve them. Most of the studies mentioned in this chapter have been conducted on subjects who are 21 or under. There has been very little research on adults who are no longer residents in the basic family unit and are over 21. The impact of being raised with a mentally handi-capped sibling, as expressed by them in retrospect, would likely be quite different. Hindsight about one's own life can sometimes have more clarity because the emotions of the moment do not clutter the facts. Also, an adult who has felt even great emotional strife at one point in time 10 or 15 years ago may be more likely to share information when the immediate pain is gone. It is this researcher's
24 opinion that adults will be more qapable of dealing with the subject of having a mentally handicapped sibling and be more aware of feelings and what they felt should have been done at the time because they have worked through the problems and learned from the experience. Besides, many of them still must deal with important decisions about an older mentally retarded sibling and would have valuable information about that process. How siblings grow older together and what they mean to each other through that progression is. a subject of interest to psychologists today. When one.of the siblings is also mentally handicapped, it adds a whole different dimension to the relationship. This research will examine that relationship and address specific aspects of. it. It will ask what decisions are the most important for them to be involved in, who taught them the most about their disabled sibling, how much information they have about the handicap, and whether they know the effect (if any) it has on them physically. Peripherally, subjects will have the opportunity to disclose what sorts of emotions kept Cor still keep) from their parents, what gives them a sense of pride about their sibling, what effect it has on them now, and what negative experiences they may have had with strangers, family members, or friends.
25 Family communications professionals, social workers, and others who deal with embroiled families may --._.,have use for the information that this paper gleans. .: .. -:::.::Not only willit give some insight into the dynamics of dealing with older mentally handicapped people but it may provide new parents of developmentally disabled children with a blueprint for the future: what they want to evolve towards or what they may want to avoid.
CHAPTER III METHOD: A PROCESS OF DISCOVERY Choosing the Problem Selecting a research problem is motivated by an interest in either: elaborating on ideas that have already been presented in the literature on a subject, or, establishing a new theory based on what is currently known. The origin of this paper which aims at the latter had its seminal development in exposure to and experience with a group of developmentally disabled teens and adults in a recreational program that met every Saturday. Saturday Club, as it was called, had such diversity among its members that this author's first reaction upon exposure to the group was wondering why this unlikely association was taking place. People, as social creatures, need to interact with others but this group ran the gamut from witty, humorous conversationalists to non-verbal and withdrawn individuals. Surely, it seemed logical to some of these people would feel more comfortable in more "normal" surroundings. The sad fact was that these people had been isolated a long time
ago by being labeled "retarded." What Saturday Club fulfilled for them was a place to be themselves, meet their friends, have fun, and not have to deal with societal expectations or rejection. Getting to know them better, observing their family interactions during transportation drops and pick-ups, and conversing with parents not only raised this researchers consciousness but also kindled curiosity about the subject, a first ingredient in any inquiry. Some families appeared to integrate a disabled person so easily into their lifestyles without any visible of chagrin. Questions emerged. How did they do it? made it easier? Delving into the subject revealed that there was much pain in families with developmentally disabl.ed children but there could 27 be joy and exhiliration too. During a telephone call to an admired author, Dr. Daryl Paul Evans of the University of Kansas Sociology Department, he disclosed that in the process of researching his book, The Lives of Mentally Retarded People, he wished he had with siblings more and that when given the chance, they had many feelings to express about their different situations. Thus, indirectly, he prompted the choice of topic for this study, Siblings of the Developmentally Disabled.
Variable Selection It is always challenging to select variables I becaue one must choose not only compelling ones but measurable ones Since this project was the first attempt by the neophyte researcher, those qualities which were easily definable and quantifiable were 28 chosen. A review of published material and the author's exploratory interests led to the following choice of variables which are defined conceptually below. If the variable under question will also be measured, it is further delineated operationally. They are as follows: Developmental Disability: a condition including mental retardation, cerebral palsy, epilepsy, autism, spina bifida, muscular dystrophy, and.other significant neurological disorders. Involvement: expressed inclusion on an ordinal scale and positive indication on both open and closed ended questions. Decision Making: all input leading to judgments made about or by the developmentally disabled sibling. Ranking Parents: specifying manually the #1 item next to the term "parents," "mother" or "father" on a list of choices on an ordinal scale.
29 Primary Source of Information: principal supplier of facts. Origin: cause. Knowledge: understanding expressed verpally on an open ended question. Severity: type of handicap and degree of seriousness to subject in terms of his ability to hava riormal children. probable and subsequent limitations of the developmentally disabled sibling as expressed by the subject. Levels of Family Satisfaction: way a person feels about. his family as measured by the Index of Family Relations (Walter Hudson,-1977; see Appendix C). Formulating Hypotheses Combining the above constructs leads to the fol lowirig causes, namely, the independent xl involvement in decision making x2 ranking the parents as the primary sources of information x3 knowledge of the origin, severity, and prognosis of the disability And the effect of the d_ependent variable: yl expressed-family satisfaction
30 Thus the hypotheses clearly stated are the following:* 1. Increased involvement in decision making concerning the developmentally disabled sibling will correlate positively with high levels of family satisfaction. 2. Ranking parents as the primary sources of information about the developmentally disabled sibling will correlate positively with high levels of family satisfaction. 3. Knowledge of the origin, severity, and prognosis of the developmental disability will be positively correlated with high levels of family satisfaction. Interview Schedule Construction The issue of having a mehtally handicapped sibling is complex and varied and an opportunity for full creative and expressive self-disclosure was essential. It was determined that a survey questionnaire administered in a face to face interview would be the best instrument for this purpose (see Appendix A). *Author's note: The formulation of hypotheses, variable selection, and interview schedule construction evolved concomitantly so please be aware that the chronological order in which they are presented here is not wholly correct.
31 A structured interview schedule combining both open ended and fixed alternative questions specifically aimed at the sample was designed by the author to draw out the sought. after information. There were several potential theoretical areas that the author wanted to explore: 1. The quality of interaction between subject and sibling. 2. decision makirig input by the subject concerning the sibling. 3. The caretaking responsibilities of the subject. 4. The amount of information exchanged with the parents about the sibling. 5. Similarities and possible points of identifica tion between subject and sibling expressed by the subject. The basic consideration for all questions was to find those aspects that improved the quality of life for embroiled families, and increased. family So, questions were formulated from that perspective. Since developing coping strategies seemed to be a familiar phrase throughout the literature, this research had as its goal to add to that constructive body of knowledge. Isolating what problems were experienced, what caused problems for a sibling and what led to solutions waa the ultimate investigative intention.
The initial drafts for the interview schedule, although covering the areas in question, presented some other measurement problems. There was no system for determining how strongly a respondent felt about an issue. For instance, a subject had a choice of seven different potential that he might be involved in making but there was no way for him to express his degree of input.or his frequency of involvement. Also, if a subject said that "yes he played with his brother five times a week, there was no way to articulate what the quality of the play was and its duration. Since mostly adults were interviewed, this question was eventually deemed inappropriate. An early question requested a subject to express 32 a point of identification with his sibling and state whether they were alike or similar in any way. It was theorized that the subject would "feel better" about his sibling if he did find some mutuality between them. But as the dependent variable evolved from feeling good about the mentally handicapped sibling to family satisfaction, that particular question was deleted. As the instrument became more refined, so did the variables under inquiry. The shift from looking at sibling interaction, identification, or caretaking responsibility to simply studying the sibling seemed more exact and focused, and thus more measurable.
How a subject interacted with and felt about his sibling was important because a nigher degree of it 33 would show-something shared, but was that not a symptom of a satisfied sibling rather than a cause? Looking within the sibling himself seemed to be going closer to the real kernel of satisfaction. Again and again in the literature, different studies emphasized the need siblings had for information and inclusion in total family functioning. Therefore, a hypothesis and subsequently a series of questions, dealt with the frequency of involvement in decision making and where input would be most important for the subject. A Likert scale for answering both of these was introduced in the final draft and proved extremely useful for identifying those decisions that meant the most to the subjects. The second hypothesis was tested on an ordinal scale where subjects could rank the people who gave them the most information or taught them the most about their handicapped brother or sister. They wrote the #1, #2, or #3 next to the corresponding indicator. The part of the measurement device dealing with the third hypothesis left the most room for error. The researcher assumed that if the respondent expressed knowledge of the handicap and the name of it, then they were informed. Problems with this particular hypothesis will be covered in the Results section.
34 The probe questions asked at the end of the interview were designed to elicit new and personal information and explore areas unknown by the researcher. They were all open ended so the subject could just talk and also expand and clarify points about what it was like growing up with a special sibling and what effect it had on him now. As was mentioned in the literature review, not many studies had been undertaken with adult siblings and this researcher wanted to hear firsthand what the subjects had to say. At the suggestion of Dr. Graham Sterritt, a thesis committee member, a question about fantasies, dreams, and wishes was included. How siblings were a source of pride for the subjects was asked to draw out the positive points of living with a handicapped person. As a final question, when a sibling did have negative experiences, it was asked with whom and why did they occur. Preceding the interview, a consent fqrm was signed. Following the interview the Family Satisfaction Index was filled out and demographic information was requested concerning family size, ages of siblings, family income, and religious background (see Consent Form, Appendix D)
35 Sample Selection The subjects for the study had to fit a narrow -spectrum of the general population and had to meet specific requirements. They had to be teenagers or adults who had one or more developmentally disabled siblings naturally or through adoption. They need not always have resided with.the disabled sibling (in some cases the handicapped one may have been institutionalized at an early age). But there had to be a sibling relationship and one of them had to be developmentally disabled. A purposive sampling of siblings of Saturday Club members was initially attempted by sending a cover letter home with members (see Appendix B), but it garnered little response from parents. Direct calling using a roster of names from Saturday Club was tried proved more effective in gathering names of potential subjects. The researcher called parents, introduced herself as a Saturday Club staff member, and explained the nature of the study being conducted under the auspices of the University of Colorado at Denver. Then she asked if there were any siblings of the clients that possibly would be willing to participate in the study. Names and
36 phone numbers of siblings were then given to the researcher to call. Approximately 30 families were contacted and from those families, 20 people acceded to be ,,,::::.:.: interviewed. They ranged in age from 14 to 39 and were both male and female. Interviews were conducted in res-taurants, homes, and workplaces. They ranged in length from ten minutes to almost two hours. Non-respondents either lived out of town or were not interested. The interviewer personally knew and worked with all the handicapped siblings of the subjects interviewed except one. She believed that this familiarity would ease some subjects' discomfort concerning talking about their mentally retarded siblings. There were several reasons why the researcher felt subjects would be cooperative: 1. subject matter of the interview was direct and extremeiy relevant to the subject's experience. 2. Guarantee of anonymity for the subject. 3. The survey was probably unlike any other in which the subject would have participated. 4. Small chance that the subject would fear giving a wrong answer since handicaps vary so widely. 5. Prior research showed little attention given to -siblings.and subject would likely have something to say.
6. Ultimately the results could be beneficial if not to the subjects, then to other families with mentally handicapped children. 7. Summaries of findings would be distributed to all cooperating subjects. Pilot Study 37 Three of the first subjects to volunteer were used as a mini-sample designed to identify and correct instrument flaws. The interviewer had made an effort to use other people as pretests and not "waste" the real subjects, but the questionsonly to those who had developmentally disabled siblings and consequently other attempts to question people not in that situation were not helpful. Some of the weak areas identified were the following: 1. Lack of scaled answers for questions did not allow coding. 2. Too many peripherai questions that, although did not directly relate to hypotheses and .made interview potentially over-long. 3. Operational measure for determining healthy child-bearing capability of subjects was invalid. and therefore often misconstrued.
38 4. Too much interviewer variation in asking questions because they were not lucid enough and had to be reworded often. 5. No clear means of measuring the dependent On the strong side the subjects' understanding of question content was high because they were familiar with the topic and, interestingly, none of them had ever been specifically interviewed about their handicapped sibling before. Data Analysis All statistical inferences were made using the chisquare cx2>. Ordinal data were collected from questions testing the three hypotheses so manipulations were ducted using those answers. The open ended answers were easily converted to frequencies and percentages to communicate results.
CHAPTER IV RESULTS: CONSEQUENCES OF INQUIRY The data analysis tested the relationships between all three independent variables and the dependent variables using the chi square .05 Hypothesis 2: Ranking parents as the primary source of information about the developmentally disabled
40 sibling will correlate positively with high levels of family satisfaction. 2 X (1, N = 20) = .65 E > .OS Hypothesis : Knowledge of the origin, severity, and prognosis of the developmentally disabled sibling will be positively correlated with high levels of family satisfaction. X (1, N = 20) = .41 E > .OS An examination of the instrument used to gather data revealed several potential souces of error. 1. The question "how important would your decision be in making the following decisions?" had a wording error. The first world "decision" should have been "opinion" and was often verbally changed to "input" for clarification when administered. 2. There was some confusion about whether the above question meant actual input or preferred amount of input and was answered from both perspectives. 3. The indicator for ranking information providers was the clearest and least confounding. It was also much closer to being statistically significant than either of the other scores. 4. The subjects had difficulty in relating the full nature of the sibling's impairment and could' likely have given wrong answers.
41 5. Since most of the people had their own families and no longer lived at home, it is unclear how relevant any score is to their feelings about how satisfied they were .growing up with a developmentally disabled sibling. The researcher prefaced the family satisfaction index test with the statement, "Even though you have your own family now, and no longer live with your parents, please include how you feel about all your family in general." There is a chance that certain questions, because of their ambiguity and misinterpretation, .have rendered the findings unreliable. One cannot be sure that the subjects were understanding what they were supposed to answer interms of decision making and could have made actual mistakes on their answers about origin and knowledge of the handicap. The question of validity may apply to the answers on decision making if they reflect preferred rather than actual input in which case what was set out to be measured was not being measured at all. There were no statistically significant relationships foundi but, the independent variables did yield much information which was corroborated by some of the open ended questions. The subjects exhibited much concern about the kinds of decisions in which they wanted to be included even though 50% of them were "rarely" involved in decision making (see Tables 1 and 2).
42 Table 1. Freguency of Sibling Involvement in Decision Making Expressed Involvement Very often Often, Sometimes Rarely Never Table 2. Frequency 5% 5% 35% 50% 5% Decisions in Which Siblings Want to Contribute Potential Decision Future care Living arrangement Employment/working situation Schooling Discipline Choice of friends Spending money No response Siblings Desiring Input 75% 60% 35% 25% 20% 5% 5% 5%
The open-ended responses were similar but expres sively different. Subjects used the terms "guardian," "long range plans," "moving away," and "impact of 43 parent's death" to indicate concern about future care. Health and medical .care, transportation, clothing worn, diet, and parental burden were potential decision involvement areas not on the questionnaire. Family members were the foremost source of information about the mentally handicapped sibling 90% of the time with mothers and the developmentally disabled sibling providing the majority of the facts about the condition. Fathers were low on the-scale in te-rms of communicating about the mentally handicapped sibling (see Table 3). Table 3. Foremost Information Source for Intact Sibling About the Handicap Source Mother Developmentally disabled sibling Somebody else Doctors Father Other family members Frequency Used 60% 20% 5% 5% 5% 5%
44 However, judging from the expressed knowledge about the handicap, one wonders what quality of information was provided. Unless a readily identifiable handicap existed, the responses received for origin and identification were very nebulous. Some responses received for the question, "Do you know how your brother/sister became handicapped?" were: Lack of oxygen at birth Not sure Genetic/genetic fluke Difficult birth Illness in third year Born.that way Head injury Fell down and turned blue The only subjects who had a descriptive name for their sibling's handicap were those who had a brother or sister with Down's Syndrome! All the subjects had firm ideas about the kinds of limitations placed on the sibling and articulated them well. Those who had children said "no" their childbearing was intact. Those who had no children were less certain but doubted they were harmed. One-subject who had two mentally retarded brothers had a vasectomy anyway (see Table 4).
Table 4. Knowledge of. Handicap by Intact Sibling Expressed Knowledge Origin Limitations to disabled sibling Effect on self concerning ability to bear healthy children 45 Frequency Known 85% 100% 50% no effect 50% don't know The remaining survey questions did not test hypotheses but were designed to identify other variables related to growing up with a mentally handicapped sibling. rt was hoped that additional probe questions would either lend credence to existing theory or, perhaps, describe some newer avenue for research. One question asked if anything in particular made the subject proud of his handicapped sibling. This is a technique used by social workers with parents to allow them to focus on the positive aspects of raising a disabled child, which was the reason for its inclusion here. Answers fell into four basic realms which this author categorized as the following: intellectual, social, recreational, and lifestyle.
The most often mentioned specific source of pride cited by 25% of the respondents was the Special Olympics. This author conjectured that the nature 46 of the SJ?ecial Olympics which involves more physical openness (touching, hugging, etc.), more acceptance of everybody, and less judgmental attitudes could enhance the experience for them and lessen anxiety they may often feel when out in public with their sibling. Additionally, it is the one activity in which the disabled sibling can reaily shine and maybe excel. As one subject remarked, she "always feels comfortable" at the Special Olympics. It was revelatory to this researcher, who, as a seven-year volunteer, never realized how much satisfaction the families themselves derived from the Special Olympics. Even the most negative respondent had something which gave him pride in his sibling. Seventy percent were amazed at their sibling's ability to get through life and cope well. They used the descriptors "keeps going," "knows every agency," and others in the lifestyle. (see Table 5). About 75% of those interviewed had bad experiences with or because of their sibling and it occuted most often with strangers even though there were more varied
Table 5. Sources of Pride for the Intact Sibling Aspects Mentioned Basic Living Skills always trying determination tenacity courage good employee self-confident good quality of life Intellectual accomplishments graduation from high school achievements working close to level of ability pretty smart does well in school reasoning power reading ability Recreational/cultural interests artistic ability knowledge of sports Special Olympics Social skills compassion strong heart gregariousness way he treats other people emotional expressiveness 47 Siblings Responding 70% 50% 35% 20%
48 problems with family members. The types of experiences mentioned by respondents concerning families are the following: 1. mentally rearded sibling used as scapegoat to blame when something went wrong, 2. meddling relatives who wanted mother to "put awayn child because of the expense and for the other family members, 3. father's unkindness tp the son, 4. stepfather's unkindness to the handicapped daughter, 5. serious conflict/argument with the handicapped sibling. 6. handicapped sibling's fits of rage in front of grandparents. Those that occured with friends were the following: 1. school kids making fun of subject because of his sibling, 2. school kids making fun of disabled one and subject having to defend him, 3. rejection of subject by high school friends who did not want to come over because of handicapped sibling.
49 Stranger's actions which resulted in negative feelings were: 1. insensitive remarks made in front of sibling and subject, 2. bad treatment of sibling by some people in general, 3. ignorant sexual remarks about subject's brother. Other experiences which the subject harked back to were those from childhood and what it was like g-rowing up with a developmentally disabled sibling. Some responses are obviously negative feelings but others exhibit surprising character growth and adjustment to a probable difficult situation. Even though they are_ adults responding about feelings they had when they were young, they describe a tough eloquently. The ensuing remarks are verbatim from the interview: thrilled to have a baby sister, spent hours with her, loved caring for her, didn't see that she was getting more attention from parents--positive for me. (from one of seven children) didn't know anything was wrong until friends brought it to my attention, thought it was a speech impediment, didn't realize it was teens and twenties. (from an aircraft maintenance analyst) was always concerned with his safety, my job to look after him, gave me coionaries, bothered me when I was a lot parents would say he doesn't know right from wrong but I knew he did. (from one of two adopted. children)
nice having a brother with a driver's license (from a pregnant mother with two children) embarrassed, ashamed growing up when going out; having friends over. (from a sibling with two mentally retarded brothers) didn't think about it, hardly ever around the house, running around. (from one of eight children) so more responsibility on all kids, more for to do because a handicapped child requires more attention from everyone, in our f*mily that's what wanted to do, time and sacrifices because he required things that couldn't be put aside--not seen as a pariah by my friends, comfortable within ourselves, friends might have had a problem communicating with him but all my high school friends still ask about him. (from a writer) early that when people make comments, look them in the eye and answer back, not a hidden. thing, liked having a baby brother, didn 1 t have to fight the battles that mom fought. (from a mother with three children, two of them adopted) might have been a problem if he was more our age, had friends over, took him places, more mature growing up, knew more of what life would be like, half my babysitting clientele was handicapped, more serious, see things not as others always do. (from a nurse) set temper of family because he had special needs in schooling and medical care, enormous amount of money, impact on rest of family, first twelve o.r thirteen years folks had enough money but siphoned off for social apartness of being differetit, people staring. (from a former publisher) relied on each other because we were isolated, mutual unhappiness, everyone went through best buddy period with as one grew out_ of his capacity the next one came along, we were compatriots until we were seventeen, mother didn't encourage socializing, he was my only pal in elementary school. (from a journeyman carpenter>
helped living in Park Hill area community, ability to deal with differences in people, actively seek friends with varied backgrounds now. (from an attorney> 51 The effect a developmentally disabled -sibling has on an adult. brother or sister relates to ultimate future care responsibilities and increases his or her compassion and understanding towarQs other people with or without handicaps. The terms more patient, loving, sincere, and sensitive were mentioned as personality traits learned through life with a special sibling. But for those whose parents still cared for the sibling at home, moves toward independence and group home living arrangements were questions that needed to be resolved. Most fantasies revolved around the subject's wishes for their sibling's normality. Others included better language for expression, self-sufficiency, hopes, happiness, and success. One subject grew up at the time Dale Evans' mentally retarded child died and she remembered checking on her sister every night being afraid the family would somehow lose her. Another recalled a recurring dream of her brother being in danger from a big machine from which she would have to protect him. Fewer than half admitted keeping feelings hidden from their parents. Those that did felt that parents
denied discussions about feelings, i.e., anger, assertion, or were too overprotective and not willing to allow the sibling independence. 52
CHAPTER V DISCUSSION There are likely factors other than the variables under question that give a person family satisfaction. This study did not isolate elements that directly correlated with high scores of family satisfaction but it did provide a glimpse into a private segment of the subject's life, his relationship with a special sibling. The strengths of this research lie in the. richness of personal information subjects so generously supplied. The author's familiarity with the parents and the developmentally disabled siblings of the subjects interviewed provided a unique foundation for optimal exchanges of information. None of the hypotheses tested were statistically significant, but, indicators reflecting certain ables provided potentially useful information for those studying family systems. Involvement in decision making may be motivated by more than just a positive attitude towards the developmentally disabled sibling and the family, as was speculated the authora High. involvement may occur because
54 of disagreement or worry over other decisions made in the past or when one sibling is the sole guardian of the other one. In these cases less family satisfaction and increased stress may take place. Low involvement may indicate that the sibling either is spared the burden of deciding on immediate primary care options for the disabled one, or, just avoids entering into potential conflicts with other decision Decision making as a factor in family adjustment to a mentally handicapped sibling is possibly related to locus of control, which has been found to be an element in coping. Delineating in specific terms an origin and prognosis of a mental handicap was difficult for many of the subjects. It is not surprising that knowledge of a handicap was often vague. Out of 250 known causes of mental retardation, 75% of diagnosed disability is unknown (Evans, 1982). However, 100% of the subjects knew what kind of emotional, physical, and intellectual limitations were placed on their brothers and sisters. This fact is a timely reminder to those in the mental health profession that the useful part of labeling in a diagnosis is to provide proper treatment and services. The factual cases of mentally handicapped people going beyond professional expectations are documented and point to other environmental influences that affect total growth.
55 Mothers communicated more with their children about having a "different" sibling. Subjects also expressed learning quite a bit about their disabled sibling from the sibling himself. However, the results point to fathers as either: not having knowledge of the developmental disability to impart to their intact children, or, not having the willingness to do so. Comparisons with iritact families to see if fatherly reticence is predictable pattern is suggested. The study hints that fathers may have a more difficult time coping than other family members. In retrospect, it would have been to directly ask for specifics concerning how the siblings and their families coped. Because they were exposed to a host of service agency/parent interactions, they would likely have meaningful criticism about these agencies and their effectiveness in helping Perceptions from the healthy siblings could really prove a valuable tool for evaluating service provision. Disagreement about future care can be a source of discord for some families and subjects sometimes avoided voicing their opinion. Facilitating communication may be an issue the family systems therapists may want to address to ease people into talking about this potentially volatile subject. Future care options are another
56 area where perceptions of the intact siblings could prove fruitful for evaluation and possible planning. Siblings, in general, are not as emotionally and intensely involved with raising the handicapped sibling as the parents, which is why their opinion about services could be not only insightful, but more objective. This researcher found no indication of more dissatisfaction in two sibling .families, choosing occupations in the helping services or feeling overburdened with caretaking responsibilities from any of the subjects. If the ability to cope is contingent upon meeting the needs and feelings of the family (Meyerson, 1983), then family therapists must look for fostering the individual's self-satisfaction as well as that of the family.
References Adams, v. (1981, June). love/hate dialectic. The siblihg bond: a lifelong Psychology Today, p. 32. Bank, s. P., & Kahn, M. D. (1982). The sibling bond. New York: Basic Books, Inc. Crnic, K., Friedrich, W. N., & Greenberg, M. T. (1983, September). Adaptation of families with mentally retarded children: A model of stress, coping, and family ecology. American Journal of Mental Deficiency, 88(2). Fischer, J., & Roberts, s. c. (1983). The effects of the mentally retarded child on his siblings. Education, 103 (4), p. 399. Garbano, J. (1982). Children and families in the social environment. New York: Aldine Publishing. Grossman, F. (1972). Brothers and sisters of retarded children. Syracuse: Syracuse University Press. Hollingsworth, J. s. (1978). Mental retardation, cerebral palsy, and epilepsy in Alabama: A sociological analysis. Alabama: University of Alabama. Horowitz, R. I. (1982, May). Mental retardation and family functioning: An exploratory tricultural investigation from .a phenomenological perspective. Dissertation Abstracts International, 42(11-B), 4579. Kaplan, F. (1969). Siblings of the retarded. InS. B. Sarason & J. Doris, Psychological problems in mental deficiency. New Yotk: Harper & Row. Lipner, c. B. (1982, September). Perception of self and other: Siblings of retarded and normal children. Dissertation Abstracts International, 42 (11-B), 4579. r-teyers, R. (1978_). Like normal people. New York: McGraw-Hill. Meyerson, R. c. (1983). Family and parent group therapy, M. Seligman (Ed.). New York: Grune & Stratton, pp. 285-307.
Siegfried, P., Duffy, T., & Brady, E. Meeting with brothers and sisters of 59 Murphy, A., (1976). children 20-23. with Down's Syndrome. Children Today, Pearlman, L., & Scott, K. A. (1981). Raisinq the handicapped child. Englewood Cliffs, NJ: Prentice-Hall. President's Committee on Mental Retardation. (1976). The mentally retarded citizen and the law. New York: The Free Press. SanMartino, M., & Newman, M. B. (1974). Siblings of retarded children: A population at risk. Child Psychiatry and Human Development, ,!(3), pp. 168-177. Sarason, s. B.,.& Doris, J. (1979). Educational handicap, public policy and sOcial history. New York: The Free Press. Schreiber, M., & Feeley, M. (1965). A guided group experience. Children, 12, 221-225. Seligman, M. (1983). The family with a handicapped child: Understanding and treatment. New York: Grune & Stratton. Travis, G. (1976). Chronic illness in Stanford: Stanford University Press. Wiegernik, R., & Pelosi, J. (1979). Developmental disabilities: The movement. Baltimore: P. H. Brooks. Wikler, L., wasow, M., & Hatfield, E. July/August). Seeking strengths in developmentally disabled children. pp. 313-315. (1983, families of Social Work,
APPENDIX A INTERVIEW SCHEDULE
61 Thank you for _taking part in this study. Since you will remain anonymous, no name is needed.However, the fol-. information is crucial to the study. Please fill in the information and then we will begin. Thanks again. age: __________ __ Your. sex: M F Age of developmentally disabled sibling:____ Sex: M F Besides the two of you how many other children are in the family? Do you know their ages? What is your religious background? Where did your parents go to high school? Last year of school completed by parents (please circle category and specify) Grade school --------------------------High College 1 2 3 4 GraduatePost graduate school ___________ Family income 0 10,000 10,000-15,000 20,000 ____________ 20,000 25,000 ____________ 25,000 30,000 ____________ 30,000 35,000_______ over 35,000 __________________
Interview Schedule 1. There are many decisions that must be made about a child that is developmentally disabled. Please tell me the most important decision that had to be made about your brother/sister so far. 2. Who makes most of the decisions about your brother/sister? 3. How often are you involved in making decisions about your brother/sister? Very often ___ Often Somet."":'i_m_e_s __ Rarely ____ Never ____ 62 4. If you were involved in decision making, what kinds of things would you want to be consulted about?
63 5. How important would your decision be in making the following decisions? Deciding where your brother/sister goes to school? Where your brother/ sister is going to work? Where he/she will live? What friends he/she chooses? How he/she spends money? Who will care for him/her in the future? How to discipline him/her? +-1 = ctl +-1 1-1 :>.O 1-1 p. QJ e >H +-1 ctl +-1 1-1 0 H +-1 +-1 = ctl ctl +-1 +-1 1-1 1-1 0 0 +-1 p. p. s :>.13 c:: o 1-1 r-1 0 c:: = QJ = ::J >::J Anything else, how important on the above scale?
64 6. Mbst families with a developmentally disabled or mentally handicapped person deal with many different such as therapists, counselors, rehabilitation specialists, teachers, doctors, and 6thers. They also hear many things from grandparents, parents, others in a similar situation and various family members. From the following list, please rank the three groups or individuals who have taught you the most or given you the most information about your brother/sister. Use #1 for the category that you learned the most from followed by #2 and #3. Occupational therapists Speech therapists Rehabilitation counselors Doctors Mother Father Your mentally handicapped brother or sister Your friends Your other brothers and sisters Other family members Somebody else 7. Do you know what kind of handicap brother/sister has? Please me the name of it? 8. Do you know how your brother/sister became .handicapped? 9. Do you know what limitations your brother/sister has because of his/her disability? 10. Do you know if your ability to have normal children is affected in any way? 11. How does having a handicapped brother/sister affect you now in your life?
65 12. (If an adult) How did having a handicapped brother/sister affect you while you were growing up? .13. Has anything in particular made you pr9ud of your brother/sister? 14. Did you ever have any fantasies, dreams, or wishes about your brother/sister? 15. Do you keep any feelings about your brother/sister hidden from your 16. Did you ever have any bad experiences with your brother/sister and any other family members? Strangers: ________________________________________ __ Friends: --------------------------------------------
APPENDIX B COVER LETTER
COLLEGE OF LIBERAL ARTS AND SCIENCES Division of Arts and Humanities 1100 Fourteenth Street Denver, Colorado 80202 629-2730 UNIVERSITY OF COLORADO AT DENVER December 12, 1984 Dear Parents: 67 Communication and English Fine Arts French German Philosophy Spanish I am a graduate student in Communication at the University of Colorado at Denver. I have also been both a volunteer and a parttime employee with the Denver Board for the Developmentally Disabled for the past six years. My interest in writing a thesis about the mentally handicapped and their families evolved through working with Saturday Club. I have read extensively about this subject and have chosen Siblings with a Developmentally Disabled Brother or Sister as my research topic. Much of the literature about the families with a mentally retarded child point to the negative aspects: divorce, depression, etc., and neglect the strengths that can develop in these special families. It is my premise and the one I will be collecting information about that there are positive strength building characteristics that can emerge from these families and it is not only a rare few that expe r_;i.ence this. Throu-gh personal interviews with both teenage and adult normal brothers and sisters, I hope to gather some clues that prove useful to professionals who are working at helping families deal with their situation. Each interview will last approximately one-half hour and will be conducted personally by me. All participants are guaranteed complete anonymity and all findings and recommendations will be discussed at a seminar to which you are all cordially invited. If your family is interested in participating, please contact: Susan Bavaria at 355-4543, or 297-1300, ext6720 Thank you and I hope to hear from you soon. Please reply by November 9th. I will be arranging the interview schedules the following two weeks. Sincerely, Susan Bavaria
APPENDIX C INDEX OF FAMILY RELATIONS
Index of Family Relations by Walter w. Hudson 69 This questionnaire is l=Rarely or none of the time designed to measure the way you feel about your family 2=A little of the time as a whole. It is not a test so there are no right 3=Some of the time or wrong answers. Answer each item as carefully and 4=A good part of the time accurately as you can by placing a number beside S=Most or all of the time each one as follows: 1. The members of my family really care about each other. 2. I think my family is terrific. 3. My family gets on my nerves. 4. I really enjoy my family. 5. I can really depend on my family. 6. I really do not care to be around my family. 7. I wish I was not a part of this family. B. I get along well with my family. 9. Members of my family argue too much. 10. There is no sense of closeness in my family. 11. I feel like a stranger in my family. 12. My family does not understand me. 13. There is too much hatred in my family. 1. 2. 3. 4. s. 6. 7. 8. 9. 10. 11. 12. 13.
14. Members of my family are really good to one another. 15. My family is well respected by those who know us. 16. There seems to be a lot of friction in my family. 17. There is a lot of love in my family. 18. Members of my family get along well together. 19. Life in my family is generally unpleasant. 20. My family is a great joy to me. 21. I feel proud of my family. 22. Other families seem to get along better than ours. 23. My family is a real source of comfort to me. 24. I feel left out of my family. 25. My family is an unhappy one. 70 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25.
SCORING KEY -25 A B D I. 2. 3. 4. 5. 6. 7. 8. 9. 10. II. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. A ReverSe Reverse Reverse Reverse Reverse Reverse Reverse Reverse Reverse Re,erse Reverse Reverse B TOTAL SCORE ... .. SCORING THE INDEX Fold the facing page forward along the dotted line to compare your answers with the Scoring Key. First. transfer your answers into the spaces in Column A for items 3, 6. i, 9, etc. Next, in Column B. reverse the numerical value of your answers for items I, 2, 4, 5, etc. For example: In Column B, an answer of I earns 5 points 2 earns 4 points 3 earns 3 points 4 earns 2 points ,.,. earns point To find your final score add together the total points in Column A and the total points in Column B. From this sum subtract 25 points. The result is your final score. INTERPRETING YOUR SCORE Low ScortrS (0-29)-Low scorers are reporting a high level of family satisfaction. If you scored here, you are saying that. in general. you are happy to be a member of your familv. and that your family serves as a source of happiness for you. When your own individual day-to-day concerns build, you can probably turn to one or more of your family for comfort and support over your own rougli periods. Though, as in any social relationship. your family has its difficulties, the members of your famih get along well together and exhibit collective as well as individual high self-esteem. High Scorers (J0-100}The higher ,our score on this index, the more dissatisfaction with your family you are reporting. Of scores between 30 and 40 must be interpreted with caution. Momentary stresses may be pres ent in your family which make things seem more unpleasant now than thev usually are. But if you scored much higher than 40 0 r feel that your score does reflect the general state of family life, you are in need of some serious reflection about the way your family works and lives together. It is likely that such family unhappiness has made its way into the individ ual lives of each family member. In addition. members have likely lost a source of suppon which is often needed as personal stresses increase. Perhaps this knowledge can lead to some open discussions among your family members and a renewal of the warmth that was once there. If your family problems make such communication difficult, however, professional counseling can help rebuild those bridges to one another. 71
72 ABOUT THE INDEX The English poet John Donne wrote, "No man is an island, entire of itself; every man is a piece of the continent, a part of the main." For many of us, that continent is our family, those people with we share ourselves each day. The family can be a source 6f great positive energy, encouraging us to try new things and supporting us when our attempts fall short. But for some, the family situation is a of stress and frustration, pulling energy away from us than feeding our.needs. These needs that are not met belong to all the family members, for no one is immune to the effects of a stressful family life. Children may show it through physical complaints or school problems, while mom and dad show the pressure in marital conflicts or behaviors which remove them from family contact, such as drinking oi an endless list of things to do-away home. Both the individual family members and intertwined relationships rise or fall on the health of the family unit. For more than thirty years, family researchers have been concerned. with the evaluation of the family process. As with any other complex process, have been made to speeify what it is in family relationships that can cause problems. Some of the other tests in this chapter are the results of that work, such as marital roles and sexual compatibility, but Dr.walter Hudson saw the need for a global measure of family satisfactionan index that went directly to the question, "How do you feel about being a member of this family?" In 1977, he developed the Index of Family Relations as part of his series of tests for use in psychological and social work treatment. We have included it here because of its straightforward way of evaluating family satisfaction. From: (New York: R. Aero & E. Weiner (1981), The mind test William Morrow & Company)
APPENDIX D CONSENT FORM
CONSENT FORM Dear Subjects: Please be assured that your rights interviewer and that the following for you to know. If you are still ipating sign at the. bottom. your parent must sign also. Thank 74 are respected by the points are important interested in If you are under 18, you. 1. The interviewer will ask you questions about your life growing up with a developmentally disabled brother or sister. The interview will last approximately 20 to 30 minutes. 2. some 6f your memories may be sad. It is not the intention of the interviewer to cause you any discomfort or sorrow. 3. Any questions you may have concerning the research may be asked at any time during, before, or after the interview. 4. You are free not to cooperate and may refuse to answer any questions. 5. Any further questions you have about yotir rights as a subject may be directed to: Human Rights Research Committee Graduate School University of Colorado at Denver Denver, Colorado 80202 Signature of Subject --------------------------------Signature of Parent ________________________________ __ Thank you. Sincerely,