Pediatric Annals

Parenting the Handicapped Child

Jane W Kessler, PhD

Abstract

The author outlines the pediatrician's role in helping the parents of the mentally retarded, the chronically ill child, the autistic or dyslexic, and others with a developmental disability.

Abstract

The author outlines the pediatrician's role in helping the parents of the mentally retarded, the chronically ill child, the autistic or dyslexic, and others with a developmental disability.

The term "handicapped child" is a broad one covering a wide range of mild to severe handicaps with varied causes and manifestations. In order to narrow the subject, the following discussion focuses on children assumed to have conditions that are inherent to their organic constitution and will have some permanent effect in terms of limitations, visible differences, or need for continuing treatment. This includes the child with chronic physical disease or disability, the mentally retarded child, and the child with one of the developmental disabilities, such as autism, dyslexia, cerebral palsy, or epilepsy. It does not include emotionally disturbed children, many of the children classified as having learning disability or as being hyperactive, or children with acute physical illness. The discussion is in three major sections: the diagnostic phase, adaptations in child rearing, and helping the handicapped adolescent.

A great deal has been written about parental reactions to the initial diagnosis. Most observers agree that the first reaction is one of shock. No one is prepared for having a handicapped child; everyone expects a normal, healthy baby. On first hearing the diagnosis, parents have a barrage of questions for the pediatrician. How do you know? Are you sure? What caused it? What should we do now? What will happen in the future? What else is wrong - or what is right - about this baby? And all these questions pour out in a mixture of tears, recriminations, and anguish that makes the answers - if there are any - practically unintelligible.

It is difficult for the pediatrician to break the news, and it is understandable that he will delay the task as long as possible. Little attention has been given to the reactions of the professional person in dealing with the handicapped. The nonspecialist in the field is almost as surprised as the parents and shares the bewilderment. The pediatrician, particularly, is accustomed to preventing some problems and curing others. In encountering an incurable handicap, the pediatrician has to deal with his own feelings before helping the parents with theirs. Of course, these reactions will vary with the nature of the handicap, but they are particularly intense when mental retardation is involved. The pediatrician may feel guilty that the infant survived. In the case of an infant with Down's syndrome, for instance, he may regret that amniocentesis was not done during the pregnancy. The deformed infant represents a kind of mistake, and there is an initial impulse to try to erase the error. Many of the decisions that are made soon after birth are essentially value decisions rather than strictly medical ones. Is the infant to be treated in accord with best known psychologic and medical procedures for a normal infant? Is it worth the cost and energy required to ensure the infant's physical and mental health? It is imperative that these questions be resolved by the professional before he faces the parents.

There are still obstetricians and pediatricians who would resolve the problem by institutionalizing the handicapped infant, but probably most believe that the child is best served by being sent home and that the immediate task is to help the parents come to terms with the problem. After the shock, a common reaction is one of profound depression, described by Somit and Stark1 as a kind of mourning process for the expected normal baby. This is often mixed with a feeling of disbelief or denial, used to ward off the depression. During this time, the parents feel alienated from the baby, and giving infant care is a painful process. Drotar et al.2 quote the mother of an infant with extrophy of the bladder as saying, "It was just as if it were someone else's baby. I couldn't hold him." The depression is more than mourning of the lost "normal" baby; there is anger and resentment and ambivalence. Like the pediatrician, the parents wonder if the baby would not be better off somewhere else - or even dead. The death wishes may be conscious, they may appear as excessive solicitude and anxiety, or they may be inferred from expressions of irrational guilt.

During this period of anxious depression, there is a danger of parental apathy. Having accepted the diagnosis and reassurance as to their lack of responsibility, the parents may feel that they have no role to play in the upbringing of the child. They may conclude that nothing one does or does not do makes any difference; more likely, they cast around to find "the expert" who will direct them in every detail.

The handicapped infant is particularly vulnerable to his environment and often needs extra stimulation to compensate for a missing sense (e.g., the congenitally blind child), a lack of initiative (e.g., the retarded infant), or a lack of responsiveness (e.g., the autistic child). It is doubly difficult for the parents, not only because of their depression but also because the handicapped infant does not give them the same response as a normal one.

In this period of crisis, the pediatrician has a vital support function. First, he must be available to the parents and indicate a positive interest in their baby and thus serve as a model. Second, although the pediatrician sympathizes with the parents in their distress, he should identify the normal and special needs of the baby with as much specificity as possible. Third, the pediatrician must stay in close enough touch to provide the parents with the positive reinforcement they probably need to maintain their efforts. It is particularly important to include the father, so that he can not only be of direct service to the baby but also see the mother through her ups and downs without feeling personally guilty or resentful of what the baby is "doing to her." Finally, the pediatrician may want to become more expert in the particular handicap by seeking counsel from the relevant community resource. Many of these specialized agencies offer parent counseling or infant stimulation programs that may well be useful to the parents when they have overcome their initial shock and depression. However, there is some tendency for workers expert in the care of a particular handicap to view the mother as ineffectual and to ask that she abrogate her close contact with the young child for the sake of care that will make the child more independent. Here the pediatrician's intimate knowledge of normal developmental needs can act as a counterbalance against the superspecialist.

So far, this discussion has centered around diagnosis in infancy and the problems of establishing a mother-infant bond.3 The problems are different when the condition is diagnosed at an older age. It is common for parents and nonmedical professional workers to complain that the pediatrician failed to make the diagnosis. The parents report that they were viewed as overanxious and reassured that their child would "grow out of it." After diagnosis, they look back and feel guilty about what they did or did not do and blame the pediatrician for these imagined sins. This attitude is somewhat less if the condition is a physical one, such as muscular dystrophy or convulsive disorder, but it is often very marked in parents of retarded or autistic children.4 It is hard for them to appreciate the dilemma of the physician, who sees many children who do indeed outgrow their early difficulties and who is therefore banking on probabilities in reassuring the parents. Their child is the exception who proves the rule.

It is the wise physician, however, who refers for consultation when in doubt. In the behavioral field, psychologists and child psychiatrists are cautious about labeling children and try instead to describe current functioning and to outline a plan of intervention. Even though they may administer an intelligence test, this will be used as only a part of the treatment plan and a baseline for later comparisons. The days of identifying "the IQ" and sitting back to let nature take its course are - or should be - over. Federal law 94-142 mandates free and appropriate educational services, to start as early as three years of age, for all handicapped children on the theory that the earlier the intervention, the greater the likelihood of effecting permanent change or at least of preventing secondary complications. Emphasis is placed on multifactorial assessment, using so-called criterion-referenced assessment measures as opposed to normreferenced tests. The criteria used for assessment are simply skills and behavior expected of normal children, and the child is evaluated in terms of how close he comes to normal expectations. The data are not yet in to prove how much of the new optimism is justified, but the attitude of expecting results from active intervention is a healthy one and should reassure pediatricians that they are not consigning the young child to a self-fulfilling prophecy of failure when the child starts a program identified for "special children."

Physicians, as well as others, have problems with the ambiguity of early diagnostic studies and the great range of individual differences manifested by children with the same label. It is hard for a person trained in the disease model to appreciate the importance of environmental factors. Physicians are likely to think of the extreme forms and to miss the borderline cases. For instance, although all Prader-Willi syndrome children have an inordinate appetite, not all are conspicuously obese: it depends on how the parents have handled the situation. The first sign of mental retardation may be language delay in a child whose motor developmental landmarks were normal. Autistic children change as they grow older, and they do not continue to show the classic signs of avoidance of eye contact or failure of imitation. Besides the fact of individual variations, it is well known that experts differ on how they use diagnostic terms. It is also possible for a child to be multiply handicapped. This, of course, means that it is difficult to prognosticate for the parents of children whose handicaps are manifest mainly in the cognitive or behavioral areas. For these children, parents and professional workers must concentrate on the present and the near future and tolerate many unknowns about the past and the far future.

Assuming that the parents have moved from the initial stages of shock, denial, anger, and depression surrounding the diagnosis, we move into the adaptive phase and the special problems of bringing the handicapped child into adulthood. There are always questions about special therapies. In general terms, treatment can be classified in five major categories: (1) treatment that is necessary and lifesaving (for instance, insulin in the case of diabetes); (2) treatment that is ameliorative and avoids secondary complications (for instance, surgery in the case of contractures); (3) treatment that is adaptive and facilitates optimum development (for instance, "total communication" speech therapy for young retarded children or drug therapy for hyperactive children); (4) treatment that is unproven but potentially useful, such as diet therapy for hyperactive children; and (5) treatment that is controversial but probably harmless, such as megavitamin therapy for autistic children or the Doman-Delacoto regimen for retarded children.

Doubtless the parents will continue to seek cures in drugs, diets, exercises, and special education and therapies and will hear about possibilities with which the pediatrician is unfamiliar. The pediatrician's primary role is to protect the child from harm, physical or psychologic, by ensuring the necessary ameliorative and adaptive treatments and checking the risk factors in the unproven and controversial treatments. A secondary role is to help the parents be objective in evaluating the results. In an individual case, scientific objectivity may be sacrificed for the positive rewards of the parents' feeling that they are leaving no stone unturned. If the pediatrician can maintain his neutrality, he can better help weigh the benefits against the cost, not so much in dollars as in time and energy that may be draining the family.

Professional workers in the field of rehabilitation have long been aware of the importance of social and psychologic factors in the life adjustment of people with handicaps. Many times there is a circular action between the organic problem and the psychologic response: the handicapped person has some realistic basis for discouragement, but the resulting depression often increases his helplessness beyond the necessary point. In treating, teaching, or rearing handicapped children, one tries constantly to distinguish between the limitations imposed by the reality of the handicap and the functional overlay - often a very difficult task. It was once thought that each physical disability carried with it a particular psychology - mental and personality characteristics unique to the sensory, motor, or nervous system problem. This view is reflected in the classic work of Pintner, Eisenson, and Stanton5 in which the individual differences of each handicapped group are catalogued as if they were inherent in the disability. This contrasts with the later view expressed by Wright.6 She states as a basic principle that "somatic abnormality as a physical fact is not linked in a direct way to psychological behavior."

To analyze the impact of disability on a child, several factors must be considered: (1) age at onset, (2) resultant deprivation of experience, (3) organic effects on intelligence and personality (particularly in cases of central nervous system deficit), (4) parental attitudes, (5) traumatic effects, (6) effects of the prescribed treatments, and (7) the child's fantasies and self-concept. Here we shall concentrate on the crucial role of parental attitudes.

It is believed that, except in the case of the relatively rare, extreme forms of disability, the handicap per se has less influence than the parental attitudes to which the handicapped child is exposed.7"11 The child will regard his disability in much the same way as his parents do. By the process of identification, he incorporates their views of him and so develops a concept of himself. If they see him as helpless, his sense of helplessness leads to passive dependency. On the other hand, if they fail to recognize his limitations, the child will be equally unrealistic and constantly frustrated. The frequently seen patterns are oversolicitude, rejection, pressing for accomplishments beyond the child's abilities, and inconsistency. In summing up, Wright states that the attitudes of parents towards their disabled children tend to extremes, with overprotection occurring more frequently than overrejection.

In the G.A.P. report on The Joys and Sorrows of Parenthood,12 the authors discuss the problem of parental expectations. They remark that it is not easy to allow growth and independence when infantilization of the child seems, at short range, to be less hard on him and easier for the family. Whether the basic problem is paralysis from poliomyelitis, spastic paralysis, diabetes, or retardation, the parent has to decide when the child is ready for the next step, literally and figuratively. The tendency to think "not yet" is to be expected, and sometimes this is the right answer for the child. But from his perspective, the pediatrician can ask, "If not now, when?" For instance, a child may be so severely handicapped that he will never acquire the usual motor and mental signs of readiness to start toilet training. If this is the case, toilet training will take the form of a conditioning procedure,13 and the timing will depend more on the parents' readiness than on the child's readiness. As the child grows older, the pediatrician should look for evidence of gradual but constant change in the parents' expectations. From one year to the next, the parent should be allowing more freedom and responsibility in such matters as staying with a baby-sitter, playing outside alone, bathing, washing, dressing and choosing clothes, brushing teeth, sleeping away, and so on. Concurrently, the child should assume a helping role in the household, however minor the actual task may be as far as saving time for others.

This brings us to the touchy question of discipline for the handicapped child. As the child becomes more independent and autonomous, he is likely to become more obstreperous. Like all other children, the handicapped child goes through periods of negativism, demandingness, selfishness, teasing, destructiveness, lying, stealing, and shirking of responsibility - to mention only a few of the less endearing qualities of children! But do the parents follow the same disciplinary procedures of scolding, spanking, isolation, deprivation, or penalties that they would customarily employ with their normal children? In all probability, the parents are confused about what they should do with their handicapped child - confused by their feelings of sympathy for his frustrations with the handicap, confused by their uncertainties as to what the child can comprehend, and confused by their own ambivalence aroused by the tedium of dealing with a handicapped child day in and day out. Fearful of becoming too angry, they will overlook the "bad" behavior. However, another possible parental reaction is overstrictness in matters of manners and appearance, on the basis that a handicapped child must compensate by being overly clean and polite in order to gain acceptance.

The pediatrician or parent counselor can be very helpful in sorting out priorities and setting consistent limits. Often the parents will say, "There is nothing we can do or take away from him that makes any difference to him - he doesn't go anywhere or have any interests or friends anyhow." This should alert the pediatrician to the factor of boredom in the handicapped child's life. Children do engage in misbehavior at times to create excitement or to get attention, and it is prudent to be sure that the child's life has some novelty and that good behavior is appreciated before the bad behavior is dealt with.

As the handicapped child grows older and approaches adolescence, brothers and sisters become increasingly aware of different treatment and parents worry about "being fair." After an extensive investigation into the adjustment of siblings of retarded children, Grossman14 pointed out that retardation is not simply a defect that occurs to, or resides in, an individual but an event that includes and affects the whole family and that this is true for all families with a seriously handicapped member. She quoted statements from both siblings and their parents to the effect that talking about retardation is like talking about sex. Parents say they are ready to answer questions when asked, but it is clear that many questions never get asked. Siblings are not sure how they "should" feel and what their responsibility is, both in the present and in the future. Siblings, too, are host to all manner of reactions, but with no one to listen to them.

With the parents' permission, the pediatrician may seek opportunities to explain the nature of the child's handicap and provide sympathetic listening. The siblings are specifically unsure of what to tell their friends and desperately need opportunities to discuss the problems with someone outside the family. They do not know what to do when their handicapped brother or sister is stared at, teased, or picked on at school or in the neighborhood and are often afraid to confide in their parents because it will upset them further. One teenage boy described the terrible guilt he felt when his brother overheard him explaining to another boy that he had to help his brother dress because he was "retarded."15 Some of these issues beg for a family interview for resolution, and only the pediatrician may have the opportunity to see the need and make the arrangements. But it is very important for the pediatrician to have a positive, problem- solving attitude. Although it is inevitable that a handicapped child will put great strain on family relationships, there are potentially adaptive ways of coping and families can thrive nonetheless.

This is an important reminder, because many believe that a handicapped child should be placed away from home for the sake of the siblings. Current social trends militate against placement, but this does not mean that the family must be together at all times. There is an increasing number of special camping and recreational opportunities for handicapped persons that allow everyone to follow his own pursuits without permanent separation. The families should avoid an all-or-none position whereby the handicapped child either is away at an institution or "always goes where we go." "Mainstreaming" and "normalization" are currently in vogue, but catchwords should not be substituted for reasoned thinking. Professional workers, committed to increasing the opportunities for handicapped persons, can delude themselves as well as parents. The "right" answer is ultimately decided by the handicapped person himself in his feelings of security and worth fulness.

There is easy consensus on the importance of the handicapped child's self-concept. As was mentioned earlier, in part this is learned from the statements and identification models of parents and significant other persons, but the handicapped child also makes his own observations about himself in comparison with others and speculates about the past and future of his particular disability. He will have fantasies about its cause and fears of possible further damage. A research study that gives indirect evidence of this was carried out by Cruickshank.16 He administered a projective sentence-completion test to two groups of more than 200 adolescents each; one group was physically handicapped, and the other contained ? on handicapped adolescents from similar backgrounds. The handicapped group reported more fears and feelings of guilt than did the control group. One of the prominent symptoms among the handicapped adolescents was anxiety about attempting new experiences or facing new situations.

An 1 1-year-old girl, who had been seriously handicapped by amyotonia since birth, described her fears and questions about starting junior high school.

"I don't know how it is going to be in the new school and I am afraid. I guess this is normal but it is more for me because of my handicap. People say I am pestery and chicken. One of my friends, at least she used to be my friend, teased me about being a cry-baby. I don't know how I am going to get around. There is an elevator, but I don't know where it is. If I had a wheel chair it might be better. Then the kids would know to be careful and not to crowd me. It would be fun if it was an electric chair and the kids would like to see it. They might even be jealous. But then people would stare at me if I were in a wheel chair. They would think 1 couldn't walk and that I was really crippled.

"The kids will all be going places I can't go, you know, up to the shopping center. They all go there, I don't know what they do. I think it is really silly to just hang around like that. But I am always alone, I always have to come in late or leave early and they see my mother come to pick me up. My mother doesn't understand at all. I finally got her to let me have my hair cut in bangs, but they are wispy, like me. And I got some dresses which are not so babyish but I always have to be careful that my back support doesn't show. 1 guess it would scare the kids if they saw that. My mother doesn't know how important these things are, I suppose because she is pretty old. I would like to have someone to talk to, but they are always leaving me and going off to that shopping center. And I suppose they will be having boy friends and dates. Of course, 1 am not interested in anything like that, but I don't know if I can have babies."17

As the child grows older, it is important that the physician talk to him directly, explaining his disability with great care. The child must go through the same steps towards understanding his problems as his parents did. Although many parents can do much of the explaining, it usually needs the additional clarification and reinforcement of professional workers. This is true not only for the physically handicapped but also for the mentally handicapped. It is not easy to face the retarded adolescent with the diagnosis of his condition, but his difference is something he will have to identify to appreciate what it does not mean as well as what it does mean.

Handicapped adults repeatedly tell us about decisions that were made for them instead of with them. One blind young man cautioned well-meaning professional workers to "give handicapped people a lot of rope to play with so that they can go ahead and do it, instead of legislating what they are going to do and how they are going to grow up." Mistakes and disappointments are part of selfdiscovery, and the handicapped adolescent should have as much opportunity to experiment with his life as the nonhandicapped. The pediatncian who finds the time to become acquainted with the person behind the handicap can be an invaluable ally in the handicapped person's efforts to realize the fullest possible life.

BIBLIOGRAPHY

1. Solnit, A. J., and Stark, M. H. Mourning and the birth of a defective child. Psychol. Stud. Child 16 (1961), 523.

2. Drotar, D., et al. The adaptation of parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics 56 (1975), 710-717.

3. Irvin, N. A., Kenne, J., and Klaus. M. Caring for parents of an infant with a congenital malformation. In Klaus, M., and Kennell, J. (eds.). Maternal-Infant Bonding. St. Louis: C. V. Mosby Company. 1976.

4. The Pediatrician and the Child with Mental Retardation. Evanston, Ill.: American Academy of Pediatrics. Committee on Children with Handicaps. 1971.

5. Pintner, R., Eisenson, J., and Stanton. M. The Psychology of the Physically Handicapped. New York: Appieton-Century-Crofts. 1941.

6. Wright .BA Physical Deabiity : A Psychological Approach. New York: Harper & Row. Publishers. 1960.

7. Haring. N G. A review of research on cerebral palsy and emotional adjustment. Except. Child. 26 (1959). 191-194.

8. MacGregor. F. C et al. Facial Deformities and Plastic Surgery: A Psychological Study. Springfield, Ill.: Charles C Thomas. 1953.

9. Watson. E. J. and Johnson. A. The emotional significance of acquired physical disfigurement in children. Am. J. Orthopsychiatry 28 (1958). 85-98

10. Carter. V. , and Chess, S. Factors influencing the adaptations of organically handicapped children. Am. J. Orthopsychiatry 21 (1951), 827-837.

11. CoJe, N. J., and Taboroff, L. H . The psychological problems of the congenitaHy blind chad. Am. J. Orthopsychiatry 25 (1955). 627-643.

12. Group for Advancement of Psychiatry. The Joys and Sorrows of Parenthood, vol. VNI. rep. #84. May. 1973.

13. Azrin. N. H. . and Foxx, R. M . A rapid method of toilet training the institutionalized retarded J. Appi. Behav. Anal. 4 (1971). 89-99.

14. Grossman. FK. Brothers and Sisters of Retarded Children: An Exploratory Study. Syracuse, N.Y.: Syracuse University Press. 1972.

15 Freedheim. D. K Mid Retardation: A Family Profie (film). Cleveland: Health Sciences Communication Center. Case Western Reserve University. 1977

16. Cruickshank, W The relation of physical disability to fear and guilt feelings. ChHd Dev 22 (1951). 291-298.

17. Kessler. J. W. The impact ol disability on the child. Phys. Ther. 46 (1966). 153-159

10.3928/0090-4481-19771001-10

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