Sumposium on Behavioral Pediatrics
Management Problems of Mentally Retarded Children and Their Families
William F. Gayton, Ph.D.*
There has been increased recognition in recent years that family management is central to the care of mentally retarded children.24 While earlier pediatric involvement with the mentally retarded focused primarily on developmental assessment, recent attention seems to be more directed towards parent counseling. The type of management provided to the family during the developmental period is related to the eventual social, vocational, and emotional adjustment of the mentally retarded individual. Pediatricians faced with the difficult task of providing management services to mentally retarded children and their families are confronted with a number of difficult problems. This article will focus on a selected number of these problems including difficulties in: (1) informing the parents, (2) preventing the potential interference with the development of attachment, (3) dealing with the tendency of the family towards social withdrawal, (4) answering questions about future development, (5) handling overprotective and overindulgent parents, (6) dealing with grandparents, and (7) coping with the effects on siblings. These issues have been selected either because they have not received attention in the pediatric literature or because recent research has suggested new ways of dealing with them.
INFORMING THE PARENTS The task of informing parents that their child is mentally retarded is an exceedingly difficult and trying experience. Franklin12 likens it to the performance of a surgical operation without an anesthetic. The pediatric literature itself reveals a number of conflicting opinions about when to tell parents, how to tell parents, and in what manner. I. 15,17,23 Several authors have looked at these issues from the parent's viewpoint and have attempted to study parental experiences regarding the manner in which they we:re told. 4 , 6, 7, 10, 13 The results of these studies suggest "'Assistant Professor of Psychology, University of Maine at Portland-Gorham, Portland
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that parents have preferences as to how they would like to be informed of the diagnosis. First, it seems quite clear that parents prefer to be told as soon as possible. If the diagnosis is made at birth, it appears that parents, in general, would prefer to be told during the first week. Parental preference for being told as early as possible stems from several sources. First, parents find it extremely difficult to have to go back and tell other people that their child is retarded after they have initially indicated that the child is fine. Second, many parents develop suspicions on their own that something is wrong and they feel that an early telling would help prevent the extreme amount of concern that develops when the child fails to develop normally. Third, parents feel they have a right to know if anything is wrong with their child as soon as the physician is aware of it. Parents prefer to be told together whenever possible. What should be clearly avoided is the situation in which one parent is asked to tell the other. This is especially true in terms of the physician requesting that the mother tell the father. Parents report great difficulty in having to tell their spouse. Specifically, they find themselves unable to answer the myriad of questions that are generated and as a consequence the spouse frequently generates a great deal of hostility toward them. Parents also feel it is a problem they will have to share and, if told together, they will be able to offer emotional support to one another. The physician who tells the parents should be known to the family. In the case of Down's syndrome there does not seem to be a clear-cut preference for either the delivering physician or the pediatrician. Reasons for preferring the delivering physician include "he is the first one to know and I want to be told immediately"; whereas the primary reason for selecting the pediatrician is, "he is the doctor who really knows about children." The situation involving a first born child presents special difficulties. Many mothers indicate that being told by the pediatrician is difficult because they do not as yet have a relationship with him. They report that being told by a stranger makes it difficult to express the intense emotions they are experiencing. It would seem that an optimal solution, if the diagnosis is made at birth, would be for the delivering physician and pediatrician to tell the parents togetherP Parents should be assisted in obtaining information regarding mental retardation and also provided with knowledge about community resources during the initial informing interviews. Although it is understandable that the pediatrician will not want to overwhelm the parents with too much information, it is also true that in many instances he will not have contact with the family for several weeks after the initial telling. Any delay in providing this information because of fear of overwhelming parents should be minimal. In summary, parents have specific preferences as to how they would like to be informed their child is mentally retarded. Awareness of these preferences on the part of the pediatrician should result in more effective management.
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PREVENTING POTENTIAL INTERFERENCE WITH DEVELOPMENT OF ATTACHMENT In recent years there has been tremendous interest in the early relationship between mother and infant. Much of the work is centered on the concept of "attachment,"; a term which was introduced to describe the affectional tie between mother and infant. Research has suggested that attachment serves many important functions including providing the infant with a sense of security that allows for exploration of the environment. 3 Such exploration would seem to be highly related to later cognitive development. A chief variable in the development of healthy attachment appears to be mothers who are both sensitive and responsive to the infant's needs during the first year of life. 2 Mental retardation that is identified and diagnosed at birth creates a highly vulnerable relationship during the infancy period. 21 Whether one conceptualizes the initial reactions to the birth of a retarded child as "mourning"26 or "chronic sorrow,"22 the potential for interference with the development of an adequate mother-infant relationship is apparent. Severe loss of self-esteem, feelings of inadequacy, and depression can all make it difficult to love the child. Specialized medical procedures which eventuate in physical isolation of the child from the mother can also retard attachment behavior. Physical stigmata and/or lack of normal responsiveness may playa similar role. Pediatricians can help prevent interference of mother-infant attachment in a number of different ways. First, because the first year is so important, the pediatrician might provide for more frequent office visits. More frequent contact will provide the pediatrician with a better opportunity to detect indications of disruptions in attachment behavior. Second, the pediatrician will have to focus on the quality of the psychological relationship between mother and child in addition to his concern for the physical status of the child. This will make it easier for the mother to share her worries and concerns over various aspects of growth and development. Mothers feel uncomfortable raising questions about psychological development when the pediatrician is dealing exclusively with the child's physical health. Third, sharing with mothers the information that ambivalent feelings are to be expected and that "sorrow" over the loss of the idealized child is something that many people experience will help mothers recognize that having such feelings is not an indication that something is wrong with them. Being able to discuss such feelings with the pediatrician will help prevent mothers from becoming so emotionally distraught that it interferes with the development of a healthy mother-infant relationship. Serious disruption of the mother-infant relationship should be viewed with an appropriate amount of concern, and referral to mental health facilities may be necessary.
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DEALING WITH THE TENDENCY TOWARD SOCIAL WITHDRAWAL There is a common tendency on the part of parents of mentally retarded children to withdraw from social activities. 16 • 2o This decrease in the amount of social interaction along with the consequent focus on activities within the family stems from two major sources. First, the parents are faced with the difficult question of how to present the child to the community;l1 and second, the reality burdens of the retarded child make social and recreational enjoyment much harder to come by. In either case, the negative aftereffects are the same. Not only are the parents deprived of an opportunity to express their "chronic sorrow" to other people but it also restricts the number of opportunities that the retarded child has to acquire needed psychosocial skills. 25 Moreover, the behavior serves as a model for other family members and may convey the suggestion that retardation is something to be ashamed of and hidden. Pediatricians must be alert to the parent's tendencies to withdraw from community involvement and must be prepared to counsel them to maintain their extrafamilial activities. One must be able to convince parents that the uncomfortableness which accompanies initial attempts at presenting the child to the community will soon pass. Parents should be encouraged to present the child in an open and honest way with the expectation that most people will be able to accept the situation and react appropriately. Parents of retarded children seem to forget that many of their own psychological needs are met through social interactions with other people. Discussing with them the importance of avoiding social isolation may help combat the tendency towards social withdrawal. Getting parents in touch with other parents of retarded children is another way of helping prevent the development of social isolation. This leads them to the realization they are not alone and, in instances where the exposure involves the parent of an older mentally retarded child, helps them see what they can expect in terms of future development. Parents who have been able to write about their experiences in adjusting to the presence of a retarded child report being helped when exposed to other parents with a similar problem. Interaction with other parents often evolves into involvement in the parent movement. Active concern with such issues as the quality of care available in the community and the amount of state and federal funds allotted to programs for the mentally retarded can help generate new values. Be.ing part of an attempt to create needed resources and services is the type of experience that will allow the parent to change his value system in such a way as to find a niche for the child. 29
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ANSWERING QUESTIONS ABOUT FUTURE DEVELOPMENT Many parents have a need to ask questions regarding the future development of their child. Pediatricians, on the other hand, are frequently cautioned against making definitive predictions about the future development of children. If taken to the extreme, this leads to a situation where the parents are told "don't worry about that now." If the parents persist, the label of "overanxious parent," is usually applied. What is needed is some. degree of balance between wanting to avoid dogmatic prognostications and meeting the parent's legitimate need for information. Occasionally, the pediatrician will need to admit his lack of knowledge in certain areas while at the same time trying to direct the parents to possible sources of help. Many parents manifest intense informationseeking behavior and frequently report great difficulty in finding good reading material. One of the primary means by which the pediatrician can deal with parental anxiety over the future is to alert parents to the existence of such material and to have such material available for them. A great deal of information is currently available from local and/or national associations for retarded children in terms of community resources, estate planning, etc. Allowing parents to obtain such information on their own may incur risks especially in view of the tremendous number of misconceptions that exist in the older literature on mental retardation. Warnings from the pediatrician against delving into the older literature will go unheeded unless suitable material is provided. Parents need to be directed toward such information as early as possible. Such exposure not only provides parents with the feeling that they are actually doing something to help the child, but also helps to reduce the uncertainty regarding the future. 14 Mattsson19 has noted information-seeking behavior with the parents of hemophiliac children and points out that this "control through thinking" is a useful way for parents to master their anxiety and sense of helplessness. The most difficult question regarding futur"e development has to do with the child's eventual level of intelligence. It should be kept in mind that the younger the child is the more difficult it will be to make firm predictions regarding future development. What needs to be pointed out to parents is that the child's eventual mental development is a function of both inherited potential and the nature of the stimulation provided within the home. Solomons27 has proposed that hope within the bounds of realism be a guiding principle when dealing with this particular issue.
HANDLING OVERPROTECTIVE-OVERINDULGENT PARENTS A consistent finding in the parent counseling literature involves the problem of overprotective and overindulgent parents. 20 • 28 This problem includes refusing to set limits on the child's behavior as well as infantilizing the child by doing everything for him. The traditional psy-
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chodynamic explanation for such behavior involves hypothesizing: (1) a buildup of frustrations stemming from difficulties in raising a retarded child; (2) the development of feelings of rejection and anger toward the child; (3) the development of guilt as a result of feeling this way about one's child; and (4) reaction formation behavior on the part of parents in the form of overprotection and overindulgence. There are other ways of looking at such behavior, however, and the pediatrician should be aware of these. First, overprotectiveness may result from uncertainties regarding the child's capabilities. 9 Parents may come to the parental role with little or no information regarding mental retardation and what can be expected from retarded children. Second, overprotectiveness may result from guilt feelings over having caused the condition. Overprotectiveness is seen in this case as an attempt on the parent's part to make up to the child for having been responsible for his defect. Third, many parents function in an overprotective way because in many instances it is easier for them to do it than to have to wait for the child to do it. Somewhat related is the idea that if they do it for the child the child's failures will not be so conspicuous either to the child or to other people. 25 Pediatricians dealing with overprotective and overindulgent parents need to consider these latter explanations for such behavior. Parental uncertainty concerning the child's capabilities can be handled by discussing with parents expected developmental milestones and by providing them with information about what the child can be expected to do at various ages. Guilt over having caused the condition will require repeated discussions and clarifications as to our understanding and lack of understanding as to what causes mental retardation. In terms of the "easier to do it myself" attitude, it must be pointed out to parents that the long-term consequences of such behavior are highly immature and dependent children. ChessB has shown that one of the primary consequences of congenital rubella is a discrepancy between what the child is capable of doing and what he or she routinely does in terms of dressing, personal hygiene, toileting, and eating. This was especially true for the area of dressing where the children routinely did less than half of what they were capable of doing. Describing the difficulties that such children face when they begin school or when they try to make friends may help the parents see the dangers of their behavior. The focus must be on future negative consequences since it is very difficult for parents of preschool mentally retarded children to see how overprotectiveness and overindulgence could really harm their child.
DEALING WITH THE GRANDPARENTS Although extended family relationships may prove helpful in helping the parents deal with the "reality stress"29 aspects of raising a retarded child, it is also possible for extended family members to serve as an additional source of stress. Both Farberll and Holt16 note that the pa-
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ternal grandmother frequently blamed the wife for the presence of the retarded child in the family. Gayton and Walker14 have also noted that grandparents may have more difficulty accepting the diagnosis than the parents. Difficulty in accepting the diagnosis can be manifested by refusal to believe that anything is wrong with the grandchild and consequent anger when the matter is discussed. Along with this is the tendency to assure mother that "the child will grow out of it," or to continually suggest that she try a different physician. Such behavior on the part of the grandparents produces a great deal of stress on the family system and certainly adds to the difficulties the parents may be experiencing. A pediatrician focusing on total management needs to be alert to this source of stress and may want to invite the grandparents to accompany the parents during one of the child's regular check-ups. The grandparents may be helped toward a more realistic understanding of the condition by a discussion of the same information that has been transmitted to the parents. If the grandparents are contributing to family stress by trying to assign blame, then the pediatrician might offer comments such as "Your daughter (or son) is currently experiencing a great deal of pain and anguish. You can be of most help by accepting how she feels. Continued attempts on your part to blame the other side of the family will only make it more difficult for the parents to develop a healthy adaptation to the child." Cure fantasies are also found with grandparents and these must be dealt with as well. In summary, grandparents are not an automatic source of help and more specifically may serve as a very definite source of stress to the family which is trying to adapt to the presence of a retarded child. A willingness to relate to the grandparents and include them in the management sequence should result in less tension between parents and grandparents as well as offer the grandparents an opportunity to provide emotional support to the parents.
COPING WITH THE EFFECT ON SIBLINGS The presence of a retarded child in a family may result in the neglect of other children and/or, in the case of older female siblings, increased responsibility on their part for the care of the retarded child. 2 1. 25 The siblings, in turn, may respond to such neglect and increased responsibility by developing negative attitudes towards the child and/or by displacing their anger into acting-out behavior outside the home. The concept of "anticipatory guidance" may be useful in dealing with this particular problem. The pediatrician must point out to the parents of young retarded children that sibling neglect and the assignment of increased responsibility may have serious negative effects. Pointing out these dangers before they occur may help prevent the patterns of interaction noted above. Waiting until such patterns of behavior have developed runs many risks. As Mendlebaum and Wheeler have noted, "Efforts to call attention to the neglected needs of other siblings usually aroused anger and deep resentment."18
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Even in families where neglect and increased responsibility are kept within normal limits, embarrassment associated with the stigma of mental retardation may develop. Parents may have an especially difficult time viewing this embarrassment in an understanding manner and as a result frequently punish the siblings. Parents need to be counseled that some degree of embarrassment is to be expected as long as our society places such a negative valuation on mental retardation. Sibling anxiety concerning future marriage and childbearing capacity has also been noted and may be a good reason for the pediatrician to invite the siblings in for a discussion when they reach adolescence. 28 Adolescents need to be able to talk with someone about these feelings and often are not able to discuss such issues with their parents. Many parents express concern about when and how to inform the other children in the family. The question of when to tell siblings is very much dependent upon their level of sophistication and understanding. Many parents report that by the time the siblings reach the ages of nine or 10, they are able to understand and grasp the problem in a relatively mature manner. At a simplified level, however, it is possible to get even younger children to understand that the retarded child is somehow different and needs special attention. Although there is no general prescription for telling the other children in the family, the concept of slowness should be communicated as soon as they are old enough to grasp the concept. The siblings will need to know that the mentally retarded child will not "catch on" as quickly as children in general. They will also need to know that patience and kindness on their part is needed for full development of potential. Any delay or postponement in informing the siblings hinders their ability to develop a realistic understanding of the condition. Some parents may actually raise the possibility of keeping the child's condition a secret. Attempts to deal with the matter in this way usually result in a number of negative consequences for family functioning. A "conspiracy of silence" may develop with a good deal of energy being spent on keeping the other children in the dark. When parents deal with the issue in a deceptive manner, it is quite likely that the siblings will also learn to cope with the experience in a similar way. Pediatricians can playa very important role by encouraging parents to deal with the issue in an open and frank manner. Only by dealing with the situation in this manner will parents be able to deal with the misconceptions that the siblings develop regarding their mentally retarded brother or sister.
SUMMARY Pediatricians faced with the difficult task of providing management services to mentally retarded children and their families are confronted with a number of difficult problems. These range all the way from deciding how to inform parents that their child is retarded to dealing with grandparents who are a source of stress. Successful handling of these
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problems requires a recognition that management is central to the care of the mentally retarded child. The needs of mentally retarded children and their families will not be met by interacting with families only around issues of acute physical illness. Attention must be directed toward psychosocial as well as medical variables and the emphasis must be on the total family system.
REFERENCES 1. Ainsworth, M. D. S., and Wittig, B. A.: Attachment and exploratory behavior of one-yearolds in a strange situation. In Foss, B. M. (ed.): Determinants of Infant Behavior, VoL 4. London, Metheun, 1969. 2. Ainsworth, M. D. S., and Bell, S.: Attachment, exploration, and separation: Illustrated by the behavior ofone-year-olds in a strange situation. Child Dev., 41 :49-67, 1970. 3. Aldrich, C. A.: Preventive medicine and mongolism. Am. J. Ment. Defic., 52:127-129, 1947. 4. Berg, J. M., Gilderdale, S., and Way, J.: On telling parents of a diagnosis of mongolism. Brit. J. Psychiat., 115:1195-1196, 1969. 5. Bowlly, J.: The nature of the child's tie to his mother. Int. J. Psychoanal., 39:350-373, 1958. 6. Carr, J.: Mongolism: Telling the parents. Dev. Med. Child NeuroL, 12:213-221, 1970. 7. Carr, E. F., and Oppe, T. E.: The birth of an abnormal child: Telling the parents. Lancet, 2:1075-1976,1971. . S-: Chess, S. K., Sam, J., and Fernandez, P. B.: Psychiatric Disorders of Children with Congenital Rubella. New York, Brunner/Mazel, Inc., 1971. 9. Cummings, S. T., Bayley, H. C., and Rie, H. E.: Effects of the child's deficiency on the mother: A study of mothers of mentally retarded, chronically ill and neurotic children. Am. J. Orthopsychiatry, 36:595-608, 1969. 10. Drillien, C. M., and Wilkinson, E. M.: Mongolism: When should parents be told. Brit. Med. J., 2:1306-1307,1964. . 11. Farber, B., and Ryckman, D. B.: Effects of severely mentally retarded children on family relationships. Ment. Retard. Abstr., 11 : 1-1 7, 1965. 12. Franklin, A. W.: Care of the mongol baby-the first phase. Lancet, 1 :256-258, 1958. 13. Gayton, W. F., and Walker, L. J.: Down's syndrome: Informing the parents. Am. J. Dis. Child., 127:510-512, 1974. 14. Gayton, W. F., and Walker, L. W.: Family management of Down's syndrome during the early years. Fam. Phys., 9:160-164,1974. . 15. Handelman, N. 1.: Counseling parents of the mongolian child. Pediat. Clin. North Amer., 5:207-211,1961. 16. Holt, K. S.: Home care of severely retarded children. Pediatrics, 22:744-755,1958. 17. Kirman, B. H.: Mongolism: Diagnosis and management at home. Med. World, 78:258265,1953. 18. Mandelbaum, A., and Wheeler, M. E.: The meaning of a defective child to parents. Soc. Casewk., 41 :360-367, 1960. 19. Mattson, A., and Agle, D. P.: Group therapy with parents of hemophiliacs. J. Am. Acad. Child Psychiat., 11 :558-571, 1972. 20. McKibbin, E. H.: An interdisciplinary program for retarded children and their families. Am. J. Occup. Ther., 3:125-129,1972. 21. Miller, L. G.: Toward a greater understanding of the parents of the mentally retarded child. J. Pediat., 73:699-705, 1968. 22. Olshansky, S.: Chronic sorrow: A response to having a mentally defective child. Soc. Casewk., 43:190-193,1962. 23. Parmelee, A. H.: Management of Mongolism in childhood. Int. Rec. Med., 169:358-361, 1956. 24. Pearson, P. H.: The physician's role in diagnosis and management of the mentally retarded. Pediat. Clin. North Amer., 15:835-859, 1968. 25. Poznanski, E. 0.: Emotional issues in raising handicapped children. Rehabil. Lit., 34:322-326, 1973. 26. Solnit, A. J., and Stark, M. H.: Mourning and the birth of a defective child. Psychoanal. Stud. Child., 16:523-537, 1961.
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27. Solomons, G.: Counseling parents of the retarded: The interpretation interview. In Menolascino, F. J. (ed.): Psychiatric Approaches to Mental Retardation. New York, Basic Books, Inc., 1970. 28. Valente, M.: Counseling parents of retarded children. Calif. Med., 116:21-26, 1972. 29. Wolfensberger, W., and Menolascino, F. J.: A theoretical framework for the management of parents of the mentally retarded. In Menolascino, F. J. (ed): Psychiatric Approaches to Mental Retardation. New York, Basic Books, Inc., 1970. 96 Falmouth Street Portland, Main~
Management Problems of Mentally Retarded Children and Their Families
William F. Gayton, Ph.D.*
There has been increased recognition in recent years that family management is central to the care of mentally retarded children.24 While earlier pediatric involvement with the mentally retarded focused primarily on developmental assessment, recent attention seems to be more directed towards parent counseling. The type of management provided to the family during the developmental period is related to the eventual social, vocational, and emotional adjustment of the mentally retarded individual. Pediatricians faced with the difficult task of providing management services to mentally retarded children and their families are confronted with a number of difficult problems. This article will focus on a selected number of these problems including difficulties in: (1) informing the parents, (2) preventing the potential interference with the development of attachment, (3) dealing with the tendency of the family towards social withdrawal, (4) answering questions about future development, (5) handling overprotective and overindulgent parents, (6) dealing with grandparents, and (7) coping with the effects on siblings. These issues have been selected either because they have not received attention in the pediatric literature or because recent research has suggested new ways of dealing with them.
INFORMING THE PARENTS The task of informing parents that their child is mentally retarded is an exceedingly difficult and trying experience. Franklin12 likens it to the performance of a surgical operation without an anesthetic. The pediatric literature itself reveals a number of conflicting opinions about when to tell parents, how to tell parents, and in what manner. I. 15,17,23 Several authors have looked at these issues from the parent's viewpoint and have attempted to study parental experiences regarding the manner in which they we:re told. 4 , 6, 7, 10, 13 The results of these studies suggest "'Assistant Professor of Psychology, University of Maine at Portland-Gorham, Portland
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that parents have preferences as to how they would like to be informed of the diagnosis. First, it seems quite clear that parents prefer to be told as soon as possible. If the diagnosis is made at birth, it appears that parents, in general, would prefer to be told during the first week. Parental preference for being told as early as possible stems from several sources. First, parents find it extremely difficult to have to go back and tell other people that their child is retarded after they have initially indicated that the child is fine. Second, many parents develop suspicions on their own that something is wrong and they feel that an early telling would help prevent the extreme amount of concern that develops when the child fails to develop normally. Third, parents feel they have a right to know if anything is wrong with their child as soon as the physician is aware of it. Parents prefer to be told together whenever possible. What should be clearly avoided is the situation in which one parent is asked to tell the other. This is especially true in terms of the physician requesting that the mother tell the father. Parents report great difficulty in having to tell their spouse. Specifically, they find themselves unable to answer the myriad of questions that are generated and as a consequence the spouse frequently generates a great deal of hostility toward them. Parents also feel it is a problem they will have to share and, if told together, they will be able to offer emotional support to one another. The physician who tells the parents should be known to the family. In the case of Down's syndrome there does not seem to be a clear-cut preference for either the delivering physician or the pediatrician. Reasons for preferring the delivering physician include "he is the first one to know and I want to be told immediately"; whereas the primary reason for selecting the pediatrician is, "he is the doctor who really knows about children." The situation involving a first born child presents special difficulties. Many mothers indicate that being told by the pediatrician is difficult because they do not as yet have a relationship with him. They report that being told by a stranger makes it difficult to express the intense emotions they are experiencing. It would seem that an optimal solution, if the diagnosis is made at birth, would be for the delivering physician and pediatrician to tell the parents togetherP Parents should be assisted in obtaining information regarding mental retardation and also provided with knowledge about community resources during the initial informing interviews. Although it is understandable that the pediatrician will not want to overwhelm the parents with too much information, it is also true that in many instances he will not have contact with the family for several weeks after the initial telling. Any delay in providing this information because of fear of overwhelming parents should be minimal. In summary, parents have specific preferences as to how they would like to be informed their child is mentally retarded. Awareness of these preferences on the part of the pediatrician should result in more effective management.
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PREVENTING POTENTIAL INTERFERENCE WITH DEVELOPMENT OF ATTACHMENT In recent years there has been tremendous interest in the early relationship between mother and infant. Much of the work is centered on the concept of "attachment,"; a term which was introduced to describe the affectional tie between mother and infant. Research has suggested that attachment serves many important functions including providing the infant with a sense of security that allows for exploration of the environment. 3 Such exploration would seem to be highly related to later cognitive development. A chief variable in the development of healthy attachment appears to be mothers who are both sensitive and responsive to the infant's needs during the first year of life. 2 Mental retardation that is identified and diagnosed at birth creates a highly vulnerable relationship during the infancy period. 21 Whether one conceptualizes the initial reactions to the birth of a retarded child as "mourning"26 or "chronic sorrow,"22 the potential for interference with the development of an adequate mother-infant relationship is apparent. Severe loss of self-esteem, feelings of inadequacy, and depression can all make it difficult to love the child. Specialized medical procedures which eventuate in physical isolation of the child from the mother can also retard attachment behavior. Physical stigmata and/or lack of normal responsiveness may playa similar role. Pediatricians can help prevent interference of mother-infant attachment in a number of different ways. First, because the first year is so important, the pediatrician might provide for more frequent office visits. More frequent contact will provide the pediatrician with a better opportunity to detect indications of disruptions in attachment behavior. Second, the pediatrician will have to focus on the quality of the psychological relationship between mother and child in addition to his concern for the physical status of the child. This will make it easier for the mother to share her worries and concerns over various aspects of growth and development. Mothers feel uncomfortable raising questions about psychological development when the pediatrician is dealing exclusively with the child's physical health. Third, sharing with mothers the information that ambivalent feelings are to be expected and that "sorrow" over the loss of the idealized child is something that many people experience will help mothers recognize that having such feelings is not an indication that something is wrong with them. Being able to discuss such feelings with the pediatrician will help prevent mothers from becoming so emotionally distraught that it interferes with the development of a healthy mother-infant relationship. Serious disruption of the mother-infant relationship should be viewed with an appropriate amount of concern, and referral to mental health facilities may be necessary.
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DEALING WITH THE TENDENCY TOWARD SOCIAL WITHDRAWAL There is a common tendency on the part of parents of mentally retarded children to withdraw from social activities. 16 • 2o This decrease in the amount of social interaction along with the consequent focus on activities within the family stems from two major sources. First, the parents are faced with the difficult question of how to present the child to the community;l1 and second, the reality burdens of the retarded child make social and recreational enjoyment much harder to come by. In either case, the negative aftereffects are the same. Not only are the parents deprived of an opportunity to express their "chronic sorrow" to other people but it also restricts the number of opportunities that the retarded child has to acquire needed psychosocial skills. 25 Moreover, the behavior serves as a model for other family members and may convey the suggestion that retardation is something to be ashamed of and hidden. Pediatricians must be alert to the parent's tendencies to withdraw from community involvement and must be prepared to counsel them to maintain their extrafamilial activities. One must be able to convince parents that the uncomfortableness which accompanies initial attempts at presenting the child to the community will soon pass. Parents should be encouraged to present the child in an open and honest way with the expectation that most people will be able to accept the situation and react appropriately. Parents of retarded children seem to forget that many of their own psychological needs are met through social interactions with other people. Discussing with them the importance of avoiding social isolation may help combat the tendency towards social withdrawal. Getting parents in touch with other parents of retarded children is another way of helping prevent the development of social isolation. This leads them to the realization they are not alone and, in instances where the exposure involves the parent of an older mentally retarded child, helps them see what they can expect in terms of future development. Parents who have been able to write about their experiences in adjusting to the presence of a retarded child report being helped when exposed to other parents with a similar problem. Interaction with other parents often evolves into involvement in the parent movement. Active concern with such issues as the quality of care available in the community and the amount of state and federal funds allotted to programs for the mentally retarded can help generate new values. Be.ing part of an attempt to create needed resources and services is the type of experience that will allow the parent to change his value system in such a way as to find a niche for the child. 29
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ANSWERING QUESTIONS ABOUT FUTURE DEVELOPMENT Many parents have a need to ask questions regarding the future development of their child. Pediatricians, on the other hand, are frequently cautioned against making definitive predictions about the future development of children. If taken to the extreme, this leads to a situation where the parents are told "don't worry about that now." If the parents persist, the label of "overanxious parent," is usually applied. What is needed is some. degree of balance between wanting to avoid dogmatic prognostications and meeting the parent's legitimate need for information. Occasionally, the pediatrician will need to admit his lack of knowledge in certain areas while at the same time trying to direct the parents to possible sources of help. Many parents manifest intense informationseeking behavior and frequently report great difficulty in finding good reading material. One of the primary means by which the pediatrician can deal with parental anxiety over the future is to alert parents to the existence of such material and to have such material available for them. A great deal of information is currently available from local and/or national associations for retarded children in terms of community resources, estate planning, etc. Allowing parents to obtain such information on their own may incur risks especially in view of the tremendous number of misconceptions that exist in the older literature on mental retardation. Warnings from the pediatrician against delving into the older literature will go unheeded unless suitable material is provided. Parents need to be directed toward such information as early as possible. Such exposure not only provides parents with the feeling that they are actually doing something to help the child, but also helps to reduce the uncertainty regarding the future. 14 Mattsson19 has noted information-seeking behavior with the parents of hemophiliac children and points out that this "control through thinking" is a useful way for parents to master their anxiety and sense of helplessness. The most difficult question regarding futur"e development has to do with the child's eventual level of intelligence. It should be kept in mind that the younger the child is the more difficult it will be to make firm predictions regarding future development. What needs to be pointed out to parents is that the child's eventual mental development is a function of both inherited potential and the nature of the stimulation provided within the home. Solomons27 has proposed that hope within the bounds of realism be a guiding principle when dealing with this particular issue.
HANDLING OVERPROTECTIVE-OVERINDULGENT PARENTS A consistent finding in the parent counseling literature involves the problem of overprotective and overindulgent parents. 20 • 28 This problem includes refusing to set limits on the child's behavior as well as infantilizing the child by doing everything for him. The traditional psy-
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chodynamic explanation for such behavior involves hypothesizing: (1) a buildup of frustrations stemming from difficulties in raising a retarded child; (2) the development of feelings of rejection and anger toward the child; (3) the development of guilt as a result of feeling this way about one's child; and (4) reaction formation behavior on the part of parents in the form of overprotection and overindulgence. There are other ways of looking at such behavior, however, and the pediatrician should be aware of these. First, overprotectiveness may result from uncertainties regarding the child's capabilities. 9 Parents may come to the parental role with little or no information regarding mental retardation and what can be expected from retarded children. Second, overprotectiveness may result from guilt feelings over having caused the condition. Overprotectiveness is seen in this case as an attempt on the parent's part to make up to the child for having been responsible for his defect. Third, many parents function in an overprotective way because in many instances it is easier for them to do it than to have to wait for the child to do it. Somewhat related is the idea that if they do it for the child the child's failures will not be so conspicuous either to the child or to other people. 25 Pediatricians dealing with overprotective and overindulgent parents need to consider these latter explanations for such behavior. Parental uncertainty concerning the child's capabilities can be handled by discussing with parents expected developmental milestones and by providing them with information about what the child can be expected to do at various ages. Guilt over having caused the condition will require repeated discussions and clarifications as to our understanding and lack of understanding as to what causes mental retardation. In terms of the "easier to do it myself" attitude, it must be pointed out to parents that the long-term consequences of such behavior are highly immature and dependent children. ChessB has shown that one of the primary consequences of congenital rubella is a discrepancy between what the child is capable of doing and what he or she routinely does in terms of dressing, personal hygiene, toileting, and eating. This was especially true for the area of dressing where the children routinely did less than half of what they were capable of doing. Describing the difficulties that such children face when they begin school or when they try to make friends may help the parents see the dangers of their behavior. The focus must be on future negative consequences since it is very difficult for parents of preschool mentally retarded children to see how overprotectiveness and overindulgence could really harm their child.
DEALING WITH THE GRANDPARENTS Although extended family relationships may prove helpful in helping the parents deal with the "reality stress"29 aspects of raising a retarded child, it is also possible for extended family members to serve as an additional source of stress. Both Farberll and Holt16 note that the pa-
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ternal grandmother frequently blamed the wife for the presence of the retarded child in the family. Gayton and Walker14 have also noted that grandparents may have more difficulty accepting the diagnosis than the parents. Difficulty in accepting the diagnosis can be manifested by refusal to believe that anything is wrong with the grandchild and consequent anger when the matter is discussed. Along with this is the tendency to assure mother that "the child will grow out of it," or to continually suggest that she try a different physician. Such behavior on the part of the grandparents produces a great deal of stress on the family system and certainly adds to the difficulties the parents may be experiencing. A pediatrician focusing on total management needs to be alert to this source of stress and may want to invite the grandparents to accompany the parents during one of the child's regular check-ups. The grandparents may be helped toward a more realistic understanding of the condition by a discussion of the same information that has been transmitted to the parents. If the grandparents are contributing to family stress by trying to assign blame, then the pediatrician might offer comments such as "Your daughter (or son) is currently experiencing a great deal of pain and anguish. You can be of most help by accepting how she feels. Continued attempts on your part to blame the other side of the family will only make it more difficult for the parents to develop a healthy adaptation to the child." Cure fantasies are also found with grandparents and these must be dealt with as well. In summary, grandparents are not an automatic source of help and more specifically may serve as a very definite source of stress to the family which is trying to adapt to the presence of a retarded child. A willingness to relate to the grandparents and include them in the management sequence should result in less tension between parents and grandparents as well as offer the grandparents an opportunity to provide emotional support to the parents.
COPING WITH THE EFFECT ON SIBLINGS The presence of a retarded child in a family may result in the neglect of other children and/or, in the case of older female siblings, increased responsibility on their part for the care of the retarded child. 2 1. 25 The siblings, in turn, may respond to such neglect and increased responsibility by developing negative attitudes towards the child and/or by displacing their anger into acting-out behavior outside the home. The concept of "anticipatory guidance" may be useful in dealing with this particular problem. The pediatrician must point out to the parents of young retarded children that sibling neglect and the assignment of increased responsibility may have serious negative effects. Pointing out these dangers before they occur may help prevent the patterns of interaction noted above. Waiting until such patterns of behavior have developed runs many risks. As Mendlebaum and Wheeler have noted, "Efforts to call attention to the neglected needs of other siblings usually aroused anger and deep resentment."18
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Even in families where neglect and increased responsibility are kept within normal limits, embarrassment associated with the stigma of mental retardation may develop. Parents may have an especially difficult time viewing this embarrassment in an understanding manner and as a result frequently punish the siblings. Parents need to be counseled that some degree of embarrassment is to be expected as long as our society places such a negative valuation on mental retardation. Sibling anxiety concerning future marriage and childbearing capacity has also been noted and may be a good reason for the pediatrician to invite the siblings in for a discussion when they reach adolescence. 28 Adolescents need to be able to talk with someone about these feelings and often are not able to discuss such issues with their parents. Many parents express concern about when and how to inform the other children in the family. The question of when to tell siblings is very much dependent upon their level of sophistication and understanding. Many parents report that by the time the siblings reach the ages of nine or 10, they are able to understand and grasp the problem in a relatively mature manner. At a simplified level, however, it is possible to get even younger children to understand that the retarded child is somehow different and needs special attention. Although there is no general prescription for telling the other children in the family, the concept of slowness should be communicated as soon as they are old enough to grasp the concept. The siblings will need to know that the mentally retarded child will not "catch on" as quickly as children in general. They will also need to know that patience and kindness on their part is needed for full development of potential. Any delay or postponement in informing the siblings hinders their ability to develop a realistic understanding of the condition. Some parents may actually raise the possibility of keeping the child's condition a secret. Attempts to deal with the matter in this way usually result in a number of negative consequences for family functioning. A "conspiracy of silence" may develop with a good deal of energy being spent on keeping the other children in the dark. When parents deal with the issue in a deceptive manner, it is quite likely that the siblings will also learn to cope with the experience in a similar way. Pediatricians can playa very important role by encouraging parents to deal with the issue in an open and frank manner. Only by dealing with the situation in this manner will parents be able to deal with the misconceptions that the siblings develop regarding their mentally retarded brother or sister.
SUMMARY Pediatricians faced with the difficult task of providing management services to mentally retarded children and their families are confronted with a number of difficult problems. These range all the way from deciding how to inform parents that their child is retarded to dealing with grandparents who are a source of stress. Successful handling of these
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problems requires a recognition that management is central to the care of the mentally retarded child. The needs of mentally retarded children and their families will not be met by interacting with families only around issues of acute physical illness. Attention must be directed toward psychosocial as well as medical variables and the emphasis must be on the total family system.
REFERENCES 1. Ainsworth, M. D. S., and Wittig, B. A.: Attachment and exploratory behavior of one-yearolds in a strange situation. In Foss, B. M. (ed.): Determinants of Infant Behavior, VoL 4. London, Metheun, 1969. 2. Ainsworth, M. D. S., and Bell, S.: Attachment, exploration, and separation: Illustrated by the behavior ofone-year-olds in a strange situation. Child Dev., 41 :49-67, 1970. 3. Aldrich, C. A.: Preventive medicine and mongolism. Am. J. Ment. Defic., 52:127-129, 1947. 4. Berg, J. M., Gilderdale, S., and Way, J.: On telling parents of a diagnosis of mongolism. Brit. J. Psychiat., 115:1195-1196, 1969. 5. Bowlly, J.: The nature of the child's tie to his mother. Int. J. Psychoanal., 39:350-373, 1958. 6. Carr, J.: Mongolism: Telling the parents. Dev. Med. Child NeuroL, 12:213-221, 1970. 7. Carr, E. F., and Oppe, T. E.: The birth of an abnormal child: Telling the parents. Lancet, 2:1075-1976,1971. . S-: Chess, S. K., Sam, J., and Fernandez, P. B.: Psychiatric Disorders of Children with Congenital Rubella. New York, Brunner/Mazel, Inc., 1971. 9. Cummings, S. T., Bayley, H. C., and Rie, H. E.: Effects of the child's deficiency on the mother: A study of mothers of mentally retarded, chronically ill and neurotic children. Am. J. Orthopsychiatry, 36:595-608, 1969. 10. Drillien, C. M., and Wilkinson, E. M.: Mongolism: When should parents be told. Brit. Med. J., 2:1306-1307,1964. . 11. Farber, B., and Ryckman, D. B.: Effects of severely mentally retarded children on family relationships. Ment. Retard. Abstr., 11 : 1-1 7, 1965. 12. Franklin, A. W.: Care of the mongol baby-the first phase. Lancet, 1 :256-258, 1958. 13. Gayton, W. F., and Walker, L. J.: Down's syndrome: Informing the parents. Am. J. Dis. Child., 127:510-512, 1974. 14. Gayton, W. F., and Walker, L. W.: Family management of Down's syndrome during the early years. Fam. Phys., 9:160-164,1974. . 15. Handelman, N. 1.: Counseling parents of the mongolian child. Pediat. Clin. North Amer., 5:207-211,1961. 16. Holt, K. S.: Home care of severely retarded children. Pediatrics, 22:744-755,1958. 17. Kirman, B. H.: Mongolism: Diagnosis and management at home. Med. World, 78:258265,1953. 18. Mandelbaum, A., and Wheeler, M. E.: The meaning of a defective child to parents. Soc. Casewk., 41 :360-367, 1960. 19. Mattson, A., and Agle, D. P.: Group therapy with parents of hemophiliacs. J. Am. Acad. Child Psychiat., 11 :558-571, 1972. 20. McKibbin, E. H.: An interdisciplinary program for retarded children and their families. Am. J. Occup. Ther., 3:125-129,1972. 21. Miller, L. G.: Toward a greater understanding of the parents of the mentally retarded child. J. Pediat., 73:699-705, 1968. 22. Olshansky, S.: Chronic sorrow: A response to having a mentally defective child. Soc. Casewk., 43:190-193,1962. 23. Parmelee, A. H.: Management of Mongolism in childhood. Int. Rec. Med., 169:358-361, 1956. 24. Pearson, P. H.: The physician's role in diagnosis and management of the mentally retarded. Pediat. Clin. North Amer., 15:835-859, 1968. 25. Poznanski, E. 0.: Emotional issues in raising handicapped children. Rehabil. Lit., 34:322-326, 1973. 26. Solnit, A. J., and Stark, M. H.: Mourning and the birth of a defective child. Psychoanal. Stud. Child., 16:523-537, 1961.
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27. Solomons, G.: Counseling parents of the retarded: The interpretation interview. In Menolascino, F. J. (ed.): Psychiatric Approaches to Mental Retardation. New York, Basic Books, Inc., 1970. 28. Valente, M.: Counseling parents of retarded children. Calif. Med., 116:21-26, 1972. 29. Wolfensberger, W., and Menolascino, F. J.: A theoretical framework for the management of parents of the mentally retarded. In Menolascino, F. J. (ed): Psychiatric Approaches to Mental Retardation. New York, Basic Books, Inc., 1970. 96 Falmouth Street Portland, Main~
