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Toward a greater understanding of the parentsof the mentally retarded child
November, 1968 The Journal o[ P E D I A T R I C S
699
To,yard a greater understanding of the parents of the mentally retarded chiM Lee G. Miller, M.D. SEATTLE,
WASH.
PAR• N T S of handicapped children almost universally express dissatisfaction and, at times, resentment toward the physician who first confronts them with the diagnosis: "Your child is mentally retarded." Some complain that their doctor "was too blunt" or "told us too much too soon." Others complain that their doctor withheld the diagnosis with reassurances such as: "He will grow out of it." There must be a happy medium between these two extremes, but it is extremely rare to encounter parents who feel satisfied that their physician has presented his findings with the expected skill and understanding?, 2 The question arises, then, as to what and how much parents should be told when the physician suspects mental retardation or other chronically handicapping conditions in their child. There is no simple answer to this question. T h e physician needs to have a greater understanding of what parents of handicapped children experience as they struggle with the problem. In planning for the care of the retarded child, parents often are not included as part of the total case problem, ~, ~ although the persons who feel the impact of mental retardation are not only the affected children, but From the Division of Child Health, Department o[ Pediatrics, School o[ Medicine, University o[ Washington.
also their parents and family. The parents suffer the emotional crises; they are faced with the daily care and continuing dependency, and they must assume responsibility for the child's needs. The physician, in order to be effective, must be familiar with the stages of adjustment that these parents must go through, as well as skillful in dealing with them. Several disciplines have contributed key concepts which are helpful in achieving an understanding of the parents of handicapped children. T h e discussion which follows presents three perspectives in sequence: the family, the parents, and the mother. THE FAMILY
One of the most important considerations for the physician is the chronological position of the parents in their over-all life experience. Farber 5-8 has described families as going through 7 stages of development. There are families: (1) with no children, (2) with infant children, (3) with preschool children, (4) with elementary school children, (5) with junior high school and high school children, (6) with college-age children, (7) with children out of the home (no children again). Each stage in the development of a family is characterized by its own particular stresses and rewards and by the anticipation of the next stage soon to follow. Vol. 73, No. 5, pp. 699-705
700
Miller
The family with a retarded child is "frozen" in one of the earlier stages. The stresses of this period are intensified and prolonged, and the rewards are minimal. The siblings' order becomes reversed so that the retarded child functionally becomes the youngest sibling while others, chronologically younger, assume the role of older children. This tends to impose an increased burden upon the oldest normal female child, since the mother tends to call upon her for assistance in caring for the younger children. A second major factor to keep in mind is the degree of family integration. This is sometimes defined as the degree of agreement between the father and mother regarding their life goals and values. Closely related is the orientation of the family. Parents may be career-oriented, family-oriented, or children-oriented, and the mother and father may agree or disagree on this. The age of the parents and their prior experience with child-rearing is extremely important. For example, when the firstborn child is retarded he comes into a younger, less solidified family group. Younger parents are less experienced in child-rearing practices, and the firstborn represents their first attempt to reproduce themselves. Thus, the retarded firstborn child has a more devastating effect than one born later. The family in which a retarded child is the third- or fourth-born is more solidified, the parents have achieved reproduction of normal children, and they are more experienced and sure of themselves in child-rearing. Furthermore, they may no longer be planning future children and are thereby relieved of anxiety about the outcome o~ future pregnancies. THE
PARENTS
In addition to considering the family as a whole, the physician must understand the reactions of the individual parents. The most classic general term used to describe the parental reaction to a retarded child is the phrase "chronic sorrow" coined by Olshansky.SThe physician often works at helping the parents to "accept" the fact or the reality of the child's mental retardation,
The Jour,nal o[ Pediatrics November 1968
focusing primarily upon the child. The parents, meanwhile, are suffering a pervasive psychological reaction that has not always been recognized by the professional workers who attempt to help them. Some parents show their sorrow clearly; others attempt to conceal it, and sometimes they succeed. Chronic sorrow is a natural reaction to a lifelong handicap, such as retardation. The tendency of the physician to consider this a neurotic reaction may reinforce the parents' denial of their sorrow, which in turn may interfere with their coming to grips with the problems presented by the child's mental retardation. The intensity of this sorrow is influenced by personality, religion, and social class, and varies from time to time fo.r the same person and from one family to. another. The sorrow may be more 'intense for one parent than for the other in the same family. This sorrow is intertwined with feelings of guilt over producing a defective child, of frustration in being blocked in their attempt to reproduce successfully and complete a normal, full life cycle, or of anger and resentment over what fate has done to them. There is also a feeling of embarrassment over being the parent of a defective child. Parents of the normal child go. through many trials, but look forward to the day when the child will become a self-sufficient adult. On the other hand, parents o~ the retarded child may always be burdened by the child's dependency. THE
MOTHER
In addition to the total family situation and the parents' reaction to the retarded child, the physician should be cognizant of the intense, deeply personal reaction of the parents individually. Both parents experience this, the mother usually more acutely because of her role in pregnancy and childbirth. 1~ The psychological preparation for a new child during pregnancy involves the wish for a perfect child and the fear of a damaged child. There is probably always a disparity between the child desired by the mother and the actual child; to resolve this disparity be-
Volume 73 Number 5
Parents o[ mentally retarded children
70 1
comes one of the developmental tasks of motherhood in the establishment of a healthy mother-child relationship. In a normal pregnancy, labor, and delivery, psychological readjustments and achievements are part of the developmental advances leading to the early adoption of the mother role. Likewise, the course of motherhood is a developmental process, influenced after birth by the characteristics of the baby, first by his appearance and later by his responses. All parents are gradually disillusioned of the fantasy of a perfect child, but are rewarded, to a large degree, by the reality of successes as their child grows and matures. T h e entire preparatory and adaptive process is abruptly interrupted by the birth of a defective or retarded child. The mother of the retarded child is faced with the double tasks, mutually conflicting, of grieving for the loss of the expected child and adjusting to the presence of the imperfect child. 1~ H a d the normal child died, the grieving process normally would be limited and more clear-cut. In a mother grieving over the death of a loved one, intense emotion gradually wears away with the passage of time. The mother of a retarded child, on the other hand, is constantly confronted by the object of her sorrow and cannot as readily complete her mourning. In childbearing, the simultaneous loss of one child--the expected o n e - - a n d adaptation to the deviant or defective child, makes a demand that can be overwhelming. T h a t the unexpected aspect of the birth is realized at a time o.f physiological and psychological depletion is an essential factor in the traumatizing effect of the experience. Thus, at the time the mother is prepared to be nurtured by the satisfaction of her creative experience and to begin nurturing her child, her adaptive capacities are sapped because she has failed to create what she intended, and she feels damaged by the defective child to whom she has given birth. Just as pregnancy itself is a normal crisis in which there is no turning back, retardation is a condition which cannot be undone. The irretrievable nature of the retardation adds to the moth-
er's trapped feeling. She has failed to achieve what she has so laboriously prepared herself to create or produce. The mother may attempt to deal with her disturbed feelings about the painful fact of retardation by denying its existence. She may counter the pressure of irrational guilt by an oversolicitous, overprotective attitude which actually thwarts the development of the child. When the mother wards off her feelings of grief by establishing a guilty, depressed attachment to the retarded child, she may fail to relate adequately to other members of the family because she feels that she must give her life to the care of the damaged child. She may too be identifying herself with her defective child, adding to her own sense of deficiency and failure. In doing so the mother feels painfully defective as she is caring for her retarded child. The lack of opportunity to discuss the child's diagnosis can create a situation in which the parents are overwhelmed and unable to gauge the reality of their child's retarded development. Denial then serves to ward off the anxiety and depression. Once the physician has conveyed the initial diagnosis to the parents, there is a tendency to think that the interpretation of mental retardation is completed when in fact it has only begun. T h e main reason for this misjudgment on the part of the physician is that he has not understood the repetitive aspect of the mourning process in the mother's reaction, or that the unexpected advent of a retarded child can have a particularly traumatizing effect on the development of the mother and on the interaction and elaborations of family relationships. The ghost of the desired, expected healthy child continues to interfere with the family's adaptation to the defective child if the mourning process becomes the sustained atmosphere of the family. Interpretation of mental retardation to parents should be synchronized with the mourning reaction. Interpretation is a continuing process of clarification that facilitates the recognition of reality and promotes
702
Miller
adaptation to its demands. Coping with the outer reality of a child with a congenital defect and the inner reality of feeling the loss of the desired normal child requires a great deal of mental effort. The process is slow and emotionally painful, and it proceeds through the gradual and repeated discharge of intense feelings and memories. These mental and emotional reactions enable the parent to recognize and adapt to the reality of the retarded child. When a person is mourning, his ability to recognize, evaluate, and adapt to reality is often significantly impaired. A mother's continuation of mourning into a persistent, depressed, self-reproachful state may be encouraged if her mourning reaction is not understood, and if the care of and planning for her child are carried out without her active participation. Acceptance of the defective child cannot be hurried and will proceed along realistic lines only if her capacities to think, feel, and talk about her disappointment, sense of failure, and feelings of helplessness are not impaired by some adverse factor or by the attitudes of those professional persons to whom she goes for counsel and help. Often the reaction of the physician to the birth of a defective child mirrors the mother's psychological state. By expressing a wish to send the child to an institution before the mother sees the child, he is partly reacting to his own feelings of helplessness and failure, and partly dramatizing the loss of the normal child which the mother feels. In order to facilitate the work of the mourning process, the mother needs physical rest; an opportunity to review her thoughts and feelings about the wished-for child; a realistic interpretation of her child's condition and prospects; and as active a role in planning for and caring for the infant as she is able to assume. If the retardation is not evident at birth but only gradually becomes apparent in the first year or two, the mourning reaction is less acute, but its structure is very similar. In this situation, the difficulties in recognizing and adapting to the reality of the child's re-
The ]ournal o[ Pediatrics November 1968
tarded development may be drawn out over a long period of time. However, the gradualness of this recognition may also strengthen the denial of the reality, leading to a more tortuous and chronic mourning reaction on the part of the parents who may, while steadfastly' denying the child's defects or slow development, continue to seek special help to enable their child to overcome his difficulties. T H R E E S T A G E S OF P A R E N T A L ADJUSTMENT
The most common early reaction to tragedy is one of shock and disorganization; people fall apart. Complete inability to face reality leads to its uncompromising denial. Parents insist that there is nothing wrong with the child. This is described as stage I, or disintegration, and is that period of time when so much effort is being put into dealing with emotions that very little energy is left for coping effectively with the environment and carrying on. Following the first reaction of shock, stage II, or adjustment, starts. During this stage parents suffer chronic sorrow, and partly accept and partly deny the retardation, all at the same time. The fact of the handicap is seen clearly, but is ascribed to some circumstance or circumstances, the correction of which would restore the child to normalcy. They look for someone or something to blame for the child's defects; for instance, the inadequacy of the professional person involved in helping or training the child, be he physician, special education teacher, or someone else. They tend to talk more about themselves than about the children. During this period the parents are often considered "difficult" to deal with by physicians. The final step in adjustment is found in stage III, or reintegration. After a variable period of time, people pull themselves back together and begin to function more effectively and more realistically. Mature acknowledgement of the de facto situation makes it possible to assign to the child a place in the family in keeping with his specific pecularities. The mother neither makes
Volume 73 Number 5
Parents of mentally retarded children
herself a slave to him, nor does she take her inevitable frustrations out on him. She goes on functioning in her accustomed way. She continues her associations with her friends and acquaintances. T h e father shares her fondness for the child. Both parents manage to appraise the needs of the normal children as well and to distribute their parental contributions accordingly. This stage is more often a goal than an established reality.
on the part of the physician. H e must be absolutely honest and straightforward, and, at the same time, sensitive to the parents' feelings. I t is advisable to explain the framework of the medical diagnostic work-up so that they understand that a thorough, systematic search has been made for possible etiologies of the retardation. For instance, the electroencephalogram is often poorly understood, and it is well to explain what it does and does not do. In addition to the medical diagnosis, other test data must be interpreted to the parents. T h e results of psychological testing are usually eagerly sought. The mental age is more practical and meaningful to parents than is the I Q score, and the physician should point out the type of management that is realistic at that age level. Third, it is important to give parents time to ask questions and to ventilate feelings. 11 T h e universal concern of parents is for the future of their children. In the case of retarded children, this takes the form of possibilities for future marriage, employment, and independent living versus the need for sheltered workshops or institutionalization. I t is wise not to be dogmatic and to avoid long range prognostications. There is a great deal of difference between mild, moderate, and severe retardation. The physician s h o u l d carefully interpret to the parents which of these three categories their child is in. The mildly retarded child is considered educable, that is, capable of benefiting from academic instruction in special education classes in the public school system. He may eventually become independent. His future is totally different from the moderately or severely retarded child. The moderately retarded child is considered to be trainable, that is, capable of practical training for work in a sheltered workshop. In most instances, this type of child will never be totally independent. T h e severely retarded child may be capable of training in self-help skills, including feeding, toilet training, walking, speech, and dressing. T h e term profoundly retarded is re-
COUNSELING
PARENTS
The physician too often assumes that parents are at stage I I I when they are really at stage I. This results in an intensely frustrating interview for both parties. T h e physician insists upon presenting "the facts" when the parents are not yet ready for all the facts and, therefore, resist. It is common for parents to initially react with shock and disbelief when presented with tragic information about their child. Parents move from stage I to stage I I I on an emotional level, not on an intellectual level, and on their own individual time table, not according to one set down by the physician. This is the most difficult and least appreciated fact for the, physician to realize: He must allow the parents to move at their own pace. T h e first step in the conference with the parents is, therefore, to determine the stage of acceptance reached by the parents. This can be done quite simply by asking them what has been told to them by physicians and others, and what is their own estimation of the child's mental age and his condition. For example, if the child's chronological age is 6 years, mental age 3 years, and the mother estimates the mental age level at from 5 to 6 years, this usually indicates that the mother is still tending to deny the retardation. It is advisable to insist upon a separate answer from the father and the mother on this point, as they often hold widely divergent opinions. As determined from the above questions, the next step is to inform the parents of all known facts which they can accept at this time. This requires skill, tact, and patience
703
704
Miller
served for the dependent bedridden patient who requires total care. Almost~ all parents have feelings of guilt and wonder if they have done anything to cause the retardation. It is important for the physician to alleviate these feelings when possible, and to keep in mind that many parents have: doubts, fantasies, and secrets which they have revealed to no one. No amount of medical investigation will necessarily deal with these. The last step in counseling parents is to outline specific, realistic recommendations for the child and to discuss each one in order to assist the parents with the necessary implementation and follow through. T h e best principle is to avoid long range prognostications so as to. get the parents to focus realistically on the management of present-day problems and to take one year at a time. Worrying about their child's situation several years hence will not contribute anything but additional anxiety, with the exceptions of estate planning and applying to an institution. The pediatrician or family physician who sees retarded children can and must play an important role during these early years. By virtue of his training and experience in normal child development, he can contribute to the normal personality development of the retarded child, especially i f he already has an established relationship with the family and has gained their respect and confidence. Through his knowledge of the home atmosphere he can anticipate problems that may arise and can give the parents many practical suggestions for managing the child. Many parents, who because of their feelings of guilt and anxiety would not seek help from a child guidance clinic or social agency, can lean on the strength of their family physician or pediatrician, and thus improve their attitude toward and understanding of the child, themselves, and their total situation. Counseling of parents is a eontinous, perhaps almost life-long process. Each family will face new stresses and new problems at different stages in the development of a re-
The ]our~za! o/ Pediatrics November 1968
tarded child and will need repeated professional help. Counseling of parents is perhaps one of the most neglected areas in the field of mental retardation today. SUMMARY
Three perspectives of parents' reaction to retardation are presented, followed by the three stages parents must go through in order to achieve mature understanding of the problem. Finally, some guidelines for counseling are presented: (1) the diagnostic and counseling process in mental retardation is a repetitive one which requires considerable patience on the part of the physician, (2) the physician may misunderstand the stage at which the parents are, leading to a poor encounter between them, (3) the physician's reaction to the child's handicap may mirror the mother's state or his own anxiety and guilt. I want to express appreciation to the following individuals for assistance in editing the manuscript: Dr. Robert Deisher, Dr. Margaret Ohlson, Miss Alison Ross, and Dr. Norman Chivers. REFERENCES
1. Beck, H. L.: Counseling parents of retarded children, Children 6: 225, 1959. 2. Kanner, L.: Parents' feelings about retarded children, Am. J. Ment. Deficiency 57: 3, 375, 1953. 3. Zwerling, I.: Initial counseling of parents with mentally retarded children, J. PgD~AT. 44: 469, 1954. 4. Oberman, J. W.: The physician and parents of the retarded child, Children 9 May-June 1963. 5. Farber, ]3., Kick, S. A., and Hulett, J. E.: Effects of a severely mentally retarded child on family integration, Monograph, Soc. Res. Child Develop., Serial No. 71, vol. 24, No. 2, 1959. 6. Farber, B.: Family organization aid crisis: Maintenance of integration in families with a severely mentally retarded child, Monograph, Soc. Res. Child Develop., Serial No. 75a, vol. 25, 1960. 7. Farber, B.: Family crisis and the retarded child, Monograph, Soc. Res. Child Develop., Serial No. 75, vol, 25, No. 1, 1960. 8. Father, B., and Williams, J. C.: Family organization and parent-child communication: Parents and siblings of a retarded child, Monograph, Soc. Res. Child Develop., Series 90, vol. 28, No. 7, 1963.
Volume 73 Number 5
9. Olshansky, S.: Chronic sorrow, a response to having a mentally defective child, Social Casework 43: 190, 1962. I0. Solnit, A.: Mourning and the birth of a defective child, in, Eissler, R. S., et al., editors: psychoanalytic study of the child, vol. 16, New York, 1961, International Universities Press, p. 523.
Parents of mentally retarded children
7 05
11. Campanelle, T. G.: Counseling parents of mentally retarded children, Milwaukee, 1965, Bruce Publishing Company. 12. Ross, A. : The exceptional child in the family --helping parents of exceptional children, New York, 1964, Grune & Stratton, Inc.
699
To,yard a greater understanding of the parents of the mentally retarded chiM Lee G. Miller, M.D. SEATTLE,
WASH.
PAR• N T S of handicapped children almost universally express dissatisfaction and, at times, resentment toward the physician who first confronts them with the diagnosis: "Your child is mentally retarded." Some complain that their doctor "was too blunt" or "told us too much too soon." Others complain that their doctor withheld the diagnosis with reassurances such as: "He will grow out of it." There must be a happy medium between these two extremes, but it is extremely rare to encounter parents who feel satisfied that their physician has presented his findings with the expected skill and understanding?, 2 The question arises, then, as to what and how much parents should be told when the physician suspects mental retardation or other chronically handicapping conditions in their child. There is no simple answer to this question. T h e physician needs to have a greater understanding of what parents of handicapped children experience as they struggle with the problem. In planning for the care of the retarded child, parents often are not included as part of the total case problem, ~, ~ although the persons who feel the impact of mental retardation are not only the affected children, but From the Division of Child Health, Department o[ Pediatrics, School o[ Medicine, University o[ Washington.
also their parents and family. The parents suffer the emotional crises; they are faced with the daily care and continuing dependency, and they must assume responsibility for the child's needs. The physician, in order to be effective, must be familiar with the stages of adjustment that these parents must go through, as well as skillful in dealing with them. Several disciplines have contributed key concepts which are helpful in achieving an understanding of the parents of handicapped children. T h e discussion which follows presents three perspectives in sequence: the family, the parents, and the mother. THE FAMILY
One of the most important considerations for the physician is the chronological position of the parents in their over-all life experience. Farber 5-8 has described families as going through 7 stages of development. There are families: (1) with no children, (2) with infant children, (3) with preschool children, (4) with elementary school children, (5) with junior high school and high school children, (6) with college-age children, (7) with children out of the home (no children again). Each stage in the development of a family is characterized by its own particular stresses and rewards and by the anticipation of the next stage soon to follow. Vol. 73, No. 5, pp. 699-705
700
Miller
The family with a retarded child is "frozen" in one of the earlier stages. The stresses of this period are intensified and prolonged, and the rewards are minimal. The siblings' order becomes reversed so that the retarded child functionally becomes the youngest sibling while others, chronologically younger, assume the role of older children. This tends to impose an increased burden upon the oldest normal female child, since the mother tends to call upon her for assistance in caring for the younger children. A second major factor to keep in mind is the degree of family integration. This is sometimes defined as the degree of agreement between the father and mother regarding their life goals and values. Closely related is the orientation of the family. Parents may be career-oriented, family-oriented, or children-oriented, and the mother and father may agree or disagree on this. The age of the parents and their prior experience with child-rearing is extremely important. For example, when the firstborn child is retarded he comes into a younger, less solidified family group. Younger parents are less experienced in child-rearing practices, and the firstborn represents their first attempt to reproduce themselves. Thus, the retarded firstborn child has a more devastating effect than one born later. The family in which a retarded child is the third- or fourth-born is more solidified, the parents have achieved reproduction of normal children, and they are more experienced and sure of themselves in child-rearing. Furthermore, they may no longer be planning future children and are thereby relieved of anxiety about the outcome o~ future pregnancies. THE
PARENTS
In addition to considering the family as a whole, the physician must understand the reactions of the individual parents. The most classic general term used to describe the parental reaction to a retarded child is the phrase "chronic sorrow" coined by Olshansky.SThe physician often works at helping the parents to "accept" the fact or the reality of the child's mental retardation,
The Jour,nal o[ Pediatrics November 1968
focusing primarily upon the child. The parents, meanwhile, are suffering a pervasive psychological reaction that has not always been recognized by the professional workers who attempt to help them. Some parents show their sorrow clearly; others attempt to conceal it, and sometimes they succeed. Chronic sorrow is a natural reaction to a lifelong handicap, such as retardation. The tendency of the physician to consider this a neurotic reaction may reinforce the parents' denial of their sorrow, which in turn may interfere with their coming to grips with the problems presented by the child's mental retardation. The intensity of this sorrow is influenced by personality, religion, and social class, and varies from time to time fo.r the same person and from one family to. another. The sorrow may be more 'intense for one parent than for the other in the same family. This sorrow is intertwined with feelings of guilt over producing a defective child, of frustration in being blocked in their attempt to reproduce successfully and complete a normal, full life cycle, or of anger and resentment over what fate has done to them. There is also a feeling of embarrassment over being the parent of a defective child. Parents of the normal child go. through many trials, but look forward to the day when the child will become a self-sufficient adult. On the other hand, parents o~ the retarded child may always be burdened by the child's dependency. THE
MOTHER
In addition to the total family situation and the parents' reaction to the retarded child, the physician should be cognizant of the intense, deeply personal reaction of the parents individually. Both parents experience this, the mother usually more acutely because of her role in pregnancy and childbirth. 1~ The psychological preparation for a new child during pregnancy involves the wish for a perfect child and the fear of a damaged child. There is probably always a disparity between the child desired by the mother and the actual child; to resolve this disparity be-
Volume 73 Number 5
Parents o[ mentally retarded children
70 1
comes one of the developmental tasks of motherhood in the establishment of a healthy mother-child relationship. In a normal pregnancy, labor, and delivery, psychological readjustments and achievements are part of the developmental advances leading to the early adoption of the mother role. Likewise, the course of motherhood is a developmental process, influenced after birth by the characteristics of the baby, first by his appearance and later by his responses. All parents are gradually disillusioned of the fantasy of a perfect child, but are rewarded, to a large degree, by the reality of successes as their child grows and matures. T h e entire preparatory and adaptive process is abruptly interrupted by the birth of a defective or retarded child. The mother of the retarded child is faced with the double tasks, mutually conflicting, of grieving for the loss of the expected child and adjusting to the presence of the imperfect child. 1~ H a d the normal child died, the grieving process normally would be limited and more clear-cut. In a mother grieving over the death of a loved one, intense emotion gradually wears away with the passage of time. The mother of a retarded child, on the other hand, is constantly confronted by the object of her sorrow and cannot as readily complete her mourning. In childbearing, the simultaneous loss of one child--the expected o n e - - a n d adaptation to the deviant or defective child, makes a demand that can be overwhelming. T h a t the unexpected aspect of the birth is realized at a time o.f physiological and psychological depletion is an essential factor in the traumatizing effect of the experience. Thus, at the time the mother is prepared to be nurtured by the satisfaction of her creative experience and to begin nurturing her child, her adaptive capacities are sapped because she has failed to create what she intended, and she feels damaged by the defective child to whom she has given birth. Just as pregnancy itself is a normal crisis in which there is no turning back, retardation is a condition which cannot be undone. The irretrievable nature of the retardation adds to the moth-
er's trapped feeling. She has failed to achieve what she has so laboriously prepared herself to create or produce. The mother may attempt to deal with her disturbed feelings about the painful fact of retardation by denying its existence. She may counter the pressure of irrational guilt by an oversolicitous, overprotective attitude which actually thwarts the development of the child. When the mother wards off her feelings of grief by establishing a guilty, depressed attachment to the retarded child, she may fail to relate adequately to other members of the family because she feels that she must give her life to the care of the damaged child. She may too be identifying herself with her defective child, adding to her own sense of deficiency and failure. In doing so the mother feels painfully defective as she is caring for her retarded child. The lack of opportunity to discuss the child's diagnosis can create a situation in which the parents are overwhelmed and unable to gauge the reality of their child's retarded development. Denial then serves to ward off the anxiety and depression. Once the physician has conveyed the initial diagnosis to the parents, there is a tendency to think that the interpretation of mental retardation is completed when in fact it has only begun. T h e main reason for this misjudgment on the part of the physician is that he has not understood the repetitive aspect of the mourning process in the mother's reaction, or that the unexpected advent of a retarded child can have a particularly traumatizing effect on the development of the mother and on the interaction and elaborations of family relationships. The ghost of the desired, expected healthy child continues to interfere with the family's adaptation to the defective child if the mourning process becomes the sustained atmosphere of the family. Interpretation of mental retardation to parents should be synchronized with the mourning reaction. Interpretation is a continuing process of clarification that facilitates the recognition of reality and promotes
702
Miller
adaptation to its demands. Coping with the outer reality of a child with a congenital defect and the inner reality of feeling the loss of the desired normal child requires a great deal of mental effort. The process is slow and emotionally painful, and it proceeds through the gradual and repeated discharge of intense feelings and memories. These mental and emotional reactions enable the parent to recognize and adapt to the reality of the retarded child. When a person is mourning, his ability to recognize, evaluate, and adapt to reality is often significantly impaired. A mother's continuation of mourning into a persistent, depressed, self-reproachful state may be encouraged if her mourning reaction is not understood, and if the care of and planning for her child are carried out without her active participation. Acceptance of the defective child cannot be hurried and will proceed along realistic lines only if her capacities to think, feel, and talk about her disappointment, sense of failure, and feelings of helplessness are not impaired by some adverse factor or by the attitudes of those professional persons to whom she goes for counsel and help. Often the reaction of the physician to the birth of a defective child mirrors the mother's psychological state. By expressing a wish to send the child to an institution before the mother sees the child, he is partly reacting to his own feelings of helplessness and failure, and partly dramatizing the loss of the normal child which the mother feels. In order to facilitate the work of the mourning process, the mother needs physical rest; an opportunity to review her thoughts and feelings about the wished-for child; a realistic interpretation of her child's condition and prospects; and as active a role in planning for and caring for the infant as she is able to assume. If the retardation is not evident at birth but only gradually becomes apparent in the first year or two, the mourning reaction is less acute, but its structure is very similar. In this situation, the difficulties in recognizing and adapting to the reality of the child's re-
The ]ournal o[ Pediatrics November 1968
tarded development may be drawn out over a long period of time. However, the gradualness of this recognition may also strengthen the denial of the reality, leading to a more tortuous and chronic mourning reaction on the part of the parents who may, while steadfastly' denying the child's defects or slow development, continue to seek special help to enable their child to overcome his difficulties. T H R E E S T A G E S OF P A R E N T A L ADJUSTMENT
The most common early reaction to tragedy is one of shock and disorganization; people fall apart. Complete inability to face reality leads to its uncompromising denial. Parents insist that there is nothing wrong with the child. This is described as stage I, or disintegration, and is that period of time when so much effort is being put into dealing with emotions that very little energy is left for coping effectively with the environment and carrying on. Following the first reaction of shock, stage II, or adjustment, starts. During this stage parents suffer chronic sorrow, and partly accept and partly deny the retardation, all at the same time. The fact of the handicap is seen clearly, but is ascribed to some circumstance or circumstances, the correction of which would restore the child to normalcy. They look for someone or something to blame for the child's defects; for instance, the inadequacy of the professional person involved in helping or training the child, be he physician, special education teacher, or someone else. They tend to talk more about themselves than about the children. During this period the parents are often considered "difficult" to deal with by physicians. The final step in adjustment is found in stage III, or reintegration. After a variable period of time, people pull themselves back together and begin to function more effectively and more realistically. Mature acknowledgement of the de facto situation makes it possible to assign to the child a place in the family in keeping with his specific pecularities. The mother neither makes
Volume 73 Number 5
Parents of mentally retarded children
herself a slave to him, nor does she take her inevitable frustrations out on him. She goes on functioning in her accustomed way. She continues her associations with her friends and acquaintances. T h e father shares her fondness for the child. Both parents manage to appraise the needs of the normal children as well and to distribute their parental contributions accordingly. This stage is more often a goal than an established reality.
on the part of the physician. H e must be absolutely honest and straightforward, and, at the same time, sensitive to the parents' feelings. I t is advisable to explain the framework of the medical diagnostic work-up so that they understand that a thorough, systematic search has been made for possible etiologies of the retardation. For instance, the electroencephalogram is often poorly understood, and it is well to explain what it does and does not do. In addition to the medical diagnosis, other test data must be interpreted to the parents. T h e results of psychological testing are usually eagerly sought. The mental age is more practical and meaningful to parents than is the I Q score, and the physician should point out the type of management that is realistic at that age level. Third, it is important to give parents time to ask questions and to ventilate feelings. 11 T h e universal concern of parents is for the future of their children. In the case of retarded children, this takes the form of possibilities for future marriage, employment, and independent living versus the need for sheltered workshops or institutionalization. I t is wise not to be dogmatic and to avoid long range prognostications. There is a great deal of difference between mild, moderate, and severe retardation. The physician s h o u l d carefully interpret to the parents which of these three categories their child is in. The mildly retarded child is considered educable, that is, capable of benefiting from academic instruction in special education classes in the public school system. He may eventually become independent. His future is totally different from the moderately or severely retarded child. The moderately retarded child is considered to be trainable, that is, capable of practical training for work in a sheltered workshop. In most instances, this type of child will never be totally independent. T h e severely retarded child may be capable of training in self-help skills, including feeding, toilet training, walking, speech, and dressing. T h e term profoundly retarded is re-
COUNSELING
PARENTS
The physician too often assumes that parents are at stage I I I when they are really at stage I. This results in an intensely frustrating interview for both parties. T h e physician insists upon presenting "the facts" when the parents are not yet ready for all the facts and, therefore, resist. It is common for parents to initially react with shock and disbelief when presented with tragic information about their child. Parents move from stage I to stage I I I on an emotional level, not on an intellectual level, and on their own individual time table, not according to one set down by the physician. This is the most difficult and least appreciated fact for the, physician to realize: He must allow the parents to move at their own pace. T h e first step in the conference with the parents is, therefore, to determine the stage of acceptance reached by the parents. This can be done quite simply by asking them what has been told to them by physicians and others, and what is their own estimation of the child's mental age and his condition. For example, if the child's chronological age is 6 years, mental age 3 years, and the mother estimates the mental age level at from 5 to 6 years, this usually indicates that the mother is still tending to deny the retardation. It is advisable to insist upon a separate answer from the father and the mother on this point, as they often hold widely divergent opinions. As determined from the above questions, the next step is to inform the parents of all known facts which they can accept at this time. This requires skill, tact, and patience
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Miller
served for the dependent bedridden patient who requires total care. Almost~ all parents have feelings of guilt and wonder if they have done anything to cause the retardation. It is important for the physician to alleviate these feelings when possible, and to keep in mind that many parents have: doubts, fantasies, and secrets which they have revealed to no one. No amount of medical investigation will necessarily deal with these. The last step in counseling parents is to outline specific, realistic recommendations for the child and to discuss each one in order to assist the parents with the necessary implementation and follow through. T h e best principle is to avoid long range prognostications so as to. get the parents to focus realistically on the management of present-day problems and to take one year at a time. Worrying about their child's situation several years hence will not contribute anything but additional anxiety, with the exceptions of estate planning and applying to an institution. The pediatrician or family physician who sees retarded children can and must play an important role during these early years. By virtue of his training and experience in normal child development, he can contribute to the normal personality development of the retarded child, especially i f he already has an established relationship with the family and has gained their respect and confidence. Through his knowledge of the home atmosphere he can anticipate problems that may arise and can give the parents many practical suggestions for managing the child. Many parents, who because of their feelings of guilt and anxiety would not seek help from a child guidance clinic or social agency, can lean on the strength of their family physician or pediatrician, and thus improve their attitude toward and understanding of the child, themselves, and their total situation. Counseling of parents is a eontinous, perhaps almost life-long process. Each family will face new stresses and new problems at different stages in the development of a re-
The ]our~za! o/ Pediatrics November 1968
tarded child and will need repeated professional help. Counseling of parents is perhaps one of the most neglected areas in the field of mental retardation today. SUMMARY
Three perspectives of parents' reaction to retardation are presented, followed by the three stages parents must go through in order to achieve mature understanding of the problem. Finally, some guidelines for counseling are presented: (1) the diagnostic and counseling process in mental retardation is a repetitive one which requires considerable patience on the part of the physician, (2) the physician may misunderstand the stage at which the parents are, leading to a poor encounter between them, (3) the physician's reaction to the child's handicap may mirror the mother's state or his own anxiety and guilt. I want to express appreciation to the following individuals for assistance in editing the manuscript: Dr. Robert Deisher, Dr. Margaret Ohlson, Miss Alison Ross, and Dr. Norman Chivers. REFERENCES
1. Beck, H. L.: Counseling parents of retarded children, Children 6: 225, 1959. 2. Kanner, L.: Parents' feelings about retarded children, Am. J. Ment. Deficiency 57: 3, 375, 1953. 3. Zwerling, I.: Initial counseling of parents with mentally retarded children, J. PgD~AT. 44: 469, 1954. 4. Oberman, J. W.: The physician and parents of the retarded child, Children 9 May-June 1963. 5. Farber, ]3., Kick, S. A., and Hulett, J. E.: Effects of a severely mentally retarded child on family integration, Monograph, Soc. Res. Child Develop., Serial No. 71, vol. 24, No. 2, 1959. 6. Farber, B.: Family organization aid crisis: Maintenance of integration in families with a severely mentally retarded child, Monograph, Soc. Res. Child Develop., Serial No. 75a, vol. 25, 1960. 7. Farber, B.: Family crisis and the retarded child, Monograph, Soc. Res. Child Develop., Serial No. 75, vol, 25, No. 1, 1960. 8. Father, B., and Williams, J. C.: Family organization and parent-child communication: Parents and siblings of a retarded child, Monograph, Soc. Res. Child Develop., Series 90, vol. 28, No. 7, 1963.
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9. Olshansky, S.: Chronic sorrow, a response to having a mentally defective child, Social Casework 43: 190, 1962. I0. Solnit, A.: Mourning and the birth of a defective child, in, Eissler, R. S., et al., editors: psychoanalytic study of the child, vol. 16, New York, 1961, International Universities Press, p. 523.
Parents of mentally retarded children
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11. Campanelle, T. G.: Counseling parents of mentally retarded children, Milwaukee, 1965, Bruce Publishing Company. 12. Ross, A. : The exceptional child in the family --helping parents of exceptional children, New York, 1964, Grune & Stratton, Inc.