- Email: [email protected]
Working With Parents Through a Devastating Experience-The Birth of a Mongoloid Child
facts and opinion Working With Parents Through a Devastating Experience The Birth of a Mongoloid Child F R I T Z 1 KALLOP, RN, RS T h e author believes that professional advice given the parents of a mongoloid infant determines their initial decision on institutionalization. Multidisciplnary counseling b y the health team can help parents decide on a course of action that will prove satisfactory in the long run. Consultation should include health t e r n efforts to help parents w o r k through the mourning process and presentation of a) an objective, comprehensive view of the child’s condition, b ) information on integrating a mongoloid into the family unit, and c ) outside resources available to the parents. Deliberation with the parents to help them reach their o w n decision is essential.
In today’s world of automation, increased technology and complexity, there still remains one universally humbling experience-birth. Having taught the Lamaze method of childbirth for several years, I have become acquainted with many of the husbands and wives during the sixweek Lamaze course and during their labor and delivery experience. I would like to quote one father from whom I recently received a note describing the first few moments after the birth of his son: W e looked at Peter together, and I felt a sense of ecstacy, love and warmth for Kitty [his wife] that seemed palpable and alive, stronger than I had known before. W e had made this baby together. I never wanted to forget any of it. It was a miracle.
Upon receiving this note, I went to visit them. They both sat quietly, Kitty crying softly, her husband resting his head in his hands. As I soon learned, the “miraculous” birth had suddenly become a devastating and overwhelming experience. Their son Peter was found to have Down’s syndrome (monogolism) . Perhaps many of us on the health care team take the miracle of normal birth for granted. Many fail to work effectively with the particularly devastated parents of a baby with Down’s syndrome. Is it because we do not understand the emotional and psychologic process through which this couple must 36
pass? Is it due to our own feelings of inadequacy because we cannot cure or change the mongoloid child? O r is it our lack of information combined with our own limited personal views of mongolism? I feel our inadequacy results from a combination of all of these factors.
The Process of Acceptance T h e literature describes the process of acceptance of an imperfect child as slow and tedious, involving many factors. (see “References” and “Supplemental Bibliography”) T h e mother’s prenatal expectations must be considerably altered when she grasps the reality of an incurably defective child. She must then begin the process of slow absorption and eventual integration of this new and painful experience. T h e health care team working with this mother can often observe her stages of denial, anger, bargaining, depression and, finally, acceptance.’ Permeating all of these phases are the “postpartum blues,” the mother’s mourning for the part of her own body, the infant, that is now gone. If this “part” is defective, the infant may constitute a blow to the mother’s ego. Final acceptance of this child is not a joyful experience. It is resignation with an awareness and understanding of loss and feelings of disappointment. T h e mourning process is never complete. Continually in the future, the family will be reminded of the imperfection and will have to retrace these same steps many times. During the past two years, I have worked with IS couples whose infants had Down’s syndrome. It has become evident to me that the amount of information the family received and the manner in which the family was counseled had a direct effect on their ability to cope with the immediate situation and to make a decision best suited for them. There-
fore, the role of the health team is very important. The team caring for this family must begin by studying the characteristics of each couple presented with a Down’s syndrome infant. Certain demographics such as social class and value system should be considered. A mongoloid child may be poorly integrated into an upper class family who place a premium on academic and social achievement. T h e major impact on a family of low socioeconomic class may be that of financial strain and time demand. Certain cultural and religious philosophies may also facilitate incorporation or rejection of a mongoloid.’ The society in which some families move has placed a stigma on the mentally retarded child, causing them to be ashamed and afraid to reach out to friends for help. Mothers are initially more upset by the birth of a female mongoloid, while fathers appear to be more distressed by the birth of a male.3 However, as the child grows, both parents seem to be more affected by a male mongoloid living in the home; they often find their marital relationship improved after outside placement of the child. On the other hand, placement of the female mongoloid in an institution often elicits more guilt and increases friction in the home.4 The age of the child also affects the relationships. T h e needs of an infant mongoloid are not too different from the needs of a normal infant. As the child grows and begins to demonstrate his handicap, the parents must make more adjustments. Impact of Professional Advice
Health team members must realize the impact their advice will have on the decision of parents concerning institutionalization or noninstitutionalization of their mongoloid child. They must also realize the importance of presenting a) an objective, comprehensive view of the child’s condition; b) information on integration of a mongoloid into the family unit; and c) an opportunity for deliberation with the parents. All are necessary in arriving at a course of action that will remain satisfactory to the parents. A follow-up survey (see Table 1) of 15 couples with mongoloid infants shows that families who receive little information and/or mostly subjective inMay/June 1973 JOGN Nursing
formation about mongolism and who did not discuss the situation with professionals, almost always followed the specific advice of their own physician on whether to institutionalize the infant. Under such circumstances, the physician’s advice often proved unsatisfactory in the long run. Five of the couples were initially told by their obstetricians to institutionalize their babies without even seeing them. They did so, but two couples later found this course of action unsatisfactory and within a year reclaimed their babies and integrated them into the family unit. Four couples were told to take their babies home and that “things would work out.” They did not participate in a realistic discussion of what living with their babies would be like. T w o of these couples felt this course of action unsatisfactory and institutionalized their infants within two years. In contrast, a health team discussed both positive and negative aspects of their situation with six couples. Although final decision-making among these six couples took as long as two weeks in some cases, all six have continued with the course of action decided upon after thorough investigation and health team assistance. With correct information, parents’ fears of the unknown are kept within realistic limits. Appropriate rating of their child can facilitate either integration of the child into the family unit or realization of the necessity for placing the child. Counseling of these parents can be viewed as multidisciplinary interaction. It is extremely important that the professionals concerned work together as a team and deliberate with the parents. W e must be aware that although this couple has a problem, they also have strengths, resiliency and the potential to make and sustain their own decisions. T o ensure their emotional and psychologic well-being in the future, the final decision must be theirs. At times we tend to view the postpartum mother as disabled and incapable of making her own decision. Certainly she has had a twofold shock, that of labor and delivery and that of having produced a mongoloid child. But this initial period of disorganization will pass as integration of the total experience is accomplished. W e should not give her advice dur37
Table 1. Relation Between Initial Advice and Final Disposition in 15 Couples With Mongoloid Infants ~
Couple’s initial action No. of couples
Institutionalization
Physician: Parents should have no contact with infant and immediately institutionalize him.
5
5
Physician: Parents should take infant home and things would “work out”. No discussion of realistic home situation and no resource person for family to call.
4
Health team: Presentation of both positive and negative mpects of the child without preference for home or institution.
6
Initial advice or counsel ~
-Infant placed in foster care
-
-
No.
%
2
40
2
50
0
0
~~
ing the period when she is most susceptible and vulnerable. W e must give her time, with a daily opportunity to ventilate her feelings and ask questions.
Counseling the Parents The counseling, or joint deliberation, should begin with a conference that includes just the parents and the obstetrician or pediatrician, but subsequent sessions should include a social worker and nurse. Roles will often overlap, but by meeting as a team we are able to avoid presentation of conflicting information, the most common complaint of parents counseled by various individuals at different times and from different disciplines. Together we can bring our varied professional disciplines into one focus. W e are there first of all to listen, as this can elicit patient verbalization of an unproductive train of thought; we can help the patient recognize its fallacies and achieve better insight into the problem. W e can show the couple that we are ready to assist them in coping with their problem, that they are not alone. W e are capable of ego-sharing or lending our strengths to them. Strength, like other feelings, can be contagious and foster new attitudes of capability. W e must promote communication, not only in the team conference but among the family members themselves. It is often difficult for a husband and wife to ventilate feelings they know will hurt both of them, but this must be learned if a strong marital 38
Took infant home
Couples unhappy with initial action
4
I
4
I
relationship is to be maintained. Continually encouraging them to express their reactions can be done by any of the health team members, or by a clergyman if appropriate. W e can also help the couple focus on their mutual concern for their child by having them talk about their anticipations, fears, and goals for that child. W e need to encourage them to share mutual feelings and to relinquish the assumption of self-blame. The fact that no one can be blamed is difficult for most couples to accept and must therefore be verbalized repeatedly. T h e parents need to have the medical truth and its implications presented sympathetically and, as much as possible, to have it personalized for their own situation. They should not be told only what we think they want to hear. It is unfair to present only the positive or the negative features of the child. W e must attempt to foster independence and increase self-sufficiency. If the couple decides to take their baby home, we should supply further resources. As their child grows, they may need some practical information on behavioral management. They need to know the titles of available books that might be of assistance, such as Dr. Spock’s Caring for your Disabled Child, or Dr. Heisler’s T h e Handicapped Child in the Fanzily, or Dr. Buckler’s Living with a Mentally Retarded Child. They should be put in touch with parent association groups who’s members share their newly acquired insights into dealing with a mongoloid child, available schools for these children, May/June 1973 JOGN Nursing
~
and a follow-up person (doctor, nurse or social worker) whom they can call or visit to discuss current concerns which from time to time will seem overwhelming. Together the medical team can compile names of parent groups, private homes for placement, or whatever is appropriate for the particular couple. The Appendix cites some of the available resources for parents that this author compiled with the assistance of a social worker. All team members need to promote an atmosphere of trust and understanding. Unable to fully comprehend the implications of this experience for this particular family, we must continually encourage the parents to express their feelings so we can understand where they are in the total process of integration. W e need to help them comprehend their child’s condition by strengthening their reality testing and reducing their distortions. W e need to help them realize their inner reactions of disappointment, resentment, humiliation and loneliness. This, in turn, helps them work through the mourning process and master their chronic sorrow. If this does not occur, a couple may be indefinitely tormented by fantasies and distortions and eventually lose their ability to cope with reality. They must be made aware of their human and parental competence and, again, their right not to blame themselves. W e therefore reassure them, not by words like, “Don’t worry, everything will be all right,” but rather by saying, “We admire your courage,” or, “You are doing a splendid job,” which helps to restore their confidence and self-respect. Once a couple has made a decision, regardless of what decision it is, we must support it. Ambivalence will always permeate such an important decision, and we must help them cope with these feelings by supporting their judgment. In regard to institutionalizing a child, health professionals may often make several faulty assumptions. Some believe that a mother should not be allowed to hold, touch and nurture her infant, as she will become “attached” to him. This is a psychologic fallacy. Is she not already attached to this child? H e has been part of her body for nine months and she has certainly made an investment in him. W e must help her substitute the mongoloid child for the expected and desired infant, and this can be done only if the mother is permitted to May/June 1973 JOGN Nursing
participate actively in planning for the child’s care. She should be permitted to nurture him for two reasons: to increase her self-esteem through evidence that she is capable of caring for this child and to decrease her fantasies about the baby. Without reality testing, how can we expect a mother to realistically cope with her feelings of failure and disappointment. If her baby is “put away” and she is told to forget him, she obviously cannot: “It is a fallacy that the retarded child who is out of sight is out of mind . . . and such a step as initial removal can have been foreseen and disastrous consequences for the child and for the family.” W e are aware of the possibly disastrous effects of a decision made prematurely in an atmosphere of catastrophe and complicated by the emotionality of the birth process. Yet, institutionalization is often insisted on during this crucial time. Perhaps this is due to our own preoccupation with social stigma and our lack of information concerning the available resources. Parents must be made aware of what facilities are available so that they can better evaluate their own situation. Certainly institutionalization must be discussed, but perhaps if we present the institution as a future possibility, as a place where the adult retardate could go when his parents are dead, we could first evaluate their reactions to this idea. A couple could be encouraged to visit institutions and homes and then applywaiting lists are often long. Parents then are not committing themselves completely and have time to come to a decision. If a place becomes available and the family has decided to keep the child at home indefinitely, they may reject the place but leave their child’s name on the waiting list. On the other hand, should a crisis situation develop in the home, initial contacts have been made and immediate placement will not be as difficult. Some parents view an institution as “the last resort.” I think it is important that the health care team explain the assets of an institution. The mongoloid child may later need special care that the mother is incapable of rendering, or a crisis situation may arise in the home and removal of the child may be the only answer. Parents should also be aware that they may visit their child in the institution and take him home for visits. This can 39
be comforting for the family who feel they must maintain some contact with their child. The child’s welfare should be discussed. W e are all aware of the impact of maternal deprivation on the infant. Research has revealed that retarded children kept at home for even a year or two have substantially higher I.Q.’s and are better adjusted to group living. They are able to care for themselves and play cooperatively with the other retardates. These children have a right to some of the love and joy we so freely give our normal children, I was delighted to be able to enter the mind of a young mongoloid as I read The World of Nigel Hunt,O written by a mongoloid boy. H e was preoccupied with music, and his surroundings. H e was 11 years old and unable to conceptualize, but truly enjoyed his world. After all, he was unaware of his retardation. H e didn’t know that he was a tragedy, until he saw it in our eyes. Most couples in the group of 15 (TabIe 1) gave three major reasons why they had decided to keep their mongoloid child a t home. First, they felt they could love and care for him better. Second, they felt a certain amount of responsibility for this child. And third, the child contributed much happiness to the family. One mother wrote: W h e n Gregory was first born, I thought it was a life-breaking situation. Now I say only life-shaking. It’s surprising how one can live with such a tragedy and in the end be living a better and happier life for it.
Another parent spoke for parents of mongoloid children in general: One of the favorite themes which permeates our conversation is how much our children have meant to us. T h i s thought runs like a bright golden thread through the dark tapestry of our sorrow. We learn so much from them if w e are not too proud, and the grief of parents leaves little room for pride. W e learn so much in patience, in humility, in gratitude for other blessings we had accepted before as a matter of course . . . so much in compassion for our fellow man . . . so much in wisdom about eternal values of life because the deep agony of spirit is the one thing which can turn us from superficialities . . . to things that really matter . . . W h e r e . . . in this world, could w e go to learn such lessons . . . dealing with the real meaning of life. W h e r e else could we ever learn so much, but from those w h o know so little?”7
My experience has indicated that parents of mongoloid children can be grouped into four general categories. 40
First, there are those who have accepted their mongoloid child without fully understanding or accepting the diagnosis. They have not resolved their feelings. The mother often blames herself for having produced the defective child and is overwhelmed with guilt. In turn, she overindulges her child to continually, superficially assuage this guilt. The second group of parents are those who completely deny the diagnosis. The mother can only view the child’s birth as an intolerable narcissistic wound. T h e experience is too painful for even a superficial integration. T h e complete mourning process is arrested at the initial stage of denial. This mother denies the needs of her child and claims that he is only “a little slow.” The third grciup of parents reject their child, usually a t our suggestion, and institutionalize him at birth, usually without even touching him. This is an intellectual protection that may perhaps indefinitely suppress any expression of true feelings. For some families this can be the only effective way to handle their tragedy. Finally, there are those families who have slowly integrated this new, painful reality into their lives by continually discussing their feelings. They are aware of the areas where they need professional help, understanding from family, or support from friends, and they reach out for it. These families may decide to keep their child a t home, or they may decide this is impossible for them, but in either case it is their own decision, not ours. It seems evident there are intrafamilial, intrapsychic and situational factors involved in every family’s method of integrating a mongoloid baby. Professional people can facilitate this integration, through joint deliberation and respect for the individual family. This surely is the “art of medicine.” Appendix: Resources for Parents 1. Association for Children with Mental Retardation 902 Broadway, New York, NY 10010
Director, Mrs. Ida Rappaport 2. Association for Health of Retarded Children 2709 Avenue East, Arlington, T X 7601 1 Director, Mr. Phillip Roos 3. Association for Health of Retarded Children (AHRC) Parents Assistance Committee, 95-06 120th St, Richmond Hill, NY 11419; Chairman, Mrs. Frances Grace
4. The Council for Exceptional Children 1411 S Jefferson Davis Highway, Arlington, VA 22202 5. Dept. of Health, Education and Welfare, Children’s Bureau Maternal and Newborn Services, Washington, DC 20402
May/June 1973 JOGN Nursing
6. Educational Guidance Center for Retarded Children, fnc. 441-445 West 47th Street, New York, NY 10036 Director, Mrs. Pearl Coffee 7. March of Dimes 315 Park Avenue South, New York, NY 10010 8. Mongoloid Development Council 148 Scharer Avenue, Northvale, NJ 07647 Vice President, Mrs. Edward Purtill 9. National Association for Mental Health 1800 North Kent Street, Rosslyn, VA, 22209 10. New York State Dept. of Mental Hygiene Metropolitan Mental Retardation Clinic 75 Morton Street, New York, NY; Director, Dr. Cyrus Stimson 11. Retarded Infant’s ServiFe 386 Park Avenue South, New York, NY 10010 Director, Mrs. Arnold 12. Staten Island Aid for Retarded Children 1150 Castleton Avenue, Staten Island, NY 10310 Executive Director, Doris Kirkwood
References On Death and Dying. New York, The Macmillan Co., 1969 Farber, B.: “Effects of a Severely Retarded Child on Family Integration.” SOCRes Child Dev 24:2, 1959 Stubblefield: “Religion, Parents and Mental Retardation.” Ment Retard 3:8-11, 1965 Felzen, E.: Mothers’ Adjustment to Their Mongoloid Children. Thesis, 1970, Cornell University Slobody, L., and J. Scanlan: “Consequences of Early Institutionalization.” Am J Ment Defic 63: 971-974, 1959 Hunt, N.: T h e World of Nigel Hunt. New York, Garrett Publications, 1967 Murray, M. A.: Needs of Parents of Mentally Retarded Children. Arlington, Texas, National Association for Retarded Children, 1972
1. Kubler-Ross, E.:
2. 3. 4.
5.
6. 7.
Heisler, V.: T h e Handicapped Child in tbe Family: A Guide for Parents. New York, Grune & Stratton, Inc., 1972 Illingworth, R.: “The Abnormal Baby.” Nurs Mirror 1963: 135-137, 8 NOV Jacobs, J.: T h e Search for Help. New York, BrunnerJMazei Publishers, 1969 Kramm, E.: Families of Mongoloid Children. US. Department of Health, Education and Welfare, Welfare Administration, Children’s Bureau, 1963 Kugel, R.: “A Comparison of Mongoloid Children.” J A M A 175:959-961, 1961 Linder, R.: “Mothers of Disabled Children-The Value of Weekly Group Meetings.” Dev Med Child Neurol 12:202207, 1970 Parmalee. A.: “The Doctor and the Retarded Child.” Children ~:139-1’93,1962 Schonel. F.. and B. Watts: “A First Survev of the Effect of the Subnormal Child on the Family Unit.‘’ Am J Ment Defic 63:971-974, 1959 Solnit, A., and M. Stark: “Mourning the Birth of a Defective Child.” Psychoanal Study Child 16:523-538, 1961 Spock, B. M., and M. 0. Lerrigo: Caring for Your Disabled Child. New York, The Macmillan Co., 1965 Stimson, C.: “Understanding the Mongoloid Child.” Today’s Health 1971 Waechter, E.: “The Birth of the Exceptional Child.” Nurs F o r m 2:202-216, 1970 Zwerling, I.: “Initial Counselling of Parents With Mentally Retarded Children.” J Pediatr 44:469-479, 1954 Address reprint requests to Mrs. Fritzi Kallop, RN, Nurse Clinician, New York Lying In Hospital, 535 East 70th Street, New York, NY 10021
Supplemental Bibliography Bakwin, H.: “Informing Parents of the Mentally Retarded Child.” J Pediatr 49:486-498, 1956 Benda. C. E.: T h e Child with Mon.polism. New York, Grune & Stratton, 1960 Breg, M. D.: “Family Counselling in Down’s Snydrome.” A n n NY Acad Sci 1970:645-688 Buckler, B.: Living with a Mentally Retarded Child. New York. Hawthorn Books. Inc.. 1971 Cadden; V.: “A Special Child Indeed.” McCall’s Jan 1972 Carr, E., and T. Oppe: “The Birth of an Abnormal Child: Telling the Parents.” Lancet 1971-11: 1075-1077 Carr, J.: “Mongolism: Telling the Parents.” Dev Med Child Neurol 12:213-221, 1970. Cohen, P.: “The Impact of the Handicapped Child on the Family.” Social Casework 43: 137-142, 1962 Covert, C.: Mental Retardation: Chicago, American Medical Association Conference, 1964 D’Arcy, E.: “Congenital Defects.” Nurs Times 65: 1421-1423, 1969 Dybwad, G.: “The Mentally Handicapped Child Under Five.” Lecture, reprint by Pioneer Mass Inc. Ehlers, W.: Mothers of RetardedChildren. Springfield, Illinois, Charles C Thomas, Publisher, 1966 Evans, K., and C. Carter: “Care and Disposal of Mongoloid Defectives.” Lancet 267:960, 1954 Franklin, A.: “Telling the Family.” NUTSMirror 1963:117-121, 1 Nov Giannini, M., and L. Goodman: “Counselling Families During the Crisis Reaction of Mongolism.” Am J Ment Defic 67: 740-747, 1963 Greenberg, R. “Mongol Births and Young Mothers.” Nurs Mirror 1963:59-61, 18 Oct May/June 1973 J O G N Nursing
Debornb (Fritzi) Kallop is an OGN Nzirse Clinicinn and Instriictor of Pnrent Edzication nt Cornell Medical Center in N e w York, where she forwerly worked ns n genernl staff nurse in labor and delivery. She Folds n RS from Cornell University-New Y o r k Hospitd School of N ~ i r s i n g , an A A S frovi Brinrcliff Coilege in Scarboro@, N e w York. and (I d i p l o m ~from B r y n Almcr School, Rnltiixore, Mnrylnnd. She also earned a teircher certificnte on completion of the Ln.wrme Trnining Program of the Americnn Society for Psychopropbyln.~isin Obstetrics, nnd is a member of thnt orgnnization. She is nlso n m w b e r of the A N A , N A A C O G , and Signin Thctrc Tnri, honornry nurses’ society, Mrs. Knllop is the nuthor of “Preoperntive Instruction for the Pntient Undergoing Elective Abortion,” pziblished in Clinical Obstetrics and Gynecology, Mnrch 1971.
4’
In today’s world of automation, increased technology and complexity, there still remains one universally humbling experience-birth. Having taught the Lamaze method of childbirth for several years, I have become acquainted with many of the husbands and wives during the sixweek Lamaze course and during their labor and delivery experience. I would like to quote one father from whom I recently received a note describing the first few moments after the birth of his son: W e looked at Peter together, and I felt a sense of ecstacy, love and warmth for Kitty [his wife] that seemed palpable and alive, stronger than I had known before. W e had made this baby together. I never wanted to forget any of it. It was a miracle.
Upon receiving this note, I went to visit them. They both sat quietly, Kitty crying softly, her husband resting his head in his hands. As I soon learned, the “miraculous” birth had suddenly become a devastating and overwhelming experience. Their son Peter was found to have Down’s syndrome (monogolism) . Perhaps many of us on the health care team take the miracle of normal birth for granted. Many fail to work effectively with the particularly devastated parents of a baby with Down’s syndrome. Is it because we do not understand the emotional and psychologic process through which this couple must 36
pass? Is it due to our own feelings of inadequacy because we cannot cure or change the mongoloid child? O r is it our lack of information combined with our own limited personal views of mongolism? I feel our inadequacy results from a combination of all of these factors.
The Process of Acceptance T h e literature describes the process of acceptance of an imperfect child as slow and tedious, involving many factors. (see “References” and “Supplemental Bibliography”) T h e mother’s prenatal expectations must be considerably altered when she grasps the reality of an incurably defective child. She must then begin the process of slow absorption and eventual integration of this new and painful experience. T h e health care team working with this mother can often observe her stages of denial, anger, bargaining, depression and, finally, acceptance.’ Permeating all of these phases are the “postpartum blues,” the mother’s mourning for the part of her own body, the infant, that is now gone. If this “part” is defective, the infant may constitute a blow to the mother’s ego. Final acceptance of this child is not a joyful experience. It is resignation with an awareness and understanding of loss and feelings of disappointment. T h e mourning process is never complete. Continually in the future, the family will be reminded of the imperfection and will have to retrace these same steps many times. During the past two years, I have worked with IS couples whose infants had Down’s syndrome. It has become evident to me that the amount of information the family received and the manner in which the family was counseled had a direct effect on their ability to cope with the immediate situation and to make a decision best suited for them. There-
fore, the role of the health team is very important. The team caring for this family must begin by studying the characteristics of each couple presented with a Down’s syndrome infant. Certain demographics such as social class and value system should be considered. A mongoloid child may be poorly integrated into an upper class family who place a premium on academic and social achievement. T h e major impact on a family of low socioeconomic class may be that of financial strain and time demand. Certain cultural and religious philosophies may also facilitate incorporation or rejection of a mongoloid.’ The society in which some families move has placed a stigma on the mentally retarded child, causing them to be ashamed and afraid to reach out to friends for help. Mothers are initially more upset by the birth of a female mongoloid, while fathers appear to be more distressed by the birth of a male.3 However, as the child grows, both parents seem to be more affected by a male mongoloid living in the home; they often find their marital relationship improved after outside placement of the child. On the other hand, placement of the female mongoloid in an institution often elicits more guilt and increases friction in the home.4 The age of the child also affects the relationships. T h e needs of an infant mongoloid are not too different from the needs of a normal infant. As the child grows and begins to demonstrate his handicap, the parents must make more adjustments. Impact of Professional Advice
Health team members must realize the impact their advice will have on the decision of parents concerning institutionalization or noninstitutionalization of their mongoloid child. They must also realize the importance of presenting a) an objective, comprehensive view of the child’s condition; b) information on integration of a mongoloid into the family unit; and c) an opportunity for deliberation with the parents. All are necessary in arriving at a course of action that will remain satisfactory to the parents. A follow-up survey (see Table 1) of 15 couples with mongoloid infants shows that families who receive little information and/or mostly subjective inMay/June 1973 JOGN Nursing
formation about mongolism and who did not discuss the situation with professionals, almost always followed the specific advice of their own physician on whether to institutionalize the infant. Under such circumstances, the physician’s advice often proved unsatisfactory in the long run. Five of the couples were initially told by their obstetricians to institutionalize their babies without even seeing them. They did so, but two couples later found this course of action unsatisfactory and within a year reclaimed their babies and integrated them into the family unit. Four couples were told to take their babies home and that “things would work out.” They did not participate in a realistic discussion of what living with their babies would be like. T w o of these couples felt this course of action unsatisfactory and institutionalized their infants within two years. In contrast, a health team discussed both positive and negative aspects of their situation with six couples. Although final decision-making among these six couples took as long as two weeks in some cases, all six have continued with the course of action decided upon after thorough investigation and health team assistance. With correct information, parents’ fears of the unknown are kept within realistic limits. Appropriate rating of their child can facilitate either integration of the child into the family unit or realization of the necessity for placing the child. Counseling of these parents can be viewed as multidisciplinary interaction. It is extremely important that the professionals concerned work together as a team and deliberate with the parents. W e must be aware that although this couple has a problem, they also have strengths, resiliency and the potential to make and sustain their own decisions. T o ensure their emotional and psychologic well-being in the future, the final decision must be theirs. At times we tend to view the postpartum mother as disabled and incapable of making her own decision. Certainly she has had a twofold shock, that of labor and delivery and that of having produced a mongoloid child. But this initial period of disorganization will pass as integration of the total experience is accomplished. W e should not give her advice dur37
Table 1. Relation Between Initial Advice and Final Disposition in 15 Couples With Mongoloid Infants ~
Couple’s initial action No. of couples
Institutionalization
Physician: Parents should have no contact with infant and immediately institutionalize him.
5
5
Physician: Parents should take infant home and things would “work out”. No discussion of realistic home situation and no resource person for family to call.
4
Health team: Presentation of both positive and negative mpects of the child without preference for home or institution.
6
Initial advice or counsel ~
-Infant placed in foster care
-
-
No.
%
2
40
2
50
0
0
~~
ing the period when she is most susceptible and vulnerable. W e must give her time, with a daily opportunity to ventilate her feelings and ask questions.
Counseling the Parents The counseling, or joint deliberation, should begin with a conference that includes just the parents and the obstetrician or pediatrician, but subsequent sessions should include a social worker and nurse. Roles will often overlap, but by meeting as a team we are able to avoid presentation of conflicting information, the most common complaint of parents counseled by various individuals at different times and from different disciplines. Together we can bring our varied professional disciplines into one focus. W e are there first of all to listen, as this can elicit patient verbalization of an unproductive train of thought; we can help the patient recognize its fallacies and achieve better insight into the problem. W e can show the couple that we are ready to assist them in coping with their problem, that they are not alone. W e are capable of ego-sharing or lending our strengths to them. Strength, like other feelings, can be contagious and foster new attitudes of capability. W e must promote communication, not only in the team conference but among the family members themselves. It is often difficult for a husband and wife to ventilate feelings they know will hurt both of them, but this must be learned if a strong marital 38
Took infant home
Couples unhappy with initial action
4
I
4
I
relationship is to be maintained. Continually encouraging them to express their reactions can be done by any of the health team members, or by a clergyman if appropriate. W e can also help the couple focus on their mutual concern for their child by having them talk about their anticipations, fears, and goals for that child. W e need to encourage them to share mutual feelings and to relinquish the assumption of self-blame. The fact that no one can be blamed is difficult for most couples to accept and must therefore be verbalized repeatedly. T h e parents need to have the medical truth and its implications presented sympathetically and, as much as possible, to have it personalized for their own situation. They should not be told only what we think they want to hear. It is unfair to present only the positive or the negative features of the child. W e must attempt to foster independence and increase self-sufficiency. If the couple decides to take their baby home, we should supply further resources. As their child grows, they may need some practical information on behavioral management. They need to know the titles of available books that might be of assistance, such as Dr. Spock’s Caring for your Disabled Child, or Dr. Heisler’s T h e Handicapped Child in the Fanzily, or Dr. Buckler’s Living with a Mentally Retarded Child. They should be put in touch with parent association groups who’s members share their newly acquired insights into dealing with a mongoloid child, available schools for these children, May/June 1973 JOGN Nursing
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and a follow-up person (doctor, nurse or social worker) whom they can call or visit to discuss current concerns which from time to time will seem overwhelming. Together the medical team can compile names of parent groups, private homes for placement, or whatever is appropriate for the particular couple. The Appendix cites some of the available resources for parents that this author compiled with the assistance of a social worker. All team members need to promote an atmosphere of trust and understanding. Unable to fully comprehend the implications of this experience for this particular family, we must continually encourage the parents to express their feelings so we can understand where they are in the total process of integration. W e need to help them comprehend their child’s condition by strengthening their reality testing and reducing their distortions. W e need to help them realize their inner reactions of disappointment, resentment, humiliation and loneliness. This, in turn, helps them work through the mourning process and master their chronic sorrow. If this does not occur, a couple may be indefinitely tormented by fantasies and distortions and eventually lose their ability to cope with reality. They must be made aware of their human and parental competence and, again, their right not to blame themselves. W e therefore reassure them, not by words like, “Don’t worry, everything will be all right,” but rather by saying, “We admire your courage,” or, “You are doing a splendid job,” which helps to restore their confidence and self-respect. Once a couple has made a decision, regardless of what decision it is, we must support it. Ambivalence will always permeate such an important decision, and we must help them cope with these feelings by supporting their judgment. In regard to institutionalizing a child, health professionals may often make several faulty assumptions. Some believe that a mother should not be allowed to hold, touch and nurture her infant, as she will become “attached” to him. This is a psychologic fallacy. Is she not already attached to this child? H e has been part of her body for nine months and she has certainly made an investment in him. W e must help her substitute the mongoloid child for the expected and desired infant, and this can be done only if the mother is permitted to May/June 1973 JOGN Nursing
participate actively in planning for the child’s care. She should be permitted to nurture him for two reasons: to increase her self-esteem through evidence that she is capable of caring for this child and to decrease her fantasies about the baby. Without reality testing, how can we expect a mother to realistically cope with her feelings of failure and disappointment. If her baby is “put away” and she is told to forget him, she obviously cannot: “It is a fallacy that the retarded child who is out of sight is out of mind . . . and such a step as initial removal can have been foreseen and disastrous consequences for the child and for the family.” W e are aware of the possibly disastrous effects of a decision made prematurely in an atmosphere of catastrophe and complicated by the emotionality of the birth process. Yet, institutionalization is often insisted on during this crucial time. Perhaps this is due to our own preoccupation with social stigma and our lack of information concerning the available resources. Parents must be made aware of what facilities are available so that they can better evaluate their own situation. Certainly institutionalization must be discussed, but perhaps if we present the institution as a future possibility, as a place where the adult retardate could go when his parents are dead, we could first evaluate their reactions to this idea. A couple could be encouraged to visit institutions and homes and then applywaiting lists are often long. Parents then are not committing themselves completely and have time to come to a decision. If a place becomes available and the family has decided to keep the child at home indefinitely, they may reject the place but leave their child’s name on the waiting list. On the other hand, should a crisis situation develop in the home, initial contacts have been made and immediate placement will not be as difficult. Some parents view an institution as “the last resort.” I think it is important that the health care team explain the assets of an institution. The mongoloid child may later need special care that the mother is incapable of rendering, or a crisis situation may arise in the home and removal of the child may be the only answer. Parents should also be aware that they may visit their child in the institution and take him home for visits. This can 39
be comforting for the family who feel they must maintain some contact with their child. The child’s welfare should be discussed. W e are all aware of the impact of maternal deprivation on the infant. Research has revealed that retarded children kept at home for even a year or two have substantially higher I.Q.’s and are better adjusted to group living. They are able to care for themselves and play cooperatively with the other retardates. These children have a right to some of the love and joy we so freely give our normal children, I was delighted to be able to enter the mind of a young mongoloid as I read The World of Nigel Hunt,O written by a mongoloid boy. H e was preoccupied with music, and his surroundings. H e was 11 years old and unable to conceptualize, but truly enjoyed his world. After all, he was unaware of his retardation. H e didn’t know that he was a tragedy, until he saw it in our eyes. Most couples in the group of 15 (TabIe 1) gave three major reasons why they had decided to keep their mongoloid child a t home. First, they felt they could love and care for him better. Second, they felt a certain amount of responsibility for this child. And third, the child contributed much happiness to the family. One mother wrote: W h e n Gregory was first born, I thought it was a life-breaking situation. Now I say only life-shaking. It’s surprising how one can live with such a tragedy and in the end be living a better and happier life for it.
Another parent spoke for parents of mongoloid children in general: One of the favorite themes which permeates our conversation is how much our children have meant to us. T h i s thought runs like a bright golden thread through the dark tapestry of our sorrow. We learn so much from them if w e are not too proud, and the grief of parents leaves little room for pride. W e learn so much in patience, in humility, in gratitude for other blessings we had accepted before as a matter of course . . . so much in compassion for our fellow man . . . so much in wisdom about eternal values of life because the deep agony of spirit is the one thing which can turn us from superficialities . . . to things that really matter . . . W h e r e . . . in this world, could w e go to learn such lessons . . . dealing with the real meaning of life. W h e r e else could we ever learn so much, but from those w h o know so little?”7
My experience has indicated that parents of mongoloid children can be grouped into four general categories. 40
First, there are those who have accepted their mongoloid child without fully understanding or accepting the diagnosis. They have not resolved their feelings. The mother often blames herself for having produced the defective child and is overwhelmed with guilt. In turn, she overindulges her child to continually, superficially assuage this guilt. The second group of parents are those who completely deny the diagnosis. The mother can only view the child’s birth as an intolerable narcissistic wound. T h e experience is too painful for even a superficial integration. T h e complete mourning process is arrested at the initial stage of denial. This mother denies the needs of her child and claims that he is only “a little slow.” The third grciup of parents reject their child, usually a t our suggestion, and institutionalize him at birth, usually without even touching him. This is an intellectual protection that may perhaps indefinitely suppress any expression of true feelings. For some families this can be the only effective way to handle their tragedy. Finally, there are those families who have slowly integrated this new, painful reality into their lives by continually discussing their feelings. They are aware of the areas where they need professional help, understanding from family, or support from friends, and they reach out for it. These families may decide to keep their child a t home, or they may decide this is impossible for them, but in either case it is their own decision, not ours. It seems evident there are intrafamilial, intrapsychic and situational factors involved in every family’s method of integrating a mongoloid baby. Professional people can facilitate this integration, through joint deliberation and respect for the individual family. This surely is the “art of medicine.” Appendix: Resources for Parents 1. Association for Children with Mental Retardation 902 Broadway, New York, NY 10010
Director, Mrs. Ida Rappaport 2. Association for Health of Retarded Children 2709 Avenue East, Arlington, T X 7601 1 Director, Mr. Phillip Roos 3. Association for Health of Retarded Children (AHRC) Parents Assistance Committee, 95-06 120th St, Richmond Hill, NY 11419; Chairman, Mrs. Frances Grace
4. The Council for Exceptional Children 1411 S Jefferson Davis Highway, Arlington, VA 22202 5. Dept. of Health, Education and Welfare, Children’s Bureau Maternal and Newborn Services, Washington, DC 20402
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6. Educational Guidance Center for Retarded Children, fnc. 441-445 West 47th Street, New York, NY 10036 Director, Mrs. Pearl Coffee 7. March of Dimes 315 Park Avenue South, New York, NY 10010 8. Mongoloid Development Council 148 Scharer Avenue, Northvale, NJ 07647 Vice President, Mrs. Edward Purtill 9. National Association for Mental Health 1800 North Kent Street, Rosslyn, VA, 22209 10. New York State Dept. of Mental Hygiene Metropolitan Mental Retardation Clinic 75 Morton Street, New York, NY; Director, Dr. Cyrus Stimson 11. Retarded Infant’s ServiFe 386 Park Avenue South, New York, NY 10010 Director, Mrs. Arnold 12. Staten Island Aid for Retarded Children 1150 Castleton Avenue, Staten Island, NY 10310 Executive Director, Doris Kirkwood
References On Death and Dying. New York, The Macmillan Co., 1969 Farber, B.: “Effects of a Severely Retarded Child on Family Integration.” SOCRes Child Dev 24:2, 1959 Stubblefield: “Religion, Parents and Mental Retardation.” Ment Retard 3:8-11, 1965 Felzen, E.: Mothers’ Adjustment to Their Mongoloid Children. Thesis, 1970, Cornell University Slobody, L., and J. Scanlan: “Consequences of Early Institutionalization.” Am J Ment Defic 63: 971-974, 1959 Hunt, N.: T h e World of Nigel Hunt. New York, Garrett Publications, 1967 Murray, M. A.: Needs of Parents of Mentally Retarded Children. Arlington, Texas, National Association for Retarded Children, 1972
1. Kubler-Ross, E.:
2. 3. 4.
5.
6. 7.
Heisler, V.: T h e Handicapped Child in tbe Family: A Guide for Parents. New York, Grune & Stratton, Inc., 1972 Illingworth, R.: “The Abnormal Baby.” Nurs Mirror 1963: 135-137, 8 NOV Jacobs, J.: T h e Search for Help. New York, BrunnerJMazei Publishers, 1969 Kramm, E.: Families of Mongoloid Children. US. Department of Health, Education and Welfare, Welfare Administration, Children’s Bureau, 1963 Kugel, R.: “A Comparison of Mongoloid Children.” J A M A 175:959-961, 1961 Linder, R.: “Mothers of Disabled Children-The Value of Weekly Group Meetings.” Dev Med Child Neurol 12:202207, 1970 Parmalee. A.: “The Doctor and the Retarded Child.” Children ~:139-1’93,1962 Schonel. F.. and B. Watts: “A First Survev of the Effect of the Subnormal Child on the Family Unit.‘’ Am J Ment Defic 63:971-974, 1959 Solnit, A., and M. Stark: “Mourning the Birth of a Defective Child.” Psychoanal Study Child 16:523-538, 1961 Spock, B. M., and M. 0. Lerrigo: Caring for Your Disabled Child. New York, The Macmillan Co., 1965 Stimson, C.: “Understanding the Mongoloid Child.” Today’s Health 1971 Waechter, E.: “The Birth of the Exceptional Child.” Nurs F o r m 2:202-216, 1970 Zwerling, I.: “Initial Counselling of Parents With Mentally Retarded Children.” J Pediatr 44:469-479, 1954 Address reprint requests to Mrs. Fritzi Kallop, RN, Nurse Clinician, New York Lying In Hospital, 535 East 70th Street, New York, NY 10021
Supplemental Bibliography Bakwin, H.: “Informing Parents of the Mentally Retarded Child.” J Pediatr 49:486-498, 1956 Benda. C. E.: T h e Child with Mon.polism. New York, Grune & Stratton, 1960 Breg, M. D.: “Family Counselling in Down’s Snydrome.” A n n NY Acad Sci 1970:645-688 Buckler, B.: Living with a Mentally Retarded Child. New York. Hawthorn Books. Inc.. 1971 Cadden; V.: “A Special Child Indeed.” McCall’s Jan 1972 Carr, E., and T. Oppe: “The Birth of an Abnormal Child: Telling the Parents.” Lancet 1971-11: 1075-1077 Carr, J.: “Mongolism: Telling the Parents.” Dev Med Child Neurol 12:213-221, 1970. Cohen, P.: “The Impact of the Handicapped Child on the Family.” Social Casework 43: 137-142, 1962 Covert, C.: Mental Retardation: Chicago, American Medical Association Conference, 1964 D’Arcy, E.: “Congenital Defects.” Nurs Times 65: 1421-1423, 1969 Dybwad, G.: “The Mentally Handicapped Child Under Five.” Lecture, reprint by Pioneer Mass Inc. Ehlers, W.: Mothers of RetardedChildren. Springfield, Illinois, Charles C Thomas, Publisher, 1966 Evans, K., and C. Carter: “Care and Disposal of Mongoloid Defectives.” Lancet 267:960, 1954 Franklin, A.: “Telling the Family.” NUTSMirror 1963:117-121, 1 Nov Giannini, M., and L. Goodman: “Counselling Families During the Crisis Reaction of Mongolism.” Am J Ment Defic 67: 740-747, 1963 Greenberg, R. “Mongol Births and Young Mothers.” Nurs Mirror 1963:59-61, 18 Oct May/June 1973 J O G N Nursing
Debornb (Fritzi) Kallop is an OGN Nzirse Clinicinn and Instriictor of Pnrent Edzication nt Cornell Medical Center in N e w York, where she forwerly worked ns n genernl staff nurse in labor and delivery. She Folds n RS from Cornell University-New Y o r k Hospitd School of N ~ i r s i n g , an A A S frovi Brinrcliff Coilege in Scarboro@, N e w York. and (I d i p l o m ~from B r y n Almcr School, Rnltiixore, Mnrylnnd. She also earned a teircher certificnte on completion of the Ln.wrme Trnining Program of the Americnn Society for Psychopropbyln.~isin Obstetrics, nnd is a member of thnt orgnnization. She is nlso n m w b e r of the A N A , N A A C O G , and Signin Thctrc Tnri, honornry nurses’ society, Mrs. Knllop is the nuthor of “Preoperntive Instruction for the Pntient Undergoing Elective Abortion,” pziblished in Clinical Obstetrics and Gynecology, Mnrch 1971.
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