Parents Of Retarded Worry About New Trend

(EDITOR'S NOTE: In a #- ■ ut series in The News' Dinsions pages, Ms. Gersten„_rger explored the progress and problems locally of "community placement," a new trend in mental health care which involves the release of certain mentally retarded and , mentally ill adults from i tutions to smaller community j facilities such as group homes and adult foster care homes. In this follow-up article, several parènts whose mentally retarded children have been institutionalized most of their lives express some of their fears and concerns about this new development.) What do you do if you have a brain-injured, mongoloid or retarded child? """" It is not an affliction that goes away, in ostrich-fashion, if you ignore it. You can't bury your head in the sand and retreat from it; rather, it is something with which you must cope. For some parents, this means keeping the child at home in a sheltered kind of existence. Especially for the parents having to cope with this problem in former years, when outside aid was almost nonexistent, that was it- having the child at home and hoping the neighbors didn't mind or make fun of the child. The parents, with children who are adults now, didn't have the opportunity to make use of mandatory special education programs available to today's new parents of babies which are mentally retarded or have related disabilities. The other alternative for these parents in the past was institutionalization- if not immediately after birth- in the first few years of the child 's life, often at the advice of physicians who had seen the baby in the nursery and had diagnosed its problems before it was sent home. - . One mother says, looking back at her decisión to institutionaüze her newborn, "The doctors were totally insensitive They told me my child should be put in an institution _yet institutions are totally unprepared to care for retardjed adults. So doctors have to Take on some of the burden we ffeel now in having our chilIdren (who are adults now) being placed in community living f acilities." She talks, too, of her belief that in making the decisión for institutionalization, she feit she had been treated as ii she cared less for this child. "Institutionalization may be a relief for a father," she says, "but a mother is a mother always. You never get over it and are saddened by having to copewithit." She adds that anyone who says that parents institutionalize such children because they don't love them or accuses them of loving these children less than their other children, has never spoken with mothers of the brain-injured, the mongoloid or the retarded. Rather, she says, their love, combined with anguish at their child's plight and desperation with having to cope with families comprised of anywhere from one to five additional children, has lee them to this route. Without in stitutionalization, the life of every other member of the family would be almost totally disrupted. "Sometimes a whole family is ruined," she says, "living desperate lives with retarded children at home." One mother who has kept her retarded son at home comments on the disruption in the "happy family life scheme" presented by this fact: - "My other children - I ïave three other sons - have i lever been allowed to pate in after-school activities because I always had to be home with my one son. And I suppose I feel guilty about that But, on the other hand, she says, "they have all become very kind and generous because of having him at home with them." Two other mothers, who sought institutionalization on-. ly after having had their children home for the first one or two years of their lives speaK of nightly occurrences of the child awakening screaming. Or when there was no night spent without the fear that the child would awaken in an epileptic seizure - "Sometimes they were petit mal and sometimes they were grand mal - you never knew wnat was coming." "It was a very hystencal time," recalls one mother who had her own mother and another sister with her to help care for the young child. "We were all screaming at one another, Til take care of him.' 'No, Til take care of him.' But I suppose "as helpful," she says in retfospect, although a bit ruefully, "to have others around supportingme." i Their concerns dont i crease as the child becomes older, they say. Rather, they become greater. A small, retarded or brain-damaged child frequently evokes sympathy (both for the parent and the child). There's a completely dtfierent feeling from the neighbors and the community at large , toward an older, more physically mature child who doesn't understand his or her own sexuality, and who, because of his or her larger size has greater strength and thus the potential for harming another memberofsociety Alarm increases for these mothers, they say, when they are faced with seeing their formerly institutionalized children released to community üving facilities or foster care homes. One mother tells about her daughter who has an IQ of 47, who doesn't understand her own sexuality and who feels that if she sits next to a boy she will become pregnant - not because the mother hasn't triedto explain the facts of life to her. Tve spent years trying to explain these things to her," she points out. "My concerns are that she would become a pawn for the first person who carne along who was interested in her sexually. She likes the attentions of raen but she is afraid of them. 'Tve inquired about the possibility of sterilization for her with state medical people and with private ;ians," she says. "She is ■ tally unable to care for a child 1 Qf her own. I "But there's no hope tor i sterilization unless she I tarily accepts it. In trying to I explain to her why she should I be sterilized, I'd have to work I with a social worker who would say, 'No - no way should she be sterilized. The rights of the individual cannot be violated in this way.' "My daughter has the nght to vote, too," the mother says, Tve taken her to a polling place and tried to teach her her responsibilities as a citizen. And I'm sure she would pull any lever asked of her by anyone who took her there - even to pull her lever against voting for sterilization, if it were on the ballot." ______ 'Anyone who says parents institutionalize a brain-injured or retarded child bedause they don't love them has never spoken to these mothers.' It is a special traedy, these nothers agree, to have lurking in the background, the possibility of having to help raise an unwanted grandchild. "At 70," oné mother says quietly, "I don't need this kind of problem. And they teil us our daughters can take birth control pills, but a person who is subnormal mentally can't always remember to take the pill. "Sterilization was the one hope we could hang our hats on." Another mother exclaims, "Community placement for my adult child is a dirty word to me. My daughter has been institutionalized since she was one year old; she's 28 now. The supervisor of community placement several years ago told me, Tra sure neither your child nor you will benefit from this. No place in the community can take care of your child.' " Her child, she says, doesn't recognize her own clothes and it is out of the question, if she should get lost, for her to ask directions about how to get back to her home because her speech is not comprehensible to most persons outside of her family. What is the reaction of a mental health care professional to these mothers' concerns? Dr. Sheila Baler of the Washtenaw County Community Mental Health Center says, I "The basic issue most tunately in the past, was that there were very few options or alternatives available for people faced with severely atypical children in the family." She agrees that for these parents the only two opticns were handling the child completely within the family or moving the child to a longterm care institution. Now, she says, "the goal is toward more different kinds of options for a very varied population." The population of the mentally ill and the mentally retarded, she points out, is not homogeneous. "Among two or four persons tested out at the same IQ, there will be many large differences and many different living arrangements which might be beneficial to them." Choices have to be made for varying life style arrangements, she says, on an individual, person-by-person basis among group living facilities in the community, weckend visits to their homes frorn institutions, nursing hnnvs nr foster care situa- tions as well as long-term care institutions. "It's difficult for the parents and for the professionals involved," she points out, "to try to assess clearly what possibilities are available in the community and which ones are most appropriate for any one individual. "It's a scary kind of task. But we have to lead with our hopes instead of with our ! fears." Over time, she says, community groups, parents and professionals will be able to work together to figure out the possibilities in living choices. "Hopefully, the outcome will be more preferable for the people involved than just having the two choices they had in the past. "Things are slightly improving," she notes, "but the state of the program is in a bud-like stage. "We need to devise living facilities with a wider variety of situations people can be happy and secure in. "Our goal," she says, "is to try to find the best set of circumstances for everyone." 'She doesn't understand her own sexuality and feels that if she sits next to a boy she will become pregnant. She likes the attentions of men but is afraid of them.'