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Tough choice.

When Andy was born, our pediatrician advised us to "treat your baby like any other child" in spite of his Down syndrome, so we assumed Andy would spend his childhood in our home and then work in the community where we live. Andy attended an integrated preschool and elementary school and the YMCA welcomed him into their after-school day-care program, including him in basketball and swimming lessons for young children.

All Was Not Well

But when Andy was in third grade, he let us know that all was not well. Day after day, his teacher and classroom aide reported that he was withdrawing when other children tried to become his friends. He hung his head whenever I asked about it. As the year progressed, Andy began refusing to do his modified schoolwork. Instead, he demanded the exact same work his classmates were doing, even though he had no hope of understanding it. When I asked him how school was going, his frequent reply was, "I'm not smart, Mom." Often, he would shuffle to and from school, head down, looking sad. We took him to visit a child psychiatrist who felt that Andy was depressed. He started Andy on medication on a trial basis.

Andy's teacher tried to help him work on self-esteem issues. Every day, he was supposed to write about at least one good thing he had done that day, but he usually refused. His aide helped him write stories about the pets brought in from the high-school animal lab, attempting to get him to relate to animals if people were too smart or too quick for him. Andy loved the pets and the books but he still withdrew from his peers. He sat in the road on several occasions, saying he wanted to die.

As his depression worsened, Andy began destroying things he knew each of us cherished. He took a model his brother Chris had been working on and stomped it flat. Two days later, he pushed my husband Carter's word processor off its stand, breaking the monitor. The next morning, he scratched my new car and then left the door open so that the light would run down the battery. Our cheerful preschooler had become a very, very angry nine-year-old.

Running Away

Then he started running away. At first he said, "I want to see the trains," and we believed him because he usually ended up near the train tracks about two miles from our home. We took him for a train ride on his birthday, with the understanding that he would not run away to the trains again. Two hours after we returned, he disappeared. This time a neighbor found him riding his bicycle against traffic on a very busy street a mile from home. During the next two weeks, he escaped five times to play in the busy street. When we locked him in his room at night, he cut his screen and jumped out the window. When I tried to talk to him about how dangerous his behavior had become, he only laughed.

On a day that gave me nightmares for weeks, a car sped into our driveway. I ran out in time to hear the driver shout, "Andy's riding in the middle of the highway and I can't get him to pull over!" Carter and I jumped into our respective cars. I spotted him first, riding straight into the oncoming cars. I pulled over and screamed," Andy, get over here!" Grinning, Andy went around me and narrowly missed being hit by Carter. Something inside me snapped and my memory of how we got Andy over to the side of the road is completely blank. The next thing I remember is loading his bike into the back of the station wagon.

We hung his "wheels" from a hook in the garage, but six hours later, while we thought he was in bed sleeping, he released the chain locks on our doors, ran barefoot to the highway and was standing in the middle of it when the police called. By 5:30 the next morning, Andy had run away again, this time nearly getting hit by a bus. He laughed when I tried to convince him that he could have been killed. He appeared not to believe me. Or perhaps his anger had turned inward.

Hospitalization

Andy's psychiatrist agreed that he needed immediate hospitalization since he was clearly a danger to himself and possibly others if he caused a car accident. After a week in the children's unit of a psychiatric hospital, the doctor modified his diagnosis -- Andy had manic-depressive illness and it was in the severe range.

He remained in the hospital for five weeks while his doctor adjusted medications. The staff took him on several outings to see if he would run away. He didn't. Still, I lived in terror that once he was discharged, he would go out and get himself killed. I had nightmares and flashbacks to the day I saw him riding into traffic. The insurance company called the hospital every other day to campaign for Andy's release.

We met with several agency people in an attempt to plan for Andy's life after discharge. Yes, we would have respite care a few days a week and yes, we could put him in a day camp when respite care ran out and in an after-school program when school was in session. But Andy had refused friendships with children who did not have disabilities.

Weekends were long and lonely for him. I had tried to get volunteers to take him out for recreational activities, but they either quit after a few weeks or never showed up at all. Doing the job ourselves, in addition to the constant vigil for his safety, was becoming stressful beyond belief.

Residential School

Shortly after Andy's discharge from the hospital, we toured a private, residential school for children and adolescents with cognitive delays. We saw the home-like area where Andy would eat, sleep and play with 19 other boys. Andy immediately asked for a top bunk, as if he had already been accepted for admission. We learned that he would swim three times a week in their large, heated pool and that he could play his beloved basketball in gym class and after school with regularity. Participation in recreational activities would no longer depend on people who were well-meaning, but had nevertheless come and gone from Andy's life at will, leaving a puzzled and hurt child whose self-esteem was sinking lower by the day. Woodworking, a hobby he had learned to love at home, would be part of his daily schooling. After school and on weekends there would be Special Olympics, Cub Scouts, field trips to sporting events, miniature golf and nature hikes.

Vocational training would begin upon admission and intensify as Andy grew older. He was fascinated by the former residents who worked on campus as groundskeepers, classroom aides, cafeteria workers, greenhouse workers and farm workers. As he became ready, the staff would rotate Andy through various jobs to see where his aptitudes and likes were and help him train for a job either on the campus or in nearby communities. Andy's comment at the end of the tour was, "I want to come here. I have work to do."

Following the tour, we applied for admission. The admissions committee agreed to let Andy attend the school on the condition that he not run away, since the school does not have fences or locked doors. For every mile of the 38 miles from our door to his new school, Andy asked how much longer it would be. He could not wait to begin the new life he instinctively knew would be a better one for him.

Andy Improves

After three weeks, a letter arrived from the school. I knew that it contained a report on Andy's progress and I hardly dared to open it. To my immense relief, the news was good. He was slowly beginning to allow other children to become his friends and starting to participate in classroom activities. He loved the sports program and, best of all, he had not run away even once. Two weeks later, a similar letter arrived, giving more news of steady progress in the same vein.

When Andy had been there six weeks, we visited the school for parent conferences. Both his group parent and his school teacher reported that he had three good friends, was not withdrawing and generally seemed to be enjoying himself. Now it was time for the acid test -- a night at home.

We explained that we would leave his bedroom door open because we knew he was a big boy and that he had learned to stay in bed all night. He agreed. I slept well knowing that he could not escape to the highway -- while Andy was in the hospital, a friend had installed indoor chain locks at the house that could actually be locked into place.

Andy did, however, have a history of melting ice cream all over the floor and stuffing the VCR with crayons at 4:40 a.m. Not this time -- he slept until 6:30 a.m. When I investigated 15 minutes later, he was in the TV room watching cartoons with his brother. I praised him for his grown-up behavior. All weekend he happily played with trucks or went for a walk at the mall, staying with us. He did not ever try to run off or break anything. He behaved like a person whose needs were being met.

Two weeks later, he was officially accepted as a regular student and we received another report. This time it noted that Andy had developed some close friendships and was participating in almost all school activities. He came home for four nights at Thanksgiving and his behavior was much improved. The 10 days at Christmas went equally well. We took him to A Christmas Carol and to see the movie Hook -- he loved them both. It was a joy to spend time with him when we weren't exhausted from simply keeping him alive.

The Right Decision

That winter, I attended a three-hour workshop with other parents from his school. Not one person in our discussion group had thought they would ever need to place their child outside their home. But everyone reported gains in the children's self-esteem, self-care and behavior, and felt that their family had made the right decision.

In June, we received a summary of Andy's IEP goals in addition to the progress report. Andy was still mildly depressed at times and had some inappropriate social behavior, so counseling and a behavior management program were recommended. The school's psychiatrist would keep monitoring his medications. Andy had joined the Sign Singers because he liked signing with his nonverbal friends. Bowling and softball throw would be added to his recreational activities and he would be learning new vocational tasks. Interestingly, we noted that in gym class he was willing to try a variety of activities, but when his group made bimonthly visits to a mainstreamed gym class, Andy preferred to just watch, apparently because things moved too fast for him.

Necessary Choices

Many people with differing abilities work and live in the mainstream of society and it benefits everyone. But not everyone is emotionally able to handle integration. In addition, a dual diagnosis of a psychiatric disorder and cognitive delays can make integration extremely difficult, or -- in Andy's case -- impossible.

It is vital that we not lose sight of the needs of consumers and families who choose a less integrated lifestyle. Assuming that a person with cognitive delays and/or emotional problems will be integrated is as big a mistake as assuming that they will not be integrated. Residential schools can and do better meet the needs of some people, and this choice needs to be available.
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Title Annotation:choosing a residential home for mentally handicapped children
Author:Ayres, Carole Briggs
Publication:The Exceptional Parent
Date:Apr 1, 1993
Words:1980
Previous Article:The miracles of Brea.
Next Article:Preserving human dignity.
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