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"What am I supposed to tell Julie? Adolescence and the family.

My 16-year-old daughter asked me why she couldn't attend school with the other neighborhood kids rather than go to the special school she has been in since the seventh grade." Mr. Anderson, a tall, white-haired man in his early 60s, spoke dejectedly.

"I told her last winter that she was going to attend classes at the high school. But in June we got a letter from the high school principal telling us that Julie's program was going to be cut back because of financial problems. Julie's 16 and was born with physical disabilities. She's also developmentally delayed. All of us, my wife Betty and our older kids, have worked together to make sure Julie always had the best possible chance to grow up and learn. She's made steady progress each year. This year she was going to start a program at the high school that was very job-oriented.

"Betty and I made an appointment to see the superintendent of schools. Mr. Daniels said that he couldn't do anything, but he held a meeting for all the families whose children were affected. At the meeting he said he was trying to be fair and that there were cutbacks in every program in the school district. As a result, not only would our youngsters not go to the high school, but at the special school the class size would increase to almost 20 students. He couldn't promise the classes would be of the same quality as the year before, but they would do their best. He took some questions from the group but he certainly wasn't very pleasant in responding to them. Ultimately, he said that if we thought we could find better programs in other communities then maybe now was the time to consider it.

"For years, this school system has been terrific. I don't know what's happened in the last three years. I'm angrier at Mr. Daniels than I am at the community that doesn't want to pay for schools. But what can we do?

"It's shame because Julie has progressed so far. She keeps asking me why she can't go to the high school, and I just get more upset. She's asking us why she can't do the things her older sister did when she was 16. She wants to go places by herself -- to the mall, to the movies at night, to buy her own clothes. I don't know what to tell her -- she won't stop asking. I find myself angry at her, myself, everyone. Betty keeps telling me we'll be about to somehow figure out what to do. But it's not clear to me what that is. What's even worse is that I feel overwhelmingly sad so much of the time. I feel like crying and I can't control myself. Not only have I been fighting at work, I've snapping at everybody at home. I know our older kids don't like to come visit anymore.

"Our son, bill, who's 30, lives in the next town over. Our other son, Joey, is 25, and lives nearby as well. Jeanie still lives at home and goes to the community college. We used to have happy times at home, but it seems since June everybody is sort of sitting there looking at me. It just seems wrong. What am I supposed to tell Julie if she asks me why her school program has changed so much? How can I tell her I can't do anything about what she wants?

"Right now everybody's more worried about Steve than Julie." Mrs. Anderson, a short, slender woman in her mid-50s, spoke quietly. "Even Julie is concerned about her dad. She feels very badly about how upset he is. She keeps asking us if it's her fault. I'm not sure that assigning blame is very helpful.

"It's not his fault that he can't do everything Julie wants. He's always been a good father -- a soft touch for all our children. Julie asks for things, but she doesn't get upset when she doesn't get them. Of course, Steve and I have difficulty explaining to her how concerned we are about her doing things by herself. We're afraid she'll be taken advantage of by some stranger.

"When Julie was born I think we spent a little time feeling sorry for ourselves, but then we saw we had a job to do. And we have a terrific family -- everybody has pitched in and helped. We always had baby sitters, people to play with Julie and people to introduce her to things in the community.

One of the questions we're now face with is what are we going to do next with Julie? This was on our minds even before the school cutbacks. Steve is 61 and he's been thinking about retiring early from his company in about two years. We have two kids out of the house; pretty soon Jeanie is going to go too. We'd like to know what's going to happen to Julie.

"On the other hand, if somebody had told me how far Julie would progress when she was born, I wouldn't have worried so much when she was younger. Now there are adult programs in the community; there are some real job opportunities and even special housing programs that she should be able to live in ultimately. We know her brothers and sister will always help. When I say that to Steve, he now says, "What makes you think they're not going to cut back those programs as well?" I don't know what to say. But I do have faith in what Julie has already learned and accomplished.

"I think Steve also felt that he could do anything -- he's really done so much already. It does make us all feel helpless when the programs we depend on are cut for what seems like no apparent reason.

"You know, one of the reasons Steve and I stayed here, even when he was offered better jobs elsewhere, was because the community was so good. Steve is now saying -- and I can definitely understand why -- that if he had taken one of the better jobs we would now be able to give Julie more for her later life.

I think we've already given her a lot. Besides, we have a lot of friends here in this community. Even if they can't help us with the school situation, they can help us and help Julie take the steps to becoming an independent adult."


The Anderson came to discuss Mr. Anderson's concerns about his 16-year-old daughter, Julie, a youngster with developmental delays and severe physical disabilities. His daughter was asking him whether she could go to school with other neighborhood children rather than to the special school she had been attending. Her request came at a time when the Andersons were told there would be cutbacks in the high school program that would have integrated Julie into a vocational training program.

Mr. Anderson was also concerned because Julie had been asking for the freedom she saw other 16-year-olds had: freedom to go places and stay out late, freedom to buy her own clothes and select her own records. Mr. Anderson felt powerless when it came to helping his daughter. He was angry at the way the school was limiting her, but he was even angrier at himself for not being able to do anything on her behalf. He was troubled further by his inability to discern what kind of freedom might be appropriate for her.

No matter how much support or reassurance he got from his wife, he found himself becoming increasingly depressed. This was affecting all his relationships, both at home with his children and at work. He came to the meeting because of his family's concern, but he was unconvinced that he could do much about his own feelings.

All parents have to gradually adjust their expectations of a child as they find out what the child is really like and how the child actually develops. This is a process that never ends. In ordinary family life, it emerges as a major issue when the child preapres to graduate high school and move on to a life outside the family home. This point of potential separation makes many parents think they have one last chance to correct all the mistakes they believe they have made with their children. The wish to impose last-minute recommendations on adolescents about their friends or their study habits is one of the things that makes it such a difficult time for all family members.

Parents of a child born with a disability face the issue of coming to peace with the difference between expectations and reality from the day the child is born. Throughout the child's growth and development, parents may live with continuous uncertainty about the child's future, how much the child can and will accomplish and how the next stage of life will unfold. This special problem emerger as it does for all parents of adolescent chidren. But Mr. Anderson felt he had never been able to do enough for Julie.

Because of here relationship with her other children and her daughter, Mrs. Anderson had some sense of how much Julie had accomplished and how much further her achievements could go. Mrs. Anderson also believed there was a wide network of people -- ranging from Julie's siblings to the extended family and the community -- that would be available to help support her daughter's future struggles for an independent life in the community.

Mr. Anderson, however, had a special feeling of helplessness, particularly in his inability to discuss with Julie why he could not do what she would have liked him to do. It is a problem that all parents have to resolve within themselves -- the limits of their personal ability to change the world to accommodate their children. Parents of children with disabilities may still be dealing with the never ending belief that they could have done something to change or eliminate their child's problems.

Julie was the Andersons' last child at home. They had begun to think of a life of their own with all their children living independently. At this point in his life, Mr. Anderson felt he did not have the resources to accomplish all the things he wanted. He knew that his feelings affected everyone, but he couldn't discuss them because he thought his problem was unsolvable. At the end of the meeting, he was able to see that the meeting, he was able to see that the most important thing was not deciding what to do for the rest of his or his daughter's life, out being able to sit down with his loved ones to discuss finding a joint solution.

During the next six months of meetings Mr. Anderson discovered he was facing the same problems all parents face with adolescents: the wish for independence and deciding between what they are capable of and what they wish to do. In separate meetings Mr. Anderson confronted his depression. Dealing with his own problems, coupled with a small dose of antidepressant medication, improved all his relationships, particularly within his family.

Finally, the family found their fear of being alone in this venture for exceeded the reality of each one's special commitment to working together as a family.
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Article Details
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Title Annotation:disabled children who cannot go to regular school
Author:Schleifer, Maxwell J.
Publication:The Exceptional Parent
Article Type:column
Date:Oct 1, 1991
Previous Article:Car seat safety.
Next Article:Technology is not magic.

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