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Preparing for the mainstream.

Ansel and I are sitting on the bottom bleachers in a big hot gym, with about 100 other kids and their parents, waiting for camp to begin. Ansel is excited; I am a nervous wreck.

Ansel has Duchenne muscular dystrophy, and summer camp has gotten to be a real problem for us during the last two years. He just hasn't seemed to fit in anywhere. Most of the camp programs in our neighborhood are too sports-oriented and don't have enough supervision for a child like Ansel. Programs for kids with disabilities, all of which are some distance away, are often geared toward children with developmental disabilities.

Ansel has been in special education classes since he was three because he has learning disabilities in addition to his physical disability. He's five-and-a-half now and spent last year in a K-1 classroom with a teacher and an aide and only eight other children. But he is in many ways a particularly bright and eager child who seems to be revealing artistic gifts as he develops. We wanted to find an environment with enough structure and supervision, without too many physical barriers or too much athletic competition, which Ansel would find challenging and where he could express himself artistically.


The camp we have found is for "gifted" kids. It's oriented toward the arts and allows children to choose the activities they prefer. This way Ansel can avoid strenuous sports. But there are other reasons for anxiety: This is Ansel's first real mainstreaming experience, the first where he won't have the special support he gets in the small classes in school, the first where the staff will not know the ins and outs of his learning disabilities - and the first where he may have to explain himself and his disease.

We've talked with Ansel about his "special muscles" for a couple of years now, but we hadn't used the words "muscular dystrophy" until a few weeks ago. We figured it wouldn't be meaningful until now. When I told him the words, of course he said he knew them already, although he couldn't pronounce them too well.

Ansel's splints are the most noticeable aspect of his disease and in a way symbolic of it. The year we learned that Ansel had muscular dystrophy, when he was three, he was fitted with plastic splints - at the time, just orthotics that fit into his shoe and went no farther than the ankle. The splints stretch the muscles in the lower leg and heel cord, in order to ward off the painful contractures that occur in Duchenne dystrophy. From the start, I hated those splints. It was bad enough in winter, when I had to search for shoes that would fit over the inflexible orthotics, but summer was worse. While other kids frolicked in toeless scandals or flipflops, Ansel had to weir those hot splints and high top sneakers. Since we were told the splints were essential, we were fastidious about having him wear them every possible minute. I remember how angry and irritable I was that first summer as I changed him in and out of pool shoes at the local park so he could go swimming. That unblinking sun seemed to throw a brash, unnatural light on the fact that my child, suddenly, was different from the others. As the splints have grown longer (they now extend up Ansel's legs to his knees) and more noticeable, and as Ansel has developed, the gap between him and other kids has widened. And each year I've had to adjust my perceptions and accept his disability in a clearer and clearer way.


This summer, I am glad his splints show. I figure it will remind the staff that he is disabled - it's not always that obvious and that he may need extra help sometimes. But I know the splints will attract attention, perhaps not always positive, from other campers. I have told Ansel that children may ask him about the splints. "You may have to educate people," I said. "They just don't know. You can just say you have special muscles if you want. Or whatever. Whatever you feel comfortable saying." He looked uncertain; he drifted off into his insular world, his round dark eyes not meeting my look; I couldn't even tell if he was listening.

Sitting in the big gym now, surrounded by the reality of a large group of active kids, I look around and think: Have we done the right thing? Is he really gifted? Will he be able to cope? Will he be overwhelmed? Will the other children be accepting of his disability, or will they reject him? Are we expecting too much from a five-year-old? Will he fit in?

They call out his name, and he gets in a line with some of the big boys and a couple of girls. He doesn't look back as a teenage counselor marches them out of the gym to some unknown destination. It's time for me to get going.

All day I worry about Ansel. Every time the phone rings, I am sure it's the camp director saying that Ansel has fallen and been hurt, and would I please come and pick him up. (Ironically, an older, nondisabled girl attending the camp will break her arm that day trying to execute a cartwheel.) As the hours go by, I gain confidence. I begin to think maybe it will work out.

When I walk into the gym that afternoon to pick him up, Ansel is standing on the bleachers talking to a counselor. I greet him, and we walk into the locker room to pick up his knapsack. A woman who works at the camp stops me and pointing at Ansel, who is a particularly handsome and appealing little boy, says, "I think I'm in love." A couple of kids say "Goodbye Ansel," although he does not respond. Later, though, he tells me he has three friends. He seems enthusiastic as he tells me about his day: He did art projects - something about building a parachute and listened to Alice in Wonderland, and went on a short nature walk where he learned that you could eat dandelion leaves. He does complain about the occasionally long walks between activities - the camp is spread over a private school campus with different buildings - but he says the counselors waited for him when he said he was tired, and one even piggybacked him up the stairs.

"Did anyone ask about your splints?" I probe gently. I really want to know, and I think maybe he'll say, "I don't want to tell you!" like he sometimes does after I've asked a lot of questions. Or that he'll start talking but lose the thread of his thought, or start stuttering wildly and quit in the middle, frustrated. But he just answers, "Yes, they did." "Who asked you, a kid or a counselor?" "A child," he said. "A boy who was bigger than me." "And what did you tell him? That you had special muscles?" "No. I told him I had muscular dystrophy."

I am really surprised and proud, and tears well up in my eyes behind the sunglasses. I'm glad I gave him the words to use. I didn't expect him to be at ease with them somehow, not yet. I certainly am not, not completely But it isn't a big deal to him. It's just part of his life.


He's gone to camp for over three weeks now, and it hasn't all been perfect. Not every activity has been to his liking, and some mornings he's hung back for a minute or two before saying goodbye. He has had a couple of toileting accidents, one when he couldn't get down the stairs to the bathroom fast enough. He has never greeted another child or adult without prodding from me, even though I have seen him affectionately touching the fingers of the boy standing next to him in line. Other children seem to say hi anyway, and even though most are older, they seem to accept him as a friend. The mother of another boy in the program sat next to me on the bleachers one morning last week and told that boy talks about Ansel at home an the time. "He's like a mascot," she said. And this morning, two slender freckled boys tossed him a tennis ball so he could play handball with them and chased after the ball for Ansel when he threw it ineptly. They didn't complain about his weakness or his inability to throw well. After the attempt at handball ended, they fought over the chance to sit next to Ansel.

The mainstreaming experience has been a bit hard on me. I feel as if I'm always walking on tip-toe. I don't want to make trouble. The staff has been very sensitive to the idea of having a child with a disability in their midst - the gymnastics teacher told a story about helping a boy with a disability learn to master the rings, and one of the first science sessions featured a segment on how it feels to be disabled- but they have asked very few questions about Ansel himself. I've grown spoiled, I suppose, from the small ratio in special education classes and the almost daily report on Ansel's progress, but I'd like more feedback.

I would so much like him to fit into a mainstreaming setting. I would like him to identify with able-bodied children who share his interests. I would like other children to see that kids with disabilities are like them many ways. I don't want him to get pigeonholed, and I want him to value his strengths and talents. Yet, Ansel is not an idea, he is a person, and he has such a deeply rooted concept of himself as disabled that can shock me sometimes. Camp has been a good experience for him, but it has also been kind of exhausting, physically and emotionally - the constant eagerness to please me and his father along with, I think, some genuine worries about his well-being. He's relaxed somewhat and seems to be enjoying himself, but he's also counting the days till camp ends.

Ansel says he has grown tired of people asking about his splints, and the next time someone asked why he wore them, he just said, "Because I need to." When I told him that in a couple of years he could go to a sleep-away camp where all the kids had muscular dystrophy, he was very excited. You mean they will all have splints or wheelchairs?" he asked. I was momentarily surprised he knew that some children with MD are in wheelchairs. We had never explicitly said that. Yes," I said, "they will." "That's where I want to go," he said.
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Author:Wolfson, Penny L.
Publication:The Exceptional Parent
Date:Jun 1, 1991
Previous Article:Meet my daughter, Annie.
Next Article:Listen to me.

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