My son has a genetic disease, Familial Dysautonomia. He walks and talks, but his balance and gait are not great. He has a feeding tube, through which he can feed himself and he also eats by mouth. He has no behavior problems and is sweet with an innocent personality. We encourage him to be as independent as possible.
I recall a holiday dinner with friends a few years ago when my then 8-year-old daughter and her friend came to complain to the adults that the big kids weren’t playing with them.
“They’re discluding us,” they announced to our amusement. We did what adults do — told the big kids to be nice and tried to persuade the little ones to give them some space.
But really, must everyone be together all the time? Sometimes I like to hang out with people like me, sometimes I don’t.
When my disabled son was younger, I was very focused on inclusion and mainstreaming. I was so hopeful that he would fit in, make friends and lead a typical life. Why shouldn’t my child be included? I was his advocate and tried so hard to focus on the parts of him that were like everyone else, rather than the things that made him different. He goes to a large public high school where he is mainstreamed and manages amazingly well with a lot of loving support.
As he’s gotten older, however, my acceptance of his differences has evolved. I can embrace the wacky, fun, quirky things about him. When he aged out of day camp and their wonderful inclusion program, the next option within the camp was with a self-contained group of disabled kids. At first I bristled at the idea of him being with a group of disabled kids — what about typical peers and role models? But I had no other options, the camp had been great for my son since he was 3, and it was better than him spending the summer playing video games in my basement. We decided to give it a try.
I learned that my son didn’t mind being in the group at all — in fact he liked it. Even if I perceived that he was higher functioning than many of the other kids, he enjoyed making his friends laugh, helping out and hanging out with the counselors. It was the beginning of me being able to watch him move into and out of inclusion with fluidity and grace.
The campers went on a field trip to an improv place. The counselors told me my son loved it, which gave me the idea to pursue a theater class. While the theater program offers both inclusion and self-contained classes, we opted for the self-contained ones since he had no previous “training.” He took two classes last year. We went to the end of the semester observation. My husband felt that our son seemed so different than the other kids. I, on the other hand, saw him as belonging in the group and was so happy to see him shine. Apparently, inclusion is in the eye of the beholder.
I am thrilled that my son has this opportunity to learn some new skills, have fun, make friends and be part of another nurturing community. These kids hit their marks, sing mostly on cue, and exit stage right and stage left, albeit slowly. They may have different abilities, but their performances are no less sweet.
Stillman lives in suburban D.C. with her husband, four children and dog. She is a former social worker who now blogs at Let Me Tell You Something…
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