I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program.
Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as he’s always been in a self-contained special ed classroom. But hanging out in the after-school room while his sister wraps up an activity and gets her stuff together is often the only five minutes he gets on any given weekday to hang out with a typically developing child besides his younger sister or her friends, who are not his friends.
Yesterday, he and I were approached by a young boy, probably just his age, who looked at my son, turned to me, and asked, “Can he talk?” Assuring him that he could, I facilitated a little introduction. Stimulated by the bustle of the activity in the room, my son had a hard time making eye contact and speaking in a voice loud and clear enough to be understood by the boy. “Why does he talk like that?” the boy asked. Slowly and gently I replied “Well, because his brain works a little differently than yours or mine.” Piggybacking on my egregious error of talking about my son as if he wasn’t there, the boy replied, “I feel sorry for him.”
“You shouldn’t,” I told him. I corrected myself. “You don’t have to. He’s happy.”
A teacher overheard us, told the boy to go back to what he was doing. My daughter appeared, ready to go home. There was just too much commotion in the room and too much chaos in my head to know the right thing to say, so I let it drop.
Pity is just an indicator of not being aware of someone’s strengths, which in turn is an indicator that there isn’t much opportunity to get to know someone in the first place. Inclusion, inclusion…how long do I have to wait?
Sigh…this is so hard. Although I was heartened a bit, visiting the Cub Pack two weeks ago. I am a ‘semi-retired’ leader so only help out for occasions or fill-in. When I chatted with the Cubs about Disability Awareness. 8 and 9 year-olds saw the ‘Wheel Trans’ bus as ‘way cool’!
Several had a story to share about a child in their class who had various issues, like my nephew (he has Duchennes MD and at 19 is in a power chair) who was my ‘absent authority’ for discussing where our community does well/falls short in supporting folk with disabilities. They gleefully told me about the various technology their classmates use, and spoke with admiration, not pity, though of course perhaps that was just not verbalized.
We need, somehow, to foster social interaction — but how? Inclusion in school, even where it exists, just isn’t enough. But blogs like yours are raising consciousness, and I guess that is a start. I realize that is cold comfort to you, but just had to say ‘I heard you’! It may not have been the right time or place in your daughter’s class, but you spoke to me. And the more you speak up, the more folk will hear you. At least, that’s a start…
Thanks for hearing me. I think the answer is that the change is happening, but that it is slow. Often we can’t change the world, but we can change our neighborhood or our small circle of friends. Maybe that’s the easier place to start.
I was lucky, in that a mom whose son with Down Syndrome the same age as my son Jeremy (now 16), had done an incredible amount of inclusion trail blazing at our local school before our family arrived in town (Grade 6 for Jeremy). It was a hard uphill battle for her, but ultimately the school had to admit that that particular cohort was nicer, more accepting, more inclusive than other grades. The fact that other kids benefit is what I push now. Jeremy tended to be a celebrity at his school, partly because of his sociable personality, but also because being a friend to kids like Jeremy had some caché at his school, as his younger sister learned. She was known as “Jeremy’s sister” in a positive way. It can still be hard to provide Jeremy with experiences of just being one of the gang, but those are the best experiences. One of my favourites was a “rookie ball” program in our old neighbourhood for kids who liked to play baseball but not competitively. Everybody cheered when Jeremy hit the ball, or threw it. All the kids got cheered for their own accomplishments and had fun. We need to push for those kind of programs, because our kids with severe disabilities aren’t the only ones to benefit from non-competitve fun and skill-building.
I struggled a lot when Jeremy was younger with the appropriate responses to innocent recurring questions from kids. I tried very much to include Jeremy in the conversation, sometimes just adding “Right, Jeremy?” if I had to explain something. That helped me formulate my responses appropriately for Jeremy, whether or not he picked everything up. (I have also had to signal to adults who should know better — like doctors! — that I won’t have conversations about Jeremy as if he weren’t in the room.) One thing I used say was: “Jeremy can do a lot of things. But it takes him a lot more work/effort to do something that is really easy for you.” Jeremy used to surprise kids with his ability to shoot hoops, so I could say “he’s really good at basketball” or other things that he was good at in his own way, regardless of whether he would win a competition. I learned that kids are often way more accepting of kids who are “different” than adults (even if they ask challenging questions), and that some kids “get it” and other kids don’t, probably because they haven’t been expected to associate with people who are perceived as different. Again, “it takes a village” to cultivate a society of inclusion and empathy, and we should just keep acting like it’s a no-brainer.
Diane: It’s nice that you acknowledge the trailblazing of the family before you. Just goes to show how advocating for our kids often benefits others. And to your other point, I have to get better at including Gabe in conversations. Sometimes folks just need someone to model the behavior for them. I’ll keep trying!
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