In the Community

by Kristina Chew

categories: acceptance, community inclusion

Published June 12, 2009 @ 12:30AM PT

Once upon a time autism was thought to be a rare disorder. Today, so many more individuals are said to be on the autism spectrum that it can feel as if there's an "epidemic." In any public setting, there's bound to be someone on the spectrum present and nearby.

No, no, no, this isn't another one of those "there is not/is an autism epidemic" posts.

Soon as Charlie and I got to the YMCA swimming pool today, we noted that (1) all the lanes had at least two swimmers in them already and (2) we knew the two swimmers---teenagers, twins Charlie has bowled with---in the lane against the wall. I walked over to a dark-haired woman about my height and asked if Charlie might swim in the same lane and she immediately said, of course, why ever not?

The twins are her sons and before I knew it we were in a comprehensive conversation about medication, schools, health issues. Charlie meanwhile had gotten into the pool and was swim-walking laps, now swimming with his powerful kick on the surface, now diving deep under. He moved easily near and around the twins; eventually I got in too and it was the four of us in the lane (plus a swim teacher giving a private lesson to a quite young child, his mother nearby).

Often we feel so very deeply isolated and alone. I wrote this a few months back:

Isolation is something Jim and I have long struggled against, and yet experienced, and painfully. Whether we're on the spectrum ourselves or the relative of someone who is, we all have some memory of realizing that we, or someone very close to us, is being seen as "different," and shunned. I always find strength in the community and companionship of other individuals and families who live, as we do, everyday with disability----nonetheless, circumstances sometimes make it extra-taxing, if not just not possible, to get out beyond our own door and see and be with others.

It was precisely to not be isolated that, back in June of 2005 when Charlie was struggling and in a crisis situation, I started writing about him and autism in a blog. Things had gotten to the point that it was hard to take Charlie anywhere and I felt the circle of possibilities for him, for us, tightening and tightening. Writing and sharing about Charlie and our lives in a public, online setting was an attempt to forestall isolation, to reach out and communicate. I certainly didn't think then that, via blogging, I'd come into contact with so many people across New Jersey, the US, and around the world.

I guess that last sentence in particular sounds rather warm and, I don't know, glowy. More often, the isolation is a reality.

Much as I know there are other families out there like ours, that there are more individuals on the spectrum out there than one might be aware of, we don't run into them (because they're stuck at home, and we are too) and, if we chance to, we don't have time to talk beyond exchanging greetings and "how's it going" 's. As the other mother at the pool turned to get towels for her sons, she commented on how much the two of us had exchange in something like five minutes---she certainly and I too, have had some time to practice that art of really fast really detailed conversations.

Nonetheless. If I may extend the good-feelings-ness of this post (hey, sometimes you just have to extend the positive vibes and the good will, right?), in other against-the-isolation, breaking-news in our small Jersey-surburbia household: We have found a new babysitter. We have not had a regular babysitter for a couple of years. The wonderful young woman who stuck with Charlie through some really trying times----rushing to get him at an afterschool program that he was desperately unhappy at when I couldn't get off from work; always trying to move things in her schedule so she could be there for Charlie---has become a full-time speech therapist and had many more responsibilities of her own in her life. My parents have been Charlie's only babysitters ever since, but between his getting bigger and them having their own health issues, it hasn't at all been so easy for them to watch Charlie. We've long known we needed a new babysitter, but with Charlie now as tall, or taller, than many, we've become extra-hesitant about who to leave him alone with.

The new babysitter (which seems like quite the wrong word to refer to her by, but it'll have to do for the moment) came to our apartment yesterday afternoon and Charlie greeted her with a big smile. Immediately I was reminded of all the college-age individuals who've come to our house to do ABA or speech or (yes) to babysit Charlie over the years. Talking to Jim later, he made the simple, apt observation that Charlie (and we) need to be around people, other people. That we need not to be isolated, and, if not always out in the community, creating a community around and for Charlie.

That makes us all smile.