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The Softness of Island Living

unnamed-3For special needs parents, the circumstances of our children’s lives are very rarely black and white. And really, woe to us when they are. Most of the time, the issues are complicated. The information we receive from doctors and therapists and teachers is usually of the “I’ve got some good news and some bad news” variety. Despite this very grey area existence we find ourselves in, or perhaps even because of it, when we advocate for our kids, we find ourselves looking for very straightforward situations, ones in which the good things and the bad things are clearly identifiable. We want it to be that simple.

Sometimes, it simply isn’t.

We made a discovery about Schuyler’s school situation last week that gave us pause. I think what caught us off guard was the manner in which we discovered it. On Schuyler’s last day of classes before Thanksgiving break (she gets the whole week off; kids these days don’t know how sweet their gig really is), we decided to treat her to a nice lunch from the place of her choice. When we contacted the school to find out where we should meet her, we were told that Schuyler doesn’t eat lunch with her neurotypical classmates. She sits in one of her special education classrooms with one of her teachers. And really, we only found out my accident.

This set off all kinds of warning bells for us. Schuyler had social anxiety issues before, in middle school, which her special ed team addressed by letting her eat in their room when she felt overwhelmed and by having us come in on Fridays to eat lunch with her. Now, suddenly it felt like she was back in that place.

What we discovered when we showed up for lunch was that again, as in so many aspects of her world, things aren’t that simple.

Yes, Schuyler eats lunch in her special ed classroom. And perhaps more troubling, when she walked us from the front office to the classroom, and later when she walked us back, in hallways full of mainstream students sitting everywhere (it seriously looked like a tornado drill), she didn’t interact with anyone. Not so much as a “hello” or a high five. Schuyler walked through crowds of neurotypical kids invisibly, like a phantom.

unnamedBut our fears of her sitting sadly in a lonely classroom by herself were unfounded. Put simply, Schuyler’s lunch hour is a swirl of socialization and friendly chaos. It’s not just Schuyler. Her special education classmates come and go from the room, and they all interact like friends. They talk and laugh and give each other shit. In some very real ways, they take care of each other. They exist on an island of their own, and it seems like a safe and nurturing island at that.

I’m left with deeply mixed emotions. When Schuyler was in middle school, she worked hard to function in what turned out to be a fairly inclusive environment. (I wish I’d done a better job of seeing that at the time.) It wasn’t always easy for her. Really, it was rarely easy. She was usually a little self-conscious, occasionally paranoid, and had to work hard, not just to keep up academically, but also simply to find her fit in a neurotypical world. Her mainstream classes challenged her, and her social interactions even more so.

Now she doesn’t deal with that, not really. She still has to navigate her band community, and she’s in an art class about which we honestly hear little. But all her academics now take place in this accommodated environment, and it’s not just a matter of the materials being easier for her. The social environment is different. It doesn’t challenge her or stress her out. It’s protected.

That’s a good thing, and it’s a troubling thing. When Schuyler was in a largely inclusive environment, the ground shifted under her feet a lot. It was a difficult time for her, and it sometimes made me question my own total commitment to the inclusive classroom model.

Things are different now. I wouldn’t describe her current academic setting as inclusive, despite our very clearly expressed desire for such an environment for her. Significantly, I feel pretty confident that if you asked Schuyler for her preference, she would pick her present situation. She’s more comfortable on the Island of Misfit Toys. You can keep your Lord of the Flies island, thank you very much.

I’m going to be honest. I’m not sure how to feel about this. I’m truly glad that she has a place to feel safe, where she’s surrounded by her special needs peers and isn’t stressing about fitting in, or worse, with passing for neurotypical. Seeing them all together, I feel a kind of relaxation of some of my anxieties. She’s alright. She’s happy. She’s surrounded by people with whom she identifies and can be herself. Believe me when I say that is not a small thing at all.

And yet.

The world that awaits her in a few short years is not going to shelter her. She likely won’t live in a community of disabled young adults. She has absolutely no desire to do so, as she makes extremely clear, and it’s still unknown if she would qualify for such a community as it is. Schuyler is stubbornly committed to making her way in the larger world, and her current school environment might not be preparing her to do so. She’ll be leaving her island, and the world in which she is so determined to live and work in independently won’t treat her gently. Hiding from it now might not be doing her any favors in the long run.

So it’s hard to know how to feel about all this. I confess, it was very encouraging to see her in a setting with her special needs friends, and there may very well be opportunities for something like that to continue in some limited form after she leaves school. I certainly loved experiencing how relaxed and happy she was. It did my old heart a lot of good to see it.

But there’s something waiting in the mists ahead, and I can’t help wondering if she’ll be ready for it at this rate. My intuition tells me that it has claws. And it is coldly patient.

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