I've described how Schuyler tries so hard and almost succeeds in being just like everyone else, but within that "almost" lies an unhappy and oft-repeated story. That's never more true than in her relationships with neurotypical kids.
I'm going to just say it. I feel like this is probably my fault, mostly. There was a time, back when she was much younger, that Schuyler lived in a very internal world. In the months before and a year or two after her diagnosis, we were at a loss as to why she was so very very different, so very Schuyler. It was unclear just how much of her remoteness and ethereal quality was due to her lack of communication, and how much was from something more. More serious, more difficult to identify, more developmental in nature.
When Schuyler was old enough for school, and especially after we began looking for news ways for her to communicate, we made a choice, and it probably wasn't even a conscious one, either. We didn't worry about, or even consider, whether she would ultimately be happier simply growing up to be who she was, without forcing her into the world. We believed, as we continue to believe, that Schuyler had the ability to learn and to adapt and to one day live independently in the neurotypical world. Whether or not that was actually the most desirable goal never occurred to us.
Now, though, I'm not so sure. Did we push Schuyler to work hard, and to wish hard, for something that was ultimately going to be out of her reach, even if it is just out of her reach? I don't know. I still feel like anything less than a total commitment to the fight for inclusion, both academic and social, would be cheating Schuyler, but I'm no longer certain. I once thought that Schuyler's transition from her beautiful but mostly opaque inner place to the imperfect and sometimes cruel world of the rest of us was a mostly positive thing. She was smart enough to do it, she was ambulatory, she was socially precocious. If she could get close, what could be better for her? If Schuyler could become mostly one of us, surely we could all make up the difference.
Now I'm terribly unsure. I think perhaps I set her up to fail.
What do you do with a kid like Schuyler? More to the point, how do neurotypical kids roughly her age process who she is? She falls into a very specific crack, and it's no doubt a confusing space for typical kids to understand. I think most of them understand how to approach a kid with more severe (or perhaps simply more apparent) disabilities; kids are learning compassion from their families and teachers (or at least we hope they are), and they put that to good use with their disabled classmates. Likewise, I think they know how to navigate relationships with kids whose impairments are more superficial in nature. They know how to reach past those obstacles and reach a kid like themselves, and build relationships with those modest accommodations in place.
Schuyler continues to present a middle place, a child who looks and plays just like them, but for whom those standard rules of human interaction don't apply. It's not entirely, or even mostly, about communication, either. Schuyler presents as much younger, and frankly much stranger, than she appears, and it doesn't help that she has grown into a very tall girl, one of the tallest in her class. Schuyler can be very hard to understand in her entirety.
Grown-ups get this, and if you asked Schuyler to list the people she loves most in the world, almost all of them would be adults. But for kids, even those who know Schuyler well, she's confusing. She's happy and she wants to be their friend, but she's inexplicable and unable to play by the rules that they've been learning. It's not just communication, although that's part of it. It's also that she doesn't fit; she's not age-appropriate in some ways but ahead of her years in others. It's not anyone's fault, certainly not the typical kids who push her away. She's simply broken in ways they don't know how to accommodate.
This is inclusion's dirty little secret. It's a story I have heard from more parents than I can even number.
We've been having conversations with Schuyler this afternoon, trying to help her understand. How do you explain to a kid like Schuyler that because she's different (which she very much knows that she is), sometimes other people don't know how to be her friend? How do you get her to see the difference between a kid who doesn't know how to play with her and a kid who is being mean?
I'm not sure if she understands. She moves on quickly, so it seems like she's blowing it off, but then she'll mention some slight at a later time, perhaps days or weeks after. That's when it becomes clear that she carries all the little hurts with her, as if stuffed in her pockets. She doesn't obsess about them, but she doesn't forget.
I wish I had some answers.