It’s easy to conclude that raising a kid with special needs is hard. It’s hard work, certainly, but I’m not sure that’s exactly the same thing. It’s rewarding in a way that calling the whole experience “hard” seems to miss. The most difficult parts, at least for me with my daughter, are mostly the ones that are predicated upon me saying at some point, “Shit, I don’t know.” The things that are hard are the ones that I’m unprepared for, or more to the point, the ones I’m ill-equipped to handle. And for the longest time, the moments I’ve handled with the least grace have been those where I felt like Schuyler was being done wrong.
It’s never been easy for me. I’ll own that. From the very beginning, I was hypersensitive. I can see that now, looking back. Having been baptized into this world with Schuyler, I wanted from the beginning to bring fairness into her life. I wanted the world to be kind to her, and to make room for her, to help construct the pathways she would need to succeed and to thrive on her own terms.
Here’s the thing. I think that’s mostly happened. Schuyler has done pretty well, in schools that are mostly taking care of her and in a family that loves her and with the support of a strong and emotionally invested online community. She’s doing well, and as she gets older and becomes more independent, I see no reason for that to change.
When things go wrong, when Schuyler meets up with someone who doesn’t understand or care, when she hears the words meant to demean her or is simply treated with disregard, I think I’ve taken that as a larger affront than it probably is. They’re not just hurting her feelings or standing in her way. I think on some level, they’re tearing down her world. And that’s something I simply can’t let go unchallenged.
Especially now that she’s older, however, I sometimes think I’ve really begun to do her a disservice. Schuyler has always had a pretty good suit of armor for this kind of thing, although when it gets truly dented, she carries those marks with her for a long time. Schuyler holds grudges like nobody’s business, but in some ways I think that’s parts of her defense. She doesn’t obsess, not always, but she doesn’t allow herself to forget, either. She holds on just enough that she won’t be surprised the next time it happens. Perhaps this makes her a little bit cynical, but I’m not sure a small dose of cynicism would be poison for her.
Last week, while I was in a meeting at work in a building on campus different from my own, Schuyler was kicked out of a waiting area while she was, well, you know, waiting for me. When I came out and asked what happened, the receptionist told me that she asked but Schuyler couldn’t give her name, and so she was asked to leave. When I pointed out that she has a disability that makes communication challenging, the woman admitted that she’d figured as much. But she did it anyway. (That part still pushes my buttons, I admit.) When she saw how angry I was getting, she apologized and seemed sincerely appalled at her own behavior.
I was a little surprised by my own reaction, though. My first priority was finding Schuyler, which I did without any trouble. But I didn’t go back and bark and growl. We just left. We talked about what happened, and I pointed out to her that she had all the tools she needed in order to communicate the situation, and so it wasn’t a great moment to become shy. She possessed armor that she declined to put on, and swords she didn’t draw. It was important for her to acknowledge that, but it was pretty crucial that I did, too.
Schuyler is assembling her armor, and it’s a bit piecemeal at the moment. I’m learning to step back and let her put it together herself. It might be the hardest thing I’ve ever had to do.
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