Schuyler is my hero. I think I might have mentioned that before. It’s a nice gig, being my hero’s parent. I’d recommend it to anyone. But there are times, every so often, when hero worship and parenting don’t necessarily click together the way they should. A lot of times, actually. Sometimes I’m shocked that I do as well as I do. Some days you look and you say “My kid is still alive, she ate some actual food and didn’t join a gang or end up on the news. I’ll take that.”
We had a conversation with one of Schuyler’s teachers that uncovered a truth you don’t hear about much, either from disability self-advocates or parents. Sometimes, she admits, Schuyler allows her disability and the natural sympathy that good people feel for her to get her out of doing things in school. I have worked so hard to advocate on her behalf. Sometimes it feels like everything I do is for her, professionally and personally, as a father and a writer and an advocate. But in doing so, as parents, have we helped create a situation where Schuyler can get by without making a good effort. Well, yeah. I suppose so.
A realistic portrait of Schuyler would have to reflect that she’s a good kid. She’s a great kid, even. She’s unlike anyone I’ve ever known, and being her father, even imperfectly, is the greatest privilege of my life. But Schuyler gets frustrated by the roadblocks her little monster throws in her path, obstacles that challenge her in ways that her classmates don’t experience. When that happens, she gets epically tripped up by her frustrations, and she sometimes makes some regrettable choices.
That’s not something terribly concerning, I guess. She’s fifteen, after all. When I was her age, I was making choices far, far worse than hers. But as her father, Schuyler’s questionable choices can be scary, because in a few short years, she’ll legally be an adult. And she simply isn’t ready for that.
Schuyler’s choices are becoming more daunting. Her classmates are making rotten choices, too, and should she choose to follow some of their paths, I think she stands to be more damaged as a result than her neurotypical peers. She keeps asking about driving, and while her seizures may allow us to punt the situation down the road a bit, it’s not the only reason. She’s just not ready, and I don’t know if she ever will be. That’s a hard truth to face.
(I should pause at this point to let you know that Schuyler knows I’m writing about this and has given her permission to talk about it.)
Schuyler has a new assistant band director at school, a young teacher who replaced the one with whom she had so many conflicts last year. (He retired, incidentally; we didn’t hire ninja assassins or anything like that.) After having a conversation with her that looked very much like this blog post, we all agreed that Schuyler will benefit from some redirection, and perhaps a little tough love.
Schuyler has forgotten much of what she learned in middle school. High school doesn’t present as many opportunities for personal instruction, and she also has to contend with some long-term memory retention problems as a result of her polymicrogyria. As a result, she needs to understand that if she’s going to make it in this world, she’ll need to work harder than everyone else, not coast on the sympathies of a kind world. Because the world isn’t that kind.
My little girl has had a lot to overcome in her life, and a lot of antagonists to face. Much of the time, however, her most daunting foe is herself. Her insecurity, her fear, her frustration, her occasional laziness, and her misunderstanding that if she plays her cards right, the world will feel bad for her and smooth the way.
So we adjust. We redirect, we refocus on the tasks involved in building a smarter, more independent and self-actualized Schuyler, and we try again. We team up with teachers to hold her more accountable, we shut some of the doors that she’s come to believe are available to her, and we direct her towards smarter, better choices.
Anyway. My kid is still alive, she’s eating food that’s at least marginally nutritious, and she’s not setting police cars on fire or building a meth lab. I’d like partial credit.
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