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schuylerchuSometimes things get in my head. My feet slip into that sucking quicksand that is the sense of isolation that I imagine comes to just about every special needs parent from time to time. I lose my way, like anyone else. When that happens, I turn to the only guide I guess I really need. She leads me to the light.

Schuyler is having a good week, I think. She has begun her junior year of high school, which of course feels impossible since I know for a fact that babies don’t get to be juniors in high school. Over the summer, she’s made connections in marching band that seem to be turning into genuine friendships. That’s happened before, of course, but only after a lot of work and some bumps in the road. In years past, her first day of school nerves were pretty epic. This year, it wasn’t such a big deal. She got dressed in the outfit she’d been planning for weeks, with her hair newly dyed in a fantastic purple that really has to been seen to be truly appreciated. We sat outside waiting for her bus, and right before it got there, we fired up Pokémon Go on our devices to discover that a Pikachu was standing next to us. If you play the game, you probably understand what a big deal that was, having him standing right there mere feet outside our doorway. (Just go with it, please.) Schuyler was thrilled at her miracle Pikachu. She climbed on the bus, fantastically cool omen in virtual hand, and she never looked back.

Schuyler’s new school is one of the two or three largest in Texas, despite the fact that it only holds two grade levels. It’s a big facility; she has classes in four separate buildings. We walked her schedule with her last week, and I was exhausted by the end, old man that I am. But she got her bearings, and I think on a very real level, she was happy about it. Schuyler’s new high school has the semblance of a smallish college campus. I think to her, it feels like the beginning of the Great Big What’s Next.

That Great Big What’s Next is troubling to me, as I believe I’ve mentioned a few hundred times already. That dangling sword called The Future is the thing that special needs parents all feel, although it’s probably the thing we talk about the least, at least to other people. It’s a little like Fight Club. Rule Number One is easy to hear but hard to learn. “Don’t talk about The Thing That Keeps Us Awake At Night.” That’s a topic we’re probably best left discussing amongst ourselves at the meetings. (You did know we have secret meetings, right? But I’ve said too much already.)

It’s strange, feeling so uncertain right at the time that Schuyler seems to be truly noticing her wings for the first time. All parents feel that sense of uncertainty as their kids approach graduation. I get that. But we don’t have the luxury of Empty Nest Syndrome. We’re looking at Full Nest Forever, or at least until we die and leave her to her own devices (horrible thought), or the unthinkable happens (even worse). Either way, it’s pressing down on us. On me, I should say. I’m feeling it, and I think other parents of teenagers with disabilities feel it, too. It’s isolating. It runs so antithetically to the typical parent experience. For the first time since Schuyler was diagnosed, that feeling of being the only ones looking at this particular bugbear has returned.

But for Schuyler, those feelings are inverted. She feels the future bearing down on her, too, and she’s worried. But I believe her disquiet is tempered by the sense that the road lies before her. She won’t be able to take the same road as most of her classmates, at least not for a while, and she’ll almost certainly never get to walk that road alone. But it’s still there. It’s new, it positively quakes with danger and possibility, and unlike most parents, I’ll get to walk a lot of it with her.

On good days, and even on some bad ones, I share her sense of impending adventure. She’s ready to put on her Star Wars Vans and pack a bag full of snacks and an invisible Pikachu and step onto that road. And as much trouble as I am in my head, I do think I’m getting ready, too.

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  1. August 24, 2016 |