October 28, 2017

The Big Fall

I’ve always known that this fall, and I mean specifically the autumn of 2017, was going to be a big deal. The numbers line up in an interesting way. If you’re a young person and you’re having a child at the age of thirty-two, do the math. It means you’ll turn fifty the same year your kid turns eighteen.

Which is what’s about to happen here.

It’s funny how you can look forward to, or perhaps dread, a coming change and still be at least mildly surprised at how it manifests itself. I guess that’s been a constant in raising Schuyler, and I suppose in parenting any kid with a significant difference. The only thing you can count on is when those anticipated moments arrive, they won’t play out exactly like you thought they might. Blessing, curse, whatever. An unconventional life is what you get.

For Schuyler, her eighteenth birthday is arriving faster than she wanted, I think. There are things to consider. She’s going to be added to our bank account soon. (Oh, the vast treasures that await her from that yawning pit of gold!) We’re exploring all the limited guardianship options, trying to strike that balance between the independence she deserves and the protection and help she still so desperately needs. School is winding down, with all its irritations and dramas but also its safety and federally-mandated giving-a-damn about her welfare.

She’s had a pretty good senior year so far, I think. She’s taking some interesting classes, including an outdoor education class where they learn about camping and outdoor living and survival skills, so she’s set for life in post-apocalyptic Plano. And apparently they’re learning to use power saws in her Theater Tech class, so absolutely nothing to worry about there. Significantly, after four years of marching band and inexplicable seizures in the stands during football games, we finally figured out how to stop them using sound-dampening ear muffs (designed for gun enthusiasts, ironically for this snotty liberal family). Nice that we solved that issue in time for her last five games. Well, what are you going to do?

I spoke to her band director recently, and he noted that Schuyler has come a long way since last year. She’s more confident, quicker to reach out to her classmates. Her social anxiety is still there, but she hates it and how it holds her back, and so she’s powering through it in ways I never learned how to do.

The ultimate test of that comes next week, because, and I can’t emphasize enough how momentous this is, Schuyler was asked by a nice young man to go to the Homecoming dance next weekend. If you don’t have a kid with a profound difference, you might not get what a big deal this is. Not because a kid is doing her a favor and taking her, which is how these kinds of things tend to play out in our popular media. No, it’s a big deal because someone saw past the extra work it takes with someone like Schuyler and saw the reality of exactly how amazing and unique she is. It’s a big deal because someone picked up an emerald in an unlikely place and recognized it for the valuable gem it is.

Schuyler and kids like her spend so much time on the outside of those social spheres. Even in campus communities like Schuyler’s, where she is generally well-received and accepted, it can sometimes feel like there are places she and her different classmates simply don’t travel. Homecoming is one of those, until it isn’t. Schuyler has asked about Homecoming and Prom in the past, and I haven’t known what to tell her. Now I can simply say “You’re going, and your dress looks FANTASTIC, and you’re going to have a big ol’ Texas mum the size of your head, and I’m going to take an embarrassing number of photos, and shut up, I’m not crying, YOU are.”

And a month and a half after that, four days before Christmas, she will turn eighteen. Just like that.

A month before that happens, however, I will celebrate, if that’s the right word, my own significant birthday. Let’s call it “forty-ten”. I’m torn between being slightly horrified by that fact and at the same time mildly and pleasantly surprised that I made it this far.

Pulling up to the fifty station has been occasion for a lot of self-examination, as I suspect it is for most people at this age. I’ve been facing some truths about myself that perhaps I’d internalized for a while. It’s probably not unusual to reach a point on your life’s calendar where you begin to question what you’re doing and how much it really matters. I’ve been looking at the world, not just my place in it, and it’s becoming harder and harder to imagine I’m making much of a difference.

I speak about disability issues, both in writing and in front of conference audiences, and the older I get, the more impassioned those species become. A few years ago, in a presentation in Ohio, I transitioned from mostly speaking about assistive technology and special education issues to a more activist, disability-rights-as-human-rights, “to the barricades and lets set something on fire” kind of speech. I’m good with that; I feel more driven to that kind of advocacy, particularly as assistive technology becomes a smaller piece in Schuyler’s life, as it inevitably must.

This past year has been tough, though. I don’t think I’m alone amongst disability advocacy writers and speakers in feeling that way. I stand in front of groups of special educators or speech language therapists, and I love them for what they do. But I’m also aware that I’m not reaching very many people who aren’t already with me. They have strong and beautiful voices, but they’re still the choir, and I’m preaching to them.

And then I turn on the television or wade into the swamp that Facebook has become, and I see people gleefully talking about intentionally taking advances away from people with disabilities. I hear people from all over the political spectrum calling each other “something-tards”, and the same tired old “free speech versus being a goddamn decent human being” arguments raging. I watch brave fighters in wheelchairs forcing the police to carry them away from protests because they refuse to move, refuse to be silenced. And that’s incredible, that’s a level of bravery I don’t see very often, but I ask myself “Why are we in a place, in 2017, where disability advocacy has again become a literal fight for existence? How did that happen? And why are people like myself not making any progress in stopping it?”

I’m working on another book, which I’ve said before and meant before, too. I’d describe it as less memoir, more unhinged manifesto. Now that Schuyler is leaving school, I guess I feel like it’s an appropriate time to revisit her world, and the bigger, rougher one she’s swimming out into. But my faith in my ability to effectively light fuses has been shaken, and I’m not sure how to get my mojo back.

I think I’m a fair writer on a good day, but while it satisfies something crucial in my soul, I wouldn’t say it makes me happy. And advocacy for me is part penance, part mission, one that I couldn’t turn away from if I wanted to, which sometimes, honestly, I’d kind of like to do. As I approach fifty, I do so with a sense of feeling slightly untethered.

The one thing that I find myself turning to after all these years is music. When asked what I do, my first impulse is still to say “I’m a trombonist”, although given the evidence of what comes out of my horn when I play these days (besides dust), perhaps I need to brush up a bit more. Music is the thing that makes me happy, even though I’m probably no damn good at it anymore. I’m going to grab onto that for a while and see where it takes me.

For our birthdays, Schuyler and I are wishing for big things. She wants a tattoo, and the old “Oh, sorry, we’d love to make that happen but the law says you have to be eighteen” dodge has finally come home to bite us on our asses. So, a tattoo it is, and to be fair, she’s got some good ideas. Also, and this is kind of shitty of me to say, but I’m not sure I have faith in her pain tolerance. She may end up getting a comma, in a twelve-point font, before she bails. But she’s a resilient kid. Or young adult, really.

As for me, I want to learn a new instrument, an unusual one called an ophicleide. Schuyler wants to be the one who gives it to me, so much so that she started an online fundraiser, which did my old man heart good. She’s a much nicer kid than I realistically should have ever expected to produce, and perhaps just getting to take undeserved credit for that is gift enough. Also, I suspect she really wants to hear me moo like a cow.

So, a dragon tattoo and a 19th century French fart horn. We’ve got this birthday thing covered. The rest of it, the big, broken world and the shrinking pool of empathy and the coming void that I’m trying to hard to ignore? They can wait.


1 comment:

Jessica Ericksen said...

Hi Rob,

Just a word on adding Schuyler to your bank account- if she intends to apply for SSI adding her to your bank account could complicate things. I am not sure how she feels about applying for disability but SSI comes along with access to Medicaid as well as programs like Plan to Acheive Self Support that would allow her to be self directed in finding the type of work she is interested in doing and can provide a cushion as she works out the kinks of adulthood. Best of luck Schulyer! Navigating the adult world with a disability isn't always easy but we make our own paths and it can be awesome.