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Thanksgiving 2016

Tomorrow is Thanksgiving. (Well, if you’re an American, anyway. If not, happy Thursday, I guess. I believe everyone does Thursdays.) It’s perhaps not a problematic holiday on the scale of Columbus Day, although it does share some of the same issues. (“Hi there, indigenous people. Thanks for all the food. Say, who owns those hills over there, anyway?”) But Thanksgiving does present challenges for many, and I guess perhaps parents of kids with disabilities more than most. It can be difficult for us to find a place of gratitude during the best of times, and these are most certainly not the best of times.

For myself, I can only say that gratitude is a very personal and complicated thing. When you’ve got a child who’s different and who doesn’t fit, a kid for whom the world is a puzzle that they can’t sort out without your help (and often even with your help), gratitude and perspective can be hard to connect with. It’s not like I require an official holiday and a day off from work to find that gratitude. When it’s placed before me by such a large societal narrative, however, it’s probably appropriate to just stop and take stock of the things for which I am thankful in my own life, which is also the life of my daughter.

First of all, I’m thankful for the educational opportunities that Schuyler receives. Her school district puts real money and resources into special education, and while that’s not everything, it’s also more than what most school districts can say. She’s had some really good teachers and a lot who have been good enough, but she’s had very few bad ones. I forget that sometimes; the bad ones have been rare enough that they tend to stick out in my memory. The reality is that while I may not always agree with her school’s concept of inclusion from year to year, those disagreements center on the implementation of an educational concept that is entirely elusive for far too many students in this country. Schuyler is fortunate, and while that luck was largely the result of a years-long nomadic community chase on our part, there was never any guarantee that this town would work out for her. It mostly has, and that’s not a small thing at all.

For that matter, I’m thankful that this town has turned out to be such a good home for her. I’ve had to rethink a lot of my snotty liberal attitudes over the past decade. Plano, Texas is in one of the more conservative counties in the state, and indeed in the country. I was wary of moving here, and the giant megachurches that call Plano home didn’t ease my worries one bit. But what I quickly learned was that for many of my fellow citizens, this town’s brand of conservatism is less about religion and politics and more about family. It has been on the very rare occasion that we’ve ever been looked down on because of our religion (or more accurately, our lack of such). What seems to matter to people here is our commitment to Schuyler and making her world as enriching and authentic as possible. I’m not sure that’s how it works in most American communities, and I never expected it here, because of my aforementioned snotty liberalism. My politics aren’t going to change any time soon, but that seems mostly okay to this town, and for that I’m also thankful.

While I’m discussing community, I must express my gratitude to the online disability community of which we’ve been a part since Schuyler’s diagnosis thirteen years ago. I can’t imagine what the world must have felt like for families like ours before the internet. The kind of solitude and helplessness that must have represented every day in that pre-internet disability world creeps up on me occasionally, but it never stays for long because I know where to turn. I know of people who would say that the bonds we’ve all made as an online community have literally saved their lives or the lives of their loved ones. I guess I’d have to say that’s probably true of my family, too.

Since the publication of my book, I’ve had the opportunity to speak (and listen) at a great many conferences and gatherings. I’ve spoken to professionals and parents and persons with their own disabilities, and over the past year or so, I’ve been incredibly privileged to have Schuyler join me, a development for which I’m also more thankful than I can even begin to describe. I’ve learned more from the people I’ve met at these presentations than I could possibly recognize, and whatever benefit they might have received from my work has flowed torrentially in the other direction.

My deepest gratitude is for the individual relationships in our lives. Schuyler has benefitted from a bench of family (both biological and assembled) and friends that runs deep. She knows she is loved, and she knows she’ll never be alone no matter what happens, and those are things that for many people with disabilities are by no means assured. I have a lot of fear of what would happen to Schuyler if her mother and I met with some catastrophe, but deep down, I understand that she would be taken care of.

I’m thankful that I’m not doing this alone, and that my partner in parenting is on the same page with me. Whether it is in playing “good cop/bad cop” with the school (or more often, something like “weary bad cop who just wants to get things done with the minimum of bullshit/out-of-control bad cop with a chip on their should and nothing left to lose, man, so bring it on!”), or teaming up to explain something again for the hundredth time (“but sure, why not, let’s go over it all again”), or being the one to keep going when the other just needs to tag out for a while so no one ends up in the paper the next day, I feel like Julie and I have gotten this routine down. Our marriage might not make a lot of sense to everyone, but the thing is, I guess it really doesn’t have to. We both lose our faith in our ability to hold it all together from time to time, but I guess the thing I’m the most thankful for is that we hardly ever seem to do so at the same time.

But most of all, the very very most of all, I am thankful for Schuyler. So many of the things she’s been handed are circumstances she never asked for. She deserves that life she so desperately wishes for, every second of every day: the unremarkable life of a quintessential teenaged girl in a nondescript American suburb. She doesn’t celebrate her neurodiversity; she doesn’t want to be different, not the kind of different that she feels so deeply, anyway.

Through it all, Schuyler doesn’t spend a lot of time reflecting on the hard stuff, certainly much less than her moping, sad-sack father does. She sees a world that she doesn’t entirely understand, and she grabs at it, claws at it for the riches it hides from her. She adores her friends, even when their behavior baffles her. She trusts in people, right up to the moment they let her down, and then a bit more after that. Schuyler loves her family, and that includes her godparents and the people she has made a family space for in her heart, with a depth and unashamed loudness that I’ve literally never witnessed in another human being ever. I’m not objective in my admiration of Schuyler, but I’m lucky enough that I simply don’t have to be. I have the honor of being the father of the most amazing person I’ve ever known, and I might forget to be thankful for all the other stuff, but never ever that.

Schuyler’s life isn’t easy, and neither is the life of her parent. All those lives are going to get more complicated and more difficult in the next few years, that I can guarantee. But the thing I’ve said before and still firmly believe is simply this. If you feel anything even remotely like pity for anyone in this family, you’re missing out on the extraordinary world we’re building. If you’re jealous of me because I get to be her dad and move through this grand rough world with her, then yeah, you get it.

For all of that, when my head is on straight, I am indescribably thankful.

And so I’d like to wish a Happy Thanksgiving to everyone reading this, and also a truly peaceful and extraordinary holiday season beyond that. We all deserve it to be so.

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  1. November 23, 2016 | Reply

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