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Broken Thanks

I can’t believe I’m about to do this, the most clichéd topic in all of bloggery. I am actually writing a Thanksgiving post. I’m really going to do it.

Well, perhaps it’s not all that straightforward, at least not for parents of kids with disabilities. For one thing, we’re not all coming at it from the same perspective, or with the same core beliefs. Some of us are in a place of acceptance, and others of us still shake our angry fists at the sky. Some of us embrace neurodiversity, while others fight to bring our kids some measure of the life that their unimpaired peers enjoy without so much as a thought. There are parents who are thankful for every day that their kids are alive, all too aware of how precious those days might be. Others of us are equally thankful for every day that we as their parents can be with them, ever mindful of our own mortality and the burning question, Who will take care of them when we’re gone?

For every disability parent who is thankful that their plane landed in Holland, there’s another of us with a lot of questions about why OUR plane landed in Mogadishu instead, or on Mars.

Of all the things in our lives and the lives of our special needs children that are broken, perhaps our thanks are broken as well. But like so much else in our imperfect lives, our gratitude is sincere, the product of the triumphs and the failures we endure every day.

I can only speak for myself, of course. As an agnostic, I’ve never been a particularly devout believer, but likewise I’ve never written God off as a possibility. My wife once said that I’ll never be an atheist because then I’d never have anyone to blame for Schuyler’s condition, or at least someone to fight with about it. And I suppose there’s some truth to that.

When I talk to God, as I infrequently do, there can be a lot of frustration when things are rough, and perhaps no small measure of inappropriate pride when things go right, when Schuyler lands on her feet despite what seems like divine intervention against her. My inappropriate but heartfelt conversations with God range from “Why are you doing this to her?” to variations on “Nice try, asshole.”

But sometimes, when I’m feeling the high road under my feet, I find myself expressing gratitude for much in our lives. And in this week, as we prepare for Thanksgiving, that most quintessential of American holidays, I suppose I could do worse than to spell them out right here.

Some of the things I’m thankful for are definitely items of old business. I’m thankful that I worked for the Yale School of Medicine during those critical years when we searched for a diagnosis for Schuyler. My health plan was simple: Schuyler’s medical care was provided by the amazing people at the Yale Med School and the Yale New Haven Hospital. She received help and diagnostic care from some of the smartest people on the planet, care that I could never have afforded otherwise.

I’m also thankful that Schuyler found her way to a school district that was capable of helping her, and open to the idea of assistive technology as an integral part of her curriculum. As I speak to other parents around the country, I remain all too aware of how rare that support really can be.

I’m thankful to all the people who gave her such a good start with assistive technology. That extends from the amazing folks at the Prentke-Romich Company to the teachers in the Plano Independent School District. It reaches from the readers who contributed to the purchase of her very first AAC device to the independent developers and therapists out there who are constantly moving the field of assistive technology forward and creating opportunities for communication and inclusion that would have been unthinkable just a few years ago.

I have new gratitudes as well. Over the past few years, I’ve met some extraordinary people in the online community. I’ve met some awful people, too, but it’s funny how they don’t seem to stick around. It’s the ones who really matter who seem omnipresent. I can’t imagine what Schuyler’s life, or mine for that matter, would be like without the larger online world as a part of it. I’m especially thankful for all the people I’ve met while speaking to virtual classrooms or at speech language conferences over the years. I can’t imagine that they’ve gotten as much from the experience as I have. Or as Schuyler has, either.

I am thankful every day to the members of my family, to be sure. But especially of late, I am filled with gratitude and love for those who have become like family to us, to those who have opened up their lives to Schuyler and have become a vital part of her world. Her family is expanding, and her heart continues to show no limits in the amount of love she has to offer in return.

I’m thankful for less tangible things. When I read about the struggles that other families go through, I feel almost guiltily thankful that for the time being, and hopefully for a very long time, Schuyler’s own particular monster doesn’t seem to endanger her life. And while I’m always aware that it is the world that is lacking in its appreciate for her uniqueness, I am nevertheless thankful for the small battles she successfully wages just to feel like a typical twelve year-old girl. I hate that “passing” is so important to her, but I’m thankful for the times that she’s able to do it.

One thing that I am fairly certain is a gratitude reserved for parents like myself is this one, which I don’t write lightly or without hesitation. I’m thankful, perhaps weirdly, for the amount of badness that escapes my daughter because of her disability. She’s without guile, and while she is very sensitive to how she is regarded by others, and is certainly aware of when people are making fun of her, it is nevertheless true that the worst of it probably misses her. She knows what people are saying when they use the word “retarded”, and she has grown almost paranoid about the friendships that she feels slipping away from her as her peers find their cool groups, cliques into which she never easily fits. But I watch as some kids, and some adults, make fun of her in ways subtle enough to escape her notice, and for that, I am oddly (and perhaps a bit shamefully) thankful.

Most of all, especially of late, I’m glad Schuyler is by and large unaware of the darker aspects of the Internet community, and the anonymous cruelty and spiritual bankruptcy infecting so much of it from within.

For myself, I’m thankful for the fact that of all the fathers in the world who could have had Schuyler as their own, God or Fate or random selection (you choose) saw fit to place her with me. I have failed her so many times, and sometimes in ways breathtakingly big, but she has never returned the favor. Schuyler has been the most extraordinary presence in my world, and while I sometimes see grey around me, it is washed away by color and song the moment she enters the room.

I’ve never been thankful for Schuyler’s monster, and I never ever will. But I’m filled with gratitude for the opportunity to help her take arms against it. And no matter how it goes or what strange turns it may take, I am thankful, ever thankful, that her path through this world is mine to share.

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  4. BW aka Barbara from Bostoncg
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