January 12, 2017

Denial

Today at Support for Special Needs:
Excerpt: 
There are two kinds of deniers. There are the kind that are just goofy, like moon landing deniers. They're not hurting anyone, they're just being kooks, God bless 'em. And then there's the other kind. September 11th was an inside job, they say. Sandy Hook was a hoax. The Holocaust never happened. Donald Trump wasn't mocking people with disabilities. These deniers aren't just trying to change the narrative to fit whatever their ideology might be. They are erasing people, they are taking the struggles and the particulars of the lives of vulnerable people or people who have been destroyed by the world and they're simply sweeping it away, as if it had never happened. If there's pain there, from the agony of a family wiped out by a hateful ideology or an act of violence to the heartbreak of a parent watching the future president turn their children into a joke and an insult, well, that pain is wiped away with simply denial. Didn't happen. The media lied. You're being too sensitive. You're being politically correct.

January 4, 2017

Desensitized

Today at Support for Special Needs:
Excerpt: 
I recently read an article that posed a question that honestly hadn't occurred to me before. Can the perhaps inevitable hyper-vigilance that comes from parenting a child with a disability result in (or manifest as a symptom of) Post-Traumatic Stress Disorder? I'm mildly surprised that I'd never thought of it in those terms, since the obvious answer is yes, of course it can. And the question is more complicated because for parents of kids with disabilities, hyper-vigilance isn't necessarily an inappropriate response. Terms like "hyper-vigilance" and "helicopter parenting" don't carry the same meanings to those of us taking care of kids with disabilities. For many, they are meaningless descriptors. A constant state of vigilance, near-constant supervision, cradle-to-grave worry, these are necessities for a great many special needs parents. The vocabulary of the abled fails us in that regard. And PTSD may just be one of those things we file away with all the other uniquely unsettling stuff that comes with the territory.

December 28, 2016

"At least I think that's so..."

Today at Support for Special Needs:
Excerpt:  
I'm not going to try to pretend I'm hopeful, or that I believe the inherent goodness of my fellow citizens of the world is going to be our salvation. Maybe I should. Perhaps the first step to making it rain is seeding the clouds, I don't know. All I know for sure is that if 2017 is going to be survivable, if we're all going to get out of this intact and not epically broken, it's going to be because we did two things. Two things, just two, that's what I believe is necessary. They're easy, and they're hard. We need to take care of ourselves. And we need to take care of each other, in a very meaningful and personal way.

December 21, 2016

To my Heart, at Seventeen

Today at Support for Special Needs:
Excerpt: 
You know the truth, which is something we've always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You've simply refused to accept those limitations as concrete. You've shamed those of us who've tried at various times to define the limits of the person who you can become. For that above everything else, I'm proud of you, heartburstingly so.

December 16, 2016

The Value of Protest

Today at Support for Special Needs:
Excerpt:  
Protest forms special needs parents into people we would not otherwise be, and sometimes honestly never wanted to be. We become accustomed to advocacy, to stepping up when doing so makes things weird for everyone else. We learn not to care about the awkwardness, because our protest is God's work, it's in the service of the thing that we do that matters the most, the building of an equitable place for our children to operate. Others may care, others may love our kids and want the best for them, but no one else bears the responsibility to get things right like we do. When our kids grow up, many of them will move in various degrees towards independent life, and more important perhaps, lives that have meaning, and personal fulfillment. Our kids will require accommodations in a world that is loathe to provide them, either in services or equal opportunities or even just a social narrative in which they are allowed to be fully human. The world pushes against our disabled kids, and so for as long as we are able to do so, we protest, and we push back.

December 1, 2016

The evolution of the dad hat

Today at Support for Special Needs:
Excerpt: 
The world of a teenaged girl with a disability is complex, in ways that aren't cute or sitcom-ready. We've discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It's terrifying as a father; it's more terrifying for a young woman with a disability, and Schuyler is old enough to understand what's going on now, and what's at stake. Ten years ago, she was worried about werewolves. That's not what's waiting for her now, though.

November 23, 2016

Thanksgiving 2016

Today at Support for Special Needs:
Excerpt: 
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.