March 2, 2017

Spaces for the Hard Stuff

This week at Support for Special Needs:
Excerpt: 
Schuyler continues to build a world around herself, and sometimes that means making space for the monsters and the earthquakes and the hidden traps that wait to spring out and destroy the careless. As a parent, it’s tempting to try to soothe the world’s edges, but of course that’s counterproductive, particularly with a seventeen year-old, even one as different as Schuyler. She sees the grief of others and she tries to take it on herself, partly because she is literally the most empathetic person I’ve ever known, but also, I think perhaps she’s trying it on a little. Terrible things happen to good people, Schuyler observes, and so she plays with that grief and that heartbreak in her imagination, just in case she ever needs it for herself.

February 23, 2017

The Persistence of Little Fish

Today at Support for Special Needs:
Excerpt: 
When I wrote about the little fish that quietly eat our kids up while we’re busy watching for sharks, I had no idea how many little fish were going to spawn in the coming years, or how sharp their teeth would become.

February 2, 2017

From the bottom of the sea

Today at Support for Special Needs:
Excerpt: 
Schuyler's world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn't quite the same as that in which the rest of us live. She's got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there'll be no shipwreck this time.

January 25, 2017

This is why.

Today at Support for Special Needs:
Excerpt: 
Schuyler was surrounded and engulfed and protected by a sea of women, and she understood, I think maybe for the first time, just how large her tribe could be. As she grows older, Schuyler's people becomes a more inclusive group, more intersectional. She took a big step at the march. Her disability advocacy took on more feminism that she'd felt or shown before. Her world grew bigger, and with it her protest and her advocacy.

January 19, 2017

Exploring Worlds Both Dark and Lovely

Today at Support for Special Needs:
Excerpt: 
In taking my own focus inward to her more immediate world and trying to help as best I can, I feel like maybe I can recapture my own sense of autonomous self. I can't solve the Big Thing, but I can tell her what it was like when I was seventeen and trying to figure out if love was a thing for me. I can tell her what I got wrong, which weirdly seems to give her comfort. I have value as a cautionary tale, I suppose, which is true of my adult, parenting self as well. So many times, I feel like my fatherly approach to the walls that stand in her way is to keep smashing my face into them over and over until I find a brick that's loose.

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.