March 23, 2015

Dragons Transformed

Today at Support for Special Needs:
Excerpt: 
Sometimes I don't have words for the things that keep me up at night, the things that keep so many special needs parents awake, staring at the ceiling. Institutions that don't adequately value the amazing human beings they've been entrusted with. Voices from the outside tearing us down, in the guise of civic concern or advocacy or just plain ugliness. And most of all that wordless thing waiting in the future, the one that scares us most of all because we can't see it, we can't even imagine it, and when we ponder it, we are reminded of our own aging frailties and a clock that feels like it's running out far, far too fast. I don't always know what to say about these lurking phantoms and monsters. I'm struggling with them myself.

March 16, 2015

F Word

Today at Support for Special Needs:
Excerpt:

For Schuyler, I don't think it's being different that bothers her. She'll proudly tell anyone who asks what church she goes to, for example, that she is a theist, which means she believes in God but not religion. In this town, that's a bold statement. But the difference of disability still rankles her. She can hear a thousand times that being different isn't a bad thing, and I'm pretty sure she even believes it, up to a point. But only just to that point, somewhere shy of emotional truth.

March 10, 2015

Families Don't

This week at Support for Special Needs:
Excerpt: 
When we talk about a disability community, what I think we're really describing is a family of sorts. Much like family, very few of us actually chose this community as our own. We'd much rather be a part of the Easy Living On A Beach Somewhere Community, but this is the one we were handed, and we're mostly stronger for it. The beach still sounds nice, but whatever. Those families are soft.

March 2, 2015

The Separation Box

This week at Support for Special Needs:
Excerpt: 
This past week was IEP Week, which makes it sound a lot more fun than it is. (It can sometimes feel a little like Shark Week, probably for the wrong reasons.) Our experiences as special needs parents are incredibly varied and diverse, but it feels like for those of us with kids in public schools, the IEP is a universal hurdle. Sometimes it's a success story, but it's hardly ever an easy one. Many of us believe that in a perfect world, every public school student would have an Individualized Education Program. That's mostly because every student learns differently and would benefit greatly from such a focused and customized approach to their education. But there's this teeny tiny part of us that also just wants to share the fun with everyone. Misery loves company; anxiety does, too.

February 23, 2015

Dirty Bird

Today at Support for Special Needs:
Excerpt: 
I won't pretend that helping Schuyler program her device to sound like a George Carlin routine wasn't fun. But as I have been so many times of late, I was proud of Schuyler for taking another step in her journey towards independence and self-actualization. She understands, like any kid her age should, that saying those words in the wrong circumstances will result in a quick path to repercussions. The trick for her is going to be discovering the boundaries that she can push. If Schuyler is to truly own her prosthetic language as being truly her own, it's got to be without restriction. Helping her to take agency over her language possibilities doesn't make me a good father, any more than helping to give her the tools to drop an F bomb in class makes me a bad one.

February 16, 2015

The Technological Why

Today at Support for Special Needs:
Excerpt: 
I have a confession to make, one that on the surface would seem a little awkward, given the public position I've taken on the subject. Sometimes I'm baffled by technology. There, I said it. I mean, I'm not at that "old man standing on the porch in shorts and black socks, shaking my fists at the newfangled world" level of befuddlement. In fact, I don't feel threatened by technology at all, which I suppose is something. By and large, I live a life driven by technology to a certain extent, so I'm getting by okay. But there are embarrassing gaps. I never establish Bluetooth connections on the first try, for example. And I'm glad the Age of the Fax is over, because I was almost entirely incapable of sending one successfully. That was a rough few years.

February 9, 2015

In Defense of Monsters

Today at Support for Special Needs, with a lot of input from Schuyler:
Excerpt: 
Schuyler doesn't hate monsters. She loves them, because she understands them. Monsters are misunderstood. We think monsters are scary because they're different, and she's learned the hard way that the world doesn't like different. And I've always recognized that Schuyler's view of monsters makes for a perfect metaphor for her disability. I use it because it's brilliant. I don't mind allowing the world to give me credit for this metaphor because I'm selfish that way, but like most of my views on disability and how it affects my daughter and the people around her, Schuyler is my teacher. She has been from the beginning.
Art by Laura Sako