March 28, 2013

Three Cheers for Inclusiveness

Today, over at the 504:
It's easy to make fun of the A for effort, the trophy for participation, but the fact is, for Schuyler and countless kids just like her, those trophies are the ones that sit on their shelves. And they're not cheap tokens of faint praise, either. It's impossible to overestimate the hard work and perseverance those trophies represent to kids for whom participation alone is a triumph. That very real accomplishment is made possible by programs like the Special Olympics, or the Miracle League in which Schuyler plays soccer and baseball with other disabled kids, or the inclusive cheerleading squad at her middle school. Schuyler and her friends try so hard to fit into the world. In programs like these, they succeed.

March 25, 2013

What We Need

Today, on Support for Special Needs:
There's a great deal that we all could use from those around us who love our kids and want to be a positive presence in their lives. We don't always know how to ask for help, nor do we often admit openly when we're in over our heads. That high water mark is different for us all. Some lucky parents might never get there. Others perpetually exist in a place of quiet desperation, and the people around them never suspect a thing, not until they really pay close attention. Sometimes you have to really be watching for it. Most of us won't ask for help very often. Very few of us will ask a second time.

March 19, 2013

Finding Her Own Voice

Today at the 504:
It's one of the dirty secrets of assistive voice technology. There are a million good reasons to use it, and the innovations advance remarkably every day. But as one noted assistive tech innovator pointed out to me as we sat in an exhibition hall full of the latest technology, "Every piece of assistive tech equipment in this room says the same thing to the casual observer. It says 'I have a disability.'"

March 18, 2013

A Father's Fear

Today at Support for Special Needs:
As a parent, those statistics are sobering. As a father, or at least as this father, these odds fly in the face of every protective impulse I feel, and I feel a lot of them, all the time. When Schuyler was a little girl, protecting her felt, well, not easy exactly, but it felt possible, at least. Now that she's thirteen, it seems as if the dangers to my daughter lurk in every darkened space, every hallway at her school, but most of all, those dangers hide in her own trusting and gregarious and naive nature. Schuyler understands a great deal, but she trusts very easily and is eager to meet new people, eager to a fault.

March 11, 2013

The Quiet Times

This morning, over at Support for Special Needs:
His advice to us has been more therapeutic than medical. "Let her be herself," he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it's just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it's good advice, even if it can be very difficult to take.

March 6, 2013

On the Word

As a part of today's observation of "Spread the Word to End the Word", sponsored by the Special Olympics and Best Buddies, I've written a new post over at the 504. Just revisiting some thoughts on "The R Word", from a recent speech:
In recent years, I've found myself getting caught up in exactly how unprepared the world really is for our kids, and how ugly the result can be. It's easy to forget. It's easy to become so insulated in our everyday lives as parents and so infatuated with our own beautiful children that we forget that to much of the outside world, these kids are simply perceived as being... less.

March 4, 2013

Traveling Companion

Today, at Support for Special Needs:
I see how Schuyler is at these conferences, and I get a glimpse of what her life might be like one day. I see in Schuyler a natural advocate, and one possible face of disability for the world. I know it’s frowned upon by many to use the word “inspiration” when it comes to those with disabilities, but that’s just what Schuyler can be. It’s not so much in a “gosh, what a plucky little trouper” kind of way so much as “all of this just might have a happy ending one day”. Parents of kids like Schuyler see a possible outcome, and maybe they’re not quite so afraid.