September 30, 2013


Today at Support for Special Needs:
I can remember back when it felt like we'd never be able to forget, even for a moment, what hung over her head. But time passes, Schuyler grows and becomes more adept at moving through this world, and so her reality is less front and center. Her brain is so creative and effective in its rewiring and rerouting that it's easy to forget how profoundly malformed it is, anywhere from sixty to seventy-five percent of it affected by her polymicrogyria. It's easy to fall into a place where we simply assume that this brain, broken and clouded but working with startling effectiveness, will always function with such inexplicable success. Schuyler's brain hasn't failed her yet. It hasn't experienced the kind of seizures that her doctors expected, none of the grand mal variety that were supposed to lay her low years ago. It's very easy, at least subconsciously, to confuse her current fortune with a guarantee.

September 23, 2013


Today at Support for Special Needs:
For families like ours, the paths we walk aren't ones that are all that well-travelled. We don't always have that many examples of How Things Are for families of children with disabilities that are both subtle and conspicuous, and so we find ourselves searching for those paths, threading carefully, balanced between extreme possibilities.

September 16, 2013

The Things We Do Not Say

Today at Support for Special Needs:
For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn't real.

September 9, 2013

Stealth Monsters

Today at Support for Special Needs:
Parents of special needs kids with less visible disabilities spend a lot of time trying to moderate the effects of curiosity and casual observation. We worry that our kids will be judged unfairly by the outward manifestations of their disabilities. When our kids manage to pass unnoticed through the world, we find ourselves admitting, with varying degrees of shame, that we are proud of them for avoiding the judgment and scorn of a cold society. But it's safe to say that we do the same things ourselves. It's different for us, of course. When we identify a kid having a meltdown in public as something besides an entitled brat, we do so with empathy. But we still do it. We still play our own version of "What's going on here, exactly?"

September 2, 2013

Everyone communicates

Today at Support for Special Needs:
It's when we are faced with the subtle, nonverbal communication tools of the disabled that we find ourselves challenged to learn the language of the land, and learn it quickly and without translation to ease the process. How much easier it is to simply declare communication as unattainable, and to place the blame for that failure at the feet of the disabled.
2007: Schuyler's howl of joy upon seeing the Empire State Building for the first time.