Excerpt:
Dignity isn't a treat for the fortunate. It's a basic human right, one that you get to put in your pocket the day you're born. It's not something you're granted by the world. It can't be given to you; it can only be taken away.
Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
Excerpt:
Dignity isn't a treat for the fortunate. It's a basic human right, one that you get to put in your pocket the day you're born. It's not something you're granted by the world. It can't be given to you; it can only be taken away.
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.
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.
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.
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.