May 18, 2015

A writer in the family

Today at Support for Special Needs:
Excerpt: 
These days, Schuyler is interested in writing, which of course makes me happy in the most egotistical and selfish way. She writes, and not just for class but rather because she likes it. She wants to take her imagination and put it into motion. She doesn't usually write about herself or her own life, not just yet. Schuyler creates stories, almost always of the fairy tale variety, and she peoples them with heroes and villains and princes and queens, and monsters. Always monsters, usually antagonists but not always evil. Even now, she understands that sometimes the monsters of the world simply have their own agendas, and they need to be taken seriously.

May 12, 2015

Running the clock

Today at Support for Special Needs:
Excerpt:
We talk about this a lot, and I suppose I write about it pretty often, too. I won't apologize for the repetition; it's the colossal bugbear that haunts our thoughts and disrupts our sleep. Three years. Just three years remain before Schuyler is out of school. Three years to figure out what that looks like. One more year of high school, then two years of senior high. (Don't ask; her school district does things weirdly.) And then she's away, off on the next adventure. What that looks like, no one knows. But it's coming up fast, and that inevitability is beginning to inform more and more of her life.

May 4, 2015

Between Friends

Today at Support for Special Needs:
Excerpt: 
Every now and then, Schuyler has the chance to connect with another AAC user. It doesn't happen as frequently as it once did, and certainly not as often as she would like. She doesn't have many classmates using AAC devices at school now; I think she might actually be the only one in her particular classes. She no longer has her tribe, which I suppose is as expected. She was always going to be an outlier. But when she finds herself with another user, she falls into a comfort zone that I can't even begin to understand in a meaningful way.

April 27, 2015

Tag Out

This morning, at Support for Special Needs:
Excerpt: 
I need to quit worrying about the people who are supposed to be helping our kids but aren't, or about the society that should be opening doors for them but is politely but firmly closing them instead. For just a little while, I need to step away from the fear, and from the sense of injustice and from the feeling that I am growing old at a far too rapid pace and that time is running out for me to be able to fix everything for my little girl before I go, because goddamn it, that's what fathers are supposed to do.

April 20, 2015

The Little Fish

This week at Support for Special Needs:
Excerpt: 
As parents of kids with disabilities, we step up to the big fights, and while they can be exhausting and definitely take their toll on us, I think in some way we prefer them to the alternative. The struggles that truly tear us down and leave us dispirited are the little ones, the tiny indignities that defy our long-developed skills for the Big Fight. They can't be confronted with a sword, and we're not necessarily adequately armed with flyswatters. We fear our children being eaten by alligators, only to discover that they are more likely to be devoured by little fish, one tiny bite at a time.

April 13, 2015

The Invitation Game

Today at Support for Special Needs:
Excerpt: 
Sometimes I learn things about Schuyler the hard way. Important things. Things I feel like I should have figured out by myself. Often they're things she keeps to herself, little pieces of inner sadness that she silently holds in her pocket until the day comes when she hands one to me. I don't think she shares so that I can make those tiny sadnesses go away; at least I hope not, because otherwise I'm failing her miserably. I think Schuyler just wants to be heard, and for her anxieties to be aired once in a while. That seems fair.

April 6, 2015

Schuyler and the Big Questions

Today at Support for Special Needs:
Excerpt: 
When speaking to groups where I know there are going to be a lot of people of faith present, I still talk about God. I talk about Faith and God and my own broken spirituality and what kids like Schuyler may be able to teach us about such things. I kick open the door to a conversation that isn't about convincing anyone or being convinced, either, but rather an exploration of perspectives that might just bring us all a little closer together. I'm not religious, and I'm certainly no Christian, but I don't need to be snotty about it and assume that believers won't listen to me or treat me with respect. I like those conversations. I try to draw them out with my speeches when it's appropriate.