As parents of children with special needs, it is very easy to get caught up in what the future looks like through the lens of our kids’ disabilities. I don’t think this is a bad thing, in and of itself. We talk about wanting the world to accept our kids as they are, and we declare that our sons and daughters have the right to move through that world with as much fairness and grace as anyone else. We believe these things sincerely, but as our kids’ primary support people, we understand the work and the worry that goes into making these things happen. We strive our whole lives to clear the path as best we can, and so we, perhaps more than anyone besides our kids themselves (and maybe even more than them sometimes), we scan the horizon for obstacles. In doing so, I think perhaps we miss some things, the simple moments divorced from the world of disability, as much as anything ever can be for our kids.
A few months ago, Schuyler and I joined some of the fine people at BridgingApps as panel participants at SXSWedu and SXSW Interactive. The talks centered on the use of apps on consumer electronics platforms for clients with autism and other neurological and intellectual disabilities. Schuyler was excited to be there and even gave a demonstration of her speech app at one of the presentations. She was asked by one of my fellow panelists if she would like to write an essay giving her perspective on using her iPad. After getting fired up from a meeting a few weeks ago with a fellow polymicrogyrian (if that’s not a word, it should be), Schuyler finally got around to writing her essay, which she titled “To the people like me :)”. It posted on the BridgingApps site over the weekend.
Aside from some help (at her request) with spelling and capitalization, the essay is all Schuyler. After she gives her history with assistive technology, Schuyler focuses briefly on why she prefers using the iPad to her old dedicated speech devices (“It makes me as other people. When I used my old speech device, it looks like something wrong with me… It looks I’m like other people.”).
Then she turns to her future hopes and dreams. And they don’t look that different from what any other fourteen year old girl might express. She wants to assist other people with similar disabilities (“To the people like me…”), a sentiment that isn’t new for her but which does my heart good every time I hear it. She wants to help me with my next book (something that she is in fact already doing), and she wants to write her own book one day. Schuyler would like to live independently, but not TOO independently. (“…if I get lonely and I can find my mom and dad.”) She wants to drive. She wants to get married one day and have kids. Two, to be precise.
When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She’s growing up quickly; today is her first day of high school, after all. We’re having conversations identical to those happening in other houses around the world, about how it’s appropriate for her to be thinking about boys she’d like to date, or girls she’d like to date, for that matter. (“Or both!” she said during our last conversation about dating; she’s going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she’s working on them. And the thing is, only some of those doubts stem from her disability.
Schuyler’s eye is fixed firmly on the prize, and her monster doesn’t get to call the shots, not if she can help it. She can be a little monstrous herself when she needs to be, and her life, both ordinary and extraordinary, will be the better for it.
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