Right about now, unless you got up early (sorry about that) or slept in until after lunch (go, you!), I’m probably busy at the moment participating in a panel at SXSW in Austin, on the topic of how technology can help the special needs community come together and support each other. The panel also includes the very smart and cool Kate Canterbury and Support for Special Needs’ own Jen Lee Reeves, and I think it’s going to be one that everyone can be proud of. If you’re here in Austin, I hope you’ll come see us.
Tech has been an important part of Schuyler’s experience from the very beginning. I can remember watching the hospital tech at Yale roll my unconscious daughter into the MRI tube when she was three, a shot in the dark procedure that solved the mystery of Schuyler’s wordlessness. It was a moment of very mixed emotions, as technology provided us with the answer to our questions, albeit not even remotely the answer we were hoping for.
After we received Schuyler’s diagnosis of polymicrogyria. the internet offered a mix of comfort and fear, of parents who had been there before us and of worst case scenarios that were very worst case indeed. But that’s the thing about technology. It’s neutral, in ways that we as flawed, wonderful, terrible human beings can never truly be.
Returning to Austin is complicated for me as well. It was here that Schuyler took her first steps with assistive technology, steps that led to her first real experience with expressive language. It’s not hyperbole to suggest that AAC technology made all the difference Schuyler. And yet it was here in Austin that the flawed humans in her school district failed her, failed to recognize the possibilities and failed to believe in her most of all. We moved from Austin to enroll Schuyler in a school in the Dallas area, a school that believed in those possibilities, HER possibilities. We’ve made some questionable choices and we’ve made some good ones, but the decision to move to Schuyler’s current school district was perhaps the very best one we ever made.
In the best and worst of our experiences with AAC and Schuyler’s schools, technology has been at the center. And it is interesting and significant to note that tech hasn’t failed Schuyler, and it hasn’t saved her. For Schuyler, technology has been a tool that has been wielded clumsily by some and with expertise by others, and it is in those human successes and stumbles that the true story lies.
Now I’m watching Schuyler take the next steps in her relationship with tech, one in which she transitions from dedicated speech devices that cost thousands of dollars to purchase and maintain, and embraces the world of consumer electronics and mainstream technology. I’m watching her use an iPod Touch to text her family and friends, and learn sign language from an app on her iPad. I’m seeing Schuyler use the internet for entertainment and for information, and most of all for communication. Real, authentic, spontaneous communication.
And she’s doing so using tools that we purchased at the mall. This is what a more democratized technology is doing for her. It’s what it’s doing for a lot of people. And it’s an exciting time to be a part of her world, a world that is becoming interconnected with a larger one around her.
The Future is a scary place for parents of kids like Schuyler. But sometimes, when I look at the advances in technology and how she is very likely to benefit, it’s marginally less frightening, for a moment or two. And I’ll take that.