Schuyler has a new tool, and new options. Schuyler got an iPad Mini. She's using it at school for the first time today.
Using an iPad as a speech device isn't a new idea for Schuyler. At her most recent IEP meeting last spring, she used her dedicated speech device to tell the committee that she wanted to start using an iPad to communicate in school instead. Her expensive speech device's last hurrah was to advocate for its own replacement, kind of like asking the guy who once delivered ice blocks to install refrigerator/freezers on his way out the door. She spoke to the committee about the academic tasks she'd be able to do on an iPad besides just talking. And then she played the card most dear to her:
"My brain won't let me talk. If I use iPad, people not look at me. They don't know I can't talk."
Schuyler could see the advantages the iPad would bring her. But mostly, she knew it could facilitate the thing she desires most of all. It might help her present herself as being just like everyone else.
Well, that's a heartbreaker for a father.
Plus: Negotiating the IEP
Over the course of the last two semesters, Schuyler has used a first generation iPad that has served its purpose, but with limitations. There were issues with the speech software she wanted to use, an iPad app version of the language system she has used since she was five. On the old iPad, it was slow, so much so that when she touched the screen to make it speak for her, there was a delay, several seconds. That might not sound like much to you, but imagine if every time you opened your mouth to say something, you were on a five second delay. Imagine what that might do to your conversational experience. And the app crashed, frequently, on the old iPad, which we took to calling "the CrashPad".
But it was a beginning. As of today, she finally has a tool appropriate to her needs. The Mini is fast, its response time in her speech app is instantaneous, or very nearly so, and it has new whistles and bells (including a camera, God help us all). More importantly, the size makes it small enough for her to hold it like she would a phone, or a game controller. Suddenly Schuyler has a tool that fits in her world, that of thirteen year-old girls who chatter and text and move at higher speeds than she does. Now she has a chance to perhaps be a part of that on some level. I think it's going to be good for her.
Things change so rapidly in technology, and the ways in which it can be applied to disability-related challenges are constantly subject to re-evaluation. A few years ago, when Schuyler was a much younger, much less communicative child, this issue wouldn't have felt crucial. Now, the social piece of assistive technology becomes the greatest issue. It is the most daunting impediment to implementation, but at the same time, it also holds some of the most compelling incentives.
Most of all, accommodating the social integration challenges of assistive technology gives Schuyler and kids like her the possibility of a measure of independence and self-determination. Those are goals that are both persistent and tenuous. For Schuyler and her friends, self-advocacy is vital, but it flutters through their lives on gossamer wings. It's delicate, and it falls apart so easily.
This is just another tool. But God, it couldn't have come along, or captured her interest, at a better time.
(Note: As I was writing this, my phone suddenly buzzed with a request for a FaceTime connection. It was Schuyler, giggling like a monkey while she sat in her class and videochatted. I can't imagine that her teachers would be okay with this. I also can't imagine being prouder of her, or happier to see her.)