Voices of Change

It’s easy to miss how the world changes around us. It’s easy to miss as we change with it.

So much time has passed since Schuyler began using Augmentative and Alternative Communication technology in 2005 that it’s almost as if she’s been using it all along. In my mind, there are two Schuylers, the ethereal one who existed very much in her own internal world before AAC, and the expressive, eager to participate Schuyler I know now, the one who works hard to be a part of the world and the society around her, and mostly succeeds. The Schuyler I describe in my book is not the Schuyler I know now, and I truly believe that AAC made the difference.

She began with the most basic of tools, a simple device with a handful of buttons that she could wear around her waist. It didn’t give her all that much in the way of new communication; she already knew and used sign language for all the basic statements enabled by this device. But the change for her was dramatic. She loved it, and she used it almost non-stop during the brief time she had it. It was a game changer for her, we could see that immediately. Schuyler was in love with having a voice, the one thing she’d been denied in her young life until then.

From that simple experiment, Schuyler became immersed in AAC. After a fight with her school district and a remarkable online fundraiser, we were able to give Schuyler an advanced dedicated speech device. In the years since (God, has it really been almost seven years? That can’t be right…), Schuyler has communicated using the Vantage, and later the Vantage Lite (hot pink, naturally), produced by the Prentke Romich Company. This device has done more than give her expressive language, although it has most certainly done that. Through its core language system, it helped to teach Schuyler and then reinforce for her the basics of how language works.

One of the things that I remember telling people about her device, the one she calls Pinkessa, is that it could very well serve her into adulthood, but the changing world, and our changing daughter, will probably have different plans. The love of words and language that Pinkessa instilled in Schuyler is driving her in new directions, and towards new technologies. Schuyler uses an iPad for a number of tasks, ones that excite her, things like learning sign language and seeing the night sky in new ways and combining the written word with visuals. She uses it to access the web and look up information for her homework, and to watch streaming movies when she’s stuck at my office with me. (And yeah, Angry Birds. Well, what are you going to do?)

And she uses it sometimes to speak, at the present time using an app called Proloquo2Go. Although she prefers the language system on Pinkessa, Schuyler gravitates towards the iPad. She seems to intuitively understand that the world is paradoxically bigger and at the same time more immediately available to her than either she or I ever understood before now. Schuyler also uses my old iPod Touch to text with friends and family now. She wants a phone, not to talk because she understands how limiting verbal speech is for her, but so she can text. When Schuyler communicates via text messages, she’s not the poor little disabled girl who can’t talk. She’s like you and me. She’s funny and she’s curious and there’s no impediment to her self-expression. (She has a particular love of the little Emoji characters; if you text with her for even a short time, she will inevitably send you a little farting monkey.)

Five years ago, I couldn’t have predicted how Schuyler would be nudging open the door to the world like she has just in the past year or so. That door has gently and quietly burst open for her, and I watch with fascination as she begins to find her own way in a larger universe. I like to imagine what her world might look like in another five years, although honestly, I know my imagination is far too small.