Our oldest daughter has Rett Syndrome, a rare genetic disorder that stole her ability to speak among other things. We got the official diagnosis when she was two years old. We didn't really know what that meant at the time, and relied a lot on the advice of her medical team and therapists to know what to expect for her quality of life. We got a lot of "just try to make her happy" types of advice, and went with it because we assumed these people knew what was best.Then a few years ago there happened to be a Rett Syndrome conference only an hour away from us, so we figured we should probably take advantage of the opportunity. While there we heard all these new-to-us ideas about presuming competence and working toward literacy that had seemed so out of reach before. But looking at the nodding heads around us, it suddenly all seemed possible. It was really empowering.
We came home, grabbed a tablet and searched for any free speech app (more on that in a minute) we could find to at least get started with our daughter. We'd done some yes/no using her eyes before, but she hadn't ever engaged much so no one (including us) had ever pushed for anything more than that. But when we started holding up a page with six choices on it, and showed her how those choices led to other pages with more choices, her eyes came alive. Suddenly her yes/no became consistent, she'd engage more when we would talk to her, and she started expressing her own desires and interests. She hasn't looked back and we've been scrambling to keep up with her ever since.
I don't actually remember which speech app we found, but it wasn't very good. It took me about two hours to get a couple pages put together, and I was grumbling the whole time. As someone who studies usability that actually happens to me a lot, but this was definitely worse than usual.
The app was an acceptable first step for our daughter, but it would have slowly sucked the life out of me if I'd had to keep using it. Plus we couldn't back it up or see any kind of reports on how our communication was looking over time. Even after switching to a more advanced device we still had to keep a log ourselves to figure out what her communication was looking like over time.
I started reaching out to specialists and experts across the country to learn what they liked and didn't like about AAC apps. What I found was that the frustrations we were having weren't all that unique. There is a lot of untapped potential to improve the usability experience for everyone supporting the individual communicator, but most people don't seem to be aware of how much better things could be.
So we started CoughDrop to work with those experts on building an AAC app that would do all the things an AAC app should do. A big part of the goal with this endeavor is to provide a more usable speech app. But it's also about doing a better job empowering the support group around the individual to feel like they really can make a difference, and then informing them of what's working and what isn't as they go forward. We don't want anyone to feel like successful communication isn't possible, or that it can't continue to grow over time.
We still have a long way to go, but we're here to try to make things better. Let's make sure every voice is heard, loud and clear.