She’s been doing so well for so long that I was starting to feel like we had a handle on it and that we weren’t going to need to adapt her life around Rett Syndrome. I was starting to feel like we were figuring out how to make Rett Syndrome adapt instead. But, now, I have to come to grips with even more adaptive gear.
While I’ve shared some of the progress on her eye gaze computer, it’s been more frustrating than the videos or these blog posts have shown. There have been days when she hasn’t used it at all. There are days where it was impossible to tell if she was deliberately activating anything.
We now recognize that one of the problems has been we’ve been asking her to do too much. We can’t expect her to use her brain to communicate when we’re asking her to use all of her energy just to sit up straight. It makes sense, but it’s hard to admit that those two seemingly simple tasks are too much for Maggie to do simultaneously. Regardless, the conclusion is the same: we’re going to have to get her a special needs chair.
For now, we’re just using a car seat. It’s helping. Scratch that – It’s helping a lot. Finally supported at the table, she’s full on communicating with her eye gaze system, navigating between pages, telling us to read her a book, picking the book, reading along with us, asking us questions, telling us she wants to color, and generally having full on conversations. I’m going to try to get a video of it up soon on the Youtube channel. It’s been so different from what it has been, I’m finally understanding how much this device will really open up her world. And that’s something we’ll be happy to adapt to.