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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.
You guys are doing such a great job. Maggie is so precious. We love her.
Thanks so much Bobbie and Cy! We love you too!
Clever use of a carseat and way cheaper than an activity chair! We use a cub chair and she is too big now but we are waiting on an activity chair. Positioning is everything, you wouldnt think it but wow what a difference! Keep up the good work Maggie and Mom and Dad!
I’m not quite sure it gives the right support – but it really does make a difference. Thanks Carrie!
Love that picture! Beautiful Maggie looks like she is ready for the next activity.She is blessed with parents that are so loving and attentive, striving to work with her and for her to keep moving forward.
Ready, willing, and able.