We’ve been trialling a different eye gaze computer for the last few weeks. Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way (video forthcoming). We’ve become very adept at reading Maggie, understanding what she wants, understanding what she needs and avoiding meltdowns. Of this we’re proud. 25 minutes into Susan’s visit, Maggie was starting to fall apart – arms waving, body shaking, crying, the whole 9. We did what we typically do, sing songs, feed her, whatever we can think of, or whatever we think might help. Susan, rightfully, observed we were just feeding into her behaviors. By giving her everything she wanted or needed, she wasn’t compelled to use her computer to communicate. We’ve felt like we were disciplining her at times. But it’s also hard since, without her being able to talk back, she still acts and responds the way a 2 year old would. We just have to remember that she’s not. Her body may not work and her voice may not work, but her brain works fine. She is smart. She needs everything a typical 4 year old needs. Including discipline. So now, we have to force her to communicate, and while it will be hard for us, let her cries motivate her.
Susan trained us on the next step of the communication device. It’s called Sonoflex and it’s the beginning of sentence structure. Right now all we’re doing is modeling – that means, essentially, we just talk to her using the device instead of using our words. Much the way any kid learns how to speak, Maggie will learn how to use this. To me it seems crazy – it seems like we’re constantly teaching her new languages. Now instead of 12 options on a screen she has almost 30. And the amount of things she can talk about is drastically increased as well. And despite the assurances, and her success on the previous system, I didn’t really know how long this would take.
So we’d go about our business of talking using a touch screen computer. We started talking about our plans for Memorial Day – how we’d be going to the beach, playing in the sand and going swimming.
Maggie selected pail and shells. I asked her if she wanted to collect some shells in a pail. She confirmed that’s what she wanted to do. I had my doubts that that’s what she intended to say. I mean these devices are amazing, but they’re not necessarily reliable. We’re never really 100% that she means what she says. Plus, with her limited hand use, collecting shells has always been both an impossibility and a cause for regret.
But she said it, so when we got to the beach, I passed her a pail which she held in her right hand, an impressive feat in and of itself, considering she almost never carries anything in her right hand and then we scoured the beach for shells.
She had the best time – and sitting there showing her shells and asking if it was worth keeping or not…it’s indescribable. Jenny cried. My heart was full. And all because we started forcing her to do the thing we want most desperately for her to do – communicate.