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Year 1 of school is in the books. Hard to believe how difficult a decision it was for us to even send her to school. We were so nervous that she would lose more of her hand function, more of her speech, that without us pushing her every single minute, she would regress.
That’s what Rett Syndrome does to a family, it leaves you in a world of uncertainty. We’ve already seen her regress once – watched as her body, her balance, her nervous system started failing itself; and the fear of watching that happen again was paralyzing. We had our reservations and some of her doctors had their reservations.
But the teachers were so welcoming. They were so friendly and experienced. This particular pre-school integrated all of her therapies in one place. We still supplemented with outside therapy, but she’d be getting work by professionals and we’d be able to have a few hours not forcing her to do things she didn’t want to do. Those professionals helped troubleshoot and come up with solutions for the things that would come up.
Now, I can’t say it was perfect. In the end, I’d say she probably did lose some hand function, some control over her arms, and I’d say she’s about even from where she was with speech. Does that suck? Of course it does. Some of it was out of anyone’s control. Except Rett. It is definitely Rett’s fault. But I can’t blame anyone else and it wouldn’t do any good if I could. That’s the progressive part – the part that keeps delivering new symptoms and making the ones she does have worse. I mean, any loss she experiences at this point is not from lack of trying.
In any case, at school they definitely worked really hard on behaviors. Before school she would run incessantly around a room, never stopping to pause except, maybe to bang her head against a wall.
Now? She chooses to sit. And for her, even something so simple, is great progress.
I remembering visiting last year during her first week of school. Maggie seemed tired but happy, and you two were concerned about how it would all turn out. I think her smile says it all – that it was a good year!