I was having a moan with a colleague this week. She is also a carer and we were talking about support. I grumbled that, three years on from our referral to social work, we still hadn’t been fully assessed for support, far less received any. She found that astonishing, she said, because she knew of few children more disabled than R. I was taken aback. She’s right, of course, but the odd thing is, we just don’t see it. In fact, by and large, we don’t really notice R’s disability at all. Sure, her health issues are a constant source of concern; yes, I am worried about her education; true, she has mobility, feeding, breathing and all manner of other issues. But disability? Don’t see it.
I have no idea if this is typical and of course there are times when the disparity between R and other children is impossible for me to overlook. Transitions are terrible. R’s enrolment at school still stands out as one of the worst experiences that I have ever had as a parent. With a breath-taking absence of sensitivity, the council required that children who would attend the special school enrol at their local mainstream school. Our local primary school is very popular, so this meant standing in a queue with almost a hundred other parents and children excitedly chatting about starting school, waiting our turn to see the Head Teacher. R was the only child going to the special school. It was heartbreaking.
But apart from these odd occasions, what we see, when we look at R is only our bright and adorable little girl. We see a girl who is cheeky, who likes her own way, who loves The Beatles, who would pick Pringles over parsnips every time. We don’t see her disabilities. We just see R. Perhaps that’s the point: Rett does not define R. She is a little girl who happens to have Rett and all the baggage that comes with it; she is not a Rett girl (I hate that term). She is just R and that is a lovely thing to be.