For the first six months or so I read the ‘Your Baby Week by Week’ guide religiously. It was so exciting reading ahead and seeing what new development would appear next week. What my baby would be doing, what new skill would develop, what I could look forward to. I would largely ignore the section on how many hours sleep in a row I was supposed to be getting as it seemed designed specifically to piss me off, but asides from that it was pretty gratifying.
Until they started talking about movement.
Tilly’s movement was never quite right. She didn’t crawl. Which according to the wisdom of the internet is not that unusual (don’t worry if your baby isn’t crawling! 10% don’t! It almost never means anything at all!). But it wasn’t just crawling. She didn’t roll to get anywhere, didn’t bum shuffle, didn’t pull to stand, didn’t sit from standing. She wasn’t mobile in any way until one day we put her on her feet and a little while later she walked. And if she fell over she was stranded again until we picked her up. There are no reassuring articles about that.
It was so frustrating in the early days with doctors and physiotherapists. Constantly trying to explain what was wrong and being told over and over again that ‘not all children develop at the same speed’ and ‘we musn’t compare our baby with others’ and, my personal favourite, ‘some children don’t crawl. If they can walk why would they?’ Yes, I mean walking and then falling over and being stranded on your way somewhere isn’t frustrating at all. In fact, you’re right, she LOVES IT.
It’s one of the examples where being a swan makes it all the more difficult to get support. Her skin was such a visible problem that talking about that was easy. Trying to talk about her movement was impossible in the early days and is still tricky now.
With no diagnosis I start every conversation with every new professional with ‘it’s not just her skin, it’s also her movement. It just isn’t quite right.’ And then wait to see which reply I get.
So when all the medical intervention started I stopped reading the baby books because many of milestones became irrelevant. I can tell you it’s no fun to read that your child should be jumping when they still can’t pull to stand.
This week we had our own special needs first. The first time I told a class teacher that Tilly has a movement disorder. You see like all middle class parents everywhere, we’ve taken up ballet. And it’s really clear that Tilly can’t move in the same way as other kids (not that I should compare, obviously). And that in order to manage her participation the teacher needs to be let in on the (really obvious) secret.
It wasn’t such any easy call to make though. I mean firstly we don’t have a diagnosis so there’s the continuous boring question of what to actually say. And with no diagnosis there’s the doubt that maybe it’s not obvious to anyone else, maybe I don’t need to say anything. And then, once I’ve overcome those issues and decided that I do need to say something, there’s the concern of putting limitations on Tilly. What if the doctor was right and she doesn’t run or jump or stand easily because you know, why would she? Maybe she can and does do all these things but only when I’m not there and I haven’t placed unnecessary limitations on her.
And all these thoughts lead back to the same place which I’m all too familiar with and which comes with the swan territory. Denial.
But this time I didn’t cave to it. I stood up and for the first time said out loud to a person of authority/preschool ballet teacher that Tilly has a movement disorder. Not might, or could or maybe. And she didn’t laugh at me, or look sad, or question me. She just said thanks for letting her know and she’d support where she needed to. And with those words, I am now the parent of an additional needs child who does ballet and loves it.
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