Sending your little one off to school is a gigantic milestone in itself but when they have the potential to have a form of extra ‘bendiness’ in our case hEDS, it adds so many more layers.
Here in Wales we send our children to full time school at 3 and the mix of relief that you finally have some time to yourself to try and help your physical health is very heavily hit with the reality that your children are growing up and becoming their own little people in this world when they still seem to tiny.
For me, it also meant for the first time that I wouldn’t be around to monitor my son’s health for the majority of the day. I knew that although they seem far too small, even at this age they are now in control of so much and make so many of their own decisions, so as scary as it seemed, this also meant his health.
I’d had a brief chat with the school about our hypermobile child starting school, but understandably for them, unless there is a formal diagnosis these days other than keeping an eye, there’s not an awful lot they can officially do. But I realised that instead of letting this be a big, daunting prospect, I could use it for good. In our house we’ve always been big on listening to our body and what it is trying to tell us. Not just with our physical health but our mental health too. We have slow days when our bodies are aching and sore, we try to pace but we also understand that sometimes life is just boom and bust and we ride on through until we can rest, reset and start again.
But I’ve also tried to teach my little boy that he will always be his best advocate and while I’d love to be there holding his hand through everything, in reality I know that won’t always be the case. So, we take it all at his speed. I’ve tried my best to teach him that he doesn’t have to say no and then feel different if he’s not feeling up to doing something his friends are doing, he just needs to find a way to adapt. Maybe for example - wait at the bottom of the slide and pretend to be a dinosaur that’s going to get them if he doesn’t feel like he can climb the ladder or be the shop keeper instead of the shopper so he can sit down when they are in the role play corner. He can listen to his body and still participate just like his friends. And if there is a day when he just can’t do that, then it’s ok. There is nothing wrong with just chilling in the book corner reading his favourite book.
Thankfully the school so far have been understanding and he can wiggle and move whenever he needs to and they also seem to be fully on board with just watching and waiting to see how it goes. Of course, if I had to chat to the teachers I would in a heartbeat and I know that in a flash anything could change but I’m trying with every new hurdle we face to remember how I felt at the time, when these conditions were even less talked about and diagnosed, so that I can hopefully give him all he needs - the things that I so desperately needed, but my parents couldn't give me because they didn't know about hypermobility or how to manage it - so that he can live his life to the absolute fullest it can be.
Commentaires