I sit ready

[Sung to the tune of ‘I hear Thunder’] ‘I sit read-y. I sit read-y. Look at meeee. Look at meeee. I am sitting read-y. I am sitting read-y. Look at meeee. Look. At. Meeee.’

This is one of several songs that play in my head on a loop at the moment. It’s one of the rhymes we sing in Boo’s weekly conductive education classes. I must confess it’s not my favourite. I actually quite like the one about standing like a Jack in the Box and not sneezing. (You think I’ve gone mad, don’t you, but this is the strange world I inhabit these days.)

These songs have become very important to Boo. They are ways of linking cognitive responses to physical actions. So the Jack in the Box song is a standing song. It acts as a verbal cue (he hears it and knows to stand) but it’s also a form of distraction that encourages Boo and his classmates to concentrate on and be entertained by the song while holding a physical pose that doesn’t come naturally or moving in a particular way. Boo stands for a lot longer if you sing the Jack in the Box song than if you don’t. It’s that simple yet effective.

But he’s not much of a fan of the sitting ready song, either. Why? Well, because it’s the conductive education equivalent of the song ‘Why Are we Waiting?’ It’s the an exciting toy will come your way soon or bubbles, or better still a biscuit or lunch, but not yet song. No you’ll only get the toy, or bubbles or food if you are sat properly, feet flat on a plinth, upright on a regular wooden chair, with your head in the midline and holding rings or a bar with one hand to aid your balance.

Waiting is hard enough when you’re a kid. Deferring gratification is not a skill that’s easy to acquire. To be frank, I know many adults who still haven’t learned that particular life lesson. But when you have to learn to hold off on what you’re waiting for with optimum posture while your brain is sending you wappy signals, well … this a truly Herculean endeavour. Imagine you trying to rub your tummy and pat your head. Upside down. In water. Yes. It’s something like that for kids like Boo.

I think I know how he feels. The waiting game, I’ve found, is an endurance sport and one of the hardest aspects of our new life since having Boo. Don’t get me wrong. I could wait for years for him to sit, crawl or walk if I knew he would be able to some or all of those things at some point. But we don’t know whether or not they will happen. We will only know when they happen. or if they don’t.

I’m not good at being patient. I want to make things happen and I work so damned hard to try to make things happen. But I know that for all our collective efforts we only have so much control over Boo’s future. And I hate that. I really hate that.

But as I was sat next to Boo in conductive education today (with a very hungry tummy after more than 2 hours of really hard work sat waiting for his dinner, sitting in a position that was forcing him to go to war with his own brain) that in this, as in so many things, I have much to learn from my little boy.

He wasn’t comfortable. He would have much preferred to have grabbed his food off the lunch trolley than sit there as still as he could to the ‘I Sit Ready Song’. But he did just that. Because he has learned that he would get what he wanted. Eventually. If he was patient. If he did the right things. Things that just a few weeks ago he couldn’t do at all. Like twisting his wrist against the dystonic impulses he has to grip a pole to keep his balance. Like sitting with feet flat on a box. Like sitting on a wooden chair with no lateral or trunk support. Things I never thought he would be able to do.

And from his point of view it was worth clearly it. The struggle. The wait.

Sure he didn’t know quite what he was going to get at the end of the wait (today it was sweet and sour veg, and I think he was secretly hoping for macaroni cheese – he always wants macaroni cheese) but, you know what? It was fine. The veg got hoovered up all the same. And he left the session full and happy.

I’m not one for sentimental metaphors. Someone quoted Forrest Gump to me after Boo’s birth and when they told me that ‘life was like a box of chocolates’ I did secretly want to give them a brisk kick in the shins. Nevertheless, Boo’s life and how he approaches it has totally changed the way in which I see and navigate my own. And like him, I promise to be both patient and tenacious in the hopes it brings us what we want and he deserves.

So maybe it’s not such a bad song after all. OK, Boo. We’re in this together and if you can do it, so can I: I sit ready. I sit ready. Look at me. Look at me. I am sitting ready. I am sitting ready. Look at me. Look. At. Me.