Putting down a marker

I think sometimes it’s worth putting a marker in the sand. To say ‘We are here’ in case, later on, we forget how far we have come. We forget sometimes, OH and I, just how far Small has come on his long and hard-won developmental journey. There was a time when we marvelled over the fact that he was able, with great concentration, to close an egg box. We cried, he and I, in the kitchen as we made Small do this again and again. We had worried he would never use his hands. Or his eyes. Or his legs. Yes, we set that bar low, because we just couldn’t cope with any more disappointment.

Small has come a long way since then.

He picks up toys with great dexterity for a boy with no pincer grip and CVI. He is all about grabbing. But he grabs with thought and direction. He picks up toys, keys, everything and turns them over, examines them like a watchmaker, passes them from hand to hand, before dropping them down to start on the next item that’s caught his eye.

He understands pushing buttons. My mother, on more than one occasion, has noted that he has more noisy toys than any other child she knows and she’s probably right. Small loves cause and effect toys and we love giving him the opportunity to show this to us. The noisier the better. When he and Big are in full flow…. actually, it’s lovely. I’m sure if he were a regular 3 year old I’d be telling them to stop it as they were making too much din but we are just grateful there is noise in our house from both our children when we were so scared, for such a long time, that this would not happen.

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He will finger feed. I’ve touched on this in previous posts but I’m just going to mention this here too. I can give him bread, raisins, cheese, pasta bits…. and he will pick them up and he will eat them. He does not play with them, he does not spit them out. He understands that this is food, not poison, and pops it in his chops. For two reasons, this is amazing. First, he never used to do this, he used to pick it up, squish it in his fingers and drop it. If I then put it on a spoon and fed it to him he’d eat it no problem. Go figure. Secondly, it frees up my hands. I can make a pile of food chunks and hand them over bit by bit thereby enabling me to help Big with the more complicated parts of eating like cutting up toast and avoiding putting your freshly washed and ironed cardigan in the butter. Again.

Small sits up. Properly. The straightness of his back varies as to how long he’s been there, so we do still sit him on his lovely wedge just to remind him, but he does sitting. Once again, for those of you at the back who may not have heard, he does sitting!!! This has, no underestimation here, revolutionalised life. Small is quite a tall chap, and lying him down for a kick was starting to take up a lot of floor space. Now he sits it a) makes him look a bit more age appropriate b) allows him to play and interact with people and toys in a whole new way and c) makes it a whole lot less likely someone will trip over him. I cannot tell you what pleasure it gives me to put him down to sit, not put him down to lie. Something I rarely mention to anyone is that, back at the start of our medical journeying, our geneticist said ‘If they sit, they will walk’. He weight bears. He will step. This is done with considerable support, but he will take a couple of steps.

Wonderfully, comprehension is coming too. When we say to him, ‘would you like some breakfast?’ Small will say ‘More’. Small has made the link between breakfast/ lunch/ tea/ all the words relating to food and the word ‘More’. Food is a big motivator for Small. Unsurprisingly, chocolate is possibly the biggest motivator of all…

Don’t get me wrong. Small has a set of severe and complex disabilities that mean he will need lifelong care. No doubt. Every day is a new challenge in terms of what that will mean for him individually and us as a family. But Small is striving and his brain is trying and that, as with all our children’s developments, that has to be marked.

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