Playtime

As my friends on Facebook will know, we reached a major milestone this week. And as other special needs parents will appreciate, what is a milestone for us is something that many neurotypical children do so automatically that it’s barely worth noticing. He started playing. At least, that’s what I’m going to call it. He made repeated (if small, slow) movements with his hands to (successfully!) move an item (one of those silver space blankets) in a way that interested him. Now that’s progress!

And progress not just for him but for all of us. It’s not easy to play with someone who doesn’t respond, who isn’t able to tell you what he likes and what he doesn’t, what he wants to rattle and what he wants to look at. It’s so easy to get disheartened, to plonk him in a corner with something shiny, not thinking he’ll even look at it let alone engage with it, and carry on with making the dinner. So I’m really hoping we’ve hit a kind of positive feedback loop here: I give him a toy, he plays with it, I play with him more. Result! We’re a long way from a game of chess but, at our own pace, we’re getting there.

Communication

Even with my first child I was never one of those mothers who could tell instantly what the baby wanted from the sound of her cry. I would have to run through the whole checklist every time: Hungry? Dirty? Cold? Hot? Tired? Uncomfortable? Sick? Bored? Overstimulated? (Fortunately she was nearly always hungry or we would never have got anywhere).

With him, it’s simple. There is only one cry, only when he’s hungry: a heartbreaking, desolate “mbwah” that cuts right through you, while his tiny face crumples like it is the end of the world. And he doesn’t cry very much – far from it. Nothing compared to the hours endured by colicky babies (and their parents). Sometimes we get an hour or so of screaming when he’s hungry but also so tense he can’t latch on … needless to say he usually takes in so much air that once he does manage to feed he immediately brings the entire breast-full back up again. Cue another midnight laundry session!

So when the paediatrician asked, at our multidisciplinary review, “How does he communicate his needs to you?” we were at a loss. “Er… communicate?” It wasn’t a term we’d really associated with him. Those rare, beautiful smiles seem more a response than a desire to tell us he’s happy. He doesn’t ask to be picked up or played with. We change his nappy by the clock, or when we can smell it. When his muscle tone is high we cuddle him or rub his feet, which seems somehow to relax him. If he clamps his mouth shut when being fed, we stop. If I’m honest, the communication between us is perhaps something like that you would have with a pet cat. Not even a dog.

I think the best, maybe the most human, form of communication is to laugh together. At a special needs group I met a little girl who reminded me of him in one characteristic feature – the shape and size of her head. She’s four-going-on-five, tiny, shy, big eyes behind thick glasses, a mop of brown curls. She doesn’t walk; doesn’t talk: much like the future we’ve had predicted, at least as far as anyone can predict. But she laughs. On this day her dad was swinging her, almost flinging her fragile frame around – like dads the world over do – and she was grinning, giggling, chortling, guffawing, with pleasure and love.

We’re nowhere near that yet – he doesn’t tolerate sudden movements, for a start. But I do like to imagine he’s becoming gradually more alert: fixing on faces, following sounds and movements with his head, looking out for familiar toys even though he can’t yet reach out for them. One day we will play together and one day he too, will laugh.

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