‘So, what’s wrong with him?’
I am wrong footed for a second. ‘Er, nothing, he’s perfect?’ I think. But I know what they mean, understand what they are after. A simple label to explain why Alex is the way he is. Why he isn’t walking, why he isn’t talking, why he sits in his pram rather than trots by my side, why he flaps his arms up and down quickly when something is exciting, indicating with every fibre of his being that he is happy, why he doesn’t always look at you properly.
Why he is so interested in shiny things, why he doesn’t always play with toys appropriately… why he wakes up in the night, sometimes for up to two hours and lies there, giggling to himself, before dropping back to sleep.
Why he is who he is.
Why he is Alex.
I don’t know.
It’s not as if we haven’t tried to find an answer. The medical profession have tried, as hard as they can, to provide one for us. In those early days, when you probably didn’t hear from us much, Alex was having blood tests, or MRI’s or awful, awful lumbar punctures that I wish… I wish we hadn’t done… to try and find a solution. Nothing, always nothing. No obvious cause could be found. So one by one we have dropped off their lists, we are down for annual reviews with opthalmology, neurology, paediatrics… they don’t know what to do with us anymore, feel they can’t help anymore and have reduced Alex to ‘interesting anomaly’ along with more children than you’d expect. We are left with genetic testing. New genetic testing that is, everything else has been tried. There is a study called the DDD study – Deciphering Developmental Disorders – which is delving deeper into Alex’s (and many many other children’s DNA) to try and find a reason why he hasn’t developed as we’d anticipated, as we’d hoped. That is where we are.
In all honesty, we don’t mind. There was a point, at the start, where we were desperate to find out how this had happened, but now… he’s who he is. He’s just Alex. Developing at his own pace and in his own way. And he is a miracle to behold. Those tiny, tiny progresses he makes I marvel at and celebrate every single day. They are appreciated because they were never anticipated. And we have found SWAN, a place to call home, where we can talk to other parents who are in the same situation. And that has been a lifeline.
The co-ordinator, Lauren Roberts, has written a very good piece about the trickiness of not having a label, you can read it here:
But for us, although it… would be helpful to have to tick a box, rather than give a 3 paragraph essay on the salient points… would be useful to give people a quick answer, rather than a chat over coffee… would be good to know what was coming, for all of us, just for some clarity in our future, we’ve moved past the point of needing a diagnosis, have got used to the unpredictability of our son, and all that he is, because of all that he might become.
Mum, I’m just a unique individual!