Hindsight’s a great thing, isn’t it?
Looking back now I can see things in SP’s development that weren’t right…but at the time I thought everything was fine and the more challenging aspects were just part and parcel of raising a toddler boy.
All small kids are prone to meltdowns, aren’t they? All small kids will pinch toys off another child or push them away, won’t they? Boys are slower to talk, aren’t they? And slower to potty train! And they all get obsessed with something, don’t they? It wasn’t so weird that SP would insist on visiting the railway station every day, was it? It was only over the road from our house after all and he liked waving to the train. All kids prefer certain foods, don’t they? And certain clothes. All kids protest about having their hair washed and teeth brushed, don’t they? I should be pleased that he could count and recognise letters, shouldn’t I?
What I didn’t recognise was that although all these things were normal, the degree to which these things affected SP wasn’t.
It took him to go to nursery at 3 for his key worker to point out that all wasn’t well. After his first half term I got called in for a chat.
“He’s outstandingly bright – his numbers are phenomenal…But he plays in parallel to the other children and can’t cope when they get in his space. And there are times when he just connects from what’s going on as a way to cope. We don’t know how to reach him when he’s like that.”
I’d known his key worker for 20 years – there’s not one person who hasn’t met Mrs H who doesn’t think she’s a phenomenon – if she didn’t know how to deal with SP then something had to be wrong!
I wondered how I could have been so stupid not to see anything myself. And I cried the first of a lot of tears. How could I have failed my little boy so badly so soon?
This was followed by a disastrous health visitor visit last spring, my back put up from the second she crossed the threshold. By the time the extent of his developmental delay was laid out in tick boxes I was a bundle of emotion – part annoyed (I wasn’t so bothered that he wasn’t bothered whether he was a boy or a girl), part distraught (but I was bothered that he wasn’t bothered about having friends and had a complete lack of empathy for those around him).
Again I felt like a failure.
It took until Christmas for autism to be said aloud, however. It had been hinted at, implied, suggested…but no one had said it until we sat in the consultant paediatrician’s office, SP asleep on my lap from the overly-hot central heating, when we were talked through the ‘triad of impairments’ and how SP was ticking all of its boxes.
I cried again. This time not for failing – the assessment had given an explanation for everything he’d struggled with and as parents we’d failed to correct. But it also represented a lifetime of challenges, for SP, for Husband and I as his parents, for his sisters, especially Amy as she’s closer in age than his older twin sisters. It explained a lot, but it didn’t bring a solution.
But it also didn’t change SP. The autism is part and parcel of who he is – we are all shaped by how we perceive the world around us – but I love who he is whole-heartedly. Yes, I wish he’d use the toilet and not still be in nappies, life would be a lot easier if he wasn’t so rigid. I wish he had friends and I worry for his future. But I wouldn’t swap him for the world.
And we’re still only at the beginning. We’ve got his formal assessment meeting on Tuesday – my money’s on me crying as I sit in front of a plethora of professionals, all with their perspective of the areas where SP is failing or is going to struggle. But this is the beginning – it gives us a lens to look at his behaviour through, a way to understand him better and shape things in a different way. We’ll formally have a label. A label that doesn’t change things, but one that brings support and advice and points us down a different path.
And my tour hide is pretty awesome. I just hope I prove to be a worthy navigator.