I hate it when bloggers apologise for having taken a break – I mean, really, LIKE ANYBODY CARES – but I’m going to do it anyway. Sorry. To be honest, it’s been a funny old year – interesting times, as the Chinese curse puts it.
On the plus side, Sarah and I got a book deal – a proper book deal! With Penguin and everything (‘Are you self-publishing?’ my mum asked, literally six months later. Ah, such faith.) It’s kind of like the blog, only much bigger and better (and no, we haven’t just copied and pasted stuff from here – it’s all new writing with proper chapters.) We hope you like it – we’re very proud. It’s out on February 25th and you can pre-order a copy here. Please do, she added desperately.
But if one aspect of your life goes well, the law is that the other parts have to go to shit. And so it was that my three-year-old son Xavier was diagnosed with autism. I wasn’t going to write about it on here – respecting his privacy, some things too personal, etc. But then I thought
fuck that I’ve got a book to promote it might help other people in a similar boat.
And it turns out there are loads of them. More than one in 100 (one in 68 if you’re American). You totally know someone with an autistic kid or nephew, even if you’re not aware you do. I’m amazed by how many ‘me toos’ I’ve heard since finding out about Xavi.
This isn’t to say that everyone’s experience is the same as mine – quite the opposite. It’s a funny old diagnosis – some might even say entirely meaningless – as it applies as equally to the man with no speech, staring at the wall, as it does to the kid at school who knows a bit too much about buses.
For us the speech delay was the biggest red flag. At 27 months Xavi was still only saying ‘hi’ and ‘bye’. Well-meaning relatives kept telling me that boys are a bit slow, and that great aunt Mary didn’t say a word and then one day started talking in full sentences. This tied in neatly with what I wanted to believe, so I didn’t do much about it. (It didn’t help that I had no idea a speech delay was a sign of autism – I’d always assumed autistic kids were unsmiling and remote, which Xavi wasn’t. I was later told I had a very stereotyped view of the condition – thank you, Rain Man.)
But on the nursery’s advice I wheeled him off to see a speech-and-language therapist, who asked me if Xavi’s tantrums were out of control (‘What’s that?’ I yelled over his screams) and if he liked watching the washing machine go round (‘Why yes!’) It turns out that these are, if not sure signs, then at least clues that you might want to get them checked out. The same goes for poor eye contact, walking on tiptoes and being a bit over-fond of Thomas the Tank Engine.
The following few months were an exhausting round of appointments with paediatricians, speech therapists, psychologists and behavioural therapists. The paediatrician didn’t tell us much – only that, because he’s being diagnosed so young, it’s ‘not mild’. We were then sent on our way with the promise of a few speech-therapy sessions and a parenting class.
We knew then that, if anything was going to be done, we’d have to do it ourselves. The first step was to get informed. Mostly this meant building a library of books about how much poorer and more depressed/divorced you’re likely to be with a disabled child. Others were filled with cheery tales of institutionalised children whose main means of communication is head-banging the pavement. I stopped reading the books.
But it’s not all doom and gloom. Xavi is, 99% of the time, a happy and engaged little boy. And we’ve found an effective, if slightly obscure, therapy he’s doing brilliantly with (see here) His speech and understanding still lag behind, but he’s chatting way more than he did and is improving all the time. Because he can actually tell us what he wants, he gets less frustrated, so the tantrums aren’t the buggy-breakers they once were.
Xavi dressed up as Jim Morrison
We’re only nine months into his diagnosis, so it’s a bit early for happy endings. But things are looking up.
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