Everyone knows that if you eat chocolate in a darkened room without anyone actually seeing it pass your lips that you don't put on any weight. Or, if you're anything like my granny, and you want to convince yourself that people are incapable of cruelty to animals, you simply don't switch on the animal-murdering documentaries. Similarly, if you just muddle through life without tending to those lurking worries, then all is well in the world. No? Well actually, NO!.
So here's the Thing, the dark 4am fear-thing that I don't want to be there and that I haven't wanted to admit is even there at all:
I am worried that J is getting more autistic.
My interactions with him are becoming harder and harder to achieve. The majority of the time, he is in his world and it takes a gargantuan effort to lure him out or to persuade him to let me in. He still has delightful, happy, cuddly, magical moments (see previous post) but they are getting fewer and further between. I seem to be losing him to the inexorable lure of self (the word 'autism' comes from the Greek word 'autos' which means self - only found that nugget recently..). I feel like I'm trying to catch up with a balloon in a gale - there are occasional lulls - and then he's off again - uncatchable. And I'm not even sure whether he wants to be caught up with. I'm sure that the Priory would have a lot to say about this but my maternal instincts are screaming out that if I can just make J understand the bottomless depths of my unconditional love for him, then I can buffer him from a world that doesn't make sense to him. Utter nonsense, of course. Autism is as autism does and a cuddle from me won't have any effect on J when I watch him thunder up and down the living room floor - as he does for a couple of hours every day, making odd whale-like squeals and banging heavily into walls and furniture to get some kind of sensory input to make him feel ok.
Is he really getting more autistic? Is that possible? Call me naive but I thought some things would get better with time, not worse...
He's nearly 5 now and so are his peers. Not long ago they were all throwing wobblers, stomping their feet and generally laughing in the face of social expectations and niceties. But they're all growing up and these"neuro-typical" fellas are a cloud of (fully functioning, play-dating, party-going) dust on the horizon and my little man is out there on his own with his autism becoming more obvious.
There's also the unavoidable fact that he's physically bigger - I can't carry him anymore when he won't walk. Previously, if a noise had frightened him or a passer-by had accidentally brushed against him and he had become a jelly of scrambled senses, I could scoop him up and carry him to safety. Not any more. He's too big for a pushchair as well so I'm having to come up with other strategies - patience and bribery are all I can think of so far.
We've also had some big changes over the past few months. We moved house in August. We've only moved a mile down the road but we've left the island in the Thames that J had known as home for his whole life and moved to a terraced house on terra firma - exchanging the quacking of ducks and honking of geese for the rumblings of trains and whooshing of traffic. We all love our new home - J particularly loves the stairs and his new bedroom but, however much planning, preparation and careful handling of the change we did for the boys, it's been a stressful time.
And then in September J started a new school - an autism-specific unit attached to a mainstream Catholic school. It's a work in progress while J is getting used to it and while they are getting to know J and his needs. It feels like quite a big step for him but he totally loves the joys of learning so I'm hoping it will all work out...
And then there's us - me and Dave. We've accepted that J has autism. The anger and desperation that we'd initially felt when J got his diagnosis has waned and we've just been getting on with living our lives with our cheeky, hairy, quirky, gorgeous boys. But that nagging fear Thing is whispering that I could be doing more to help J. There is the hint of a fine line between being all jolly and accepting and all defeated and apathetic. We can continue to let J get swept away by his Autism's quest for withdrawing totally or we can have a look at whether we can help him more. There's a whole world of "cures" and charlatans ready to pick the pockets of people like us out there, but there are also a lot of interventions that can really make a difference. I just don't know which is which just now. And I'm not sure where to start looking. But I'm going to say the thing that I've been trying not to say:
I'm losing J. And it's killing me to sit back and watch him disappearing.
There, I've said it. So I'm off to unearth my head and to eat some chocolate in public. Then I'll have a look at what we can do to make things better. I'll get back to you.......
