Living with ASD is like living on a perpetually new roller-coaster – you never know what’s coming around the bend. You’re never quite sure if you’re up for the next loop the loop, or frankly you just want to get off the ride, sit in a darkened room, and recover from senses overload. Probably not too dissimilar from what it feels like being in the ASD mind.
I think the essence of exhaustion is that you can never, truly, relax. You have to be braced for an ASD fuelled problem at any moment. I might look relaxed, totally calm, at any one moment. But believe me – that’s an act. An act largely borne out of desire to keep things calm for my ASD child, and normal for my other two. But inwardly I’m constantly assessing and scanning the environment for the next hurdle or potential trigger-point.
What’s worse is, despite 10 years practice on the job I still can’t always predict where the problem is going to come from, or sometimes even the solution.
On Saturday we were in the local garden centre. We had some time to kill whilst the car was being cleaned so we went to the café. All good. Until Boo got hiccups. I didn’t think anything of it for the first few minutes and then it rapidly dawned on me that we were heading towards sensory overload.
We popped in to the farm shop area to pick up some bits, and it started to becoming apparent we were heading towards meltdown, fast. Boo has now gone bright red, and is forcefully thumping himself to the degree other shoppers have started to notice. Cue Bug and Pip taking their cue to start grabbing things off the shelves and generally also requiring attention.
I did the only thing I could and very tightly, from behind, wrapped my arms around Boo’s chest. I thought ‘let’s change the sensation’. And it worked, well enough to get out of the shop area. But things were still precarious. By now, Boo is flopped over my arms going wild with the echolalia and humming. One passer-by visibly recoiled. Yes, it must have looked bizarre.
Fortunately the hiccups stopped at this point, we got out and to the, now nicely clean, car. Boo’s meltdown had been averted, just.
All because of some innocuous little hiccups, I had to spring in to action as Mum to an ASD child.
But then in the car, we’re on tenterhooks. Boo is still making repetitive noises, lying down, half out of his seat belt, rubbing his head and face. The car, when also inhabited by his siblings, is normally a hotbed for things to worsen. Within a few minutes Bug and Pip are starting to lose it with their brother’s noises. Argh, looks like the meltdown will not only be on after all, but perhaps all three of them will enter it together.
And then the bizarre happened.
A few drops of rain, blackening skies, and then the heaven’s opened. Massive torrential rain, thundering, lightening, and surges of water pouring in flash flooding style coming from every drain. Rhythmic windscreens wipers going like mad. Deafening noise outside the car and silence within.
To begin with it was the girls who were drawn to the magnificent display of weather. And then Boo gradually sat up and became engaged. Within moments all three were excitedly discussing the freak storm going on outside, mesmerised in this immersive display. And the hiccups forgotten, and order restored.
If you’d asked me at the start of the day what a storm like that would mean too Boo, that’s where I would have predicted the meltdown. For weeks he’s been obsessive about where lightning strikes and worrying about being hit. In reality, the wonder took over. And it was the annoying spasm of the diaphragm that caused the problem.
So that’s me back to humbly thinking I haven’t a clue, back to being on tenterhooks and ever watching for the first signs of trouble.