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Tuesday, 25 March 2014

Lessons in Aspergers: What can change and what am I stuck with?

It's a crucial question to answer - otherwise I risk exploding with frustration and making mine and Ethan's life more miserable through nagging and whining and chipping away at things that will never change. Not through lack of trying on Ethan's part or lack of patience on mine but purely because there are aspects of Ethan - wiring in parts of his brain, if you like - that just can't be altered. It's like trying to change the colour of his eyes through wishful thinking or forcing a genuine love of literature purely by telling him he has to like reading, even if he is dyslexic.
Some things we can work on - things like mastering the art of small talk (lesson #1 look at the person speaking to you, Lesson #2 if you haven't heard what the other person has said, ask them to repeat themselves, don't guess or ignore them, etc).
Some things, I fear, won't change - at least not very often or for very long.
Things like his tone of voice which is such a source of antagonism in our family. He constantly sounds aggressive and attacking and accusatory-even when he's just asking what I want for breakfast or telling the kids to get their pyjamas on. The words are spat out, as if we're an annoyance to him just for existing. But when I confront him about it, he's no clue what I'm on about! In his mind, he's speaking perfectly normally. The one time I've seen a glimpse of recognition flitter across his consciousness was when he accidentally recorded himself shouting at a roomful of 8 and 9-year-olds to tell them to be quiet at Ava's birthday. It was scary stuff (although, admittedly, it had the desired effect!) and Ethan looked genuinely sheepish when he heard himself back.
The other thing I'm gradually realising won't change is Ethan's childlike disorganisation and dependence on me to sort everything out. Some guys at church have arranged a night out specifically around Ethan's availability because they know he works odd hours. They've checked and re-checked the dates with him and Ethan's confirmed that, yes, he can make that date. I've always known that Ethan's had an early (4am) start the next day but presumed, since he was looking at his rota when he texted back his confirmation, that he'd factored that in to his thinking. I was wrong.
Thankfully I brought it up today and asked him if he'd be having a sleep on Friday afternoon since he'd be out Friday night and up early on Saturday morning. He looked at me aghast and confused.
Somehow, although he was staring right at his rota when he'd said yes to Friday, he'd failed to see that he was working at 4am the next morning. And his text to the guy who'd organised the evening ('sorry, can't make this Friday. Next time.') really didn't do much to appease the situation. So I found myself: a) bearing the brunt of his frustration - somehow it was my fault, it can't ever be his b) having to text this guy and apologise properly on Ethan's behalf and c) realising, again, that any social, practical or time-management aspect of Ethan's life has to be micro-managed by me if we're to avert disaster, not offend anyone or, as an example, get the kids to school before lunchtime.
Accepting what won't change or, I suppose more to the point, where I have to change (my expectations & attitude) is hard. But knocking my head against a brick wall trying to bring about change which just won't come is even more frustrating for us all. So, if we're to stay together in this muddled, Aspergers/neuro-typical & three young kids relationship, he needs to change what he can and I need to accept what he can't. And, dare I say it, on some issues, it's got to be me doing the changing. After all, the world and I are constantly expecting Ethan to regulate himself and change who he is. It's only fair that I should meet him halfway. And I try to because I know he's trying, really hard, to do it too.
And because he doesn't give up on himself, me or our relationship, I don't either.

1 comment:

  1. Hi Laura,
    I find it so frustrating that my husband can't seem to "look at the bigger picture" when organising any social events; he will look at the calendar and see that the weekend is free, but fails to notice that something major is happening on the Monday that we need to prepare for. And of course the resulting chaos is never his fault, and if I suggest that he looks at the week ahead, he says " I did but I couldn't see anything, I can't help it"
    I will probably put "he couldn't help it" on his gravestone, if he doesn't drive me to an early death first!
    Hannah x