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Thursday, 28 August 2014

Are you receiving me? Aspergers and information gaps

Ethan has this infuriating trait. I don't know whether it's to do with Aspergers or whether it's just Ethan - maybe one of you readers can enlighten me? I suspect it's the former.
When he's verbally relaying something, he misses out big chunks of information - often the most crucial parts - without which his sentence doesn't make sense. For example, he'll come in from work with two boxes of biscuits and, when quizzed about their origin, will tell me that 50 per cent of the staff are couples. To which I'll reply "Which staff and why have they given you biscuits?" He'll look at me, brow furrowed in incomprehension and tell me "the staff at the biscuit factory." When I point out that he didn't mention he'd been to a biscuit factory, he'll swear that he did. The more I beg to differ, the more irritated he'll become.

A couple of weeks ago, when we were chatting with friends, he bought up the ice-bucket challenge. As is Ethan's trademark, he was moaning: criticising how many people were doing it, why they were doing it (just for show, according to Ethan), that celebrities were using it as a way to bolster support, etc, etc. I interrupted his rant to ask what the challenge actually was. Ethan, seeming annoyed by my interruption, dismissively told me, "you're meant to donate to a charity to do it" before launching back into his tirade. I persisted: "But what actually is it? What do you do?" "It's a challenge. People nominate you to do it," replied Ethan. (I think that herein lies the source of Ethan's problem with it - no-one had nominated him and no-one is likely to). I screeched with frustration: "What do you get nominated to do????"  At this point, a friend stepped in before I shattered, through sheer stress and strain, into a million tiny pieces, and explained that you get ice cold water thrown all over you. Ethan looked as exasperated with me as I felt with him. "That's why it's called the ice-bucket challenge," he said.

I don't know what causes it. My theory is that he's so focused on the particular point he's wanting to make, that he bypasses all additional information - however vital. And that if you ask a question that doesn't relate to what his mind's focussing on, his mind will translate it into something that does require the response he wants to make! Either that or, to him, the basic information is so, well, basic that, subconsciously, it doesn't even warrant needing to be said. I think that sometimes he'll forget that you, as the listener, don't have the basic framework of information that he is beginning his sentence from. In his mind, his thoughts have moved beyond paddling in the shallows to, by the time he articulates verbally, swimming in the deep sea - meanwhile you are still sunbathing on the beach!

Tuesday, 19 August 2014

Taking Aspergers on a day trip

Summer holidays with three young children is certainly helping Ethan's Aspergers to blossom!
We had a family day out to York on Saturday. Blimey - it was hard work! The blame can't all be heaped on Ethan and it wasn't all bad. But, in my dreamy depictions of a happy, jolly, family outing on a sunny summer's day, I'd underestimated what it meant to navigate crowded, unknown streets with three children and a husband with Aspergers Syndrome. Even the British weather let me down - August? It felt more like November.
The kids, of course, wanted to buy everything in every shop we passed - which was, on average, one every two seconds. They also oscillated between running off and wanting to be carried. Ethan, faced with the turmoil of not knowing where things were or what direction we should be walking in, battled all-consumingly with google maps - despite the fact we were surrounded by people we could have asked (which is what I did, in the end).
Ethan spent most of the day walking a few paces ahead of us - distancing himself from the chaos and the general mithering of the kids so that I had to keep summoning him back, like a dog to heel. Eventually I got fed up of being sole responsible parent. The children simultaneously talked, nagged, moaned and requested carries from me whilst Ethan, in blissful solitude, wandered ahead of us. I snapped and had it out with him - giving the street performers a run for their money in terms of entertaining passers-by. I should have put a hat out.
Ethan did try - as best he could. He obediently waited for us and tried to walk to our rhythm when I shouted him back, he held Oliver when I plonked him in his arms and he did his best, amid the noise and crowds and over-stimulation, to interact with the kids and respond to some of their relentless chatter and demands so that it didn't all fall to me. Always within a minute or two though, his good intentions would dissolve as reality or, more accurately his attempted escape from it, won out.
The kids, the crowds, the noise and the inability to get his bearings, I knew would be difficult for him. The new realisation that the day gave me was that he doesn't like ambling, wandering, pottering - whatever you like to call it. The whole concept is stressful to him. He needs to know where he's headed, to have a purpose to his journey. A hike in the countryside is fine- he knows that the whole purpose of the journey is the journey. But ambling in the shambles with no clearly defined purpose whilst having to avoid endless people coming the other way, is a whole different matter! The highlight of the day was when we were in the car - on a journey with a clearly defined purpose (going home) eating Mcdonalds drive-thru in the happy knowledge that, in two hours time, the kids would be in bed and we could crash in front of Saturday night TV!

For anyone wondering how 'the project's' coming on, by the way, we're down to floorboards and plaster in Ava's room. Ethan is working on it from dawn til dusk-  alone, unhindered - and he couldn't be more content!

Tuesday, 12 August 2014

Aspergers and 'having a project'

Feels rather petty and self-indulgent to be writing about the 'hardships' of living with Aspergers when such horrific events are unfolding in the world.
Also, I really don't feel that I can moan about Ethan recently (even though he is still demolishing all the nice food without a thought for saving any for me). Of course there have been moments when I wish he'd been more sociable, when he's sounded aggressive without meaning to and when he's worded things badly. But I'm learning to let some things go - for all of our sake's because, actually, Ethan really does have a big heart and he really does care and, most of the time, he really does try to be the best person he can be.
In fact, it's me that's been moody lately (I blame having three kids at home full-time!) - and Ethan has been very gracious about it and hasn't blasted me with all the criticism that I would probably have blasted him with if the boot had been on the other foot.
Ethan's upbeat spirit, despite it being the summer holidays, may be something to do with the fact he has a project to lose himself in: he's in the process of fitting sound insulation in the front room. It means loads of work, hassle and expense - all in a bid to block out the sound of the neighbours sneezing (personally, I quite like hearing sounds of life through the wall but Ethan can't bear it). Currently our office is stacked high with padded insulation boards and Ethan is spending many a happy hour scouring through forums in which like-minded people discuss the minutiae of plasterboards and fibre-putty.
But he's happy. His days have purpose. He has a practical mission to involve himself in. And that's when Ethan is at his best.

Sunday, 3 August 2014

Aspergers and time out

Sorry about the lack of blog...just back from a week camping in Devon (& Ethan and I are still speaking!) and now have relatives staying, plus kids on school holidays, plus my neice's wedding in a few days, plus still working & having to keep normal life ticking over. Normal service (& a new blog) will resume ASAP. In the meantime, am taking heart that the holiday brought some precious moments when Ethan was completely 'with us' and engaged. And he wasn't stressed or pre-occupied or irritable. He searched rock pools for baby crabs with Sam, played football with Oliver, made me breakfast and cuddled Ava and looked out to sea with her on the beach. It made me realise how different he can be when he's taken away from the stress & tiredness of work & the distractions of home, computer and TV.
He starts back at work tomorrow & I'm desperately hoping that this new relaxed, calmer, happier Ethan isn't lost.