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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.

Wednesday, 23 July 2014

Aspergers and shifting blame

I've not had to wait long for the boot to be on the other foot. And the way that Ethan and I both handled our mistakes has really brought home the differences between us and pinpointed the reason why I find Ethan's attitude so difficult.
Today, we'd planned for Ethan to take Sam to Legoland Discovery Centre after school - we'd been promising him it for ages and today we'd finally found a day that we could make it work. Before I left home to take Oliver out for the afternoon I reminded Ethan to take his wallet. On my way home with Oliver, I called Ethan to arrange where to meet him so that he could take the car - and I checked whether he'd got his wallet: 'Yes', came his rather irritated reply. Ten minutes later I met him at school as he was picking up Sam to go to Legoland. 'You have got your wallet, haven't you?' I shouted after him in what I hoped was a light-hearted tone whilst knowing that asking the same question three times is often necessary with Ethan. Ethan nodded, waved his hand dismissively and off he went.
Fifty minutes later, I got the phone call. As soon as I saw his name on the caller display, I felt my heart lurch. I'm generally on tenterhooks when Ethan's doing something with one of the kids, or out with friends - I'm hoping against hope that all will go well but bracing myself for something to go wrong. It also occurred to me, as the phone rang, that I automatically scan my brain for whether whatever the problem is could be something that I've caused. I've read about partners of people with Aspergers living with self-doubt and feeling that somehow they're responsible when things go wrong. I vowed to myself I wouldn't go down that road and I do fight my corner ferociously with Ethan but, subconsciously, I think I'm nearer to that point than I'd realised.
Anyway, the words I was greeted with, as I picked up the phone and said hello were "What time does Legoland close?" - no greeting, no small-talk. I get that, the phone-call is purely information-based. So, sticking to information, I asked the reason for his question. Sticking to his un-emotional, information-based approach, he announced: 'I've not got my wallet.' I was genuinely floored. Three times I'd asked him, three times he'd said yes. And yet he'd driven all the way to Legoland, forty minutes drive away, before actually checking whether he did indeed have his wallet. Massively annoying and frustrating to say the least - and I was thinking of poor Sam in a hot, sweaty car missing precious time in Legoland. But the worst part of the whole sorry episode came next. "That's why there's meant to be money in the car..." he started, referring to the change we keep in the car (there was £10 but not the £15 he needed). I knew exactly where he was going with this line - he's always moaning about me using money from the car and not replacing it. Perhaps a valid point. But what struck me, in that moment, was that exactly a week ago as I drove the car with its roof box into a multi-storey car park and cracked it from one side to the other, I phoned Ethan and the first thing I said was how sorry I was. I didn't blame him for putting the box on there two weeks before we went on holiday. I didn't blurt out 'I've knackered the roof box,' I said sorry. Whether it's down to Aspergers or being male, whenever he messes up, Ethan will always look for someone else to blame (and it's often me since I'm the nearest person to him - in every way). It's wearying to say the least. And frustrating and hurtful and destructive to self-esteem, certainly destructive to a healthy, happy relationship.
It all worked out - one hour, 36 miles, one argument and one revelation later than it would have taken had he just checked he'd got his wallet. And I now have a choice - to let resentment and disillusionment build or to try to help us both learn from this encounter about each other's feelings and needs. Whilst not taking responsibility for his mistakes, I'm sure there are lessons I can learn about how to support him more without turning into a doormat. I'm well aware that he is always supportive of me, sometimes in his own unique way. 
At the end of the day, it's not about a plastic box on a car roof or about plastic bricks in an over-priced warehouse - it's about the way we treat each other in the inevitable frustrations of life. 

Sunday, 20 July 2014

Aspergers - and keeping calm in a crisis

Drove into a multi-storey car park last week with a roof box on the top of the car. Trashed the roof box and got myself wedged in there, under a concrete beam, with no way of going forwards or backwards without smashing the roof box up even more.
I cried, of course, and phoned Ethan. He didn't come rushing to my rescue, even though he was at home, with a car, and an afternoon off work, so easily could have done. But neither did he shout at me, get stressed or tell me I was an idiot. He was, in fact, remarkably calm and nice about it, talking me through what I should do. Even saying (once he'd worked out that he could bodge the box back together again with duck tape and fibre-glass putty) that it was 'just a metal box'. This is the thing with Ethan. He can stomp out of the room, slam a door and sulk because Sam's pyjamas aren't where they're 'supposed' to be, but if I burn the house down he's amazingly calm and, if not supportive, then at least not accusatory. It's the little things that other people would barely notice that try his patience and cause multiple small eruptions.
I'm immensely grateful that Ethan can keep calm amidst an actual crisis, and that he doesn't berate me when I do something really stupid. But, actually, life's full of the 1,001 little things that go wrong rather than the occasional big disaster. And sometimes I feel I'd rather trade in one big explosion every now and again rather than the daily sighs, sulks and shut-outs that we all live with.
If you're wondering how I ever got out of the multi-storey by the way, a lovely old man and a rather attractive young man took pity on me as I struggled, through my tears, to try and remove the box from the roof of the car. They helped me get it down and then carried it to the roof of the car park as I drove and met them up there. Once free of the concrete beams, the box could be reunited with my car. The old guy's parting line to me as he drove away was: 'If your husband gives you a hard time, tell him he's crazy for leaving it on there!' Didn't go down the route of blaming Ethan for my mistake though - not sure which one of us would have been behaving more like the person with Aspergers then!

Saturday, 12 July 2014

Aspergers and self-control (or lack of it)

Anyone else experience an utter lack of self-control in their Aspergers spouse?
Be it a family size tub of Pringles, treats for the kids' lunchboxes, a bottle of wine or a 'share size' (the clue's in the labelling) tub of Ben and Jerry's - he polishes off the lot with gay abandon. Never a thought for the other four people in his family, most significantly for me for his hard-working wife (yes, I know, he works hard too) who might fancy a glass of wine when she gets in, or for the next day when our cupboards are bare! He seems to live completely in the moment - as a child would.
He doesn't seem to have a 'moderation' switch in his brain - everything is all or nothing. Whether it's extreme dieting (after a week of polishing off all our crisps and chocolate) where he eats nothing all day until tea-time and comes home from lugging heavy equipment around all day faint with hunger, or DIY projects that take over his mind so completely and utterly that his family cease to exist until the task is done. He just doesn't seem able to do something - anything - 'a little bit'.
It doesn't make him the worst person in the world but it is pretty annoying when you've been looking forward to your favourite programme with some ice-cream all day only to find, when you open the freezer door, that it's all gone. It doesn't make you feel very considered - or even remembered at all. Does he recollect, as he slurps the last bit of ice-cream from the tub, that he has a wife - who might like some too?!
And, in all honesty, I find it hard sometimes to respect a man who has trouble controlling himself. It doesn't make you feel you can comfortably trust yourself and your family to his care and leadership. Maybe I'm being a bit harsh - but that's how it makes me feel.

Now, where are those Pringles I hid under the bed?!