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Tuesday, 16 September 2014

Aspergers - and who needs to change?

Living well with Ethan's aspergers is as much about me changing as it is him.
I don't mean losing who I am or wearily giving into the way things are. But I do mean letting go of self-righteous anger and condescending rebuke - even when it feels justified. I mean nurturing a calm approach and actively reigning in my desire to react angrily when Ethan has let me down or is, frankly, being an idiot. I mean increasing my understanding and finding effective ways to handle disputes. I mean by accepting, sometimes, that I need to be the one to act like a grown-up, to take responsibility for not fuelling and heightening stress and, if needs be, sacrificing my right to 'be in a mood' so that he can be in his, come through the other side, and calm can be restored.
I don't mean to big myself up at all. It's all very well, in the tranquillity of this moment, to write all this. In reality, it's flipin' hard to do.
Take today for instance. I was going to be out during school pick-up time meaning Ethan needed to collect the kids. He was well briefed on the matter. I warned him the day before, told him again on the morning in question and made him sit down and focus whilst I went  through arrangements one last time before leaving the house. Ethan rolled his eyes at me.
A familiar sense of foreboding overcame me as I pulled up on the drive a couple of hours later to the sight of Ethan happily hacking at our front room wall (yes, the project lives on - it's good and bad. Good because it occupies him and bad because it occupies the exclusion of everything else). School had finished fifteen minutes earlier and I couldn't see or, more to the point, hear the kids. As I walked through the door I knew my question was ridiculous but I hoped for the best.
"'Are you back from school already?"
 Ethan gasped, swore and scrambled for the car keys. This, my friends, is when my wise words and good intentions came tumbling down around me! A tiny part of me was desperately trying to hold onto that still, small voice telling me to be calm, not to shout, to employ understanding. But my carnal instincts won out.
"I don't believe it," I chastised, "I can't rely on you for anything."
"I know you can't," boomed Ethan as he stormed past me and slammed the front door.
For the next five minutes I battled inwardly between the desire to have a go at him and pity myself for having such a useless husband, or to make the conscious decision, despite the circumstances and my feelings (which are fickle companions) that I would try to understand, that I wouldn't overreact, that I wouldn't feel sorry for myself and that I wouldn't make everything  worse by attacking him any more than I already had.
It took huge resolve. Particularly as, when he got home with the kids, he snapped at Ava, shouted at me and then stomped into the front room, slamming the door closed. Everything in me wanted to burst into that room and tell him what a horrible person he was. To ask how he dare shout at all of us when he was in the wrong. But I'm learning through experience that such reactions just sink us both further into anger and resentment. By choosing to stay silent and keep away, I starved the furious feelings in us both of oxygen. I forced myself to chat with the kids, to engage in their days and to take my mind away from my frustration. The situation ceased to be so huge. And about half an hour later, having had time and space to 'come down', Ethan surfaced and apologised. I wasn't very gracious. I couldn't quite resist pointing out that he had acted like a s**t - not by forgetting to pick up the kids but by shouting at us all afterwards. But I said it calmly and packaged it in understanding ('I know you were absorbed in what you were doing') and, crucially, after the heat of the event itself. We listened to each other, hugged each other and started again - again.

As I wrote this blog entry, I'd just phoned Ethan to remind him to pick up Sam from karate at 6.30pm because, as well as learning  not to react angrily in the moment, I've also learnt that by micro-managing Ethan, I can avoid these situations arising. I need to tell him what to do, then remind him, then remind him again. There's no use getting frustrated, it's just the way it is. Some things, again I'm learning, I just need to accept and make the best of. 

Monday, 8 September 2014

Aspergers and having a focus

Ah - the double-edged sword that is Aspergers.
Ethan has decided - and I stress, he's decided. I've been going on about his middle-aged spread, unhealthy lifestyle and lack of self-control for years all to no avail. But suddenly, for no apparent reason, he's decided - that now is the time to act. He's on a mission to improve the state of the house and improve the state of himself. In true AS style, he is so determined, so focused - sometimes to the detriment of remembering or prioritising other things that he's meant to be doing - but it's good to see him doing something, motivated, alive rather than slumped in front of the TV or computer once the day is done.
I'm finding myself sometimes having to make three variations of dinner: one version (bland) for the kids, another version (slightly more exciting) for me and another version (minus the carbs, big on protein) for Ethan. Barely a slice of bread or single potato has passed his lips for weeks! Even more impressive, the ice-cream, chocolate, sweets and crisps all within daily site and easy access, haven't been touched. He's not drinking very much or very often. His usual self-gratification and lack of control have given way to a steely self-will.
The other great thing is that the bike that he bought at huge expense a few years ago which has hardly used for the last 24 months, is being used again. He's even found a like-minded friend to go cycling with. And his new-found purpose seems to be doing him good. Whether it's just that - having a purpose, or whether it's this new found friendship in a cycling partner that seems to be blossoming, or the benefits of exercise (which not only gives a release of endorphins but also, essentially, gives Ethan headspace away from chaotic family life) Ethan is easier to be with. I'd even go so far as to say he's pleasant to hang out with! He's got more energy, he's irritated less, he's interacting with the kids more and he's helping out more at home without moaning about it. The essential ingredient to this happy state lasting is that he gets time to focus on his tasks (right now he's happily measuring the front room wall ready for its destruction next week), that he's allowed to maintain his regime of bike rides, gym trips and plates of mackerel for dinner, that he feels supported in his quest.

What I've found in the past is that these phases do sooner or later, fizzle out...I'm praying that this one will last. 

Wednesday, 3 September 2014

Aspergers, communication and exasperation

Perhaps it's just a male trait since Ethan's partner in the following situation played an equally bemusing role. Either way, I am sure if two women made an arrangement to go to the cinema one evening they would agree what time to meet. Surely, if one person had said to the other "I'll pick you up," the other person might have enquired as to what time.
Picture the situation. I'm trying to fly out of the door to take Ava and her friend to their first ever drama lesson (I'm hoping it will channel some of her excess dramatic flair!)The boys are both clambering at my legs, asking for drinks and whining that they don't want me to go - all the while Ethan is oblivious, on his iphone, doing whatever it is he still finds necessary to do, having been fiddling with it since he came in. As I'm peeling child number three off me and heading to the door, Ethan thinks to ask what time I'll be back. "About 7," I reply. "Well it better not be any later 'cos I'm going to the cinema," he informs me. The exasperation in me is building. "What time are you going? You need to tell me these things..."
"I don't know what time."
That cuts me short. The fact is that he didn't arrange the time with the person he's going with! All he knows is that the other person is doing the driving. For all we both knew, he could turn up to collect Ethan at any moment - perhaps when I was out with Ava at drama. And then what would he do? The uncertainty at least prompted action. Ethan looked up the cinema times and discovered that there wasn't a showing until 8.50pm. He'd been up since 4am. By the time he got home he would have been up for 20 hours and had to be up early again for work the next morning. Why didn't he think to look at the times at the time of arranging?!
We had a similar lack in communication/information-sharing the night before. Somebody was meant to be coming round to look at our front room with a view to plastering it for us. They said, by text, that they'd come 'tonight'. By 6.30pm they hadn't arrived and Ethan was getting stressed. Again, he'd been up since 4am and would be again the next day. After explaining to Ethan that tonight could mean any time up to around 9pm, I asked whether he'd informed the plasterer guy that he'd be going to bed at 8.30pm.
He hadn't, of course. Not only that but Ethan was adamant that he couldn't tell the guy that now at 6.30pm as 'it was too late.' Why? I just don't get it.
He seems to have a nervousness about informing people of things, about pinning details down, about communicating information - even the most basic - about himself. And he always texts. Never phones. That would be fine if his texts covered the information they need to - but they don't. It's frustrating when a quick phone call with proper information communicated fully would save a whole load of stress and uncertainty. Then again, I guess, for Ethan, that's cancelled out by the stress of actually having that necessary conversation in the first place - and getting it right.

So, for now, we continue muddling through and I remain exasperated!

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.