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.

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.

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. 

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!

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?!

Aspergers and the change that diagnosis brought

Came across an old diary the other night. An excerpt:

One hour Ethan can be lovely - playing with the kids, cheerful with me, a pleasant human being. But all it takes is something to frustrate him, annoy him, not go the way he wants or even just take his attention and he'll turn into this miserable, irritable, snappy, aggressive presence who puts everyone on edge and spreads an atmosphere of gloom.

I wrote that in 2008. I remember mentally battling with the same concerns in the year 2000 when I married him. And still today the doubts I had all through the years we were dating and engaged about whether I'm really meant to have pledged my life to this man, rise to the surface.

The fact that all the same things that bother me now about Ethan bothered me then is both depressing and encouraging. Depressing because in the sixteen years I've known Ethan, the same issues remain (although I would say, on the whole, he's improved). But also encouraging in that I know, today, I'm handling the frustrations, disappointments and anger I sometimes feel so much better. The difference, I think, has been the diagnosis. Today when Ethan overreacts, shuts down, lets me down, has mood swings - I see it as a product of his Aspergers rather than a product of his just being a shi**y person or him not loving me very much. And that perspective helps me not to take it (too) personally, not to hold a grudge and, most importantly, to react to his outbursts or retreats inside himself in a way that will help him and hopefully encourage him out of that state rather than sink him further into it.

Yesterday was a case in point. It was the kids' school summer fair. Ethan was supposed to be helping on the inflatable slide (I'd signed him up, obviously!) but, a few minutes after telling him it was time for his slot and sending him off, I noticed he was standing on the outskirts of the activity looking very awkward whilst two very competent women were counting kids onto the ride and taking their money. After, hissing surreptitiously to Ethan I could sense he was already feeling stressed and completely out of his depth. 'I don't know what I'm supposed to be doing,' he snapped loudly at me. And, when I asked whether he'd spoken to the women in charge he responded forthrightly 'Yes,' then, a little less forthrightly 'I've told them I'm here.' To cut to the chase, it was clear that communication between these women and Ethan had not been very clear and, just as I would with a well-meaning but overwhelmed child, I needed to wade in and speak to these women myself.

A conversation later, Ethan was given the role of ensuring each child in a group of seven only had five goes on the slide. Things got rapidly worse. Imagine the context: a loud primary school summer fair, music blaring, kids everywhere, noise on every side, the sun glaring and Ethan, with no facial recognition skills, trying to work out how many times each kid had thrown themselves down an inflatable slide. It became pretty clear pretty quickly that I was going to have to take over, despite the fact I'd just finished a lengthy stint on the bric-a-brac stall! In the past I'd have been irritated, annoyed, exasperated and sorry for  myself with the 'hopeless' husband I'd lumbered myself with and no doubt have written it all down in my diary.

These days not only do I not have the time to write a diary (although I guess this is one, of sorts) but I understand. I know that (most of the time) Ethan does his best and I know that (most of the time) it's not his fault. I can recognise that, if he had a broken leg, I wouldn't be expecting him to run a marathon - and I try not to put more on him socially than he can bear.

I also see that we are each in the unique position of being able to compensate for the other's weaknesses. This is something I'm still - slowly and painfully - learning: that, where he falls down, rather than berate him for it, I'm in the privileged position of being able to help him up. And vice versa. We're still learning to do it. But maybe that's the reason we were meant to pledge our lives to each other.

Aspergers and coming close to throwing in the towel

Felt like I came close to breaking point (again) with Ethan last weekend.

We'd been to a friend's housewarming party and, although he wasn't particularly sociable or engaged, things were going OK.

Then Sam lost his shoe. Or rather, we discovered that some other kid had thrown Sam's shoe across the garden and it couldn't be found. In the ten minutes that followed, Ethan utterly destroyed the fragile harmony that had existed between us. He shouted at Sam, found out which kid had thrown the shoe (pushing Ava against a wall to get the information out of her), made the five-year-old boy who, apparently, had lost the shoe cry and proceeded with such a single-minded focus to hunt for this blasted shoe that he fobbed off with two or three words any conversation anyone tried to have with him, told the bloke whose house it was that his garden was full of weeds and interrupted a conversation that the host of the party was having with other guests.

It was just embarrassing. And humiliating. And, for a moment - worrying - when Ava told me in front of two other party guests that her 'dad had pushed her against a wall.'

He was sorry afterwards - much afterwards - and, if not, ashamed at how he'd behaved (because I still don't think he really understands how appalling he was) then at least ashamed of what other people thought of him. He described how his need to find the shoe had been all that he could focus on - he didn't notice anything, or anyone, else.

But there's only so far that apologies, and even legitimate explanations, can go. I exist in a social world and, as a couple, sometimes Ethan just needs to be part of that social world with me. I want to be a normal family. I want my marriage to be a  partnership - not me having to carry out damage limitation on the destruction that Ethan's caused. I want the kids to have a 'normal' dad who can have fun with them and treat a 'lost' (it was quite quickly found) shoe with the insignificance it deserves.

Part of me wanted to send Ethan to the Travel Lodge down the road (no friends so no friends floors to sleep on!). I'm glad I didn't. He's been like a deflated, lost, confused puppy since. We hoped that the guy whose party it was would turn out to be a friend for Ethan. But tonight he's not turned up to go the cinema with Ethan as they'd planned and I really hope that Ethan hasn't ruined that one possibility he had of growing a friendship.

Aspergers can be so destructive. And I'm under no illusions that our life, our relationship, is always going to be hard work and tumultuous. But I also know that Ethan can do better - if only through learning by rote. I believe he wants to do better - for himself and for our family and, I think, I believe that he will do better. That he's willing to listen to and accept my slamming critique of his behaviour, as if he's my naughty child, means we can move forward at least. I know I need to work on the delivery of my opinions of him on such occasions but the fact he's dusting himself off, trying to learn from mistakes and - just trying, makes me feel I owe it to him to stick with him and play my part in the story of our lives. I hope, and pray, that what's been meant for harm in our lives we will use, somehow, for good.