Tuesday 27 August 2013

Aspergers and a thousand little grievances



Most of the time it’s the series of small things that grinds me down – the quietly-uttered cynical comment, the moaning response or the moment of disconnection. Sometimes I wonder whether I’m getting too het up over them, whether I’m over-reacting to minor issues that other people might just ignore. Other times I’m worried that I’m getting too used to Ethan’s comments and far-away-ness and am letting myself accept the way I feel, the way he makes me feel, as normal and OK.
Sometimes my head hurts from analysing too much. Perhaps examples are best. So here’s one: when I’d had the kids all day on bank holiday Monday and taken them to the park so he could get on with ‘jobs’ (incidentally, I would love a bit of time to get some housework done. Anyway, I digress...) Me: ‘The summer holiday’s gone really quickly hasn’t it?’ Him: ‘It’s just been work really. I’ve only had four days off.’ By this he was referring to the four days that I’d been away on my own with the kids – pattern emerging here?! He’d actually had two weeks off from work. He was referring, by time off, to time away from the kids. Well, I’m sorry Ethan, but you’re never not going to have three kids. And I’ve just come back from four days of taking them away and giving you space, followed by another day to yourself today, and, rather than thanking me, you’re moaning that it’s not enough...
I got over it. Later that day I told him a fairly amusing story about an old lady I’d been looking after the day before. Other people would have shown that they were listening – made eye-contact, laughed in the right place. Ethan though, distracted by how much cheese I was cutting for our omelette, made no eye-contact and gave absolutely no response to the (funny) finale of my jolly little tale. There’s no getting around the fact that he is really difficult to communicate and connect with. Recently, I’ve not tried much. It’s too depressing. But then so is the alternative of not talking at all.
Then, last night, as I was getting ready to leave to do a shift that he knew I was nervous about, I went into the living room to say goodbye and he said (without looking away from the TV) ‘I hope it goes OK’. Me being me, ranted at him about how self-absorbed he was and how uttering a throw-away line whilst not taking his eyes off the TV wasn’t good enough. He was remorseful, to be fair to him, and completely got where I was coming from – for that moment, before I left and he went back to his programme. You’d think though, having had that conversation, that he’d have been on the ball 90 minutes later when I returned home and that he would have immediately asked me how it went. No. I got home. Ethan was still watching TV. I went into the kitchen, made a cup of tea, still no Ethan. I swept the kitchen floor, fed the hamster, sorted out the boys’ drinks for the morning, still nothing but the sound of Ethan flicking channels, and occasionally pausing on one. He did come through, eventually, and asked how it went. But by then I was too irate to answer and went to bed seething and feeling unloved, unimportant to him, frustrated and empty.
Those feelings seem to visit me a lot. And I’m pretty sure they’re fairly present companions for Ethan too. And I know that I over-react to some of his mannerisms and oversights. And that, a lot of the time, he’s doing his best and simply can’t see my point of view or what response I need. But trying to make a relationship work under those conditions just feels impossible at times.

Friday 23 August 2013

The ring

Sorry for the silence over the last ten days or so. I've been galavanting across the Cornish coast with the kids for the last week - minus Ethan who had to stay at home to work. Despite being a single parent for a week (why do kids always play up more when you're on your own with them?) and having very little sleep (Ava, Sam and Oliver took it in turns to share my bed) it's been so nice to step out of the humdrum and everyday hassles of life and soak up something different. And my, the beaches at Cornwall, when the sun is shining, are beautiful places to be.
I think it did Ethan and I good to have some time apart too. We needed a break from each other after two weeks of him being off work and hanging around at home. There's a reason why men are meant to go to work! The other reason it was good for us to have some time apart was because, just before I left for Cornwall, Ethan presented me with a ring.
Those who have been following my blog for a while may remember that, a few months ago, I lost my engagement ring at the hell that was an indoor Waterworld - complete with flumes, crowds, sweat (and that's hard in water), tattoos, noise, a floor covered in hair and a stressed (overloaded) Aspergers husband.
I never told Ethan about the ring but, of course, he noticed that I'd not been wearing it for weeks (how could I possibly think he wouldn't - he sees every minute detail). He didn't let on that he knew, just plonked this replacement engagement ring in front of me over a curry last Thursday night (yes - it was as romantic as it sounds!) I don't mean to sound ungrateful: I genuinely was touched that he'd thought about it (and mostly that he'd not given me a hard time for losing the ring in the first place). But, the whole experience kind of deflated me. First of all, he plonked the ring in front of me without saying anything and when I said 'What's this?' of all the things he could have said, he said, with eyebrows raised, 'Anything you want to tell me?' - a passion killer if ever there was one. I opened the box and the ring glimmered up at me. My immediate thought was that we couldn't afford it. Ethan has overspent on all sorts of unnecessary purchases in the last two years and promised me he wouldn't buy anything else. He's even been giving me a hard time lately about how much I'm spending on food to feed us all. And yet here we were with this completely unnecessary item that he had bought. My second thought was that I wasn't really very keen on the (slightly garish) ring. This was followed by a surge of disappointment that Ethan didn't know me better after 13 years of marriage. Perhaps the whole situation could have been resolved and I could have grown to love the ring had the answer to the next question been different. But when I uttered the word 'Why?', Ethan's reply was not 'because, although we've been through a really hard time lately, I'm still so glad I'm married to you and want to re-affirm that' (OK, maybe that's asking too much) but he didn't even say simply 'because I love you.' He said 'Because you're meant to have an engagement ring.'
That was pretty much the end of it really. Not in a bitter way; just a resolved, practical decision. Ethan felt I should be wearing an engagement ring because that's what you're meant to do if you're a married woman - that's the 'rules' - not as a sign of our unending love and devotion to each other. In a financially difficult time, that just wasn't reason enough. Perhaps 'because I love you,' would have been.
The next day, I had to pack to get ready for Cornwall. Ethan got home at 10am (having been up for work since 3.30am) and cheerfully declared that he was going to take the kids out without me for a few hours so that I could pack and do what I needed to do. That thoughtfulness and selflessness - all done under a banner of cheerfulness - meant so much more to me than any bit of metal, particularly considering how unnatural such thoughtfulness is to an Aspergers mind. My love language (www.5lovelanguages.com) is definitely acts of kindness. And I made sure I told him so and gave him a big hug and kiss: right before reminding him to take the ring back.

Friday 9 August 2013

Aspergers and different flavours of ice-cream!



Maybe alarm bells, or at least a faint jangling, should have been heard by my subconscious mind on a family holiday to Devon early on in Ethan and my relationship. This was a holiday with my mum and dad, sister, brother-in-law, nephew and niece – before Ethan and I even thought about creating our own family! I should start by pointing out that he’d invited himself to our family holiday in much the same way as he’d chipped away at me until I’d caved in to embarking on the relationship in the first place.
On the way to the beach, Ethan had noticed a sign for a vast array of ice-cream flavours on sale at the beach shop. We got together a small party of eager partakers from our family group and set off to purchase our ice-cream, talking for part of the way about what ice-cream flavour we were all going to get. It was quite a walk to the beach shop and Ethan struggled to remain engaged in conversation – focused, as he was, on the end goal of (rum and raisin) ice-cream.
We reached the shop. Excitement was mounting. Ethan, unsurprisingly, was first to the counter: ‘large rum and raisin ice-cream please’. I could read, from the look on the woman’s face, the general situation. ‘I’m sorry, we only have vanilla left’. OK, I hadn’t anticipated it was going to be that bad. I’d guessed that rum and raisin was out, possibly one or two others of the 12 flavours advertised on their enticing board. But ‘you haven’t got any flavours at all?’ Ethan was incredulous – and very annoyed. ‘We’ve got vanilla,’ the poor girl was playing on the one string she had. My mum, always eager to avoid confrontation and keep everyone cheerful, piped up ‘Never mind, vanilla will be lovely. Isn’t it great that they’ve at least not run out of vanilla.’ But Ethan was too annoyed, too far gone, too steered off course to right himself again. ‘Do you not think you should take your sign down if you don’t have any of the flavours left? We’ve just walked for ten minutes to get here because of the different flavours you’re advertising. This is ridiculous.’ Mum was visibly shrinking. I don’t mean to be self-righteous and pompous but the rest of us were happy to make do with vanilla ice-cream. We’d been brought up to be grateful for what we had – and to compare ourselves with all the people who had so much less. Granted, we were disappointed that the rainbow of flavours offered weren’t available, but we could cope with that disappointment. We all cared more about having a nice day and enjoying being together than what ice-cream flavour we had. Ethan didn’t have/couldn’t have that same perspective. What he’d expected, what he’d been told he’d have, he now couldn’t have. His brain couldn’t cope with the quick switch required of him. His brain wasn’t wired to deal with this level of shock and disappointment. He couldn’t see beyond himself and what he wanted. I can see all that now. At the time I just thought he was being rude and childish.
We walked back, each with our vanilla ice-cream, mum doing her best to stay light and cheery and trying to get us all to chat about jolly things. Ethan stomped back to our base on the beach without saying a word, a look of sheer disgust, anger and disdain on his face. It didn’t matter that his black mood was affecting everyone else. He’d been expecting rum and raisin ice-cream and he’d got vanilla. He was angry with the world.
Multiple alarm bells often go off in my head these days. But it’s too late. I’ve overslept and now have to wake up to what our life is: Ethan with Aspergers and me not. The best we can both do now is to find out as much as we can and adapt as much as we can to get the best out of each other that we can and make family life as good as we can.
(And make sure the freezer is always stocked with a choice of ice-cream!)

Saturday 3 August 2013

Aspergers and learned behaviours



Happy sunny post today to go with the weather (where we live anyway!)
Ethan’s drinking coming to light has been the best thing that could have happened. The insinuating bottle of whisky is now on full view of everyone in the wine rack - a deterrent to Ethan necking half the bottle. Just knowing it’s there has made me so much more relaxed. I’m not even checking how much is left – the very fact the bottle’s still there means I can trust him (but, yes, I’ve checked dark corners and filing cabinet drawers just in case – nothing there either). I think the fact he started drinking heavily again pulled us both up sharp and made us realise that we can’t get too complacent. We need, more than most married couples, to be on our guard against letting things overtake us – and keep on working at being the best we can be for each other. Three crazy, loud, screaming, arguing, demanding young children don’t make that easy! We don’t have much time or energy left for each other and, so often, they’re the cause of our arguments.
But this is a sunny, happy post. And, actually, today has been brilliant. It’s the first time for ages that we’ve spent a family day together. It’s also the first day of two weeks annual leave for Ethan so that’s instantly a load of pressure off him.
Ethan’s instincts for doom and irritability have been tested right from the off today. The day started off with heavy rain – and Ethan began to go down the familiar route of pessimism and gloom. A gentle reminder from me was able to pull him back. And, as if as a reward, the sun came out – and shone all day!
Then we went on our bike ride. The scenery was beautiful, the weather was beautiful, the kids were actually well-behaved. But it was a pretty long, drawn-out affair. Sam has only recently learnt to ride a bike and, in retrospect, the distance was a bit ambitious for him – and uphill all the way back! We literally were stopping every five minutes, or less, ‘for a rest’ and Sam whinged and cried for pretty much the whole hour return journey. Ethan bore the brunt of Sam’s neediness and did 90 per cent of the work. Stopping with him, encouraging him, patiently to him (again) how to set off. Critically, he didn’t shout, lose his temper or criticise.
Having a husband who I could trust, and even leave, to help shoulder the responsibility of our kids, felt so liberating. I even rode off a couple of times and left Ethan to sort out Sam. And he did a good job. Days like today show me that Ethan can be the person we all want him to be – when he makes the effort. Which begs the question of why he doesn’t make the effort more often – even all the time?
But I know why. It takes so much effort for Ethan to appear optimistic when he feels pessimistic. It takes so much out of him to be patient when he feels like exploding. It’s exhausting for him to be sociable when everything in him is retreating. And it’s hard work or him to smile amidst the chaos and mess and unpredictability of our family life. But, if we can have a day like today once a week and get at least half way there on the other days, I’ll be pretty happy.