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Friday, 27 June 2014

The harsh realities of life with Aspergers



The pride in my husband (see Aspergers – glimpses of hope) lasted the entire time he was away! And even for the first hour or so after his return. However, 48 hours after normal life resumed, hope was fading fast.
It’s not that the situation’s hopeless – or that he isn’t still all those things I wrote about in my last post (persevering, committed, aspiring to be better, etc) it’s just that he’s also unsociable, rubbish at small talk, hard to share life with, critical, negative, angry, vacant, walks funny and coughs ALL THE TIME. When I’m not with him I can appreciate all the wonderful qualities I married him for but, when he’s around, I just can’t see past the utterly annoying ones.
The other day, I picked him and Sam up from the barbers because it was raining. I’d just pulled out when I saw a woman indicating to pull out to turn right onto the road that I was driving down. I’d only gone about two meters and was travelling at around 5 miles an hour so it wasn’t a huge sacrifice for me to stop and signal her out. ‘Don’t let her out,’ barked Ethan seated next to me, ‘It’s your right of way.’ I was irritated no end: 1) because he was telling me how I should drive and 2) because he was so vehemently opposed to us putting someone else before ourselves – to me being courteous and selfless. In short, he was being thoroughly and selfishly unpleasant. And I know aspergers is selfishness personified: the word autism is taken directly from the Greek route auto, meaning self. It’s hard-wired into him – he can’t help it. To a point. But have fourteen years of nurturing, tutoring and coercing from me really not achieved anything? At the very least, if he can’t help thinking such things, then couldn’t he at least keep them to himself?
This incident was followed, shortly afterwards, by Ethan pretty much blanking the dad who came round to pick up his child from a play at our house – he barely looked up from loading the dishwasher to say hello. ‘I can’t focus on talking when there are distractions in the room,’ he said by way of explanation afterwards (so all the time, then). He’d started loading the dishwasher before this dad came round, and that remained his focus until it was done. To his credit, he did, for the last few minutes, realise (perhaps it was my glares that did it) that he was being rude and stopped loading the dishwasher. But, although physically his hands had started loading dishes, the task was still going on in his mind. He wasn’t in the conversation, his head was elsewhere – it was still all down to me. And, when both me and Ethan are in the room with another dad, it’s got to seem odd that it’s me, and not Ethan, that’s chatting to the other man. I know, again, textbook Aspergers but, frankly, bloody awkward and embarrassing to live with.
He topped it all off, when we went out the next evening and I tipped the taxi driver, by telling him to ‘spend it on a new shocker – your suspension’s awful.’ Another toe-curling moment for me. And, actually, a perfect example of our partnership – me trying always to be as nice and helpful to people as I can (at the expense of my own needs sometimes) and him trying his hardest to be as nice to himself as he can – at the expense of everyone else.
No wonder we clash so much.

Monday, 23 June 2014

Aspergers and glimpses of hope

I'm proud of my husband and, given that I spend so much of the time feeling frustrated and slightly disappointed in him, pride makes a nice change. And it's not because I've closed my mind to his shortcomings and our problems (which, of course, are half my doing as well). It's because I've consciously decided (for today at least) to focus on what he has and does achieve, how hard he tries - regardless of whether or not he gets it right, and of how he keeps persisting in areas that the rest of us take for granted. I'm proud of him despite of and because of his Aspergers.
He's spent this weekend, with a group of other blokes, feeling (I know although he wouldn't say) a little inferior, a little on the edge, a little out of his depth. He's been in situations that have been uncomfortable for him, he's been required to be focused, to be present and engaged - with very little downtime - for a whole weekend. And then he's had to come home to a houseful of kids and chaos and noise and demands and enter straight into a busy world of work pressures starting at 4am the next morning. And he's done it all with good grace and cheerfulness.
He's been open and vulnerable too - and it touched my heart almost as much as it would if it was one of my kids when he told me, on the phone, that he wished he could throw a whistle rocket as well as everyone else (sport, and coordination in general, has never been his strong point) and wished he had someone to practise with.
And I really appreciated, when he arrived home exhausted from the social and emotional effort of the weekend - which to everyone else will have been a break and a chance to recharge - that he still made the effort to chat to me and spend time with the kids.
Perhaps most people would think all this is no big deal - just part of being human and in a family, but I know that none of this comes easily or naturally for Ethan. I know it costs him a lot. And yet he perseveres - he steps out of his comfort zone and goes away for weekends with a load of neuro-typical blokes, then comes home and hangs out with his kids, because he wants to push himself to be the best and most 'normal' dad/husband/friend that he can be. And, for that, I will always be proud.

Tuesday, 17 June 2014

Aspergers = skint

This Aspergers is an expensive business.
Not only do we have gadgets galore - iPod, iPad, iPhones, PC, laptops, DVD player, blu-ray player, xtreamer, humax, two embarrassingly big TVs (one of them 3D), stereo surround, a base bin, two stereos and a DAB radio, Ethan's Aspergers also seems to require that he has not one, but two, sheds and a completely soundproofed house. This latest necessity is meaning we have to tear down two perfectly satisfactory, decorated walls and pull up one fairly new carpet to insert insulation panels and rubber matting. All because we sometimes hear the neighbours talking. And Ethan can't watch TV loudly in the evening because Ava is asleep above him.
I've given up arguing about it all. The arguments are fiery and defensive and exhausting and never end in a peaceful resolution. And, I suppose, he doesn't spend very much at all on the every-day things that other blokes might fritter away money on - like beer, clothes, nights out, sport, football matches...I guess half my problem is that I'd rather he spent money on those sociable, 'healthy' pastimes rather than on trying to keep the world out. Or bringing his own passive world in.
The other half of my problem is that I want a log-burner and he keeps spending all our fliipin' money!
We should have taken out Aspergers insurance years ago!

Saturday, 14 June 2014

Aspergers before breakfast

I wake Ethan up, having slept in longer than me, with a cup of tea.
He comes downstairs a while later having got himself up and dressed. I've got all three kids up and dressed, made pancakes for their breakfast, got Sam's football bag ready and swept the trail of sand off the floor that Sam's toy snake with a hole in has left.
Ethan is on the football run this morning and, thoughtfully, has offered to take all the kids to give me some time to catch up with stuff at home. Ava asks Ethan if she can take her bike. Ethan says no, it's too much hassle and he hasn't got time to get it out of the bike shed. I get the bike, rearrange the car and squeeze it in.
Ethan sees the free Sun newspaper on the kitchen side. Becomes the most animated he's been all morning telling me that they're going to be charged £1,000,000 because they've broken a publishing law by not putting their name and address on the paper. He becomes decidedly perky and enthused at the thought of The Sun's misfortune and them being 'caught out'.
When the kids are finally all in the car and the doors are closed, I hear Ethan blasting Sam at 1,000 decibels for lying about touching the car radio. He's six-years-old. And maybe he wouldn't lie if he didn't think Ethan was going to fly into a rage over every little thing.
I dash back into the house to grab a ball for Oliver to play with whilst Sam's at his football club. Tell Ethan to hang on a moment. Come back with the ball. Ethan's left.
Why is it that the traits of Aspergers are so, well, unpleasant? Or is that just Ethan?

Wednesday, 11 June 2014

Happy anniversary to my Aspergers husband

The message in my anniversary card to Ethan:

Dear Ethan,
Our relationship has been, is and will be to come, hard work. Requiring lots of understanding, compromising and forgiveness. As our very different personalities, outlooks, minds and backgrounds rub together - sometimes causing friction, we are moulding and shaping each other and hopefully moving closer, together, to the people, and couple, that we are meant to be.
We have issues, we have different ways of looking at things, we niggle and argue quite a lot. But what we also have is commitment - to each other and to our family, a belief in each other, a deep-rooted (sometimes too deep to see or feel!) love for each other that has been carved out through the years, three wonderful kids, and lots of prayer! And so we'll keep on muddling through - trying to bring out the best in each other and to be the best we can be for each other, knowing that, in every relationship there are issues, hurdles and challenges to overcome. And we will, if not overcome them all, then learn to adapt to them. Knowing that we're better together than we are apart: secure in the knowledge that, whatever's thrown at us, we'll do life together.
Thanks for the journey. Laura x

Ethan's response: "Thanks for the card. It was very [pause] interesting. Very, erm, long. Lots of writing."

<deep breath. Embrace the differences!>

Saturday, 7 June 2014

Holidays - tinged with Aspergers



We’re back – in one piece. If not mentally then at least physically!
I’d forgotten /blotted out from my memory how difficult family holidays can be with an Aspergic partner and parent.
In some ways, Ethan was the perfect companion – he did all the driving in France, programmed the sat nav so we never got lost, put together an itinerary in a shiny red ring-binder and organised the passports, insurance and euros. However, as a holiday companion to have fun with, relax with, socialise with he was, well, rather lacking.
This holiday was peppered with the frustrations, arguments, disappointments and exasperation that I should have known would be inevitable. We were living in close proximity (a tent) with three young children for ten days. It was like being at home – and then some!
Things that should have been fun and relationship-building (Ethan having a game of pool with Sam and Oliver) turned into heated arguments and sullen moods (Ethan got moody and detached when six-year-old Sam and four-year-old Oliver didn’t show enough enthusiasm for learning the proper rules and techniques of pool and wanted to do what all little boys want to do and whack the balls their own haphazard way – Ethan refused to play anymore). He bubbled over angrily with me as we were surrounded by happy, relaxed holiday-makers because I’d inadvertently turned my phone’s cellular access on and cost us – wait for it...£1.60. It wasn’t the expense that bothered him so much as the fact he’d told me not to turn it on. I’d broken his rule.  It was too much. I’d reached saturation point. I swore at him and stomped off angrily. I was conscious that nine-year-old Ava was at the site’s pool party and was due to get out in the next ten minutes and needed at least one of us around. ‘But sod it,’ I thought, ‘he can take responsibility for once.’ It did cross my mind, briefly, that he might overlook the fact Ava would be getting out of the pool any minute, but I pushed the thought away – no, we’d been at the bar right next to the pool before I stomped off, he’d watched Ava play in the pool through the railings, we’d talked about the fact the party finished at 9.30pm. I carried on stomping and fantasised about divorce.
By 9.40pm I was calmer. I was starting to come around to the idea of working things out rather than throwing things (him) out. As I turned the corner though, I spotted Ethan, without Ava, casually taking photos of the river. The fury rose up in me like lava. I ran past him, reminding him of how useless and selfish he was as I went, and found Ava five minutes later cold, shivering and crying as she wandered around the campsite in her swimming costume in the dark wondering where her parents were.
Every emotion in me towards Ethan was negative at that moment: anger, disappointment, frustration, hurt, loneliness, despair...but, as I wrote this entry, we were travelling home together. A family, if not in harmony, at least intact. I think that’s probably the best we can hope for.
The rest of the holiday, like life, was mixed. There were some lovely times – like Ethan playing frisbee and catch with the boys outside the tent; A family game of football; A sociable day out at a theme park with a couple of other families. There were also some other really difficult moments when Ethan became stressed and overwhelmed or zoned out. There was an awful moment when he ran over Ava’s foot with a hand-pushed rollercoaster cart and, when she started screaming about her foot, told her ‘I don’t care’. The result was her screaming louder that she didn’t like him, how he was selfish and horrible – all in front of the other families we were with. A few minutes later when things were calming down, Ethan came over to ‘apologise’ to Ava except that his apology was ‘Why aren’t you wearing some decent shoes?’ Needless to say,  another eruption (from me) followed.
Overall though, I think something shifted in me during the holiday. I realised – really realised - that, most of the time, he really doesn’t mean to sound the way he does, react the way he does or say what he does. That he spent most of the holiday feeling stressed, overwhelmed, over-stimulated, confused, tired and trapped. No chance of escape, not chance of downtime, not much sleep, none of the usual coping mechanisms of the computer/Iphone/TV and the relentlessness of people all around him every second of the day and night and the expectation on him to play the part of happy, sociable, fun father and husband. He just couldn’t do it. It did make me wonder whether holidays should exist specifically for families with an Aspergers parent in the mix. Everyone would know the score, there’d be more grace extended (in my imaginings) and space made for the Aspergers partner to have time alone – or maybe plugged into a technology booth onsite – while events were organised for the rest of the family. There’d be support from families for each other, and no one would stare or judge when arguments erupted. Maybe there’s an opening there...