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Tuesday, 25 February 2014

Lessons in Aspergers for a neuro-typical partner: Lesson 1

Lesson one in my journey to enlightenment regarding life with an Aspergers spouse: to accept that Ethan has Aspergers.
One and a half years on from diagnosis, a year after starting this blog and sixteen years into our relationship, you'd think I might have cracked this one.
And I have, in theory. Ethan has Aspergers. I get it. There are certain traits and behaviours he has that make socialising hard, that mean emotional connection in our relationship is often absent, that mean he has a short fuse with the kids when he feels he's not in control, that mean he may not hear a single world I say when I'm speaking about something that really matters to me. I get it. Really. In my head.
In practise though, I still act as though Ethan is neuro-typical. Despite experience saying otherwise, I still cajole him into coming to noisy parties in pubs full of people and background noise, and hope that this time he will be bright and bubbly and sociable, or at least, engaged with proceedings. I feel let down (and make sure he knows it) when he retreats into himself at rowdy family gatherings - filling the role of spectator rather than participant. And, this being my latest mistake, I arrange family days out during half-term in busy, chaotic, noisy city centres - travelling on over-crowded public transport (because our boys like the train) and visiting loud, over-stimulating tourist attractions followed by bright, busy restaurants with our three young children (aged 3,5 and 8). It was stressful for me. Only now, after the event when I bother to stop and think, can I appreciate how excruciatingly stressful it must have been for Ethan.
The problem is that I don't stop to think very often. I revert instead to my impulsive reaction which is to have a go Ethan for being irritable, to feel disappointed and bitter, to mutter criticisms and put-downs about Ethan's failings and to go on making my plans the same way I always have.
I'm not saying that, as a family, we shouldn't ever do anything that Ethan finds uncomfortable (all we'd ever do would be to watch TV and play computer games!), but that, in our plans and arrangements, we should find space and make allowances for Ethan's Aspergers.
So maybe, on our family day out, we should have driven into Manchester so that Ethan would have had a sanctuary at the beginning and end of the day. At future family gatherings, perhaps Ethan and I should agree beforehand that he'll be sociable for a couple of hours before taking himself away somewhere for a bit of downtime to recharge.
In short, I need to let the fact that Ethan has Aspergers spill out from theory and knowledge into affecting how we do life: the places we go, the places we don't go, the choices we make. Sometimes it may mean doing something on my own. I went to a 40th birthday party by myself at the weekend - and it was fine: I didn't spend the night worrying about what kind of an impression Ethan was making. Sometimes it will mean adapting our plans to include some downtime for Ethan, or choosing to go for a family walk in the countryside rather than a family whizz about town. Other times it will be making the conscious decision not to nag Ethan when he gets home from work in the middle of a glorious, sunny spring day and chooses to sit in the dark, shutters down (metaphorically as well as literally) and watch a film!
Ethan needs to accept that he'll have to do some things that he'd rather not do. And that, for the sake of the family, he'll do these things as cheerfully and sociably as he can. And, for the most part, he does try really hard to do that. But I need to accept that there needs to be give and take. That it's not just Ethan that needs to adapt and that, sometimes, Ethan just needs to opt-out for a while. Or that it's our turn, as a family, to do something that suits Ethan rather than always trying to make him fit our world.

Thursday, 20 February 2014

Aspergers and new beginnings

So, I feel this blog is perhaps getting a bit repetitive.
I feel I'm getting a bit repetitive.
The relationship between Ethan, Aspergers and me is repetitive. We seem to go round in circles - the same issues arising again and again. Familiar arguments, heartfelt but customary apologies, well-worn frustrations that get no less frustrating with their frequent continues in the same way it always has; sometimes hugely irritating and disappointing. Often I feel like I have four children to look after, counsel, tell-off, guide and organise. Often Ethan feels nagged, criticised and put-down. We both try to do better but, a lot of the time, we fail.
Sometimes we have glimpses of hope. Or I'm filled with a rare grace and love and appreciation for Ethan. I see beyond the awkwardness and frustration and irritations bubbling shallowly, and almost constantly, on the surface and see his good heart, his humour, his commitment to us - his family - and him trying to understand himself better and so be better. I'm caught up short by how hard and over-stimulating and stressful life with his pressured job and his loud, messy household must be for him. And I'm amazed and in awe of him.
But then I say something and he doesn't respond. We go on a family day out and he wanders off on his own or, in a flash of unreasonable temper, he yanks Sam by his coat, banging his head on a door handle in the process and all I can think is how much I want shot of this man. And wonder why on earth I married him in the first place.
We muddle through. And I could go round in circles writing about the thousand little grievances and incidents along the way for ever. But I feel the need for something more constructive - constructive for me to write as well as for you to read.
And so, starting with the next post, I'll be writing a series of blogs about making life work with a partner with Aspergers. Each post will look at one action, mindset or situation I specifically can take, adopt or influence to make life with an Aspergers husband and dad work better for us all. I don't have a clue what these nuggets will be yet - it'll be a journey of exploration for me too, about what works and, occasionally, what doesn't.
The important thing is that I'm writing about what I can do because, in the end, the only person you can change is yourself. And hope that, in the process, you might nudge the people around you in the right direction too.

Monday, 10 February 2014

Will I ever have a satisfying conversation with my Asperger’s husband?!

Me: [in a tone of voice obviously showing that, despite my words, this is a light-hearted tale. And yes, I know tone of voice and Aspergers is not an effective partnership. But surely...?] Aw, Ava was in such a state this morning – wailing, hiding in the utility room, crying, sobbing...
Ethan: [nothing. Complete silence]
Me: Ethan...Ava was a total state this morning.
Ethan: [distracted] Oh. [Afterthought] Why?
Me: She had this spot in the corner of her mouth. She was in such a state about it. Saying she’d get teased. No-one would play with her. It’s the worst thing that’s ever happened to her...
[I pause here for dramatic effect]
Ethan: [still nothing]
Me: I tried squeezing it but she flinched and screamed every time I went near it. I wanted to pop it with a pin but she totally freaked out at that idea. She went to school with her hood over her eyes and her collar up to her nose! Poor thing....
[Building up to delivery of my closing line now. I’m unmistakeably light-hearted; obviously wanting Ethan to share in my affectionate amusement. Surely, Aspergers or not, he can see that?!]’s going to be the first of many!
Ethan: [still absolutely nothing]
Me: Ethan? Do you want to respond at all?
Ethan: [monotone – no hint of amusement, emotion, tenderness. Nothing.] Erm...I hope she’ll be OK.
Me: sigh.
Conversation ends.

Tuesday, 4 February 2014

A change is as good as a rest: getting away from Aspergers

So - sorry it's been a while; too much on my plate (although not all onerous)...
Spent last weeeknd at a spiritual health weeekend run by NGM (New Generation Music) which was refreshing and uplifting in every sense: spiritually, physically and emotionally.

Ethan held the fort at home - and did a marvellous job. I arrived home to 'welcome home' posters hanging on the door, marzipan stars made by Ethan and Ava, Postman Pat buns made by Ethan and the boys, and the kids buzzing about what a great weekend they'd had. It was a wonderful conclusion to a marvellous weekend, and proved to met that, left to his own devices, Ethan can cope with three rowdy kids on his own. I think that sometimes (often?!) my presence complicates things - I fuss and bicker and nag and interfere. With me out of the picture, Ethan rises to the occasion. He might not do things quite the way I would do them, the kids may well watch too much TV and Oliver may stumble through the day dressed in his big brother's trousers - but they'll all be OK and, through muddling through together, they and Ethan will bond.
It also did me sooooo much good to be away with friends - to be with other neuro-typicals who understand humour and respond to banter and enjoy chatting about nothing and everything. And, perhaps most of all, to be surrounded by cheeriness and fun and positivity.
Ethan is a wonderful, unique person full of strength and loyalty and commitment and knowledge - but cheerful he ain't! And constantly trying to compensate for Ethan's cynicism and negativity is hard work - it takes the joy out of being joyful when it's reciprocated with gloom. And, with no place to take root and bloom, the joy starts to wilt and die.
This weekend showed me that the joy and fun had definitely wilted in me. It took a weekend of recharging with other people that I could connect and laugh and cry with for my joy to be restored.
Rather than try and force these qualities from Ethan and us both getting frustrated, I need to accept that I need to draw on different people for different needs. I'll never give up on trying to make Ethan more cheery - but I need to make sure I spend time with people who are naturally that way inclined in order to top my own cheeriness up.
Maybe it's time to start planning my next weekend away?!
PS I have though just discovered that the entire tub of Ben and Jerry's ice-cream that I bought before I went away has been eaten by Ethan over the course of the weekend. Not at single drop left in the bottom of the tub for me. Guess that's asking too much?!