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.

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 appearances...life 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.

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?!]

...it’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.

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?!

Must try harder: things my Aspergers husband needs

When Ethan was diagnosed with Aspergers just over a year ago, I was gripped by an urgency to read and absorb as much information as I could about the condition. But, only one and a half books in to my learning expedition, my hunger has been quashed by the busyness of life. Reading about how to live with a partner with Aspergers has been taken over by actually doing it. We're learning on the job.

I did, however, manage a quick flick through Alone Together by Katrin Bentley the other day, and discovered that there are certain key practices that could really help Ethan to get the best out of himself - and life. The challenge is how to build these practices in to every-day life. Here are some of them:

1) Get plenty of exercise and fresh air. Some studies have suggested that people with Aspergers have less serotonin in their bodies than neuro-typicals. Getting a daily dose of sunlight helps boost levels of this feel-good hormone. Ethan has just joined a gym. Mainly to try and regain his pre-marital physique! I'm hoping though that the exercise might also be a tonic for his mind. If only he could also walk around with a sun-lamp attached to his head. 

2) Building in downtime. This is so essential for Ethan - to be able to recharge and recuperate from life. I see the difference when he's had an hour hiding out in his cave (the office) with the computer. Even better would be if I could persuade him to go out for a walk - time out, exercise and daylight - a triple whammy. Creating this time for him means giving away more of mine. That's where the rubber hits the road. I feel stretched to capacity as it is. The upside is that more time out for him means a happier, calmer husband and dad when he is around.

3) He needs more sleep! People with Aspergers (again I've read) need more sleep than the average person. And yet Ethan is surviving on far less - a combination of shift work, three young kids and trying to grab kid-free time when we can (which tends to be evenings when we stay up too late). It's a sacrifice to lose some me/us time but I think it's a sacrifice that would bring more benefits than losses. With ear-plugs and renewed effort, I'm sure we could do better.

4) If we need to have difficult conversations, he needs to be calm. Having me shriek at him when he's already stressed and we're surrounded by noise and chaos, just makes matters worse and either makes him explode or switch off. If I want my words to be received and have an impact, I need to chose my moments wisely. I need to help him feel relaxed. I need to avoid being confrontational, intense or critical. In the past I've made Ethan look at me while I'm speaking about something important 'so that I know he's listening'. But it doesn't work. In fact I think that, most of the time, it has the opposite effect. It's too intense. His eyes might be looking at me but his mind has wandered off to somewhere less overwhelming. Where his skin doesn't crawl. If meeting all of these criteria for a conversation is too much to ask sometimes, perhaps I need to write down how I'm feeling and what's bothering me from time to time and let Ethan process the words quietly by himself.

5) This one's really pushing it but Ethan reckons that he feels calmer and happier when the house is tidy. As I write I'm surrounded by Lego, books, fuzzy felt, a half-eaten brioche, Spiderman gizmos, school letters and wet clothes hanging on the airer (oh, and three noisy, demanding kids spilling their tea on the table!). I feel like we'd be fighting a losing battle trying to keep the whole house tidy, or calm. But maybe we could do one room. It could be Ethan's haven from the chaos.

These are some of the things that would make life easier for Ethan (and there are many more). Of course, there are things that I, as his NT partner, need too. This Aspergers journey is about us both adapting, making allowances for each other where we can and spurring each other on in our very different realities. 

Maybe I'll have my turn and list the five things I really need as Ethan's NT wife next time...

Aspergers and detachment therapy

Am experimenting with a different approach to this Aspergers thing - detachment.
Not from Ethan as a person but from the behaviours and words and actions that have kept tripping us up and holding us back and building resentment for so many years.
So, when I came downstairs this morning and Ethan had polished off all the Smoothie carton (that I'd had none of) without giving a thought to the fact that I might want some, I didn't take it personally and got myself a glass of tasty, refreshing water!
My resolve was tested (and temporarily failed) at church later today though. I was at one end of a row with all three kids surrounding me, clawing at me, speaking at me, competing to clamber onto me and generally hassling me while Ethan was at the other end of the row surrounded by three empty chairs. When he finally recognised my frustrated glares, he took the boys to the back of church where he stood staring into space while they ran amok - vaulting over the (recently reupholstered) sofas, squealing at each other and generally making a racket. Ethan was oblivious to the looks of nearby members of the congregation so I had to step in.
I peeled Ava off my knee, separated the boys, grabbed a sticker and colouring book that we're lying nearby and got the boys absorbed in a task each: if not completely quiet then quiet-er, and still.
I missed the song I wanted to sing. Then I had to go upstairs and teach Sunday School.
My instinct was to blame Ethan. To despair at how clueless he is and to feel self-righteously self-pitying at how unfair it all is and how exhausted I am at having to take charge of everything all the time (as well as volunteering at church/school/Beavers for the both of us). Admittedly, I sunk into all of that for a while. It took a long walk on my own while Ethan, to his credit, entertained the kids, to sort my head out.
Now I'm detaching myself - separating out the behaviour and lack of insight from the person. I know that Ethan's desire is to be the best husband and dad that he can be. I know that his heart is to be kind and I know that he does his best. I also know that, however hard I feel life is for me, it's even harder for him. I know that, if he could have prevented it, he wouldn't have zoned out while the boys pranced around him. I know that, if he could have re-programmed his brain to realise that the boys were being inappropriate and if he could have seen what do about it, he would have done it.
And, when I'm tempted to feel badly-done-to, I remind myself that, again and again, he pushes himself-physically, emotionally, mentally and socially to be as close as he can be to the person we all need.

Aspergers and obsessive labelling...

...not the social type of labelling that people give to other people, the real 'printing off information and sticking it on things' type.
Ethan has a new gadget: a label-printer.
So far he as constructed a docking station duly labelled, with each individual plug also labelled with the appropriate appliance that it corresponds to.
Sam has a new clear plastic tub filled with his lego. Just in case there's any confusion though, it's labelled with the words Sam's lego.
Even our hamster's bed box had a label (until recently): Hammy's bed. Ethan took it off after a guest commented how cute it was that Sam wanted to label his pet's bed!
It kind of goes like this with Ethan - he throws himself into new ideas, projects and purchases with gusto.
We have not one but two men's high-end mountain/road bikes in our shed. A hobby that lasted almost a full year. The bikes have stood sadly dormant for the last five.
The rest of our shed is filled with the six-man tent and every conceivable accessory to go with it that Ethan bought as a 'cheap' way to do family holidays years ago. We've used it four times (and only once for a full week). For our camping holiday in France this year, Ethan's insisted that we hire a tent and its contents there. It would take too long to set ours up, it's too stressful erecting it with the kids around and we don't have enough space in our car to transport it. Money well spent, then.
This intense obsession with new things that ends almost as abruptly as it begins, may not be anything to do with Aspergers. It might just be him.
But as he currently busies himself compartmentalising and labelling the entire contents of our medicine drawer (painkillers, cold remedies, creams, hay-fever and miscellaneous neatly filed in boxes) I have a sneaking suspicion that Aspergers just might be playing a part.
PS I should also add, loathe though I am to admit it, that Ethan's labelling (at least of medicines & plugs) is actually proving to be quite useful. Perhaps we are better together after all.