Lessons in Aspergers for a neuro-typical #3 - Don't apply the same rules!

Fell off the waggon a bit last week with my rant over Ethan's rigid rules keeping me awake half the night.
Am very conscious that I'm meant to be writing a series of posts on lessons I'm learning for effective living with an Aspergers spouse. Also, that I was meant to be giving up criticising Ethan for Lent. Suffice to say, my Lenten ideals aren't living up to the harsh realities of life!
So, to get back to where I'm meant to be, this week's lesson that I'm repeating to myself, mantra-style, is to not expect the same level of social skills, connectivity, understanding and conversation from Ethan as I expect, generally, from others.
It might seem obvious but judging his words and actions by my standards and my social outlook is something that I constantly find myself subconsciously doing. And it's damaging for us both.
When Ethan does say something harsh, insensitive, ignorant (e.g. to me: 'I could see you were losing control of them so I had to step in' as his explanation for bellowing at the kids in front of two leisure centre staff as we were clearing up from Ava's party - a party in which I had done all the socialising with parents and all the jolly banter with the kids, including spending fifty minutes in the swimming pool clambering over a large inflatable octopus with all the little darlings. Anyhow, I digress...) ...when he says such things, I'm learning not to take it on board or to harbour resentment. I need to point out to him that it's an insensitive, unfair, unacceptable thing to say while, at the same time, detaching myself from the statement. What I definitely shouldn't do is take it to heart.
Sometimes he'll just be venting and using me to direct his frustration onto - which isn't nice but, when I've pointed this out, he'll say sorry and tell me he didn't mean what he said.
On other occasions he does, utterly, mean what he says but, even in those times, I'm learning to detach myself and not feel battered down, inadequate, angry or victimised by Ethan's comments but to let them roll off my back. This is, after all, a reaction based on how Ethan sees things - which is very different to how most of the world would see things. Ethan's comments are more to do with him and his frustration, misunderstandings and overwhelmed-ness (I know it's not an actual word) rather than anything to do with me.
When I can step away from feeling personally attacked and instead, recognise that Ethan's words are symptoms of him struggling, then I'm in a much better place to help myself and him.

Aspergers and rigid rules

This man is killing me. I am so very, very sleep-deprived. Not because of my work, not because of the kids, not because I stay up too late watching telly but because of him.
Either he's getting up at 03.30 for work which, granted, he can't do anything about (although he does insist on having a shower every morning at this time which often wakes up Sam as his head is basically next to the shower, with just a thin bit of plasterboard between). Or, if he's not getting up at 03.30 for work, he does what he did this morning: the second he hears the boys stirring, he jumps out of bed and checks whether suns have appeared on their alarm clocks. If not, they're ordered back to bed. This is followed ten minutes later by the same thing, then the same thing, then the same thing.
This morning it went on at about ten minute intervals from 05.55 'til 06.35 - culminating in a heated exchange between us which ruined any chance of me getting back to sleep.
The issue is that the boys have these alarm clocks which illuminate a sun when they're allowed to get up. The problem is that Ethan sticks to this rule with absolute rigidity. He doesn't make any allowances for life.
So this morning when the boys got up and Ethan saw the time and realised the boys' suns weren't on, he jumped out of bed and ordered them back into theirs. He forgot that the boys went to bed nearly an hour earlier than usual last night so were awake earlier this morning. At 06.15 when they tried to get up again, he sent them back to bed again - more angrily this time! If it occurred to him that they were wide awake, had been for twenty minutes and that all this process was doing was keeping us (me and him) awake, he didn't show it.
By 06.30, the boys had been awake for 35 minutes, they'd been in bed for 11.5 hours, they were completely, totally and unmistakably AWAKE and were being forced to lie in bed - because a picture wasn't on a clock! Ethan was unmoved: no sun, no getting up. 'It's the principle', he told me.
And I get it. I know why, from his point of view, he had to wait for the sun, even though, in practical terms, it made no sense. I know things are black and white for him. I know flexibility is verging on impossible. But life's not like that. I'm happy to stick to my guns & not back down with the kids when it's needed. But I also see the need to back down & adapt rules sometimes if circumstances demand it. Ethan doesn't. Which makes him really difficult to live with.
The off-shot of it all is that we had a row (at 6.30am!) & I've had another rubbish night of only a few hours sleep while he switched off from it all and went back to sleep until I woke him up at 07.45 with a cup of tea.
I don't mean to be a whinging old bag or be smugly superior about how perfect I am (I'm far from it) but the injustice of it all & the brain-crushing, debilitating tiredness is creating a quiet desperation inside me.
What am I going to do with this totally rigid, inflexible man who can't see common sense or adapt to circumstances?
I must add that he did say sorry when he did wake up. And, when I got home from work today, he'd cleaned the whole house - because he couldn't stand the mess. Which just goes to show, there are some benefits to being married to a man with Aspergers!

An Aspergers dad: Lessons for a neuro-typical partner #2

Lesson number Two - don't have three kids.
Hmmm - bit late for that, even if we could package Oliver up and send him back (and we wouldn't want to, I hasten to add, he is very much loved!)
However, had I known how much strain having three kids is to Ethan and our relationship...actually, I probably still would have had three. It's in my blood. I've always known I wouldn't be able to stop at two and, much as I love Ethan, I don't think I'd have been able to sacrifice the family I'd always imagined.
Anyway, the point is, we've got three of the little darlings. Aged nearly 4, nearly 6 and nearly 9. Life is pretty much always loud and screechy. Mostly messy. Always rushed. Often stressful. I think that what Ethan struggles the most with is lack of control. The children don't always do what they're told straight away (an understatement!), their actions often don't make sense, they argue - a lot. And they're demanding; they zap our energy, strength and patience. Also, Ethan can't be in control of his own time and pace of doing things with the kids - they're constantly interrupting, he isn't master of his own time.
The problem is that not many of the tactics for managing Aspergers work when you're faced with a gaggle of squawking kids! It's impossible and potentially dangerous to retreat to the 'safe place in your head' as your stress levels rise. Taking yourself physically out of the situation is out of the question when you're the sole responsible adult in charge. And reasoning with a 3 and a 5-year old and explaining why you need them to sit still and quiet for a while doesn't wash either. There's no relief - and therein lies the problem.
Two is manageable but the chaos of three tips Ethan into an agitated, anxious state in which he either shouts and tells the kids off disproprotionately to their actions (e.g. just for being kids) or he disappears - either literally or into himself. Either response usually results in an argument between us.
And even when he's on good form, his behaviour often exacerbates the kids as he finds it so difficult to pick up signs and know what response they need: he rugby tackles them when they need a gentle touch and hugs them when they want to be left alone to play. He's also appalingly bad at listening to them.
I can't make one of the kids disappear. But I can try to restrict play-dates, and therefore more kids in the house, to when Ethan's not around. And I can do my best to allow Ethan downtime away from the kids (and me, for that matter) WITHOUT WHINGING!
That's hard because, as a busy mum-of-three, I already shoulder most of the responsibilities at home as well as working. It grates with me when Ethan vanishes and leaves me to deal with life on my own. Depending on how harassed and indignant I'm feeling at the time, I'll march into the office (his sanctuary) and rattle off all the things I've done, all the things I'm doing and all the things I've still to do whilst he kills virtual soldiers on computer games.
But the fact is that, as a guy with Aspergers, Ethan already climbs mountains every day - just through being sociable all day at work, through helping put the kids to bed, through chatting to me about our days, just through being with us in the chaos and the noise.
The fact is - if I want the best out of Ethan, he needs time out. I might feel like I could really do with it, but he really needs it.
I'm slowly learning that accepting this fact and not resenting it makes for an easier and happier life for us all.
(I should add, in his defence, that Ethan is a great dad and that he does (almost) his fair share of standing at the sidelines of football fields, picking up and dropping off from various clubs and - his speciality - watching Star Wars! Reading the bedtime stories is down to me though - the kids, justifiably, complain that Ethan doesn't do the voices (he's monotone) and that he skips bits!

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?!