Google+ Badge

Saturday, 19 April 2014

Comparing my Aspergers spouse = not really very helpful

Yesterday we set off on a happy family bike-ride in the balmy Good Friday sunshine. What could possibly get in the way of us having a lovely relaxed afternoon together?
Before we even set off, Ava and I had come to blows - over what she should wear. At 9 years old she seems to be careering headfirst into pre-puberty and is becoming almost as frustrating to live with as Ethan - though I love them both dearly!
As soon as we arrived at the place we'd planned to cycle, we met someone we knew. The guy was with his daughter who is in Ava's class at school. She and Ava inevitably wanted us all to cycle together.
The girl's dad subtly tried to gauge our reaction and asked which way we were planning to cycle. 'We're going this way,' came Ethan's very definite, un-subtle, 'no-room-for-negotiation' reply! I knew Ethan wanted it to be just us. I knew the unplanned, unannounced presence of these other people was hard for him to deal with - and maybe I should have let it go. But I just couldn't help myself, the unfriendliness and awkwardness in the air went against everything in my nature... 'We can go either way really,' I said, sensing Ethan glaring at me, 'it doesn't really matter to us.'
We stumbled over each other in politeness for a while - Ethan giving off negative vibes, me encouraging this guy and his daughter to join us and the poor guy trying to read through our conflicting lines and do the right thing! He went down the route of us both going our separate ways at first and he and his daughter cycled off, only to stop a few yards on, obviously wondering if they were the ones now being unfriendly, to say 'We could all ride together if you like...?!'
The upshot of it was that we cycled together for a while. It was frustratingly slow progress as we had to keep stopping because Sam's legs were tired. It was in a conversation during one of these stops that I was struck anew at how difficult it can be to have a decent conversation with Ethan. And also, with an 'average' bloke there for comparison, how negative and bitter he can sound.
The topic came up of when the kids are due back at school following the Easter break. Ethan responded in a grudging tone 'I'm surprised they've not shoved an Inset day on the end of the holiday.' We talked about how they're only back for a few weeks before they're off again. Then how there are only 7 weeks before the school year is done. The context was 'hasn't the time flown?' and I know Ethan was just trying to join in but his contribution of 'They're never there,' just sounded unpleasant: It was the unfortunate combination of his choice of words and tone of voice. Probably, my expectations and preconceptions colour how I hear him too. But Ethan's comment ended the conversation. Neither of us N/T's could think of anything cheery to say to that.
It was shortly after that stop-off that Sam gave up entirely. He was on a bike that was too small for him, his legs were working like the clappers to keep the wheels turning and he was just knackered! He let his bike fall to the ground and started crying.
Ethan responded the best he could. He tried to encourage Sam. But it didn't come out very tenderly. Again, the combination of words he chose and tone he used, meant he came across as impatient and irritated. Unfortunately for Ethan, his reaction looked worse in light of the up-beat, encouraging and positive  solution-finding response from the other dad, who proceeded to push the back of Sam on his bike as he rode along beside him.
Poor Ethan. It must have been hard to see another bloke sorting out his own son so effectively in a way that Ethan struggled to achieve. I was short and critical with him too, having had my senses and emotions awakened to what other people's husbands and dads are like. Without a direct reference, you often forget how tense your family life is compared to other people's.
We did, at least, talk things through a little bit when we got home (which, incidentally, was hours later as Sam ended up with a flat tyre and had to walk the last mile!)
I'm pleased to say that Ethan was in touch with his emotions and said how he struggled with someone else pushing his son on his bike and how he'd struggled also with these unexpected guests joining us in the first place. He stopped short of saying that this guy's presence highlighted his shortcomings and made him feel uncomfortable - but we both knew it.
After fourteen years of being married to Ethan and a few years prior to that dating him, I do love him, but sometimes in a resigned kind of way. And I know how hard life can be for him. Sometimes, when he's trying hard to fit in and be sociable, I feel a surge of love and affection for him. But, other times, when faced with the sociable, easy-going, up-beat ease of other people next to the awkward, gloomy tension of Ethan, I find myself looking at him through other people's eyes and just seeing someone abrupt, negative and difficult to get along with. It's tricky when that person you're seeing in such an unattractive light is your husband.
And I know this blog might seem like just a tool for criticising Ethan and moaning about my lot in life. I don't mean it to be. As I've written before, I'm an N/T partner with plenty of difficult-to-live-with traits of my own. It's just that I happen to be the one writing this blog, hence Ethan comes in for all the criticism. I should get Ethan to write a post about how frustratingly chaotic, emotional, illogical and demanding I am to live with...make myself vulnerable for a change...

...watch this space!

Friday, 11 April 2014

Can an Aspergers/neuro-typical marriage work?

With Ethan and I, things go well for a while, then discontent, disappointment, anger and irritation start to bubble under the surface. Life carries on - kids need looking after, jobs need doing, shift-work, lack of sleep and bickering kids take their toll. The simmering frustration builds until it crescendos into an all-out-blow-out.
That's what happened two days ago. There wasn't one specific thing that tipped me over the edge - rather it was the build-up of a thousand little actions, or inactions...
The way Ethan never smiles, the negative, cynical commentary on life that we're all treated to, the disengagement from family banter, the way he forgets something as soon as I tell him it and never remembers anyone's name! The way he shouts at the kids over minor things, the way he phrases things ("So you want me to go out Thursday, Friday and Saturday night?" somehow blaming me for the fact that we've been invited out to three occasions in a row. And why does he need to 'blame' anyone anyway? A few days earlier he'd been grumbling that he never gets to go out...) and the way he asks me if I'm OK after a battle of the wills with Ava only to laugh at a message on his phone and start texting someone a second later as I'm tellnig him that, actually, no - I'm feeling a bit upset. Most of all for the way he just doesn't get me.
It's a lonely existence sometimes.
And the result of these many little acts, the many occasions when we just don't connect when other people would - over a shared joke, a scintillating conversation, a knowing look, is me - every so often - losing it. I say I want us to split up, I pull him apart for all the ways he doesn't meet my needs, I put him down and tell him how miserable he makes me.
It's not fair. He does his best - most of the time. Which is all we can ask of anyone. And, in different ways, I'm equally (perhaps more) hard to live with than him.
We don't split up. We muddle on. Ethan is very patient with me.
What we could really do with, both of us, is a support group for him - a collection of other high-functioning, outwardly successful, competent people who happen to have Aspergers and who struggle with aspects of life that the rest of us take for granted. And for me, a group of other neuro-typical partners who would understand the massive and million minutiae issues of living with a partner with Aspergers. And who I could laugh at it all with...

Monday, 31 March 2014

Living with Aspergers - why criticism doesn't work

We must be more than halfway through Lent - and my resolve to give up criticising Ethan for the whole Lent period (partly as an experiment to see how it changes things) has had mixed success.
The first few days were a massive failure. Ethan seemed to annoy me more than ever (it's like when you're forbidden to eat something and that's all you want to eat)! I had less patience and grace than ever before. It was as if, as soon as I vowed to stop criticising, someone turned up the heat!
The first morning of Lent, I was full of fresh hope and determination. Then Ethan took the kids to school. A positive thing - he was being thoughtful and selfless, giving me a break and letting me have a lie-in. Except it caused more stress than if I'd just taken them myself.
At 8am, Ava still wasn't dressed. Oliver was wearing Sam's clothes and Sam was immersed in a game that Ethan had set up for him on the ipad.
Ethan, in his pyjamas, was emptying the dishwasher and cleaning the kitchen cupboard handles (a worthy pursuit but really not the priority right then).
I busied around, shouted, got the kids organised, got Ethan organised (including criticising his choice of spoon for Oliver - a teaspoon for rice krispies - it was taking him forever, and criticising him for not giving the kids a drink).
Half an hour later as bags were being assembled, I handed Ethan two letters and a reply slip, explaining that the two letters were for Sam's teacher and the slip was for Oliver to take into pre-school. I knew he wasn't listening and, at the risk of nagging, said it again...and again. I even got him to repeat the instructions back to me (childish, I know, but necessary).
On the way out the door he held up the pile of papers in his hand and asked 'So these are all Sam's?' ARGH! With the general stress of the moment and already having had to get all the bags and lunchboxes from the kitchen side that Ethan had forgotten and calm Sam down whom Ethan had pushed out of the way a bit too hard in irritation, I launched into an attack: I criticised his inadequacies. I shouted that being married to him was like having another child. I patronisingly asked him whether he could manage to remember who's letter was who's long enough to get to school. And I did it all in front of the kids.
As he and the kids tumbled out of the house, and I was starting to feel a little guilty, Ethan led them all straight into a huge puddle at the side of the road. The last thing I heard, as they trudged down the road, was Ava moaning that her sock was wet!
When all was calm again and I was by myself, I felt bad for my outburst. Ethan's behaviour, lack of engagement, inability to priotise and vacannt-ness (if that's a word) is infuriating. But it's not deliberate. And me criticising, patronising, putting down and blaming certainly doesn't help either of us. It damages how I see Ethan and it damages how Ethan sees Ethan. And, I'm ashamed to say, the kids are starting to copy me and 'tell Ethan off' when he messes up (or come and tell me how he's failed). It must be crushing for Ethan's self-esteem and damage his sense of acceptance by his family. And, as long as I'm focusing on the shortfalls, I'm missing the countless little achievements, efforts, successes and selfless acts that Ethan brings to each day and which take so much from him.
When I criticise, rather than spurring Ethan on to be better, I push him further into defeatism, self-doubt and feelings of failure. Who's going to strive to be better with those emotions swirling around in their head? I also feed feelings of disdain, superiority and contempt towards Ethan in myself; when, actually, there is so much to be glad about and to celebrate in Ethan. Criticism holds us both, as individuals and in our relationship, back.
So, instead of criticising I'm trying to:
a) keep quiet (not meaning to preach but praying for Ethan when I feel like killing him yields amazing results - it brings me peace and seems to shift things in him)
b) talk things through with Ethan after the heat of the event
c) examine my own behaviour and attitude and identify where I need to make changes
d) for everything I pull Ethan up about, I try to tell him one thing he's great at.
I'm not always successful - I find it almost impossible to hold my frustration and anger in when Ethan has done something annoying/stupid/insensitive. But the more I do it, the easier it gets. And the results are so much better for us both. The more I try to understand, the less I feel the need to criticise and the better Ethan responds.
One thing I've learnt for sure: outright, unreserved, criticism doesn't work.

Tuesday, 25 March 2014

Lessons in Aspergers: What can change and what am I stuck with?

It's a crucial question to answer - otherwise I risk exploding with frustration and making mine and Ethan's life more miserable through nagging and whining and chipping away at things that will never change. Not through lack of trying on Ethan's part or lack of patience on mine but purely because there are aspects of Ethan - wiring in parts of his brain, if you like - that just can't be altered. It's like trying to change the colour of his eyes through wishful thinking or forcing a genuine love of literature purely by telling him he has to like reading, even if he is dyslexic.
Some things we can work on - things like mastering the art of small talk (lesson #1 look at the person speaking to you, Lesson #2 if you haven't heard what the other person has said, ask them to repeat themselves, don't guess or ignore them, etc).
Some things, I fear, won't change - at least not very often or for very long.
Things like his tone of voice which is such a source of antagonism in our family. He constantly sounds aggressive and attacking and accusatory-even when he's just asking what I want for breakfast or telling the kids to get their pyjamas on. The words are spat out, as if we're an annoyance to him just for existing. But when I confront him about it, he's no clue what I'm on about! In his mind, he's speaking perfectly normally. The one time I've seen a glimpse of recognition flitter across his consciousness was when he accidentally recorded himself shouting at a roomful of 8 and 9-year-olds to tell them to be quiet at Ava's birthday. It was scary stuff (although, admittedly, it had the desired effect!) and Ethan looked genuinely sheepish when he heard himself back.
The other thing I'm gradually realising won't change is Ethan's childlike disorganisation and dependence on me to sort everything out. Some guys at church have arranged a night out specifically around Ethan's availability because they know he works odd hours. They've checked and re-checked the dates with him and Ethan's confirmed that, yes, he can make that date. I've always known that Ethan's had an early (4am) start the next day but presumed, since he was looking at his rota when he texted back his confirmation, that he'd factored that in to his thinking. I was wrong.
Thankfully I brought it up today and asked him if he'd be having a sleep on Friday afternoon since he'd be out Friday night and up early on Saturday morning. He looked at me aghast and confused.
Somehow, although he was staring right at his rota when he'd said yes to Friday, he'd failed to see that he was working at 4am the next morning. And his text to the guy who'd organised the evening ('sorry, can't make this Friday. Next time.') really didn't do much to appease the situation. So I found myself: a) bearing the brunt of his frustration - somehow it was my fault, it can't ever be his b) having to text this guy and apologise properly on Ethan's behalf and c) realising, again, that any social, practical or time-management aspect of Ethan's life has to be micro-managed by me if we're to avert disaster, not offend anyone or, as an example, get the kids to school before lunchtime.
Accepting what won't change or, I suppose more to the point, where I have to change (my expectations & attitude) is hard. But knocking my head against a brick wall trying to bring about change which just won't come is even more frustrating for us all. So, if we're to stay together in this muddled, Aspergers/neuro-typical & three young kids relationship, he needs to change what he can and I need to accept what he can't. And, dare I say it, on some issues, it's got to be me doing the changing. After all, the world and I are constantly expecting Ethan to regulate himself and change who he is. It's only fair that I should meet him halfway. And I try to because I know he's trying, really hard, to do it too.
And because he doesn't give up on himself, me or our relationship, I don't either.

Thursday, 20 March 2014

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.

Thursday, 13 March 2014

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!

Thursday, 6 March 2014

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!