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.

New years resolutions on behalf of my Aspergers spouse!

Seven days late but here are my top three hopes for change this year – in me and in Ethan – to help us live a calmer, happier, more fulfilled relationship with Aspergers as our constant companion:

Ethan:

1) Change your tone of voice – I get that you don’t really get intonation, along with facial expression and non-verbal-communication in general. But, if you have to use the same tone in all conversation, can’t you select a happier one?! I’m really rather fed-up with ‘miserable with a hint of irritation’ tone. It feels like living with Eeyore combined with Harry Enfield’s Kevin the teenager.

2) Stop being so negative. You can be in your warm, ample home in this free, safe, affluent country with a full stomach courtesy of a wonderful dinner your wife’s made and surrounded by a loving (albeit chaotic, loud and argumentative) family, drowning in stuff you’ve bought yourself and you’ll still actively search out something to criticise and moan about. It makes you a really frustrating, depressing and unattractive person to be around.

3) Actively accept that to grow relationships you need to feed them. That, to have friends, you need to be a friend; which means putting yourself out sometimes, being willing to do things you don’t always want to do, making the effort to speak to people, to say goodbye when you’re leaving a social event, to do favours for people. Understand that, as well as taking from people, you need to give if you want healthy, fulfilling relationships. Put these truths into practise until they become natural – or at least easily forced! You’ll benefit more than the people you reach out to. 

Me:

1) Understand more – read the books on Aspergers and living with an Aspergers partner that are sitting on my bedside table, rather than escaping into a novel. Bother to seek out Ethan’s views and perspectives on things more often and don’t always presume that my approach is the ‘right’ one and his the faulty one to be fixed. Actively try to quash superiority and listen to and learn from his approach. As a result...

2) Change more – criticise less, cut Ethan more slack and appreciate how far he’s come and how amazing he is to cope (generally with goodwill and humility) with the many challenges and hurdles each day throws up. Ungrudgingly build in downtime for Ethan from the loud, disordered chaos of our family life and the world (which means not moaning when he plays fighting games on his computer – although I’ll draw the line if he’s in there for an hour during the most hectic time of the day and showing no signs of emerging!). Accept that Ethan will change the things he can but that some aspects of his behaviour may never change – love him anyway. And focus on what I can change about me.

3) Encourage more – try a different tack. Easier said than done but realise that criticism, nagging and arguing doesn’t result in a repentant, transformed husband but generally an irritated, defiant or withdrawn one. Praise the good, draw out the positives. Don’t react in the heat of the moment and definitely don’t put Ethan down and belittle him in front of the kids. Leave time for me and Ethan to calm down and, when I do bring an issue or situation up, do it in a calm, logical way. Try to draw out his view of things as well as giving my interpretation. And balance out each constructive criticism with a positive encouragement. If I can’t think of one, give him a hug. Don’t harbour resentment. 

All very pious and idealistic, I know. Of course both of us will slip up constantly. But I aspire to these changes in our relationship – this is what I know will make things better. So, when it’s all gone horribly wrong and I’ve screamed at Ethan in front of the kids about how he’s failed us as a dad/husband, I’ll finish seething and imagining life without him, say sorry and come back to these ideals. We’ll both dust ourselves off and start again...and again...and again.

Aspergers and sweating the little things

Argh. It was all going so well. Ethan has been dragged from social event to social event over Christmas and the new year. And, when he wasn't in other people's houses, he was in our house with our three loud, chaotic, over-excited kids. And he's been a delight.

Until five minutes ago. Ethan can deal with big calamities such as the house being burgled or me crashing the car. But should an app on his iphone not work or the Internet connection not be running as fast as it should, or a syncing up of various technology in our house not be tip top, and he's like a bear with a sore head. His factory setting is to focus in on the problem, regardless of what else is happening around him, and not resurface until the issue is resolved - whether that takes an hour, a day, or a week. With kids (and a nagging wife) it's not so easy to do that so he reluctantly has to repeatedly surface from trying to sort out the problem. And each time he does, his irritation increases. So he carries out his responsibilities of going to work or taking the kids to soft play (as he's just done) or helping get the kids to bed - but he shouts and snaps his way through the process, with us only in body so that, in this instance, the quality time he could be having with his sons at soft play will instead be spent with him inwardly seething and, undoubtedly, on his iphone the whole time trying to sort out whatever the computer issue is. He won't tell me what the problem actually is - just keeps snapping at me to leave him alone.

And yes, I have offered to take the boys to soft play myself but he's fiercely determined to do what he said he would do (while I'm meant to be cleaning the house, going food shopping  and unpacking and repacking our bags for yet another 6 hour round trip down the motorway tomorrow).

I know that what he needs is for me and the kids to stay out of his way until he's fixed the problem and turned back into nice daddy/husband. But, like so many aspects of Aspergers, that luxury just isn't open to us in real life with three kids, responsibilities, dinner needing to be cooked, squabbles needing to be sorted, bags needing to be packed...I can't do it all on my own. And I resent having to try because, whatever the computer 'problem' is - everything's still running, we've got Internet - it can't be that important. I'm happy for him to use his own time, later, when I'll take the kids out and occupy them when they're home, to tinker and rant and fiddle with his gadgets, but not now - when he's meant to be focusing on his boys.

This post was meant to be about new year resolutions - for me and for him, to enable us to live better in a relationship and a family with Aspergers in the mix. But I've spent too long ranting myself! I'll have to save that for next time...

Happy bright new 2014 to all of you out there - whatever part Aspergers plays in your life. We're all unique, we're all amazing human beings and we've all got qualities about us that are fantastic as well as habits and instincts that we need to hone in on and take control over. We're all a work in progress and we all need to constantly top up our levels of grace, patience and understanding. Deep breath and on with the cleaning.

Happy New Year everyone. 

Aspergers - adjusting and adapting

It's actually been a pretty good Christmas.
Yesterday Ethan managed to stay calm, sociable and jolly through a Christmas Day packed with people, noise and chaos.
What seemed to make the difference this year was a lot to do with me, I think. Not that I'm taking all the glory but I'm learning - slowly but surely, to accept Ethan's limitations and not to take the odd outburst or badly-phrased comment to heart.
On Christmas Eve I took the three kids to meet up with visiting family for the day while Ethan had an afternoon and evening of blissful solitude. Of course, it raised the question of why he'd not come, but it meant that, by Christmas Day, he was re-charged and ready for the onslaught of Christmas - safe in the knowledge that, by Boxing Day, it would just be our family again, the TV and the kids occupied by their Christmas presents (today's actually been the most stressful day yet - overtired kids and no outsiders to make us all behave but that's beside the point). The downtime beforehand meant that, on Christmas Day, Ethan felt able to throw himself into conversation, family games, present exchanges and church.
In years passed, I've felt that he's needed to be present at every family event - meaning he gets socially and emotionally and physically exhausted and shuts down part way through the season: I get embarrassed and frustrated and hurt and disappointed and tell him how he's spoiling everything which, in turn, sends him retreating further into himself. Meaning I get more embarrassed and hurt, etc etc.
A little adjustment of the event-planning and adapting of expectation and we're all happier. Forcing too much social time on him, I've discovered, is counter-productive to all concerned - it doesn't make for a happy time for me, him or the people we're supposed to be socialising with.
It's not easy - being solely responsible for my three loud, wriggling children in a church Christingle service or in other people's homes - but it's easier than having Ethan with us and me still feeling solely responsible because he's zoned our, or too overwhelmed to do anything other than shout at them, be too heavy-handed with them and make them cry.
I'm learning that I can depend on Ethan for all kinds of things such as putting a table football game together without any instructions, fixing the leaky sink in the bathroom and doing a good job of basting and carving the turkey. But, for other needs like laughing 'til my sides ached over ridiculous tomfoolery, keeping the kids engaged and happy, and enjoying good conversation, I generally have to rely on other people. And that's OK.
It's not all rosy, of course, but relationships rarely are - and we're a work in progress.
Yesterday Ethan even managed to just say nothing when he opened one of his more obscure gifts from a family member. His silence said it all, or course, but he didn't actually say what he was thinking. Believe me - that's a great step forward!

The difference between having Aspergers and just not being very nice

It’s sometimes a fine line. And before the diagnosis I spent a lot of my time thinking Ethan just wasn’t a very nice person. The fact he had no real friends confirmed it to me.

Still today there are times when I need to step back from everything and remind myself that he’s just wired differently to me, and that he doesn’t know how to put on the right impression and hide his thoughts like I do, and that situations I sail through, he stumbles through painfully – doing his best to reach the other side in one piece without having offended anyone.  

On Saturday night he went to the pub with some of the dads from school. He arrived home at about 10.30pm having left the pub without saying goodbye to anyone. He walked into the living room, collapsed on the sofa and moaned about the pub they’d gone to, then he moaned about someone that was there, then he moaned about what I was watching, then he moaned about one of the women on the programme I was watching for being too emotional, then he moaned about another of the women on the programme for not being emotional enough. At that point I sniped at him to please be quiet because he hadn’t stopped moaning since he walked in the door. He got up and went to bed.

The next afternoon we went on a family walk.  While I was slipping and sliding down a mud bank engaging with our kids and entering into the spirit of things, he stood at the top of the bank, hands in his pockets, watching the proceedings and occasionally shouting at the kids not to go in muddy puddles.

Later that evening, while I got the kids to bed, read to Ava, fed the hamster, got the snack ready for the morning and loaded the dishwasher before having to run out the door to work, he watched TV in the office. He’d assured me that he’d wrap some Christmas presents to lighten the load a bit – but he forgot and I was too irritated to remind him (just like he’d forgotten, the week before, to buy stamps even though I’d verbally asked him – and he’d agreed – had written it on a note for him and texted him to remind him).

At this moment, he’s been looking after the kids for a couple of hours – his kids, it’s not like he’s doing me any great favours – and, in the course of those two hours, Ethan has shouted pretty much constantly, Oliver has cried repeatedly, Ava has been sent to her room and Sam abandoned ship long ago and has been hiding out in his room. It’s so hard to feel we’re on an equal footing when so much of what he does ends in tears – mine or the kids. It’s easier, often, just to do everything myself – although then I feel bitter that I never get any downtime.

All of these things seem to present a pretty thoughtless, selfish, disengaged man. The difference now is that I understand why. And so does Ethan. So when I, calmly, point out that just leaving the pub without saying goodbye would be regarded as rude, he accepts that and texts the guy he went with to say sorry. I could have spent the walk on Sunday feeling resentful and annoyed (and, in the past, I would have done). Instead I dumped Oliver with Ethan and ran off with the other two so that Ethan would be forced to interact: and he rose to the occasion. And (because, of course, I couldn’t keep my frustration in and had a quick rant before I left for work) when I arrived home last night, Ethan had hung out all of the washing, unloaded the dishwasher and left me a nice note thanking me for everything I do.

It’s not that Ethan isn’t a nice person-it’s just that his niceness needs constant prompting and wheedling out. Just off to sort out the latest bout of arguments...Happy Christmas everyone!