Aspergers and the imbalance of responsibility

Sometimes I wish I’d listened to those persistent (sometimes raging) doubts that had told me I was making a huge mistake by marrying Ethan.

He is so difficult to live with at times, totally dysfunctional to have a grown-up relationship with and almost impossible to bring up kids with. It leaves me wondering what was left to draw me to him. But I know really – it was the security, the stability and the flattery of being utterly the centre of his world. I was his special interest for as long as it took to get that ring on my finger.

It’s not that he’s stopped trying now, or turned into a tyrant. I know he does his best – most of the time. It’s just that his best is woefully inadequate and it’s so frustrating that his best never gets any better.

I’ve learnt that, when I’m working and he’s in charge of the kids, telling him over the phone what he needs to do doesn’t cut it. He’s forgotten what I’ve said by the time I get off the phone. So these days I text him the information. Today, in the midst of a really hectic schedule, I took the time to text him the information for this afternoon (‘I’ll bring dinner home, could you peel some potatoes, Sam needs to practice his spellings, Oliver’s going to his friend’s house so don’t worry about him and Ava needs picking up from church at 5pm’). I also emailed him Sam’s spellings to practice.

5pm as I leave work I phone Ethan. This is our conversation:

Me: “Could you put the oven on so it’s warming up?’

Ethan: “Oven? Why am I putting the oven…er (I can hear him scrabbling about in his conscious mind trying desperately to remember what he realises he’s supposed to know)…What’s going in the oven?”

Me (exasperated): “It doesn’t matter what’s going in the oven, just that you turn it on please so it’s warming up….(silence)…for the tea…that I’m bringing home.”

Ethan: Right…erm. OK…

Me: “What’s the problem? Just put it on. And then go and get Ava. You do know it’s after 5pm?”

Ethan: “OK (pause)…Where’s Ava?”

By the time I got home, I was already wound up. So the half-cooked pasta, chopped courgette and pepper and cold oven when I got home was enough to break me. I couldn’t even appreciate the fact that he’d made a start on dinner BECAUSE IT WAS THE WRONG DINNER. I HAD THE B*****Y DINNER IN MY BAG!

Me: “You did at least practice Sam’s spellings with him, did you?”

Ethan (pleased with himself) “Yes, I did.”

I felt slightly calmed. It was only when I was putting Sam to bed later that night and he told me that Ethan had grabbed his head to make him look at the spellings that my heart lurched.  Up to that time Ethan had just been annoying and unreliable. But the frequency with which he loses his temper with the kids over normal childhood behaviour (“he wasn’t doing what I said”) genuinely bothers me. As long as I don’t ask Ethan to do anything in the house or with the kids while he’s in charge, there’s no harm done. But there’s also no jobs done, meaning they’re all waiting for me when I get home. And who wants that?

The ups and downs of an AS/NT life (Or how I loved him then hated him then loved him again)

“I’m going to take the kids to stay with my mum and dad on 10^th April,” said Ethan to me one morning as I was wiping breakfast from around Sam’s mouth and simultaneously trying to pack three lunchboxes, “it’ll give you a break and I don’t go and see them often enough. It’s all arranged.”

“Oh right, erm,” I looked at the calendar to check my suspicions, “that’s the weekend of Becky’s wedding reception.”

“Oh for goodness sake,” said Ethan in the angry tone he uses when something isn’t going the way he wants. “Well there’s always something. I’m going anyway.”

What followed was two weeks of delicately bringing the matter up and suggesting gently that perhaps he could go during the week since he has that whole week booked off for the Easter holidays. Then he wouldn’t need to miss the wedding reception and I wouldn’t need to spend Easter Sunday at home on my own while my three children and husband are at my in-laws.

Each time I tried talking about the impending weekend, the subject was met with sighs, defensiveness  and an unwillingness to talk about it. He didn’t want to go to the wedding reception anyway, he said, “it’ll be awkward, I don’t really know anyone, there’ll be loud music playing so that I can’t hear anyone anyway. You’ll have a better time if you go without me.” This helped justify his decision, “And they won’t miss me,” he added, “they won’t even notice that I’m not there.”

I’ve tried not to be selfish but, the thing is, I don’t really want to go to this wedding reception on my own. However he justifies his absence and however unsociable he is when he’s there and, to my shame, however much he hates it and struggles his way through it, I’d rather have him there than not. It’s not particularly nice going to events like weddings on your own – particularly when you are actually married! In any case, I don’t fancy trying to get myself there and, like a charity case, looking for someone to share a taxi home with. I know, selfish, but there it is.

I accepted that Ethan wasn’t going to budge and texted the girl getting married to apologise profusely that it would only be me coming to her wedding reception and not both of us as per our original reply. I didn’t hear anything back. And I started to worry that she was really annoyed. And then I started to get really annoyed that I was in this position of letting her down and annoying her over something that Ethan had done/the way he is. The resentment continued to fester....

Things trundled along in this unsatisfactory, unresolved manner until yesterday when I realised that I am actually working all day on the Tuesday anyway and that therefore Ethan will have to entertain the kids by himself that day anyway and that, with all of these factors considered, it really made far more sense for him to go to his parents on the Tuesday and Wednesday rather than Easter weekend.

I calmly presented Ethan with the facts and suggested the Tuesday and Wednesday as an alternative. He sighed, shouted, said again that I’d have a better time at the wedding reception on my own to which I had to respond and drop the bombshell that, actually, going to events on my own isn’t fun and isn’t what I want. He got even more irritated by this as it didn’t give him the get-out clause he wanted. I also mentioned that it would be quite nice to be together as a family on Easter Sunday and to be able to see my kids that day and perhaps do an egg hunt with them in the garden.

I tried to keep things calm but he got increasingly agitated and angry, grabbed the phone, called his mum and said that he was going to come on the Tuesday and Wednesday instead. I appreciated that he was taking on board what I’d said but that wasn’t really the reaction I was looking for – I simply wanted a discussion about what dates made the most sense.

Ethan spent the rest of the day being distant and grumpy with me. When I finally challenged him at tea-time he said that yes, he was angry with me, that I was trying to control him and emotionally blackmail him and why should he have to ask his wife’s ‘permission’ to take his kids to his mums and dads anyway? I was seething and heartbroken and incensed and sorry-for-myself all at the same time. Wanting to discuss options for when would be best for him to take our kids away over Easter was not, I felt unreasonable. That he resented having to involve me at all (in his words ‘ask my permission’) was hurtful (he used the same expression when he got angry over me not agreeing to his purchase of a £12,000 convertible BMW that he bought anyway). Also, that he’d been angry and unpleasant to me all day just because I’d stated some facts and presented an alternative opinion was pathetic. 

I really resonated with what someone said on the My story section of the different-together homepage: 

The stress seemed to be caused by very “normal” conditions and yet I was not witnessing typical responses and behaviours from the man who was supposed to be my equal in parenting and all things "grown up".

It was at this point that I hated him. And told him so. Which the kids heard. Which made me hate him more.

I went up to our bedroom and cried and felt sorry for myself some more and thought about divorcing him.

After a while he came up and said how sorry he was and how he knew he’d been horrible and an idiot. And explained that he didn’t want to change the dates because that’s what he’d decided. I told him that was just stubborn - it made no sense, that he couldn’t admit that he’d made a wrong decision. He said he knew – he was stubborn, that he found it really hard to accept that he was wrong. That it didn’t make sense but he just felt really stressed at the thought of changing what he’d already decided was going to happen. He looked so sad and dejected and defeated slumped on the bed that I felt sorry, not for me anymore, but for him. He hugged me and said that he wanted to support me at the wedding.   

He’s now going to his mum and dad’s on the Tuesday and Wednesday and coming to the wedding reception with me on the Saturday. Now I’m the one feeling guilty and telling him to stick to his original plan and go to his parents at the weekend if that’s what he’d rather do. He of course is refusing and determined that we’ll have a good time at the wedding. And I, even though we’ve gone the long way round, love him again for his humility, his sacrifice and his commitment to keep trying.

The rollercoaster goes on and on!

£11,500 - the price for a happy Aspergers husband?

So, he bought the car. All £11,500 worth of it.

The sight of it there on the drive is bitter-sweet. On the one hand it represents his selfishness, his need for things and his hypocrisy.

He bought it despite the fact I vehemently disagreed with the purchase and that we can’t afford it without getting into (more) debt. Also, if we were going to spend that amount of money I’d rather have spent it on something we would all have benefitted from – a holiday maybe, with enough money left over to pay off our credit card bill and be debt-free. Also, my life is peppered with ‘advice’ from Ethan to spend less on food, his loud exhalations of breath at the cost of school trips and, just yesterday, his suggestion that I buy Sam’s shoes from M&S rather than Clarkes as M&S is cheaper (yes, I did nearly deck him!).

On the other hand the car has, for a limited time I realise, made him happy. He’s thoughtful and caring towards me (presumably due to the guilt), he’s jolly with the kids, he takes himself out for drives and comes back relaxed and invigorated and, although I’m loathe to admit it, he’s had some great moments with the kids due to the car. They love it. Ava is desperate for him to pick her up from the school disco in it because it’s so cool. Sam and Oliver love it because the roof comes down and the seats heat up. And on Saturday Ethan and all three kids spent a happy couple of hours cruising around the peak district in it while I got some work done.

After years of battling, I’m at peace with the fact we’re very different when it comes to possessions: I don’t really need them and am not all that interested. In fact I’d rather make do with a slow and decrepit laptop which still has some life in it than get a faster, shinier, new one. He, on the other hand, thinks of anything over 5-years-old as being out of date and past it, he spends countless hours of his life surfing the web looking at products and he gets immense satisfaction out of having the best, most economical, fastest, latest versions of everything. What I get from people, Ethan gets from things.

His spending has always been manageable. He does act within the boundaries of having a family to support first but, put it this way, only one of us in this family can spend like that. If I took on Ethan’s approach, we’d be bankrupt within a year. The thing I’m most put out about probably is that I really, really didn’t agree with the extravagant car purchase. I cried, I argued, I had sensible discussions with him, I even tried to guilt-trip him with references to holiday-less summers and no money to celebrate my 40^th birthday. We eventually reached a compromise and agreed that he would spend no more than £9000 on a car and even that pained me.

Then he came home with one that cost £11,500.

So, the car on the front drive has given me a happy, caring, cheerful, considerate, helpful husband for a while but the cost - apart from the money - is a feeling of betrayal and of my views and feelings not counting for much. Or at least not counting as much as having a fancy new car.

Aspergers and spending a night in their shoes

“Can I be really honest with you? I absolutely hated every minute of that party. I hated the awkward mingling in that room when we arrived with so many people crammed in. I didn’t recognise anyone and everyone was talking at once so I couldn’t hear what anyone was saying. I hated being squashed onto that table and having to think of things to talk about with the same few people for two hours. And I hated when the music started. That was the end of the night for me. I couldn’t hear what anyone was saying, I got fed up of saying pardon, I didn’t want to dance. I just hated it.”

These were Ethan’s words the morning after a 40^th birthday party last weekend. I know such things aren’t his cup of tea. I knew he was unlikely to enjoy himself (although every now and then there are social engagements that he enjoys - but he has to be in the mood and ideally there should only be one or two other people that he is speaking to at any one time, no interruptions between speakers and minimal background noise). I felt slightly nervous in the run up to this 40^th birthday party. It was going to be full of friends from school whom I hadn’t seen for years and I really wanted to enjoy it. I was worried that he’d be rude, disengaged, a miserable presence or that, even if he wasn’t any of these things, I’d be on edge all night waiting for one of these behaviours to manifest itself.

The fact is, he was none of these things. He chatted to people, he smiled, he even danced briefly when backed into a corner. He didn’t even moan privately to me (not even when I took too long to say goodbye to everyone and we missed our taxi home!). No-one, not even me, would have guessed how much he was hating it.

Amidst my demands for him to tow the party line, come along to events he hates and to SMILE and converse his way through them (mostly for my sake but also for his – when he’s made the effort, it does boost his self-esteem, he does feel more a part of things and it does lift his spirits, as long as he knows he can sit down by himself in a dark room afterwards!) – but amidst all this effort from him, I wonder if I would – if I do – do the same for him. Would I give up one of my precious evenings to play computer games with him if it would make him happy? I switch off if he starts talking camera-angles and lighting effects in films and I’ve never been to a technology show with him.

To be honest with myself, I suspect that, rather than meeting him in the middle, we meet ¾ of the way along, in my favour. Maybe immersing myself in something he likes and I hate for an evening would give me a valuable glimpse into his world. After all, it’s us who are meant to be good at adapting isn’t it?!

Living with Aspergers - two years after diagnosis

Had a rare time of Ethan opening up to me this weekend.

Managed to negotiate the myriad of obstacles that needed to be surmounted in order for Ethan and I to have a whole day and evening together in Manchester. We had afternoon tea, we looked round an art gallery, we drank cocktails - and it was during this part of the day that Ethan, relaxed, contemplative and, crucially, given the space and time to really talk, told me how it's feeling, at the moment, to be living with Aspergers. It changes, depending on what kind of mood he's in, how well he feels he's been coping with life, how tired he is. But one of the tensions between us recently has been how much he drinks - bottles of rum are disappearing fast, and none of it is down to me.

He told me that the only times he feels relaxed and comfortable in his own home is when he's had a drink - it helps relax him. Otherwise, he says, the mess and clutter and noise and kids, make him feel really stressed out. He can physically feel the stress, he says, building up inside him, and he either has to let it out by getting angry and irritated, shouting at the kids and being grumpy with me, or by drinking or watching TV on his computer (or preferably both) to dispel the stress. I'd been thinking lately, how well he's been coping with all the mess in the house brought about by lack of time, three kids and, to be honest, lack of inclination. Obviously not - he's just given up mentioning it, finding the solution instead in a tumbler full of rum. It's not good.

He also says that, although initially knowing that he'd got Aspergers had made things easier - since he now understood why he did the things he did, recently knowing has made things harder because he's so much more conscious of the way he is. Whereas before he might make a faux-pas or act insensitively, he'd be blissfully unaware of it. Now he's analysing everything he says and does - and knows when he's, in his words, 'been a bit weird'. Being constantly and publicly aware of your shortcomings every day and not really being able to do much about them, must be hard. And to top that off, he has a wife who, rather than offering comfort, points out how he's messed up and nags him about not caring. Seems he cares a lot more than I've given him credit for.

I do know, frequently and vocally, that it is hard for me to be married to someone with Aspergers, but it's equally as hard for Ethan - and so we need to help each other.

We've agreed that Ethan will only drink one of the days that he's off a week - I'm hoping he'll honour the agreement. I would write that I'll seriously undertake to do some tidying up but I know I won't. I barely have time to pee at the moment. The best I can promise is that, amid the mess and busyness of life, I'll make sure Ethan has his time to escape - with a cup of tea, not a glass of rum. 

Aspergers and 'mini Barcelonas'

Last weekend my husband (who has Asperger's Syndrome) took me on a surprise visit to Barcelona. I was going to write impulsive, whirlwind or last-minute, but it wasn't any of those things for him. For me it was all of the above - I knew nothing about it until the moment the taxi arrived to take us to the airport. He, on the other hand, had planned meticulously; down to the very last detail. He'd organised the kids to be looked after, he'd booked the (very swanky) hotel and specified which floor he wanted to be on and what direction the room should face, he'd specified the seats he wanted on the plane (in front of the engine makes for a smoother ride apparently) and he'd even booked ahead at a restaurant for the Saturday evening. He'd even, and this is starting to get a bit creepy, monitored my cycle so that he knew whether he needed to bring tampax or not!

It was a fabulous weekend. We got on brilliantly (it was actually me that was a bit grumpy at times. Despite his best efforts, Ethan was sadly out with his calculations - I was hugely premenstrual!), we were relaxed, we had time to talk and enjoy being together, we soaked up the atmosphere (and the cocktails), the sun shone. It was wonderful. The tensions started the moment we arrived back at Manchester Airport. Ethan was stressed that the taxi (that he'd pre-ordered, of course) wasn't there when we walked into the arrival lounge. He couldn't help but vent his frustration with the taxi driver when he did arrive, which put me on edge. Back at home, Ava was still up and excited to see us. Ethan was pleased to see her and jolly - up to a point. But when she was reluctant to go to bed half an hour later, the irritated version of him began to reappear.

The next day we were both back at work. We were again responsible for our three children, life got busy. Having been away from them for three days, the children seemed to annoy Ethan more quickly and more deeply than ever before. Ethan and I returned to our more normal state of arguing.

It seems that, if we can keep life at bay, Ethan and I can live as an NT/Aspergers couple no problem. When it's just me and him, most of the time, we're OK. It's when life gets in the way (work, responsibilities, other people, our kids) that things can get tricky. And since we can't spend our life in isolated bliss in Barcelona (actually, I think, given another day or two, we'd have started to get a bit fed up of each other!) our only alternative is to make life - with all its daily struggles, triumphs, challenges, hassles, people and duties - work. Of course, giving each other mini 'Barcelonas' (time locked in the office playing computer games for him, time out reading or with friends for me), helps. And, with Christmas just around the corner and the intensive time with lots of people that it brings, I think I'm going to consciously need to create those moments for Ethan if we are to get through it with good cheer. 

Lessons in Aspergers from Scowl the owl

"Does that hat really make you happy?" asked Scowl.

"Yes!" twittered the little bird.

"But what makes you happy, Scowl?" asked the other animals.

Scowl had a little think. "Being grumpy!" he said. "It's great fun!"

"Yippedy-doodah!" they all cried. "So we don't need to do anything to make you happy?"

"Well," said Scowl, "there is one thing that you could all do."

"What is it?" they asked eagerly.

"Flap off!" said Scowl. And they did.

This picture book spoke to me as the wife of someone with Aspergers as I read it to my four-year-old the other night. No prize for guessing who Scowl is in our family! 

In the book, Scowl is a grumpy owl whom all the other animals in the wood are trying to make happy. They sing to him, give him a happy hat, try to cuddle him. But through it all, Scowl just gets grumpier. Finally, when Scowl breaks the happy hat, one little bird out-grumps him and stops Scowl in his tracks, leading to the conversation above.

Now I'm not saying that Ethan should be allowed to wallow in his grumpiness all the time and, actually, he's getting better at being cheerful. But, when he is grumpy, what I've learnt is that trying to cajole him out of it, either by false cheer or by being cross with him, generally leads to more grumpiness. My instinct, when he's being miserable, is to criticise. But is it reasonable to expect Ethan, particularly Ethan, to be light and jolly all the time? I know I'm not. And I've not got Aspergers to deal with (well, I have, in a roundabout way but, you know what I mean). I think, subconsciously, because I know Ethan's prone to be a glass half empty kind of a guy, I try to jump on and quash the first sign of grumpiness in a bid to change him. But, for some of the time, I think Ethan might actually need to be grumpy. I think that maybe, being grumpy, or at least not being cheerful, is a kind of recharging process for Ethan. If left alone, he'll come out the other side better for it.

The message of the Scowl story, and one that I need to let take root and grow in me, is to let people be who they are. So, when Ethan wasn't clowning around with the other blokes wearing 80s wigs and striking rocker poses at that party the other week, I shouldn't have felt disappointed. I need to stop trying to squeeze him into my mould and allow him instead to be his unique self. 

That said, obviously we all need to make some effort to fit in to society, to be a friend, to be sociable and to make the effort even when we're feeling tired or grumpy, to be patient with the kids and to interact with their constant chatter when actually, we just want to be left alone. And that's the kind of selflessness that Ethan needs to work on. But, what I've learnt from the story of Scowl is that when it's appropriate, when the situation allows it, I should let Ethan be who he is - allow him to sink into his natural state of being for a while without being nagged to stop being miserable or unsociable. Maybe because he does make the effort (and it is a real effort) so much of the time, my job, when Ethan's having a moan, should be to let it flow over me and work its way out. To flap off rather than try to cheer him up, put him down or turn him around!

[Big bad owl, written by Steve Smallman, illustrated by Richard Watson and published by Little tiger]

Married to Aspergers and craving those moments of thoughtfulness

Feeling a little ashamed of myself today after yesterday's rant. In the calm light of day, Ethan's behaviour yesterday really doesn't seem that bad - quite laughable really, in a deranged, dark-humour kind of a way.

I do apologise to anyone hoping to find something enlightening, uplifting or helpful in my latest blog post and instead finding just a splurge of inexplicable rage and self-pity. If it helps at all, me being able to off-load onto the blog did mean that I didn't off-load (too much) onto Ethan which I'm very thankful for, particularly as this morning, I realise perhaps he's not quite the awful person I decided he was last night.

Anyway, apologies - you're all still wondering what the heck he did. And apologies again that this probably won't be the high-tension, shocking story you were probably expecting...

Yesterday was always going to be a tricky one to manage. It required me to pick up the kids from school, drop them in the after-school club, go to a PTA meeting, pick kids up (plus one extra), bring all four kids home and, in a forty-minute window, get them all fed and get two of them into Beavers uniforms and one of them into a Brownie uniform. By then Ethan should have been home at which point I would whizz Ava around a high school open evening (with Oliver in tow) for 45 minutes before dashing her to Brownies and, 90 minutes later, picking four Brownies up and dropping them all home. Ethan, for his part, had to get home from work on time, have a bite to eat and take the boys to Beavers where he was volunteering for the first time on a woodland walk.

A tight itinerary but possible - maybe it even could have been fun. However, events transpired against us (or am I being Aspergerised?! Always blaming outside events/people when things go wrong? Events  didn't transpire against us, we messed it up all by ourselves).

I pulled up in our driveway at 4.40pm to the happy sight of Ethan scowling at us. As I got out of the car he berated me for locking the porch door meaning he'd not been able to get into the house. Confused, I opened the porch door, he grabbed the bag he'd slung there ten hours earlier, extracted his car/house keys and marched back down the drive informing me on the way that the car was still at work because he'd forgotten his keys (he'd borrowed a work van to get home in case anyone's wondering) and that he'd be at least an hour and a half getting there and back for the third time that day.

"What about helping at Beavers?" I called after him?

"Well...." said Ethan, leaving the question hanging.

I wondered whether I should embark on re-arranging all Ethan's arrangements - apologising that we couldn't pick up the boy that Ethan was meant to be picking up, apologising to the Beaver leader that, unfortunately due to work commitments (ie Ethan being gormless) he wouldn't be able to help that night after all. I hung back, hoping and somehow even sensing, that it would be OK. I made tea for the kids, got the relevant uniforms on, found torches for the boys' Beaver walk, even made Ethan something to eat in the car on the way to Beavers (still trusting he'd be back in time). He arrived back at 6.16pm and managed to get to Beavers only around 5 minutes late. I took Ava to the high school thing, she had to miss Brownies as, due to me not being able to leave the boys with Ethan as I was meant to, we'd got too late to make both. After a quick dash around the high school we whizzed to pick up the other girls who had gone to Brownies to drop them all home. I also had to drop the bag that had been left at our house by the boy who'd come for tea. During the course of all this, I had a call from Ethan who, having completed the walk as a helper, was now stranded at the scout hut where they'd finished the walk with his car at the woods where they'd started the walk! It was dark and cold and he had two wet, muddy boys. To his credit, he handled the oversight well, in his usual very direct, very practical way. He did make a dig at me for 'volunteering him' to help in the first place when, in actual fact, he'd agreed wholeheartedly to it and was very keen at the time. However, I managed to keep a lid on my indignation. His survival tactics, conscious or not, when things go wrong seem to be to blame someone else.

But then we all got home. The kids were shattered - including poor old Oliver who had been dragged around with me and a selection of different girls until way past his bedtime. Ethan was spent as I can totally understand. He'd had an intense day at work, driven from Liverpool to Manchester, driven home from Manchester to Cheshire then back to Manchester then back to Cheshire, straight into a walk through the woods with dozens of small boys. But I was pretty shattered too, and still had to go back out to deliver some flowers to someone then had to do school-bags, lunchboxes, uniforms, feed the hamster, load the dishwasher and get the washing in - obviously I was hoping Ethan might do one or two of the evening's jobs. When I came down from getting Oliver and Ava into bed, Ethan was in the office, computer on, lights off, watching a programme. I couldn't help pointing out everything that I still had to do.

"And I haven't had any tea yet," I moaned. Having made it for everyone else, including Ethan, there hadn't been time for me to eat anything. I stomped out of the house to the sounds of Ethan still watching TV. But, and this is where I'd set myself up for a fall, as I walked into the front door ten minutes later, I could hear Ethan in the kitchen clattering pots around. 'Ah, I thought, he can be so lovely. He's obviously making me something to eat. That's so nice when he's shattered too and has had such a long day.' I entered the kitchen just as he was leaving it, with a big bowl of porridge and fresh fruit and a cup of tea - for himself. He walked past me, went back into the office, closed the door and pressed play on his programme!!

That's when the angry splurge spilt over onto my blog post yesterday...

...and that's a very long explanation of something that's kind of neither here nor there. But at the same time, it's those little attentions and moments of thoughtfulness that make a person feel loved, cherished, thought about. And that's what so often missing from our relationship - more and more so actually. Plus, I understood that him forgetting his keys was a complete accident and as annoying for him as it was for the rest of us, but it had implications on me and on Ava that meant her missing Brownies and hardly having any time at the high school open evening. It would just have been nice for him to throw out a casual sorry for being gormless. And on that note, is it an Aspergers thing that the most common-sense practices, such as checking you've got your keys, wallet and phone when you leave the house just don't happen in someone with Aspergers? But that's for the subject of a whole other post...

Aspergers, socialising and coming to blows in the car!

Ethan's saving grace is that he is gracious in defeat. He will accept when he's fallen short and take on board my analysis and advice. Without me being allowed to vent and point out his shortcomings and him listening to my take on things and being willing to just take my word for it sometimes, I don't think our marriage would survive.

I have found the last few days particularly hard. Sam captured the moment well at a BBQ we were at over the weekend: he was whizzing around with his camera snapping anything and everything (he takes after his father - I think it's something to do with preferring to be outside of the action rather than in it and being behind a camera allows them this). Anyway, he showed me his photos later and everyone was smiling, chatting and engaged - until we got to a photo of Ethan. The other men in the photo were in the throes of conversation - gesticulating and obviously participating in conversation. And then there was Ethan. He was standing just slightly too far away from the other two men in the photo, with his hands in his pockets and his mouth in a light frown. Maybe it's because I know, but he just oozed distance and detachment.

Later on, as the party got going the men, aided by the kids, discovered the dressing-up box. Within moments they'd dressed themselves as 80s rockers in shaggy wigs and fluffy leopard-print jackets! All except for Ethan who hung back awkwardly, conspicuous by his un-involvement. He was socially-aware enough to look over and smile but desperately unsure of what to do with himself beyond that! In the end, one of the guys took matters into his own hands and plonked a garish tartan wig on him, complete with wiry orange hair. Ethan's awkwardness was toe-curling! While the others struck rock star poses for the camera, Ethan hovered uncomfortably - hands still firmly in pockets and leg twitching incessantly as if desperate to make a run for it! It's not that I blame him for being an outsider in such a situation, I just wish, for his sake as well as mine, that he was able to engage with and enjoy social situations - that he could let himself go, be silly and have a laugh like everyone else, that I could relax in social situations rather than keeping check on how Ethan's doing and whether  he, or the people he's with, need rescuing.

Another area where we always come to blows is in the car. He's such a self-absorbed, inconsiderate, rude road-user. He sighs and swears and tuts and glares at other drivers for the slightest inconvenience (down to them just driving, in his opinion, too slowly). And yet he himself drives without the slightest consideration for anyone else. Today, as we pulled into a car-park, a lady was in the process of reversing into a space. Instead of staying put for a few seconds to allow her space - physically and mentally - to manoeuvre, he ploughed ahead, squeezing the car through a teeny gap that we just about fitted through, centimetres away from her reversing. When challenged (which, of course, is what I did) he claimed he was 'getting out of the way' of other cars. Personally I think his actions were nothing to do with making life easier for other drivers and everything to do with making life easier for him! He can't bear to have to wait, even a second, for anything or anyone.

All of this put together makes for a rather unattractive-sounding spouse. Add to that his complete lack of common-sense, his high irritation levels, his snoring and his middle-aged spread and I sometimes wonder how on earth I've ended up with him! And yet I have. And the longer I'm with him and the harder I try, the more I'm beginning to understand him. And the more I understand him, the more I realise that where he is now is so much better than where he was ten years ago. And it's gradually dawning on me that it takes huge amounts of effort and willpower and commitment for Ethan to connect and listen and engage and, sometimes, even to stick around in our large, chaotic family each day. And for that I love him. And so we keep on muddling through. 

Aspergers - and who needs to change?

Living well with Ethan's aspergers is as much about me changing as it is him.

I don't mean losing who I am or wearily giving into the way things are. But I do mean letting go of self-righteous anger and condescending rebuke - even when it feels justified. I mean nurturing a calm approach and actively reigning in my desire to react angrily when Ethan has let me down or is, frankly, being an idiot. I mean increasing my understanding and finding effective ways to handle disputes. I mean by accepting, sometimes, that I need to be the one to act like a grown-up, to take responsibility for not fuelling and heightening stress and, if needs be, sacrificing my right to 'be in a mood' so that he can be in his, come through the other side, and calm can be restored.

I don't mean to big myself up at all. It's all very well, in the tranquillity of this moment, to write all this. In reality, it's flipin' hard to do.

Take today for instance. I was going to be out during school pick-up time meaning Ethan needed to collect the kids. He was well briefed on the matter. I warned him the day before, told him again on the morning in question and made him sit down and focus whilst I went  through arrangements one last time before leaving the house. Ethan rolled his eyes at me.

A familiar sense of foreboding overcame me as I pulled up on the drive a couple of hours later to the sight of Ethan happily hacking at our front room wall (yes, the project lives on - it's good and bad. Good because it occupies him and bad because it occupies him...to the exclusion of everything else). School had finished fifteen minutes earlier and I couldn't see or, more to the point, hear the kids. As I walked through the door I knew my question was ridiculous but I hoped for the best.

"'Are you back from school already?"

 Ethan gasped, swore and scrambled for the car keys. This, my friends, is when my wise words and good intentions came tumbling down around me! A tiny part of me was desperately trying to hold onto that still, small voice telling me to be calm, not to shout, to employ understanding. But my carnal instincts won out.

"I don't believe it," I chastised, "I can't rely on you for anything."

"I know you can't," boomed Ethan as he stormed past me and slammed the front door.

For the next five minutes I battled inwardly between the desire to have a go at him and pity myself for having such a useless husband, or to make the conscious decision, despite the circumstances and my feelings (which are fickle companions) that I would try to understand, that I wouldn't overreact, that I wouldn't feel sorry for myself and that I wouldn't make everything  worse by attacking him any more than I already had.

It took huge resolve. Particularly as, when he got home with the kids, he snapped at Ava, shouted at me and then stomped into the front room, slamming the door closed. Everything in me wanted to burst into that room and tell him what a horrible person he was. To ask how he dare shout at all of us when he was in the wrong. But I'm learning through experience that such reactions just sink us both further into anger and resentment. By choosing to stay silent and keep away, I starved the furious feelings in us both of oxygen. I forced myself to chat with the kids, to engage in their days and to take my mind away from my frustration. The situation ceased to be so huge. And about half an hour later, having had time and space to 'come down', Ethan surfaced and apologised. I wasn't very gracious. I couldn't quite resist pointing out that he had acted like a s**t - not by forgetting to pick up the kids but by shouting at us all afterwards. But I said it calmly and packaged it in understanding ('I know you were absorbed in what you were doing') and, crucially, after the heat of the event itself. We listened to each other, hugged each other and started again - again.

As I wrote this blog entry, I'd just phoned Ethan to remind him to pick up Sam from karate at 6.30pm because, as well as learning  not to react angrily in the moment, I've also learnt that by micro-managing Ethan, I can avoid these situations arising. I need to tell him what to do, then remind him, then remind him again. There's no use getting frustrated, it's just the way it is. Some things, again I'm learning, I just need to accept and make the best of.