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Tuesday, 30 September 2014

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]

Friday, 26 September 2014

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...


Thursday, 25 September 2014

Sometimes, he's just a turd

What a turd that man can be.

Feel neglected & unappreciated in every sense possible. Hard to be understanding of his Aspergers & supportive of what he needs when what I need is so often overlooked or sacrificed because of his actions or because of what he 'needs' which seems to engulf the whole family. Bloody hard to love him today. Feeling dragged down & sick of trouble-shooting everything on my own. Realise I've not explained any of this & I'm sorry. Just too tired. Maybe next time...

Tuesday, 23 September 2014

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. 

Tuesday, 16 September 2014

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. 

Monday, 8 September 2014

Aspergers and having a focus

Ah - the double-edged sword that is Aspergers.
Ethan has decided - and I stress, he's decided. I've been going on about his middle-aged spread, unhealthy lifestyle and lack of self-control for years all to no avail. But suddenly, for no apparent reason, he's decided - that now is the time to act. He's on a mission to improve the state of the house and improve the state of himself. In true AS style, he is so determined, so focused - sometimes to the detriment of remembering or prioritising other things that he's meant to be doing - but it's good to see him doing something, motivated, alive rather than slumped in front of the TV or computer once the day is done.
I'm finding myself sometimes having to make three variations of dinner: one version (bland) for the kids, another version (slightly more exciting) for me and another version (minus the carbs, big on protein) for Ethan. Barely a slice of bread or single potato has passed his lips for weeks! Even more impressive, the ice-cream, chocolate, sweets and crisps all within daily site and easy access, haven't been touched. He's not drinking very much or very often. His usual self-gratification and lack of control have given way to a steely self-will.
The other great thing is that the bike that he bought at huge expense a few years ago which has hardly used for the last 24 months, is being used again. He's even found a like-minded friend to go cycling with. And his new-found purpose seems to be doing him good. Whether it's just that - having a purpose, or whether it's this new found friendship in a cycling partner that seems to be blossoming, or the benefits of exercise (which not only gives a release of endorphins but also, essentially, gives Ethan headspace away from chaotic family life) Ethan is easier to be with. I'd even go so far as to say he's pleasant to hang out with! He's got more energy, he's irritated less, he's interacting with the kids more and he's helping out more at home without moaning about it. The essential ingredient to this happy state lasting is that he gets time to focus on his tasks (right now he's happily measuring the front room wall ready for its destruction next week), that he's allowed to maintain his regime of bike rides, gym trips and plates of mackerel for dinner, that he feels supported in his quest.

What I've found in the past is that these phases do sooner or later, fizzle out...I'm praying that this one will last. 

Wednesday, 3 September 2014

Aspergers, communication and exasperation

Exasperated!!!
Perhaps it's just a male trait since Ethan's partner in the following situation played an equally bemusing role. Either way, I am sure if two women made an arrangement to go to the cinema one evening they would agree what time to meet. Surely, if one person had said to the other "I'll pick you up," the other person might have enquired as to what time.
Picture the situation. I'm trying to fly out of the door to take Ava and her friend to their first ever drama lesson (I'm hoping it will channel some of her excess dramatic flair!)The boys are both clambering at my legs, asking for drinks and whining that they don't want me to go - all the while Ethan is oblivious, on his iphone, doing whatever it is he still finds necessary to do, having been fiddling with it since he came in. As I'm peeling child number three off me and heading to the door, Ethan thinks to ask what time I'll be back. "About 7," I reply. "Well it better not be any later 'cos I'm going to the cinema," he informs me. The exasperation in me is building. "What time are you going? You need to tell me these things..."
"I don't know what time."
That cuts me short. The fact is that he didn't arrange the time with the person he's going with! All he knows is that the other person is doing the driving. For all we both knew, he could turn up to collect Ethan at any moment - perhaps when I was out with Ava at drama. And then what would he do? The uncertainty at least prompted action. Ethan looked up the cinema times and discovered that there wasn't a showing until 8.50pm. He'd been up since 4am. By the time he got home he would have been up for 20 hours and had to be up early again for work the next morning. Why didn't he think to look at the times at the time of arranging?!
We had a similar lack in communication/information-sharing the night before. Somebody was meant to be coming round to look at our front room with a view to plastering it for us. They said, by text, that they'd come 'tonight'. By 6.30pm they hadn't arrived and Ethan was getting stressed. Again, he'd been up since 4am and would be again the next day. After explaining to Ethan that tonight could mean any time up to around 9pm, I asked whether he'd informed the plasterer guy that he'd be going to bed at 8.30pm.
He hadn't, of course. Not only that but Ethan was adamant that he couldn't tell the guy that now at 6.30pm as 'it was too late.' Why? I just don't get it.
He seems to have a nervousness about informing people of things, about pinning details down, about communicating information - even the most basic - about himself. And he always texts. Never phones. That would be fine if his texts covered the information they need to - but they don't. It's frustrating when a quick phone call with proper information communicated fully would save a whole load of stress and uncertainty. Then again, I guess, for Ethan, that's cancelled out by the stress of actually having that necessary conversation in the first place - and getting it right.

So, for now, we continue muddling through and I remain exasperated!