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Tuesday, 16 December 2014

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. 

Sunday, 30 November 2014

Distance makes the (Aspergers) heart fonder

Ethan's been away on a course for the past week.
I've genuinely missed him . It started out with me missing him for all the practical reasons - helping shoulder responsibility for three young kids from dawn 'til dusk, being able to leave two of the kids at home while I take the other one to his swimming lesson, etc. On the day that Oliver split his head open and I had to be in work, I really could have done with him being around.
However, as the week went on and I received tender, encouraging texts from him and he checked in with jolly phone calls to the kids, I started to miss him for other reasons. I looked forward to him coming home. He too, after a week of high sociability was looking forward to the sanctity of home. Except therein lay the problem: home is not the restful place with sweetly-playing cherubs that he'd built up in his mind while he was away.
When he got home, the first few hours were wonderful: he was involved and engaged with the kids and they, as a result, were pleased to see their dad and eager to please. I soaked in the luxury of not having to do bedtime and feeling part of a partnership again.
By the next day, his enthusiasm may have been waning slightly, but still he took the kids to the park whilst I caught up with work: all voluntarily and in good grace.
However, by the end of their excursion, his reserves of energy and engagement were definitely running dry. As teatime approached, the familiar irritation and aggression with the kids began to resurface. He was annoyed with Ava for talking too much. He snapped at the boys over the volume of their voices. And he sighed loudly at me when I came too close making a cup of tea while he was using the 'food preparation area'!

Reality bites. But maybe, Aspergers or not, we're all guilty of appreciating each other most from a distance!

Thursday, 20 November 2014

Aspergers and eating all the ice-cream

It's the little things that tip you over the edge.
I've never lived with another man so I genuinely don't know whether this is normal man behaviour or whether it's his Aspergers but he does it ALL the time and it really, really infuriates me.
I bought a tub of Ben and Jerry's peanut butter ice cream the other day because it was on offer and because I, yes I, wanted it. For once, I didn't buy it because the kids like it or because I thought he might but for me. Three nights ago, on one of my two evenings off this week, I had about six spoonfuls. And it was delicious.
Tonight, I've just emptied the recycling to see the empty tub in there. Ethan has polished off the remains of the tub (which was nearly all of it) in a single sitting.
I know it's only ice-cream but it's the principle of the thing. I can't buy anything nice for a treat without him eating the lot before I can get my hands (or mouth) on it. Not only is it incredibly selfish (I wonder whether it even enters his head, whilst he's scoffing the entire tub, that I might actually like to have some of it, or whether the thought does occur to him but he eats it anyway. I'm not sure which is worse, and he doesn't seem able to tell me what his thought process is). But it also shows a complete lack of self-discipline and control. He's meant to be on a diet. He has me cooking him carbohydrate-free meals every evening. And then he eats about 1000 calories in one go because he's not able to regulate himself.

It's pathetic. It might seem a small matter but I'm sick of him stealing all my treats. He justifies it (in his mind) by buying me some more. But the damage, by then, is done - I feel completely disregarded. Plus we've had to buy the item twice (no wonder we're always skint). I just don't get it. I would never, ever eat an entire large tub of Ben and Jerry's because I consider myself in a partnership. I would consider half of it as belonging to Ethan. His selfishness in this regard is eye-watering.  

Sunday, 9 November 2014

Aspergers: Disturber of the peace

On this Remembrance Sunday, I'm reminded of how fragile peace and harmony is, at home as well as in the world.
I came home from church - having led a lego re-enactment with the 4 and 5-year olds of the Christmas Day Truce. Ethan had taken our kids on the Remembrance Day parade. I'm always a little nervous about what I'll find on the other side of the front door when I've been absent for a while, but all was well. Ava was muted and rendered immobile by the magic of the Movie star planet website and, amazingly, the boys were playing - animatedly, cooperatively and imaginatively - together in the front room. In the context of peace reigning in the house, Ethan and I were chatting amicably. It was, my friends, a scene of domestic bliss.
Until Ethan decided to investigate what game the boys were playing. Within seconds the feelings of well-being in at least 4 out of the 5 of us were destroyed.
"Who's thrown this?" boomed Ethan. Then, not pausing long enough to let the boys reply, "No. You're not playing in here. Get out. Now. Now,"
All this to the backdrop of the boys protesting their innocence and trying to tell Ethan that they hadn't thrown anything. But it was useless. He wouldn't, or couldn't, listen.
I know without having to ask that the issue at the forefront of Ethan's mind, that had been determinedly niggling at him the whole time the boys were playing in the front room, was that his widescreen, HD, flat-screen TV was in there. along with his very expensive stereo surround, extra base speakers.
So never mind that the boys, for once, were playing brilliantly together. That they, in fact, hadn't thrown anything and that we were all enjoying the peace, electronic pieces of equipment take precedence over family relationships every time.
I blew up, of course, about the fact he hadn't even bothered to find out whether the boys had thrown anything or not (they hadn't) and the fact he just didn't listen to them when they tried to tell him this. Sam ran to his room crying in frustration, Oliver was left at a loose end. And another all too brief moment of family harmony was, once more, lost forever.

Thursday, 23 October 2014

Aspergers and letting people be who they are



Picture the scene...me running up the hill, pink toga fashioned out of a sheet flapping behind me, the imprint from a bejewelled headband implanted firmly on my forehead. I'm out of breath, red-cheeked and sweaty. I burst through our front door, hunt crazily for a piece of red cloth and spend the next 45 minutes stitching bits of red felt off-cuts together to create a sash. I dash back down to school, breakfast-less, to volunteer at my daughter’s Greek day. Ava appears, snaking along the corridor as part of a class-line, en route to the hall to make humous. “Ava,” I hiss as she passes, “I’ve made you a sash.”
This all came about due to the sight that greeted me an hour earlier when I arrived at school to volunteer, having turned Ava and myself into ancient Greeks and Sam into a superhero all before breakfast. I felt quite pleased with my creations, until I got to school. Suddenly Ava’s wraparound sheet, woven belt, laurel brooch and plaited hair looked woefully inadequate next to all of the afore-mentioned PLUS gold and red sashes, laurel headbands, embroided necklines...hence my mad dash home to at least create a sash for poor, under-dressed Ava.
“Nah. Thanks mum but it looks a bit weird,” came Ava’s reply. No amount of coaxing would persuade her to put it on. I twisted the sash around myself instead – it helped muffle the sound of my stomach rumbling!
Later, as I was in the hall tidying up from helping ten rowdy kids make pitta bread, humous, Greek salad and tzatziki, Sam appeared. He was halfway through a super-hero day. He looked conspicuously unsuperhero-like amongst a group of caped, masked and shiny peers. I sneaked over to him (good choice of words, since his chosen superhero persona was ‘the sneaker’!).
“Sam, where’s your cape and your eye-mask?” I asked. “Just a t-shirt with a big S on it doesn’t look very much like a superhero.”
“The cape’s broken,” came Sam’s reply “and the eye mask’s annoying.”
After a few minutes intensive pep-talk, I thought I’d persuaded Sam to at least tie the cape back on (that I’d been up until midnight making). However, emerging into the car-park next to the playground a couple of hours later, there was Sam, cape-less, crawling along (by himself) intensely focused on blowing a piece of rubbish across the ground. Around him boys were playing football, playing tig, chatting, USING THEIR CAPES to pretend to fly. Sam was oblivious to it all, focused, as he was, on that sole piece of rubbish. Not for the first time, I wondered whether there might be a bit of Ethan’s traits in him. Certainly, out of the three of them, he’s the child that’s least like me and most like Ethan.
But, getting onto the point of all this, because there is one...really! It occurred to me that, amidst all my striving to get the kids to wear what I think they should wear and my worries about Sam not interacting enough and Ava too much (that girl is never quiet!), I actually just need to relax. It doesn’t really matter whether they’re wearing a garish yellow cape or not, or whether people think the costumes I’ve created are any good. What matters is that they’re happy, that they’re secure, that they know they’re loved, and that we have fun together and accept each other. All the rest is packaging – to make us look attractive to the rest of the world. As I reminded myself of this in relation to the kids, I realised that I need to accept the same for Ethan. He’s never going to be a natural socialite, he’ll sometimes comes across as brusque and disengaged, he’ll always be inclined to get irritated easily by what seem like little things, he’s not going to suddenly become organised or remember that Sam is doing judo at the sports club this week and not the school hall (even though I’ve told him three times). Of course, sometimes it matters, temporarily, when Sam’s late for judo because Ethan’s been via the school hall, or when I’m criticising him in front of the kids because he’s shouting at them over something tiny. But, in the grand scheme of things, these little irritations don’t matter. They’re part of life, they’re part of who Ethan is and they’re part of who I am (because I know I could handle Ethan’s mini blow-ups and forgetfulness much better than I do). But, despite of all of these things, despite the fact our family is a chaotic and often noisy place, we all know we love each other and that we're doing our best. The next step, mainly for me, is to get better at accepting who we all are and letting each other be ourselves.

Tuesday, 21 October 2014

Aspergers and keeping busy

So sorry I've not been able to blog this week. Three costumes to make for school by Thursday (volunteered to help at Ava's Greek day only to discover that I need to dress myself up in a sheet-styled toga too!), working extra shifts, looking after a poorly Oliver and attending endless clinic visits with the two boys (speech therapy x2, hearing test, being fitted for support insoles). Anyway, boring - but the point is I'm just not getting chance to blog at the moment.
Ethan has been home the last two weekends and I'm realising, hard though he tries and lovely though he is, it really doesn't do to spend too much time together! When he first walks in the door from work he seems genuinely pleased to see us all (a bit too pleased sometimes as he swings the kids around and tickles them playfully whilst they just want to be left alone to play lego or watch nerds and monsters on TV). However, within half an hour or so, he's irritated. The kids are too noisy, one of them has not cleared up some mess that they've made and, once the initial tickle greeting is over (which I think he adopts because he's not sure what to say to them!) there's nothing left to do so he skulks off to the safety of his office. At which point I get annoyed that, after 10 minutes in our presence, he's hiding. I demand him to emerge only to get annoyed when he does emerge because he seems to make everyone more stressed!
He can't win, poor chap. And neither can I. Thank goodness he's got a job. Not sure how we'll fare when he retires!
But really, this isn't a blog post at all, just an apology and a overspill of random thoughts...

...will do better next time!

Monday, 13 October 2014

Aspergers Syndrome and being angry with the rain

At first read, I know, it may seem trifling. But it's precisely interchanges as 'unimportant' as this that, in some way, are the hardest thing to deal with because they're constant and depressing.
In I blustered, having just undertaken a very wet and windy school run. I was dripping wet - but cheerful, at least at first.
"They really need to sort out the drainage on Dobbin Lane," I chirped, wanting nothing more than a light-hearted 'blimey, I'm wet,' sort of a conversation. "The road's flooded the whole way down. If a car drives past the spray reaches half-way across the pavement. And if a bus drives by, you've got no chance - a tsunami of spray reaches from one side of the pavement to the other. A group of poor school kids got absolutely drenched."
Ethan's interest visibly rose at this point. It was nice to have him actually listen to me - it was the 'stopping what's he's doing and looking at me' kind of listening that I don't get very often.  Then he spoke. And the moment was ruined.
"The bus drivers are liable for that, you know," came his response. "They have to pay the dry-cleaning costs." The fact he even knew this was depressing. That insuppressible AS trait of having to find someone to blame, to be liable, even for the weather, made me want to cry.
I just wanted to indulge in a bit of jolly exasperation about the weather with my husband. I suppose I wanted Ethan to say something like "woah - you're soaked! I know, Dobbin Lane's a nightmare in the rain. Go and get changed. I'll make you a cup of tea." What I didn't want was to stand in my wet clothes discussing taking out a libel case against the bus driver, or to be instructed by Ethan to write to the council to complain. I just wanted a moment of shared humanity and eye-rolling over the extremes of the British weather. What I got was angry, defiant attack via me towards the world. It's that attitude, played out repeatedly, day after day, that can grind you down the most. It makes you feel pretty lonely, no matter how many friends you have, when you can't chat with your own husband.

While he writes the letter to the council, I'm going outside to splash in puddles!

Monday, 6 October 2014

Aspergers, connection and leaving our partners to it sometimes



I’ve been reminded again this weekend of the lifeline of having other people to talk to who are going through similar situations and living similar relationships.
Sitting around a table on Saturday with other NT partners, sharing our frustrations over what our Aspergic spouses had or hadn’t done, Ethan seemed almost normal – in an AS kind of a way! Hearing about the same traits playing out in other AS individuals and the same strains and issues this puts on families was, actually, hugely reassuring. It confirmed again (because I do need reminding) that Ethan does indeed have a distinct set of outlooks, characteristics and neural pathways that he’s been born with and that, to a certain extent, he’s limited by. It’s not just that he chooses to overreact, shut me out, aggravate the kids or become absorbed in himself by choice. Knowing that (that he’s not a git on purpose!) is a huge relief. Whether it’s through forums, chat rooms, support groups or more traditional friendships, the relief of comparing notes and laughing and crying together about both the ridiculous and heart-wrenching aspects of life with an AS spouse is wonderfully cathartic.
Ethan, for his part, has been holding the fort at home this weekend whilst I’ve had my fill of ‘therapy’. It took a bit of planning and organising on my part: making lists, suggesting ideas of what to do with the kids and leaving out Brownie/Beaver uniforms along with offerings for the harvest festival complete with sticky note reminding him of the time he had to be there. But it was so worth it. And Ethan rose admirably to the occasion. OK, the kids wanted to go swimming and they got soft play (where Ethan could sit in a corner with a coffee and his iphone), they watched lots of TV, Sam didn’t do his spellings and both he and Ava had nits when I returned (although I can hardly blame Ethan for that!). But they did make it to the harvest festival, Sam read the whole of his school book and Ethan even remembered to write it up in Sam’s reading record, Ava did her spellings and they all decorated gingerbread men (bought from Asda – Ethan drew the line at baking with them!) With me out of the picture, it seems, life was calmer. Without me interfering and passing judgment, Ethan had obviously felt more relaxed – free to do things his way. The kids had a weekend free of the tension that often exists between Ethan and I. They also, I’ve found, generally behave better when I’m not there – they’re less whingey, less demanding, less argumentative – as if they realise there’s no point going down that road with Ethan!
As soon as Ethan and the kids picked me up at the train station, chaos, noise and stress levels returned. The kids were all talking at once, they interrupted when I was speaking to Ethan, which made Ethan cross and, at bath-time later, Oliver screamed at Ethan whilst he was getting him out. Ethan immediately retaliated by shouting back, right in Oliver’s face, making me then get cross with Ethan which made Oliver moan more. How quickly life as normal resumed. There’s only one thing for it: I need to start planning my next trip away!

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!

Thursday, 28 August 2014

Are you receiving me? Aspergers and information gaps

Ethan has this infuriating trait. I don't know whether it's to do with Aspergers or whether it's just Ethan - maybe one of you readers can enlighten me? I suspect it's the former.
When he's verbally relaying something, he misses out big chunks of information - often the most crucial parts - without which his sentence doesn't make sense. For example, he'll come in from work with two boxes of biscuits and, when quizzed about their origin, will tell me that 50 per cent of the staff are couples. To which I'll reply "Which staff and why have they given you biscuits?" He'll look at me, brow furrowed in incomprehension and tell me "the staff at the biscuit factory." When I point out that he didn't mention he'd been to a biscuit factory, he'll swear that he did. The more I beg to differ, the more irritated he'll become.

A couple of weeks ago, when we were chatting with friends, he bought up the ice-bucket challenge. As is Ethan's trademark, he was moaning: criticising how many people were doing it, why they were doing it (just for show, according to Ethan), that celebrities were using it as a way to bolster support, etc, etc. I interrupted his rant to ask what the challenge actually was. Ethan, seeming annoyed by my interruption, dismissively told me, "you're meant to donate to a charity to do it" before launching back into his tirade. I persisted: "But what actually is it? What do you do?" "It's a challenge. People nominate you to do it," replied Ethan. (I think that herein lies the source of Ethan's problem with it - no-one had nominated him and no-one is likely to). I screeched with frustration: "What do you get nominated to do????"  At this point, a friend stepped in before I shattered, through sheer stress and strain, into a million tiny pieces, and explained that you get ice cold water thrown all over you. Ethan looked as exasperated with me as I felt with him. "That's why it's called the ice-bucket challenge," he said.

I don't know what causes it. My theory is that he's so focused on the particular point he's wanting to make, that he bypasses all additional information - however vital. And that if you ask a question that doesn't relate to what his mind's focussing on, his mind will translate it into something that does require the response he wants to make! Either that or, to him, the basic information is so, well, basic that, subconsciously, it doesn't even warrant needing to be said. I think that sometimes he'll forget that you, as the listener, don't have the basic framework of information that he is beginning his sentence from. In his mind, his thoughts have moved beyond paddling in the shallows to, by the time he articulates verbally, swimming in the deep sea - meanwhile you are still sunbathing on the beach!

Tuesday, 19 August 2014

Taking Aspergers on a day trip

Summer holidays with three young children is certainly helping Ethan's Aspergers to blossom!
We had a family day out to York on Saturday. Blimey - it was hard work! The blame can't all be heaped on Ethan and it wasn't all bad. But, in my dreamy depictions of a happy, jolly, family outing on a sunny summer's day, I'd underestimated what it meant to navigate crowded, unknown streets with three children and a husband with Aspergers Syndrome. Even the British weather let me down - August? It felt more like November.
The kids, of course, wanted to buy everything in every shop we passed - which was, on average, one every two seconds. They also oscillated between running off and wanting to be carried. Ethan, faced with the turmoil of not knowing where things were or what direction we should be walking in, battled all-consumingly with google maps - despite the fact we were surrounded by people we could have asked (which is what I did, in the end).
Ethan spent most of the day walking a few paces ahead of us - distancing himself from the chaos and the general mithering of the kids so that I had to keep summoning him back, like a dog to heel. Eventually I got fed up of being sole responsible parent. The children simultaneously talked, nagged, moaned and requested carries from me whilst Ethan, in blissful solitude, wandered ahead of us. I snapped and had it out with him - giving the street performers a run for their money in terms of entertaining passers-by. I should have put a hat out.
Ethan did try - as best he could. He obediently waited for us and tried to walk to our rhythm when I shouted him back, he held Oliver when I plonked him in his arms and he did his best, amid the noise and crowds and over-stimulation, to interact with the kids and respond to some of their relentless chatter and demands so that it didn't all fall to me. Always within a minute or two though, his good intentions would dissolve as reality or, more accurately his attempted escape from it, won out.
The kids, the crowds, the noise and the inability to get his bearings, I knew would be difficult for him. The new realisation that the day gave me was that he doesn't like ambling, wandering, pottering - whatever you like to call it. The whole concept is stressful to him. He needs to know where he's headed, to have a purpose to his journey. A hike in the countryside is fine- he knows that the whole purpose of the journey is the journey. But ambling in the shambles with no clearly defined purpose whilst having to avoid endless people coming the other way, is a whole different matter! The highlight of the day was when we were in the car - on a journey with a clearly defined purpose (going home) eating Mcdonalds drive-thru in the happy knowledge that, in two hours time, the kids would be in bed and we could crash in front of Saturday night TV!

For anyone wondering how 'the project's' coming on, by the way, we're down to floorboards and plaster in Ava's room. Ethan is working on it from dawn til dusk-  alone, unhindered - and he couldn't be more content!

Tuesday, 12 August 2014

Aspergers and 'having a project'

Feels rather petty and self-indulgent to be writing about the 'hardships' of living with Aspergers when such horrific events are unfolding in the world.
Also, I really don't feel that I can moan about Ethan recently (even though he is still demolishing all the nice food without a thought for saving any for me). Of course there have been moments when I wish he'd been more sociable, when he's sounded aggressive without meaning to and when he's worded things badly. But I'm learning to let some things go - for all of our sake's because, actually, Ethan really does have a big heart and he really does care and, most of the time, he really does try to be the best person he can be.
In fact, it's me that's been moody lately (I blame having three kids at home full-time!) - and Ethan has been very gracious about it and hasn't blasted me with all the criticism that I would probably have blasted him with if the boot had been on the other foot.
Ethan's upbeat spirit, despite it being the summer holidays, may be something to do with the fact he has a project to lose himself in: he's in the process of fitting sound insulation in the front room. It means loads of work, hassle and expense - all in a bid to block out the sound of the neighbours sneezing (personally, I quite like hearing sounds of life through the wall but Ethan can't bear it). Currently our office is stacked high with padded insulation boards and Ethan is spending many a happy hour scouring through forums in which like-minded people discuss the minutiae of plasterboards and fibre-putty.
But he's happy. His days have purpose. He has a practical mission to involve himself in. And that's when Ethan is at his best.

Sunday, 3 August 2014

Aspergers and time out

Sorry about the lack of blog...just back from a week camping in Devon (& Ethan and I are still speaking!) and now have relatives staying, plus kids on school holidays, plus my neice's wedding in a few days, plus still working & having to keep normal life ticking over. Normal service (& a new blog) will resume ASAP. In the meantime, am taking heart that the holiday brought some precious moments when Ethan was completely 'with us' and engaged. And he wasn't stressed or pre-occupied or irritable. He searched rock pools for baby crabs with Sam, played football with Oliver, made me breakfast and cuddled Ava and looked out to sea with her on the beach. It made me realise how different he can be when he's taken away from the stress & tiredness of work & the distractions of home, computer and TV.
He starts back at work tomorrow & I'm desperately hoping that this new relaxed, calmer, happier Ethan isn't lost.

Wednesday, 23 July 2014

Aspergers and shifting blame

I've not had to wait long for the boot to be on the other foot. And the way that Ethan and I both handled our mistakes has really brought home the differences between us and pinpointed the reason why I find Ethan's attitude so difficult.
Today, we'd planned for Ethan to take Sam to Legoland Discovery Centre after school - we'd been promising him it for ages and today we'd finally found a day that we could make it work. Before I left home to take Oliver out for the afternoon I reminded Ethan to take his wallet. On my way home with Oliver, I called Ethan to arrange where to meet him so that he could take the car - and I checked whether he'd got his wallet: 'Yes', came his rather irritated reply. Ten minutes later I met him at school as he was picking up Sam to go to Legoland. 'You have got your wallet, haven't you?' I shouted after him in what I hoped was a light-hearted tone whilst knowing that asking the same question three times is often necessary with Ethan. Ethan nodded, waved his hand dismissively and off he went.
Fifty minutes later, I got the phone call. As soon as I saw his name on the caller display, I felt my heart lurch. I'm generally on tenterhooks when Ethan's doing something with one of the kids, or out with friends - I'm hoping against hope that all will go well but bracing myself for something to go wrong. It also occurred to me, as the phone rang, that I automatically scan my brain for whether whatever the problem is could be something that I've caused. I've read about partners of people with Aspergers living with self-doubt and feeling that somehow they're responsible when things go wrong. I vowed to myself I wouldn't go down that road and I do fight my corner ferociously with Ethan but, subconsciously, I think I'm nearer to that point than I'd realised.
Anyway, the words I was greeted with, as I picked up the phone and said hello were "What time does Legoland close?" - no greeting, no small-talk. I get that, the phone-call is purely information-based. So, sticking to information, I asked the reason for his question. Sticking to his un-emotional, information-based approach, he announced: 'I've not got my wallet.' I was genuinely floored. Three times I'd asked him, three times he'd said yes. And yet he'd driven all the way to Legoland, forty minutes drive away, before actually checking whether he did indeed have his wallet. Massively annoying and frustrating to say the least - and I was thinking of poor Sam in a hot, sweaty car missing precious time in Legoland. But the worst part of the whole sorry episode came next. "That's why there's meant to be money in the car..." he started, referring to the change we keep in the car (there was £10 but not the £15 he needed). I knew exactly where he was going with this line - he's always moaning about me using money from the car and not replacing it. Perhaps a valid point. But what struck me, in that moment, was that exactly a week ago as I drove the car with its roof box into a multi-storey car park and cracked it from one side to the other, I phoned Ethan and the first thing I said was how sorry I was. I didn't blame him for putting the box on there two weeks before we went on holiday. I didn't blurt out 'I've knackered the roof box,' I said sorry. Whether it's down to Aspergers or being male, whenever he messes up, Ethan will always look for someone else to blame (and it's often me since I'm the nearest person to him - in every way). It's wearying to say the least. And frustrating and hurtful and destructive to self-esteem, certainly destructive to a healthy, happy relationship.
It all worked out - one hour, 36 miles, one argument and one revelation later than it would have taken had he just checked he'd got his wallet. And I now have a choice - to let resentment and disillusionment build or to try to help us both learn from this encounter about each other's feelings and needs. Whilst not taking responsibility for his mistakes, I'm sure there are lessons I can learn about how to support him more without turning into a doormat. I'm well aware that he is always supportive of me, sometimes in his own unique way. 
At the end of the day, it's not about a plastic box on a car roof or about plastic bricks in an over-priced warehouse - it's about the way we treat each other in the inevitable frustrations of life. 

Sunday, 20 July 2014

Aspergers - and keeping calm in a crisis

Drove into a multi-storey car park last week with a roof box on the top of the car. Trashed the roof box and got myself wedged in there, under a concrete beam, with no way of going forwards or backwards without smashing the roof box up even more.
I cried, of course, and phoned Ethan. He didn't come rushing to my rescue, even though he was at home, with a car, and an afternoon off work, so easily could have done. But neither did he shout at me, get stressed or tell me I was an idiot. He was, in fact, remarkably calm and nice about it, talking me through what I should do. Even saying (once he'd worked out that he could bodge the box back together again with duck tape and fibre-glass putty) that it was 'just a metal box'. This is the thing with Ethan. He can stomp out of the room, slam a door and sulk because Sam's pyjamas aren't where they're 'supposed' to be, but if I burn the house down he's amazingly calm and, if not supportive, then at least not accusatory. It's the little things that other people would barely notice that try his patience and cause multiple small eruptions.
I'm immensely grateful that Ethan can keep calm amidst an actual crisis, and that he doesn't berate me when I do something really stupid. But, actually, life's full of the 1,001 little things that go wrong rather than the occasional big disaster. And sometimes I feel I'd rather trade in one big explosion every now and again rather than the daily sighs, sulks and shut-outs that we all live with.
If you're wondering how I ever got out of the multi-storey by the way, a lovely old man and a rather attractive young man took pity on me as I struggled, through my tears, to try and remove the box from the roof of the car. They helped me get it down and then carried it to the roof of the car park as I drove and met them up there. Once free of the concrete beams, the box could be reunited with my car. The old guy's parting line to me as he drove away was: 'If your husband gives you a hard time, tell him he's crazy for leaving it on there!' Didn't go down the route of blaming Ethan for my mistake though - not sure which one of us would have been behaving more like the person with Aspergers then!