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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!