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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!