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Thursday, 23 October 2014

Aspergers and letting people be who they are

Picture the 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...