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Thursday, 26 December 2013

Aspergers - adjusting and adapting

It's actually been a pretty good Christmas.
Yesterday Ethan managed to stay calm, sociable and jolly through a Christmas Day packed with people, noise and chaos.
What seemed to make the difference this year was a lot to do with me, I think. Not that I'm taking all the glory but I'm learning - slowly but surely, to accept Ethan's limitations and not to take the odd outburst or badly-phrased comment to heart.
On Christmas Eve I took the three kids to meet up with visiting family for the day while Ethan had an afternoon and evening of blissful solitude. Of course, it raised the question of why he'd not come, but it meant that, by Christmas Day, he was re-charged and ready for the onslaught of Christmas - safe in the knowledge that, by Boxing Day, it would just be our family again, the TV and the kids occupied by their Christmas presents (today's actually been the most stressful day yet - overtired kids and no outsiders to make us all behave but that's beside the point). The downtime beforehand meant that, on Christmas Day, Ethan felt able to throw himself into conversation, family games, present exchanges and church.
In years passed, I've felt that he's needed to be present at every family event - meaning he gets socially and emotionally and physically exhausted and shuts down part way through the season: I get embarrassed and frustrated and hurt and disappointed and tell him how he's spoiling everything which, in turn, sends him retreating further into himself. Meaning I get more embarrassed and hurt, etc etc.
A little adjustment of the event-planning and adapting of expectation and we're all happier. Forcing too much social time on him, I've discovered, is counter-productive to all concerned - it doesn't make for a happy time for me, him or the people we're supposed to be socialising with.
It's not easy - being solely responsible for my three loud, wriggling children in a church Christingle service or in other people's homes - but it's easier than having Ethan with us and me still feeling solely responsible because he's zoned our, or too overwhelmed to do anything other than shout at them, be too heavy-handed with them and make them cry.
I'm learning that I can depend on Ethan for all kinds of things such as putting a table football game together without any instructions, fixing the leaky sink in the bathroom and doing a good job of basting and carving the turkey. But, for other needs like laughing 'til my sides ached over ridiculous tomfoolery, keeping the kids engaged and happy, and enjoying good conversation, I generally have to rely on other people. And that's OK.
It's not all rosy, of course, but relationships rarely are - and we're a work in progress.
Yesterday Ethan even managed to just say nothing when he opened one of his more obscure gifts from a family member. His silence said it all, or course, but he didn't actually say what he was thinking. Believe me - that's a great step forward!

Monday, 23 December 2013

The difference between having Aspergers and just not being very nice


It’s sometimes a fine line. And before the diagnosis I spent a lot of my time thinking Ethan just wasn’t a very nice person. The fact he had no real friends confirmed it to me.
Still today there are times when I need to step back from everything and remind myself that he’s just wired differently to me, and that he doesn’t know how to put on the right impression and hide his thoughts like I do, and that situations I sail through, he stumbles through painfully – doing his best to reach the other side in one piece without having offended anyone.  
On Saturday night he went to the pub with some of the dads from school. He arrived home at about 10.30pm having left the pub without saying goodbye to anyone. He walked into the living room, collapsed on the sofa and moaned about the pub they’d gone to, then he moaned about someone that was there, then he moaned about what I was watching, then he moaned about one of the women on the programme I was watching for being too emotional, then he moaned about another of the women on the programme for not being emotional enough. At that point I sniped at him to please be quiet because he hadn’t stopped moaning since he walked in the door. He got up and went to bed.
The next afternoon we went on a family walk.  While I was slipping and sliding down a mud bank engaging with our kids and entering into the spirit of things, he stood at the top of the bank, hands in his pockets, watching the proceedings and occasionally shouting at the kids not to go in muddy puddles.
Later that evening, while I got the kids to bed, read to Ava, fed the hamster, got the snack ready for the morning and loaded the dishwasher before having to run out the door to work, he watched TV in the office. He’d assured me that he’d wrap some Christmas presents to lighten the load a bit – but he forgot and I was too irritated to remind him (just like he’d forgotten, the week before, to buy stamps even though I’d verbally asked him – and he’d agreed – had written it on a note for him and texted him to remind him).
At this moment, he’s been looking after the kids for a couple of hours – his kids, it’s not like he’s doing me any great favours – and, in the course of those two hours, Ethan has shouted pretty much constantly, Oliver has cried repeatedly, Ava has been sent to her room and Sam abandoned ship long ago and has been hiding out in his room. It’s so hard to feel we’re on an equal footing when so much of what he does ends in tears – mine or the kids. It’s easier, often, just to do everything myself – although then I feel bitter that I never get any downtime.
All of these things seem to present a pretty thoughtless, selfish, disengaged man. The difference now is that I understand why. And so does Ethan. So when I, calmly, point out that just leaving the pub without saying goodbye would be regarded as rude, he accepts that and texts the guy he went with to say sorry. I could have spent the walk on Sunday feeling resentful and annoyed (and, in the past, I would have done). Instead I dumped Oliver with Ethan and ran off with the other two so that Ethan would be forced to interact: and he rose to the occasion. And (because, of course, I couldn’t keep my frustration in and had a quick rant before I left for work) when I arrived home last night, Ethan had hung out all of the washing, unloaded the dishwasher and left me a nice note thanking me for everything I do.
It’s not that Ethan isn’t a nice person-it’s just that his niceness needs constant prompting and wheedling out. Just off to sort out the latest bout of arguments...Happy Christmas everyone!

Wednesday, 18 December 2013

Festive family life: Aspergers-style




'tis the season to be jolly...could somebody please tell that to Ethan?!
He can be so miserable. We, his family, seem to bring out the worst in him. But I think that's just because we're here and therefore demand some interaction. Left to his own company and his computer or a film, he's happy as Larry. But, the fact is, he does have a family - and a fairly large one at that. And I know that having three young children zaps a lot of our energy and grown-up time and, quite frankly, that living with a 3, a 5 and an 8-year-old can be excruciatingly annoying and frustrating. But we, together, decided to have three kids and, I'm sorry but, Aspergers or not, together we need to bring them up.
Last weekend in the car, Ava mentioned her Christmas concert at school and asked if we would both go (Ethan happened to be off work that day). As I began to gush 'Of course, darling, we're looking forward to it,' Ethan's simultaneous response was 'I've already seen you sing. I don't need to come, do I?' Apart from the fact that this was something different, even if it was a repeat performance, his only daughter, his little ray of sunshine, wanted her mum and dad together to watch her sparkling school performance! How her little face dropped as Ethan nit-picked with me about whether it was really necessary for him to come again.
This followed on from a few days earlier when Sam melted my heart after a Wii session with Ethan by asking me 'Why does daddy always shout at me when I do it wrong? I don't shout at him when he does it wrong.'
And then to top it all, yesterday he phoned me from town to get clarification on what type of earrings I wanted for Christmas. When I explained the type I wanted and where he could get them from, his answer was that the particular shop I'd mentioned 'wasn't accessible'. It was actually a couple of stops on the tram from where he works and, when I laboured the point (because, despite my best efforts, I'm not one to swallow my frustrations) he admitted that he couldn't handle the crowds and the noise and the chaos and the general effort of going into a city centre. Fine - it's only a pair of earrings and I can get them myself. It's just that, more than the earrings, if he'd have tackled the bright lights of the big city - just for half an hour - for my sake, those earrings would have represented that he loves me more than he hates crowded, noisy spaces. A notion, it seems, that is lost on Ethan.
Maybe I'm being selfish and asking too much. Maybe every dad wishes he could find a way to wheedle out of his child's school Christmas concert - it's just that not every dad would admit it, or worse still, verbalise it in front of his child. And maybe every dad gets a bit het up over some aspect of his son's performance - whether it's shouting from the sidelines of a football pitch or from the edge of a sofa in front of a Wii. And in so many ways, Ethan is such a great dad and such a great husband - supportive, constant, faithful, hard-working, loyal...it'd just be nice, every now and again, to be able to add cheerful, light-hearted and considerate to the list too.  
Jolly would just be asking too much.


Wednesday, 11 December 2013

Aspergers and Facebook: the perfect pairing!

It was great to hear ASCs being discussed so widely in the media on Monday following Susan Boyle's revelation (that wasn't particularly surprising) that she's been diagnosed with Aspergers.
So many feelings and experiences that people spoke about resonated with Ethan and I - particularly the relief that people felt after a diagnosis. How that one confirmation had given an explanation to  so many feelings and behaviours and how, armed with knowledge, people could begin seeking advice and support and come up with strategies for getting the best out of life. For me, the diagnosis  was also a turning point in reassuring me that I wasn't married to a willingly rude, insensitive, uncommunicative man but to a man trying amazingly hard and doing amazingly well to be the best husband and dad he could be in a world that is confusing and overwhelming and exhausting all of the time. Also, the lack of support people spoke about, particularly for adults with Aspergers, was something that we related to. What wasn't mentioned was the lack of support for neuro-typical partners of people with an Autism Spectrum Condition. These are often the people holding it all together - supporting the person on the spectrum as well, often, as managing other people's expectations including children's. I wonder if, with support, more Asperger/neuro-typical partnerships could survive and even thrive.  
The discussions and phone-ins I heard on the radio also highlighted something I hadn't thought about before: the appeal to many with Aspergers of the social media. The amount of time that Ethan spends on Facebook and Twitter (and just generally on the Internet) has long been a source of strife between us. Having worked all day within the field of media, he'll come home and immediately grab the ipad. He'll have one eye on Facebook (if he can get away with it) whilst reading the boys their bedtime story. Despite the fact that he's surrounded by four real-life people willing, able and wanting to interact with him face-to-face (and maybe because of it) - he'll chose instead to engage with faceless people online. I've nagged and pleaded with Ethan for years to spend less time online and more time with real people. I've even, inadvertently, got the kids on board so that they'll shrill out  'Mummy - daddy's on the iphone' whenever he attempts to have a sneaky look when he's supposed to be doing something with them!  But nothing's changed. In fact, as the social media world grows so, it seems, does its grip on Ethan.
The comment was kind of made in passing on the radio on Monday that, of course, people on the spectrum enjoy social media because it takes away the intensity of the person standing in front of them, it allows time for the person with autism to process what's being said, it minimises misunderstandings over tone of voice and facial expression. In short - it creates an equal playing field on which people with autism can communicate with others. And, in Ethan's case, I think it helps him to feel connected and normal and as though he's got friends. And I know that, in a sense, this is a kind of friendship -but on a fairly superficial, artificial level. I find it all pretty unsatisfying but it seems, this is just what Ethan needs and at the level he can handle. And I guess cyber communication is better than no communication. So I'm trying not to nag quite so much, not to sigh quite so loudly, and not to pointedly look over his shoulder when he's chilling with the ipad. I might draw the line if he starts messaging me on Facebook over dinner though!

Next time: How my partner's Aspergers Syndrome affects the kids: part 2

Wednesday, 4 December 2013

How my husbands Aspergers affects the kids: part 1

Two food obsessions of my aspergers husband collided this morning:
1) his obsession with the kids having enough milk-namely drinking all the milk in their cereal bowls.
2) his obsession with their bowls/plates having to be absolutely scraped clean of food before they can officially be declared 'finished'.
Ava, in particular, struggles against Ethan's regime - partly because of her age and the need to assert her own choices and partly because she isn't keen on milk. This morning, Ethan was in charge of breakfast. It took about three minutes for the whinging, shouting and all-out wailing to start. Ava didn't like the cereal Ethan had given her, then she didn't want to drink the milk (I'm with her-the slightly sweetened, mushy milk left in your bowl when you've finished your cereal is pretty unpleasant). Ethan, of course, was laying down the law and, when Ava stepped out of the kitchen to pop to the loo, he poured more milk into her bowl. Understandably she was incensed at the injustice of it all - hence the shouting and wailing. Which had the effect of Ethan telling her she'd lost her advent calendar for today. She came upstairs a sobbing, snotty mess to seek solace in me.
I've been trying really hard lately not to criticise Ethan in front of the kids - in fact, to lay off the criticism generally, but I couldn't keep quiet on this one. What made me extra infuriated was that Ethan missed out the bit about pouring extra milk in Ava's bowl in his account of what happened. I discovered this later from Ava. Apart from his obsession with the kids having enough milk (& they have plenty) Ethan's incredibly high requirement for bowls/plates to be spotless, meant that he considered Ava to be lying when she said she'd had her milk and there was still a trickle left in her bowl. His response to this and to the fact he didn't consider her to have had enough milk in the first place was to pour more in.
Having to step into tussles such as this one and sort out expectations, arguments and frustrations between the kids is one thing, but when my husband is part of the problem and has to receive the same treatment as the kids (being cross with him, explaining to him why what he's done has caused upset) it chips away at the husband/wife relationship we have. It's hard to feel attraction and respect for a man you've just had to tell off and whose actions dumbfound you at best, massively disappoint or anger you at worst.
There are times when he can be so lovely and so considerate but it does seem like these times are becoming more fleeting while the indulgences in his eccentricities and flares of anger and irritation are increasing in line with the kids growing older and pulling against us. Doesn't bode well for the next ten years...

Tuesday, 26 November 2013

Aspergers and gaps in communication



I, in fact we, came close to throwing in the towel this weekend. Let me just say, for the record, it is so hard to be in an Aspergers/neurotypical partnership – for both of us! We cling on by the skin of our teeth and crawl forwards with gritty determination. Not because we feel like it, a lot of the time, but because we’ve committed ourselves to each other: and because we’ve got three small children who need us to be together. And because, to be frank, although struggling through together is pretty grim quite a lot of the time, the alternative would be worse, I think. We’d be poorer, if not emotionally then definitely financially. In fact, I’m not sure how we’d do it. And we’d both be miserable and feel we’d failed and, although I push Ethan to his limits a lot of the time, I think, without me and the kids, he would let his Aspergers get the better of him and lead a pretty lonely life.
Our major problem I’d say, if I had to pick one issue out, is communication. How we both do (or don’t) communicate – in our words as well as in what we don’t say, in our tone and in our expressions.
I spend most of my time feeling that Ethan is disapproving or grumpy, as I’ve mentioned before. Largely because the natural relaxed state of his face is a frown. He seems to find it very difficult to smile– even when he’s happy. I’d settle for neutral but even that evades him. Secondly, he misses out great chunks of essential information when he communicates a message. What his head is thinking isn’t what comes out. Take Saturday morning, and part two of the helium balloon saga (those bloody balloons have caused nothing but trouble!)...
Ethan had got the kids to write messages on a piece of paper that he’d tied to a helium balloon and was going to set free in the garden. Sam had been griping about not wanting to let the balloon go, largely ignored by Ethan, but went along with writing his part of the message anyway. As they headed outside, Sam piped up again that he really didn’t want to let the balloon go. So Ethan said, ‘You don’t have to let it go.’ Sam instantly calmed down. All was peaceful until, ten seconds later Ethan, along with Ava and Oliver, let the balloon go. Sam started wailing and ran inside – not only upset that this balloon was gone forever but also that, from his point of view, daddy had outright lied to him. I, being me, marched out and challenged Ethan in front of the kids, as he was trying to enjoy a ‘moment’ with Ava and Oliver. From his point of view, I ruined his moment and he felt unduly criticised and belittled by me in front of the kids. He couldn’t understand what the issue was. Sam always acted like that, according to Ethan. And he’d told him, quite plainly, that he didn’t have to let the balloon go. Ava and Oliver could do it.’ Only the problem was that he hadn’t added on ‘Ava and Oliver can do it.’ He’d stopped at ‘You don’t have to let the balloon go.’ Which, to Sam’s mind (as would be the case with most kids – if not adults too) meant that the balloon was safe. Ethan didn’t get it – AND SMIRKED: which sent my irritation levels through the roof. I told him to stop smirking. He told me he wasn’t smirking (he truly didn’t realise that he was. Apparently inappropriate reactions – such as laughing when someone dies (or loses their balloon!) – are quite common from people with Aspergers). He followed this by telling me to shut up and stay away from him and stormed out of the house, slamming the door as he went.
Ava then joined in the wailing and told Oliver and Sam that mum and dad were going to get a divorce and that they wouldn’t see daddy anymore. Cue three wailing kids.
Ethan stayed out all day – he only came back at 9pm because I had to work.  During the course of the day both of us contemplated the possibility of separating. And the kids definitely contemplated it! But, as always, when tensions and frustrations calmed down, we managed to talk things through, and we struggle on. Because, despite the arguments, the kids are better with us together and because in different ways, and for different reasons, we need each other. I’ve gone back to the Asperger’s books – I still know so little about the Syndrome. And life goes on.

Tuesday, 19 November 2013

Aspergers and miscommunication or Why my Aspergers husband always sounds irritable part 2!



A few days ago I decided that this week’s blog entry should be something positive – about how hard Ethan works to support us, his family. About how difficult it must be for someone with Aspergers to keep up with an emotional wife who keeps organising social occasions and three chaotic, noisy children. Never mind the stressful, demanding job he does that requires him to be sociable and put other people at their ease all day.
But then Sunday and today happened. And the positivity drained away. It boils down to the number one gripe/obstacle/bone of contention in our relationship: the way he communicates. Today, a misplaced wheelie bin was enough to make him sound like he hated me: ‘What did you do with the bin last night?’ he barked at me from the bottom of our driveway this morning amidst the steady stream of mums (all of whom I knew) winding their way down our lane to school with their offspring all looking over to see what the angry shouts were about.
And on Sunday, the effort and tension of holding it all together for nearly four hours while we had guests broke the moment they left. ‘No, we’re not doing the balloons,’ he bawled to a sobbing Ava,  whom earlier he’d whipped into an excited frenzy with promises of releasing a helium balloon into the night sky. ‘It’s too late. You’re going to bed.’ Never mind that he’d promised the kids they could release their balloons that night. Never mind that they were, obviously, disappointed. If he’d just said, ‘Aw, sorry darling. It’s got really late tonight. We’ll definitely do it tomorrow,’ the great heaving sobs from Ava, the ensuing argument between me and him and an evening of not speaking could probably have been avoided. 
But then, this afternoon, thankfully, despite the tricky start, we’re coming full circle back to positivity. When I got back from work I, calmly, explained how damaging it was to our relationship, and to the kids, to be shouted at so aggressively all the time over every slight irritation (our wheelie bin being returned next door by the bin men, Oliver spilling his drink, Ava leaving her clarinet at school, me leaving notes to myself on the kitchen side that get in his way). Ethan came up with the usual explanations – he was simply trying to make himself heard (my counter argument: volume doesn’t have to equal aggressive tone) – he didn’t feel aggressive, that’s not how he meant it (my counter argument: that’s how he sounded. So it’s kind of irrelevant what he meant because aggression and irritation are what he conveyed, whether he meant to or not) - he doesn’t mean to speak like that (my counter argument: that he manages to speak pleasantly to other people so he must know the difference and be able to control how he comes across).
Once all the arguments and counter arguments had been exhausted, he apologised, he got it (at least he says he did) and he thanked me for pointing it out.
I could have come home and blasted him with disapproval, disappointment, disdain and countless other dis’s. A few years ago that’s what I would have done before shutting him out of my world. I’m glad that I too am starting to change and adapt to the challenges we face. I’m glad I chose to talk. I know it won’t solve the problem overnight: he’ll probably speak to me the same way tomorrow. But perhaps, with my support, he won’t be quite so aggressive quite so often.
And, knowing that I’m writing about his failings on this blog, he’s still just brought me a cup of tea and a smile. And this morning, while I was working, he washed the kitchen floor unasked.  So it’s not all bad!

Wednesday, 6 November 2013

Why can't my Aspergers husband control his spending?

I saw it as I was unpacking the Sainsbury's Basic range of shopping I'd just bought on my way home from the job I squeeze in in-between everything else in life to try and slightly claw back our rising debt (resulting entirely from purchases that  Ethan has made over the last twelve months). There it was lying on the kitchen floor: the tell-tale empty John Lewis carrier bag (it hadn't even occurred to him to hide the evidence).
Thankfully this was a day that all three kids were at school and pre-school so I could wade right in and  confront him with it. What top quality purchase had he been making whilst I, at his request, had been desperately trying to shave a few pence off our weekly grocery shop? The answer: two fine Egyptian cotton towels...to go with the set of six he bought eighteen months ago when we first moved in.  Which, in turn, bolstered the eight or so random collection of towels we already owned. And why did he feel we needed to extend our towel collection? Because he wanted some towels that could be his and his alone - that would be untarnished by the kids, that wouldn't make the weekly trip to swimming lessons and back, that would always remain soft and clean and colour-coded (his = light brown, the rest of the family's = dark brown). Never mind that this completely unnecessary purchase was made with money that we didn't have, that he was completely going back on his word not to make any more purchases for himself and that, in that one selfish purchase, he had spent a third of the weekly salary that I was working my guts out to earn in order to make at least a slight reduction to our overdraft.
I was steaming mad.
A fortnight before it had been a new pillowcase (yes - Egyptian cotton again) and he'd sworn that would be his last purchase. I'm bracing myself for the Egyptian cotton tea-towels that I feel sure will follow...
Call me unsympathetic but, Aspergers or not, these are luxuries that we cannot afford and that Ethan can surely do without. I understand that he likes the feel of certain fabrics, that he doesn't like to share towels and that he gets a bit anxious about the quality of cotton that he lays his head on. But hey - I would dearly love to have Oliver in pre-school for an extra half a day a week so I can actually have time to write, I'm anxious about my grey roots showing and a colour from a hairdresser instead of out of a box would greatly improve my self-esteem. But I know that we can't afford these things - and that it would be selfish of me to spend money we haven't got on things that would only benefit me. So I don't buy them. Ethan either doesn't have this ability to reason, think of the family as a whole and make do, or he doesn't care.

Either way, I'm off to bed - in my Sainsbury's pyjamas to rest my head on my Ikea pillow. And I'm sure I'll sleep just as soundly as Ethan on his 'superior' products - more soundly in fact, as I'll have the smug glow of self-sacrifice. 

Tuesday, 29 October 2013

Aspergers, glamping and managing the flare-ups

Given that it was the end of October and we've got three kids, rather than camp, we made the decision to glamp last week for half-term (yes, I know, a cottage would have been an even better idea - but double the cost).  A tent already set up for us on arrival, a proper bed to sleep in, heater included: it sounded perfect.
Oliver threw up before we even got there - all over himself, his car seat, the floor and his (screaming) sister. The rest of the holiday, any time we went out in the car it had to be with all the windows open so that the high-speed chilly October wind just slightly lessened the smell of sick and made the journey bearable! And, of course, there were the usual 5am calls for a wee (even a glamping tent can't get around that) and Ava spent most of every night shrieking as what felt like gale-force wind blew the canvas in and out around us and made the tea-light chandelier shake precariously above our heads!
However,  it was the reaction of Ethan to being in a confined space that was unfamiliar and out of his control, with three hyperactive kids that I (perhaps naively ) hadn't expected. We've camped before, but in our own tent that he spends hours erecting and then arranging the insides of. There are separate compartments for the kids and us, and he's in control of his surroundings. In our glamping tent all five of us were squeezed into one space. There was no-where in which to escape. The 'glamorous' touches such as the tea-light chandelier and the heater became objects of stress as the kids bounded around on the bed almost head-butting the glass holders of the chandelier and falling into the heater. It was too much for Ethan. He had his first explosion shortly after arriving in the tent. Yelling at the kids to stop yelling (!), yanking Oliver off the bed and putting him in an impromptu 'naughty' corner within moments of  arriving in the tent, telling Ava she was annoying as she darted into the tent to explore every nook and cranny without taking her shoes off first, and pushing Sam away too hard so that he fell over in the mud.
Those first couple of hours after arriving, my heart sank as I struggled to see how we would get through the next four days, let alone enjoy them. I angrily reacted to Ethan's anger and frustration by telling him that he was ruining our holiday and why didn't he go and check himself into a Travelodge and leave us to it, we'd have a better time without him. The kids were all crying. It all felt far from glamorous.
I took myself to the toilet block to calm down (it became our unlikely retreat zone!) and realised I had two choices. To rant and kick against Ethan's attitude and so make everything worse, for everyone. Or to try to understand him and do what I could to calm the situation and help him cope - even though, right then I just wanted to attack him. By the time I'd got back, things were calmer. I spoke to Ethan outside the tent - I listened to why he was struggling, we made a plan for how we would address these things, he promised to try and be calmer and more patient with the kids, I took the kids to the cooking barn and gave him some time out. We both agreed we'd put a film on for the kids after tea!

And things got better. For the rest of the holiday Ethan was, on the whole, a delight (in fact calmer than me at times). I think that, in the past few months, I've became quicker to forgive and move on. I've tried to understand more, and I've not built things up to be more than what they are because, very often, Ethan flares up quickly but rights himself quickly too. And I've discovered that by supporting him with his anger, frustration and stress, rather than accusing him over it and trying to change him, he's beginning to change himself. 

Monday, 21 October 2013

Do you need to have Aspergers to appreciate The Big Bang Theory?



Just caught Ethan sneaking in another episode of The Big Bang Theory while he was meant to be in the throes of tidying the boys' room with them (while I tidied Ava's with her, I might add - and I definitely had the harder task due to both the room and the child!).
He has very quickly become completely addicted to the sitcom - he's like a junkie having to squeeze in a quick fix before embarking on the kids' bedtime or cooking the tea (I know - I should be grateful he does these things in the first place...). But that's Ethan all over - he doesn't do anything in moderation. He'll eat a whole family size tub of Ben and Jerry's while he absent-mindedly watches TV (probably back-to-back episodes of The Big Bang Theory!), a couple of years ago he decided he wanted to get into cycling and bought not one but two new bikes (and he's barely used either), when he thought he had a problem with alcohol a couple of years ago, he enrolled in AA, bought the book (roughly the same size as a Bible) and read it insatiably.
Right now it's The Big Bang Theory that's dominating his life- it's a TV programme, so that already rates it high on Ethan's pleasure list. Secondly, in his words, 'it makes him not feel so alone' - he's aware that the characters aren't real, of course. But the fact that someone out there knows all about the mental and behavioural make-up of a person with Asperger Syndrome and has reflected this for the world to see, helps Ethan feel that he's, in a way, 'normal' - at least normal for a person with Aspergers. And, although he says that there are the odd moments in the programme that make him feel pretty depressed (when the guy with Aspergers offends someone or when other people misunderstand him) for the most part, it does Ethan good to laugh at some of the, admittedly more extreme, characteristics of Aspergers. It would probably do us both good - except that, the one episode I watched, in consolidation with Ethan, I found, erm, well,  irritating: not funny - it didn't even muster a smile, I actually found it quite dull, in an irritating kind of a way. But maybe that's because I've not got Asperger Syndrome and so I'm not relating to it - I'm one of those people in the sitcom who misunderstand the central player.

I'll give another episode a go (it is meant to be the most watched sitcom currently) so perhaps my episode was a dud, or I'm missing something. Maybe, the more I watch, the more I'll begin to understand Aspergers and Ethan. If nothing else, it's something to do together. And, if I can't beat him, I may as well join him!

Tuesday, 15 October 2013

Aspergers, family life and compromises






I’m pondering, as I look out at our Autumnal garden - with the odd geranium trying desperately to hang onto life - to what extent I should try and force Ethan to fit into our family mould, and when I should just accept that he doesn’t.
My thoughts have been prompted by Saturday night. By sheer fluke, for the first time in months, I wasn’t working. By even more of a fluke, Ethan was off work all weekend too. And just to top off the flukes, there was actually something going on (beyond Strictly on the telly). There was a charity quiz night at the local church hall. Friends happened to be free that night and so we booked a table for four adults and six kids and I, for one, was looking forward to relaxing, having fun and spending time with friends and family.
As we arrived, I felt Ethan recoil. The big, echoing church hall was packed with people, noise, activity, a fuzzy PA system and fluorescent lights. Ethan did his best to make conversation but everything was against him: he was competing not only with background noise but also with questions being blasted out by the quiz master so that his uncertainty about when and how to start and end conversation became even more magnified. Anyway, with his subconscious mind tuning in to all the sounds around him, he found it impossible to even hear, let alone process, what any one person was saying to him. Add to the mix three hungry, over-tired kids and a quiz master jumping around from one thing to another and then back again, with people shouting out and breaking up the order all over the place, and Ethan was, in his words, ‘in hell’.
As Ethan always does, he did his best. He stuck it out for 2.5 hours uncomplaining, trying to communicate at least with the people we’d come with even if he didn’t move from his chair all night. As the night drew on, we agreed we’d go at the end of Bingo but, as Bingo finished the announcement came that the answers were about to be given to the children’s quiz. I, unthinkingly, said to Ethan that we’d just stay for that. But Ethan, having a firm and agreed point of departure marked in his head, could not shift from it. Nor could he take any more of the noise and chaos. He told me firmly ‘we need to go’. I, having had a few red wines and poised to mark Sam’s quiz with him, said that we’d go after the answers to the quiz. Ethan stood up, agitated, and said more frantically that he needed to go, and started putting Oliver’s coat on. I, still with the wine flowing through my veins, said he was making a scene and could he please sit down while we marked the quiz. He refused. People were looking I, despite the wine, began to feel embarrassed. Ethan took matters into his own hands, picked up Oliver, firmly grabbed Sam’s hand and started walking them to the door (with Sam in tears). We had an argument at the door of the church hall. I swore and told him he'd spoilt the night. He stomped off with Oliver, leaving me, a crying Sam and Ava goodness knows where. As I walked home with the kids, five minutes later, I felt a bit remorseful. The night was everything that Ethan finds difficult. Had Ethan been an Autistic child, I would never had subjected him to the noise, chaos and over-stimulation. The fact that Ethan stuck out so much of the evening with good grace and did his best for the sake of us, his family, should have been repaid with my understanding and grace when the time came when he could take no more. I wondered whether I was wrong to expect Ethan to even go to such events. But I don’t think so. We’re a family and we all, to a certain extent, need to do things we don’t want to do to benefit the whole. I don’t think that we should never be able to go to social events as a family because Ethan struggles with them: I think our bond as a family would suffer if we left Ethan at home with an episode of The Big Bang Theory every time we went somewhere like that. And I’d get resentful. 
But I do need to accept that, like a garden, our family is made up of different individuals who need different environments in order to thrive. If I confined the sunflowers to the shade, they wouldn’t flourish: whereas honeysuckle would be quite at home on our north-facing wall. Yet together, they create a beautiful garden. Perhaps the secret to our family blooming is to be a family – to do things together, but at the same time, to accept our differences: to build in time for us each to ‘live’ for a while in our own environments and to notice when one of us is wilting and needs to get out of the sun – and to allow that to happen.