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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,'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...