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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. 

Tuesday, 8 October 2013

Why does my Aspergers husband love to criticise? or Light conversation over dinner - Aspergers-style

It all began wonderfully.
I arrived home from work and not only had Ethan fed the kids and got them in the bath - he also had our dinner smelling tantalising in the oven. He was rather pleased with himself and I was very pleasantly surprised.
Then we sat down to eat - no TV, no kids, no radio, just me and him and our dinner. And it all went wrong.
I have an interview on Friday so, after a bit of small talk about him and his day (steered by me), Ethan asked me if I was feeling ready for the interview. Except that the way he phrased it - rattling off what he felt I should have done in preparation, and raising his eyebrows at my answers, just got me irritated. I know I should be able to rise above tone and delivery by now, that I shouldn't put too much store on it - but just as Ethan's brain is wired not to detect tone and body language, mine is highly wired to notice all of this in detail and form a conclusion based on it (which, in Ethan's case is often not what he means at all).
I suggested we change the subject - quite controlled and grown-up of me, I thought. Ethan came back with: 'So how's the card-making business going then?' (a wild notion I had a few weeks ago to start making my own greetings cards in my 'spare' time). Ethan knows I've done nothing. And possibly his opening was a purely innocent way of encouraging me to share my thoughts on the project and revive my enthusiasm. But it sounded very much to my ears like a highly-charged critical question.
We changed the subject again.
This time the discussion was based around us needing to spend more time together - just hanging out, having fun...surely nothing could go wrong with this topic of conversation. 'Well this morning at church was a complete waste of time. We could have used the morning to have much better quality time together,' said Ethan.
Argh. I took the moral, indignant high-ground: 'Will you stop being so b***** negative and critical about everything? Everything we've spoken about you've taken a critical slant on. You've made the effort to cook dinner and get the kids out of the way but what's the point if you're just going to spend the time getting at me and moaning? This is meant to be us having a happy time together.'
Ethan smiled his biggest fake smile. 'We are having a happy time...' followed by a shout that a caveman would have been proud of to 'get back upstairs' directed at Ava, Sam and Oliver who had chosen this moment to appear en masse at the dining room table - seemingly for no apparent reason other than to further irritate the situation.
Dinner was cut prematurely short after that as we'd run out of things to talk about, the kids had started whining and it was time to get them ready for bed anyway.
But before bedtime proceedings began - we had a couple of minutes to analyse what had gone wrong - and a key element in us being able to do this was that neither of us let the depressing conversation drag us down too much. We laughed at ourselves - well, smiled wryly at least, and defused the mood.
And Ethan ended our short time together with a joke - yes, he really did: suggesting he use Aspergers flash cards depicting mood/feeling/emotion that he could select at will and hold up as he spoke - just to avoid any confusion in the future. Or maybe he was serious. Perhaps there's a market there...

Tuesday, 1 October 2013

My Asperger partner: top three gripes

The three top things that annoy me (this week) about living with a partner with Aspergers are:

  1.  His complete unwillingness/inability to see that he is in the wrong. He owes a parking charge at the moment that he refuses to pay. By his own admission his car stayed twenty minutes longer than the ticket allowed. He’s been done fair and square: except that he can’t see it like that. He thinks the charge is unduly high – which, I agree it is (although it would have been a great deal less if he’d have paid it straight away), and his mistake was genuine – in his mind these two things means he shouldn’t have to pay. He just won’t/can’t admit to being in the wrong and accepting the consequences
  2. His absolute necessity to have a half hour toilet/shower/ipad session every single morning – even if it means making us even later for something than we already are or, more often than not, leaving me to do everything and even forfeit having time for breakfast (let alone have a wash) so that we can be on time.
  3. His absentness (if that’s a word) both in conversation and in practical terms. So I can go on and on about how important it is for Ethan to take Sam’s cheque into gym that evening as we’re already a week late paying it. I can get him to look at me while I speak and repeat back what he needs to do with the cheque. I can even put it in his hand as he leaves... and he’ll still come back holding it.

In the interests of fairness, I guess I should include the top three things that, I’m sure, annoy Ethan about me:

  1. Being stressed all the time – and making a point of telling Ethan why I’m stressed - relaying my to-do list to him and generally off-loading the side effects of my stressed, rushed, busy life onto him as he lies on the sofa and watches film trailers.
  2. Being flighty – changing my mind, changing my plans, changing my mood at a moment’s notice. Although I must say that the kids have a lot to answer for here. But for Ethan to keep up with confusing mood changes (even within the hour sometimes) and a family picnic in the park morphing into friends coming round to our house for lunch is challenging to say the least.
  3. Talking too much – at him, to him, around him. Combine this with our eight-year-old daughter feeling the need to share every thought, sight, sound and smell she ever has with us, and Ethan has to put up with a lot of prattle!