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Friday, 28 June 2013

Aspergers side effects

Does Aspergers come with built in self-indulgence, lack of initiative and absolutely no perception of what a situation requires? Or do I just have a husband who is self-indulgent, lacks initiative and has absolutely no perception, as well as having Aspergers? Seems very unlucky!
He has been off work all week with a bad knee. I am absolutely sick of the sight of him lying on the sofa with his iPad. A couple of nights ago I was making tea, baking cupcakes for the school sports day, doing packed lunches (all simultaneously) and being continually interrupted and whined at by small children. Amidst it all, Ethan nodded off on the sofa, opened iPad on his lap.
The day before I instructed him that he had to help Ava with her homework. The experience was traumatic for everyone. Ethan gazed off into the distance whilst Ava tried to equally divide up rectangles in ten different ways. I got cross with Ethan for not engaging in the process (particularly when I came over and saw that Ava hadn’t been dividing her rectangles equally and that Ethan was totally unaware). Ava got upset that we were arguing. Ethan got upset that I was interfering. It’s easier to do things myself.
He’s been hobbling through the week looking for sympathy while I race through my days doing all the jobs (it’s generally at least 9.30pm by the time I’ve finished tidying up from one day and getting ready for the next – I’ve asked Ethan to do the packed lunches a couple of times but the kids never eat the sandwiches he makes. Again, it’s more productive to do it myself!). I’ve phoned the doctor because he wouldn’t remember or be bothered to. The doctor called back while I was doing the school run. Ethan didn’t hear the phone.....argh. So I called them back again and put the phone in Ethan’s hand. I’ve bought him Ibuprofen but he doesn’t take them unless I get them out of the packet and put them in his hand...
The leaving everything to me and being utterly disengaged with family life unless I’m forcing him into it seems to be getting worse. And I’m getting more and more impatient and irritable about it. The relationship does not feel equally weighted. It feels like a drain at the moment, rather than a healthy, functioning relationship in which we are both being built up and developed.
Don’t know what the answer is. In the meantime, I’m going out tonight BEFORE bedtime and leaving it all to him. Don't know who I feel more sorry for - him or the kids!

Tuesday, 25 June 2013

Meeting in the middle

Ethan has just finished organising our medicines into little boxes which he’s labelled cold remedies, painkillers, creams, hay fever and miscellaneous. The anal ordering goes against everything in my chaotic, free-wheeling nature. It also gives the impression that we have nothing better to do with our time than categorise household medicines.
I’m over-reacting, I know. Probably half of you reading this blog categorise your medicines. And much more. It just highlights once more how different Ethan and I are.
That’s not necessarily a bad thing. Aspergers isn’t necessarily a bad thing. Just a different thing, that sometimes needs to be bent and shaped to a certain extent if the person wants to fit in to particular social situations and build friendships. But then I need to be willing to bend and shape my natural instincts too.
The main way that Ethan and I are different is that I care too much about what people think and Ethan doesn’t care enough. For instance, last weekend, Ethan was camping with a couple of friends. One of them had forgotten his wash bag. He asked Ethan if he could use some of his shower gel and Ethan said no. It was nothing personal, just practical. Ethan didn’t think he’d have enough for himself if he let this other guy use some. It didn’t enter his head to just use a bit less on himself, to put himself out a bit in order to help someone out and therefore build a friendship.
At the same time, I was staying with the kids at a friend’s house. On the Sunday morning, after only 3 hours of sleep (having shared a room with kids all night) I was meant to be leaving by 9am to get home in time for church (I had the all important biscuits for the children’s clubs). By 10am I still hadn’t left – I was too busy helping tidy up and chatting with my friend (I didn’t want to offend her by just getting up and leaving). When I did eventually leave I felt so torn that I wasn’t watching my friend’s kids in their fun run that I phoned church, saying I was really sorry I wouldn’t be there in time with the biscuits (and feeling guilty about that), then stood in the rain for an hour trying to keep my kids occupied whilst watching my friend’s kids run around a field. When all I wanted to do was go home, put the kids in front of the TV and go to bed!
Ethan would have done just that.
Somewhere there’s a happy medium!

Friday, 21 June 2013

Aspergers Anonymous

Sorry for the abrupt disapperance earlier in the week.
It's hard balancing writing a blog with trying to keep low-key! Ethan, understandably, isn't keen on telling the world about his Aspergers. I, on the other hand, would shout it from the rooftops, since I think it gives credibility and well, to put it bluntly, an excuse (or at least an understanding) for his sometimes odd behaviour/choice of words/aloofness.
However, there are far more people in our lives who don't know about Ethan's Aspergers than do. And Ethan wants to keep it that way. He thinks (probably rightly) that Aspergers still conjurs up certain assumptions and stereotypes in people, and that it might change the way people see him and interact with him. At the end of the day, he's trying desperately to try and fit in and appear as normal as he can in a world that is baffling to him. For everyone to know that he's different and he doesn't fit in would, I guess, render the whole charade pointless!
Of course, it's also a pride thing. He's only human.
So, I've had to lay low for a few days. But I've missed being able to muse on this blog. There's something cathartic about knowing that there are a few people out there who will read your words. Perhaps even be encouraged or comforted by the fact they can relate.
On the other hand, I'm getting far too addicted to checking my 'page views today' rating - so a few days away has been good for me!
Ethan's away this weekend - camping with friends. Well, a friend actually (the others are friends of Ethan's friend). Hope it'll do him good. Hope he'll come back refreshed rather than drained. Am sure it will do him good. It'll remind him that he can go without a shower in the morning, and an extended session on his Iphone on the loo, and that life will still carry on as normal!

Sunday, 16 June 2013

Aspergers and good days

It’s been a pretty good Father’s Day.

Ethan had breakfast in bed, we went to church and Ethan had a good chat to some of the blokes there, we went to a medieval battle re-enactment fayre thing (and Ethan seemed very main-stream in comparison to many!), we came home, the kids played together really well, Ethan worked on the decking and I made tea.
Domestic bliss in the bosom of the perfect family. It’s on days like these that Ethan seems just like anyone else. And I wonder if I’m making a bigger deal of the Aspergers thing than I need to.
There are just little hints, slight nods, in the direction of an Asperger nature: him feeling he needed to enlighten me as to the one thing that wasn’t quite right with the bacon and egg sandwich I brought him in bed (it didn’t have enough brown sauce, if you’re interested); him coming in from the garden after an hour of tinkering (whilst I’d unpacked the day’s bags, made the kids tea and done lunchboxes for tomorrow) and exclaiming that the dining room table was a mess; and him trying to usher us on whilst a bearded, legging-wearing medieval guy was telling us about the worst injury he’s ever seen ‘on the battlefield’.
Maybe if I wasn’t so used to living with Ethan’s Aspergers, I’d be disappointed. As it is, I feel rather pleased that the only negative behaviours thrown at me today were two insensitive comments and a slightly embarrassing social situation.
Not sure whether that’s a good or a bad thing...

Wednesday, 12 June 2013

Aspergers and spilt milk

Just…drifting…off…to…sleep. The day’s events are blurring, clear thought losing its sharp sides…drifting…drifting…
'Huuuurrh,' Ethan sighs, loudly. Then the duvet is ripped from the bed. A cold draught cuts across my body. I jolt into consciousness. Ethan stomps to the wardrobe and proceeds to pull out pyjama oddments. A few seconds go by. Still pyjama tops are flying from the shelf. Another loud sigh ‘Arrghh. I don’t have any long-sleeve pyjama tops.’ He jabs the words at me, agressive, irritated, as though I am somehow to blame for this current state of affairs.
I join in the sighing. I pull myself out of bed. Walk to the wardrobe. Within ten seconds I have located a long-sleeve pyjama top. I throw it at Ethan. Now it’s my turn to be aggressive, I launch into attack: ‘Why is it so difficult for you to look for anything properly? Looking means moving things around a bit, checking underneath stuff. Not just blankly staring at what is in front of you and, based on that, deciding that what you need isn’t there. Also, grow up. You’re like a child having a tantrum. You can’t find a long-sleeve top so you sigh, throw things around and shout at me. At midnight. What’s it got to do with me? And it’s utterly selfish of you to wake me up and rant just because you’re irritated.’ I’m fairly eloquent to say I’ve just been rudely torn back from the brink of sleep.
I get back in bed. Sigh again. Ignore Ethan's subdued ‘sorry’ – and am awake til 1am feeling annoyed and wound up. Ethan snores beside me.
The next morning I’m tired and grumpy. The kids don’t help matters. At 8.10am I have Coco pops all over the floor, Oliver covered in chocolate milk and devoid of breakfast, Ava prancing around the kitchen in her pants refusing to get dressed and Sam requesting Nutella on toast. I, having not had a moment to myself since waking up, am still in my pyjamas and we have to leave for school in 15 minutes.
I snap. I fling Oliver into the naughty room. Tell Ava to get dressed. She tells me not to be stressy. I snap again, smack her and send her to her room.
We’re late for school again. I wish I hadn't smacked Ava. I now have guilt to add to my repertoire of moods. Through it all I’m still blaming Ethan – he’s put me in a bad mood. His self—absorption and lack of empathy has led to me being tired and grumpy. My conclusion is that it is his fault that I have smacked Ava, shouted at Oliver and that we’re late for school again.
I’ve left the Coco pops on the floor for him to deal with when he’s home. The more concreted onto the floor they are the better.
Now who’s being childish?!

Saturday, 8 June 2013

Aspergers does Butlins!

Just back from five days away experiencing Billy Butlin’s Best. Given that it was five days of constant, high-level noise, chaos, surging crowds and complete stimulation overdrive, Ethan did pretty well.
There were only a few moments when I had that sinking sensation. Whereas he must have spent most of the week feeling stressed, confused, overloaded and exhausted.
One sinking moment came towards the end of the five days when Ethan roared at Sam to ‘stop walking in front of me’ and physically pushed him out of the way. Apart from the fact Sam was worried about cars and had gone to Ethan for protection and so was of course, crying his eyes out, it was other people’s reactions which stung the most. People looking and muttering - no doubt about Ethan’s parenting skills.
The second sinking feeling (I actually thought Ethan might get punched) came in the dinner hall. It was loud, it was chaotic, it was crowded, it served greasy junk. It felt like being in a soldier’s mess hall! The surroundings didn’t make for a relaxing dining experience and Ethan struggled with the noise and sheer amount of people that got in the way of him smoothly processing through the stages of choosing his dinner, eating it and walking out. At the end of dinner one day, as we were standing up to leave, a young boy was heading towards our table. Fed up of constantly being held up by other people, Ethan made an ill-judged move to grab Oliver’s jacket off the back of the chair right in front of the boy. The result was that the heavy wooden chair fell over onto the boy’s foot.
Boy and father were far from impressed. I was embarrassed. I think Ethan was embarrassed. Part of me wanted to declare ‘Don’t think because I’m married to him that I’m like that too. I would have waited for your son to pass.’ The other side of me wanted to defend Ethan, to explain that he’s got Aspergers: to explain that his mind focuses on an end goal, not on other people and what effect his actions might have on them.’ Instead I muttered sorry. Ethan apologised robustly, he even called the little boy ‘mate’ (I think the adrenalin was pumping). And we left the scene with the boy and his dad presumably thinking that Ethan had no manners. 
I think that’s how I might sum up Aspergers. In Ethan anyway. It’s a complete lack of manners. Because what are manners, other than consideration of other people? And that’s something utterly alien to Ethan. It’s something he’s learned to a certain extent, but when his instincts take over, that learned behaviour quickly disappears. Perhaps Aspergers is simply the selfishness of human nature un-tethered by any learned social etiquette.
What I find frustrating is that Ethan can do it. He can think about others. Completely of his own accord, he took the kids on a bike carriage thingy so that I could have an hour to myself. Other pluses to the holiday, so as not to end on a moan, were dancing badly with no shame at all at The Jacksons tribute night, spending a fortune with Sam and Ava on the 2p machines, learning how to fence and having a duel with Ava, launching myself endlessly down the water slide wedged into a rubber ring with the boys, and eating and drinking lots of rubbish food that tasted great. Overall, despite the chaos, noise, unhealthy food and crowds (and the odd sinking feeling), Butlins was a winner – even for a family with a dad who has Aspergers.