Aspergers and forging a new way forward

So, today Ethan and I had our last follow-up session with the specialist who diagnosed his Aspergers. The sessions were designed to help with the fall-out from the Aspergers diagnosis - to rant, moan, attack, grieve, wish-out-loud, resent and vent before hopefully reaching a point where we can start to see a way forward and begin talking instead about adapting, changing, accepting, relenting, agreeing, challenging, building up and carving out a new kind of relationship and a new kind of reality.
We talked about how I want to shout from the rooftops that Ethan
has Aspergers because I feel it excuses, or at least explains, so much. I feel less on edge around people that know about Ethan's Aspergers, less nervous about what he might say and how he might be received. It feels safer that, should Ethan slip up, he - and by association I - have an 'excuse'. Ethan, on the other hand, wants to keep his 'status' hidden from all but a select few friends and family. For the first time today I heard him speak touchingly, openly and honestly about why...
He spoke about the vulnerability of people knowing. Of the lifetime of hard graft he's had 'pretending to be normal' - just for that to be destroyed in seconds by admitting to people that he's not 'normal' after all. He spoke about the awkwardness of his cover being blown and people knowing that he's pretending to be normal - which defeats the object of pretending in the first place.
I think, for himself, he needs to have a reason to keep on striving to fit in. Perhaps he feels that if everyone knows, it'll be an excuse to sink into his Aspergers. Something that we both want to avoid.
By the end of today's session, I felt we could forge a way forward - if the commitment remains in us both. If we both continue to try to understand each other more. If we keep sight of each other's good points, if we communicate more and pray a lot! And, crucially for me if I'm really honest with myself, to care less about what other people think.
What choice do we have but to keep on keeping on? We've got three kids. And we've got a relationship worth working on.
So change it is.

But the craft cupboard needs sorting!

So, we did manage to get through last week without any major arguments. It seems The journal of best practice and Ethan’s resolve work well together! He’s been calmer and more patient with the kids and has tried really hard to be generally more cheerful and engaged.

There was a tense hour or so on Saturday morning – the day of Ava and Sam’s summer fair. As I dashed around taking Sam to a friend’s house, baking a cake with Ava for the cake competition, getting washing hung out and getting the kids dressed, Ethan decided that now would be a good time to sort out the craft cupboard. He does this: has a thought or decides a job needs to be done – and has to act on it right then. Regardless of what else might be going on. He has a total lack of being able to plan, prioritise or organise. And he gets really irritated if I or the kids interrupt whatever he’s set his mind to. He finds it really difficult to see anything else or think about anything else until that task is done. Never mind that we have to be out of the house in an hour and he’s still in his pyjamas with half the contents of two drawers on the kitchen floor!

I shouted (a little bit) and, to his credit, he did manage to cut a few corners on the reorganising of the drawers and help me get the kids fed and dressed.

We reached the summer fair in time – all dressed (amazingly) and with a finished (and, it turns out, award-winning) cake that Ava and I had created amidst the chaos of the morning. And we’d managed to stay on speaking terms!

And, I admit, it is nice to have a tidy craft drawer. I just wonder why he couldn’t have done that one evening when the kids were in bed rather than on a busy Saturday morning when we have 1001 other things to do and somewhere to be.

Aspergers isn’t always logical!

Aspergers and not thinking

What a difference a day makes!
On Monday morning, following Sunday's showdown, Ethan got up before the alarm, sorted out the kids' breakfast and got them dressed, all before I got up! Even more amazingly, he did it without shouting at them, losing his temper, pushing or pulling them. He even managed not to sigh (at least not loud enough for me to hear!)
 Today's Thursday and he's managed to maintain the transformed approach. It's partly due to the blowout on Sunday night (me saying we were all happier when he wasn't around might have stung a bit!) And partly thanks to a fantastic book Ethan's reading (and that I've dipped into a bit) called The Journal of Best Practices. It's written by a guy with a wife and kids...and Aspergers. I love it because: a) there are so many similarities to our life and it helps Ethan and me to see that, within the world of Aspergers/neuro-typical relationships, we're pretty 'normal'! I think the fact this guy has so many of the same issues, hang-ups, stresses and behaviours as Ethan, gives Ethan some validity and reassurance too. And it helps me to see that at least some of the traits that drive me mad in Ethan are due to his Aspergers and not due to the fact he's a rude, insensitive git! b) This guy and his wife have found a way to live with his Aspergers and still have a happy, productive relationship and happy, productive lives. And c) It's humorous. And, as the laughinghelps blogger reminds us, laughing helps. It really does.
But, getting back to the bit of the book that transformed Ethan's attitude this week, the author David Finch describes how he really wants to have quality, fun time with his kids but instead, when he plays with them for example, he finds his thoughts drifting off to analyse how he could better construct a Duplo tower, or how he could improve the quality of a particular toy. And that's it. He's zoned out. While the kids play, he's in another place entirely - physically there but mentally absent. Ethan has exactly the same experiences. Afterwards, he'll feel irritated with himself for zoning out when he could have been enjoying precious moments with his kids. But rather than this leading to him rectifying the situation, it just makes him bad-tempered so that, when the kids do try to connect with him, he's too irritated and wound-up to respond. Or, if they slightly step out of line, he snaps. In the book, David has the same problem. His advice is to shut off your thoughts before they have a chance to build: in his words 'Nothing numbs feelings like thoughts.' So, the answer? Don't think! At least not for that moment. If you've decided that now is the time to play with your kids, play with your kids. Take control of your thoughts. It's something we all need to practise, Aspergers or not. But having witnessed Ethan trying to live this way this week, I've seen the positive effect it's had - on him and on the kids, and therefore on me.
Maybe this is the week we'll get through without a big argument...3 days to go!

Aspergers and blow-outs over toothbrushes

Goodness me. We had a big blow-out at the weekend.

Over a toothbrush.

We’ve had a toothbrush argument before. Ethan absolutely cannot bear to use anything other than his particular toothbrush (I forgot to pack it the last time we went away – which begs the question, if he’s so worried about his toothbrush, why he didn’t do his own bloody packing!) Anyway, this time it was about the fact I had unwittingly given Sam Ethan’s spare toothbrush since Sam’s looked like a bedraggled hedgehog. Sam was very proud about having a grown-up toothbrush and proudly told Ethan when they went to brush his teeth at bedtime, that this was his new toothbrush.

The problem with Ethan is that he reacts – whether he’s dealing with a 50-year-old or a 5-year-old his response will be pretty much the same: aggressive, lacking in tact or empathy, and loud. Poor old Sam was crying his eyes out and trying to tell Ethan that mummy said that was his new toothbrush, while Ethan didn’t hear a word Sam said because he was too busy shouting over him and stressing about the fact his toothbrush had been used by his son.

My reaction was partly to the fact Ethan gets so irritated and shouty with me and the kids over little things and partly that when he’s on a rant (and even when he isn’t) he doesn’t listen to what the kids are saying to him.

It was the end of a long weekend, in fact week, in which I have done the lion’s share of dealing with the kids and housework and paid work whilst Ethan ‘rests his leg’ and in which, during the little time he’s had with the kids, he’s been irritable and impatient with them. I lost it. Shouted, told him we were all happier with him not around (which was particularly harsh and which I immediately regretted) and threw the toothbrush at him. Which I shouldn’t have done because it made Sam cry.

Children are a huge challenge to a person with Aspergers. They’re a huge challenge to me and I don’t have a need for control and calm and orderliness. And we’ve got three of them under 9-years-old. I know I should cut Ethan more slack. Maybe take on more of the burden (although, I feel like I’m already doing most of the emotional and physical management of the kids), be more patient with him, step into a situation before it gets too heated, encourage him more, micro-manage his time with them. But it’s exhausting constantly having to be on my guard, watching out for potentially explosive situations, explaining anything that I need Ethan to do with the kids in detail – and then reminding him again when he completely forgets what I’ve said.

Ethan immediately regretted his irritable, aggressive behaviour and, when he thinks about it, he knows that it’s ridiculous over-reacting like that over a toothbrush (particularly towards Sam who was completely innocent in the whole process). But by then the damage was done. Ava who’d overheard it all thought we were splitting up (so did I for a second), Sam was upset about things being thrown and voices being raised, and I was just totally fed-up with managing Ethan’s moods and mini explosions.

Needless to say Ethan is trying really, really hard today to keep a lid on things and control his emotions. But the kids have been at school all day. 3.30pm onwards will be the real test.