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Sunday, 29 May 2016

Managing the unmanageable

Going on holiday in the morning.

Packing has been an interesting meeting of the minds.

Ethan started preparing small 30 ml-sized plastic bottles a couple of weeks ago, along with sticky labels for shampoo, shower gel and conditioner. He also ordered two new suitcases and a weight checker.

Ava texted me when I was out last night pleading with me to come home because Ethan wouldn’t let her take her cleanser (not even in cargo luggage) ‘because it was too big’. He is excelling himself in anal retentiveness and old-woman fussing. Initially it drove me mad. But, as time has gone on, I’ve realised there’s no point fighting it. He is who he is. So I’ve let him do his little labelled bottles, his master packing list and his bag weighing and I’ve sneaked in Ava’s cleanser along with some other non-conforming moisturisers and face-washes. Because I’ve realised that, for Ethan, regimenting the packing, making everything neat and uniform, is his way of controlling the uncontrollable. Because, although the holiday is something he’s looking forward to, it’s also something unfamiliar, out of the ordinary, unchartered. And he needs to be able to compartmentalise it into manageable chunks – quite literally.

And, actually, he was right to buy the extra suitcases. We’d never have got everything into the one big and one small one we had.


Perhaps we do make a good team after all. 

Monday, 16 May 2016

Aspergers, relationships and Mental Health Awareness Week

Am particularly conscious, during this Mental Health Awareness week which focuses on relationships, of how mental health affects not just the person with Asperger’s but the whole family around him or her.

This weekend was the perfect example of how Asperger’s affects our family. A toy wooden boat fell on Ethan’s head as he was getting something out of Sam’s wardrobe on Saturday (a toy wooden boat that Ethan himself had put there, I hasten to add). Ethan’s anger immediately took hold. He stormed downstairs with the wooden boat where he proceeded to smash it into pieces. Sam cried, I shouted, Ethan fumed.

The fallout lasted all day. I was so angry with my husband. I was disappointed for my son. I had to spend the whole day with Ethan and go to a party with him that night feeling rubbish and hurt and worn out with him. Having spent the first ten years of our marriage sulking over events like this, I have now learnt it’s a reaction that is completely counter-productive. I tried to talk with Ethan about what had happened. But his refusal to accept any blame (it’s the boat’s fault, it’s the wardrobe’s fault, he never played with it anyway, it had some parts missing (it didn’t)) made me even more depressed and frustrated.
Eventually, through my perseverance and refusal to let him walk away from what he’d done – he admitted liability. He accepted that he’d lost his temper, that he’d acted badly, that he needed to say sorry to Sam. But it took all day to get to that point and I was still left feeling resentful that I’d had to work hard on him all day for him to reach that point, and angry and disillusioned that it had happened at all.

I’m reminded of the importance of the NT partners of AS individuals to look after their own fragile mental health. To ensure they have time for them and, crucially, time with other NT friends. So much of my life with AS is hidden as Ethan doesn’t want people to know about his condition. I understand that, and respect it, but it makes being able to off-load difficult - if not impossible. Having one or two close friends that your partner agrees can know about his/her AS and be your sanity (although often, unless they have experienced living with someone with AS themselves, it can be hard for them to really get it) can be a lifeline, as can forums like those on Different Together. And, of course, writing a blog can help too :).


So, this Mental Health Awareness Week, thanks for being my sounding board, my confidante, my listening ear! And do protect your own mental health however you need to – we’ve got a lot we need to be strong for.

Thursday, 5 May 2016

Blame the Aspergers

There are times when I hope my husband’s more frustrating traits are down to Asperger’s Syndrome and not anything else.

…like when I came downstairs this morning to find that our new puppy had pooed all over her bed, and both her blankets. The poo had gone inside the grooves of her cage and smeared onto the wall behind. I was alerted to this fact by my daughter, Ava, proclaiming that Maggie had ‘pooed everywhere’ whilst letting her out of her cage to run her pooey paws all over the house.

What has any of this to do with Ethan and his Asperger’s, you may ask?

It was Ethan that put the puppy to bed last night: without the waterproof mat that I’d placed on top of the cage ready to cover her bed. Instead he’d shoved both her newly-washed blankets inside her bed ready to be smeared with excrement so that we wouldn’t be able to use them the next day.

The kids ended up being late for school, I had to deal with far more poo before breakfast than anyone should have to face and Ethan whizzed himself off to work.

But it’s not just the dog’s bed missing its most important component, it’s the many other omissions, forgettings and just plain vacant moments that make me wonder whether anything at all is going on inside Ethan’s head. And that’s when I hope that it is Asperger’s to blame – rather than my husband just being thick.

The same day (yesterday), I was at work and took the time to text him an itinerary of what our various kids needed to be doing when. By the time I got home at 6.30pm, Ava and her friend should have been at youth club (itinerary instruction #1 ‘Ava and Jessie need to set off at 5.45pm for youth group to be there for 6pm’) and Sam and Ethan should have had their tea and be ready for the Cubs bike ride that was starting at 7pm. Instead what I was greeted with when I got home was Ava and her friend happily playing with the dog half an hour after their youth group had started and Sam and Oliver only just sitting down to their tea. I managed to get the girls out (late) to their club and Ethan and Sam to the bike ride – but they only had a drink and snack because I remembered the water bottles and biscuits that Ethan had forgotten and left by the front door. And Ethan came home freezing because he just walked out of the house in what he was wearing (which wasn’t much).

I asked what was happening (or not happening) in Ethan’s brain when he put the dog to bed and got ready to leave for the bike-ride last night and this is what I discovered:

<what I would be thinking>: ‘Right, I need to put Maggie to bed so she needs her bed in her cage. I’ll take the blanket out so it doesn’t get wee or poo on. And I need to put a mat in to soak up any wee or catch any poo. There we go, ah – isn’t she cute? Here, have a stroke.’
<what Ethan thought> ‘Right, I need to put Maggie to bed. So, grab the bed, put it in the cage, put her in cage.’
<what I would be thinking> ‘Right, I need to get to this bike ride. What do I need? I’ve got bikes and helmets, I need the drink and a snack. Do I need keys – no Laura will be in. Money? No. Jacket? It’s going to get colder, I’ll grab a hoodie.’
<what Ethan thought> ‘Right, I need to go.’

Maybe it’s just a man thing – but it can’t be a man-with-kids thing. With three kids in tow he just needs to think things through a bit more.

I’m going away this weekend and Ethan is responsible not only for looking after our kids for the weekend but also for getting Oliver to football, Ava to dancing, Oliver (later) to a party and Sam to his gym class! Maybe, with me totally out of the picture, he’ll rise to the challenge. And I need to keep giving him the opportunities (or, rather, forcing him to engage his brain) because the alternative is that I do everything all the time, which just leads to me getting resentful and bitter (even if it does mean everything gets done properly)!


Although I can’t rant too much – Ethan’s just whizzed the swimming kit down to school for Sam that I forgot to hand in this morning!