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Friday, 10 June 2016

Home again, home again jiggity-jig

Just back from holiday with Ethan and the kids and need another holiday to recover!

Eleven days in a (very small) self-catering caravan on a Spanish tourist site with an Aspergic husband and son (along with our neuro-typical kids) was rather like an endurance test - with a few idyllic moments and amazing views thrown in to keep us all going!

The stress started the moment our sandalled feet hit the tarmac of the airport. Airports seem to hold a special terror for Ethan. Even with two hours to go until boarding, Ethan got jittery with anxiety – eyes wide and intense, voice raised, fingers twitching. He marched us through check-in and security, leading from the front at a rate of knots, dragged children and bags banging in to other passengers on the way. No time for Ava and I to indulge in airport perks such as trying on perfume samples at duty free…except that we did, because I refuse to (and refuse to let my kids be) ruled by Aspergers, and we were on holiday for goodness sake.

Our frivolous waste of precious minutes was met with silent building pressure in Ethan leading to an angry look and an even faster pace to the boarding gate, where we sat and waited for fifteen minutes for the shuttle bus to take us to our plane. I couldn’t help pointing out that ‘I’d told him so.’
His reconciliatory comment on the plane that my perfume ‘smelt nice’ did little to appease my resentment. I was already bracing myself for the journey home….

That said, Ethan’s intensive focus, his planning and ordering of documents into carefully-labelled envelopes, his pre-booking of the taxi to take us home from the airport, does get us all efficiently and easily from A to B. It just somehow also saps all the joy out of the adventure. 

Saturday, 4 June 2016

Are you receiving me?!

Anyone else out there in neuro-diverse partnerships experience their NT partner only giving half the information required?! My husband does it all the time! Frustratingly (or perhaps as a sub-conscious means of survival!) my brain never retains the incidents, except for this morning's which is still fresh in my memory...
So, Ethan came into our room, out of no-where while I was getting dressed on holiday and said, 'Do you want to go for a walk by yourself today? I'll look after the kids, I don't mind."
Seemed a bit of a random suggestion for a family holiday so I replied, "erm, no thanks. I'll stay with all of you..."
To which, Ethan, seeming a bit put out, replied, "oh right, ok."
It wasn't until later when I realised the date & mentioned to Ethan that it was the seventh anniversary of my mum dying that he said, genuinely confused, "yeah, I know. I've already spoken to you about it when I offered for you to go for a walk."
The penny dropped...but when I mentioned that he hadn't mentioned the context of it being the anniversary of mum dying he was convinced he had communicated that information. What goes on in his head and what he thinks he's said compared to what he does say seem to be poles apart sometimes!

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!

Thursday, 21 January 2016

Asperger's and making the most of our differences

I’m reading The Rosie Project at the moment (only on chapter 3 so far but I highly recommend it – it’s brilliant if you want to see the world (and the rest of us) from the perspective of someone with Asperger’s and be able to laugh about our differences – sometimes that’s our best weapon!) As I say, I’m only on chapter 3 but already it’s done a lot in my mind to redress the balance between us (NTs) being right and those with AS being wrong – we’re different: we see things differently, we react to things differently (if we react at all) and therein lies the challenge. We want our AS partners to connect with us, to see things our way. But, actually, by embracing our differences and working as a team to each other’s strengths and weaknesses, could we be the perfect partnership?
I don’t know. It’s a question I’m asking myself too. And I know there are all kinds of hurdles and misunderstandings and frustrations to work through. I also know that, sometimes, like when your AS partner ignores a question or someone’s greeting because he’s zoned out, that Asperger’s is at odds with the world and that, if an aspie wants to build relationships and function well in society, they need to adapt – even change, to a certain extent.

But, at least sometimes, can we combine our very different traits to get the best out of a situation? Take The Rosie Project.

It’s such a breath of fresh air after serious, factual, self-help books that I read some of it out to Ethan – the best part of a chapter. And somewhere, in the middle of the chapter, was a reference to a hot January evening.

I recall briefly (we’re talking a split second) wondering about this as I read that line and surmising that the author must be being sarcastic (as evenings clearly are not hot in January). I, even more briefly, recognised that the sarcasm didn’t really work and was out of character for the narrator of the book but didn’t dwell on it and was onto the next sentence without a second’s hesitation. I had to stop a couple of times during my reading to inform Ethan that ‘this was a funny bit and did he ‘get it’?’ since his face showed no understanding, connection or hint of a smile. He, somewhat exasperatedly, confirmed that ‘yes he did get it and yes it was funny and he was enjoying it, could I please carry on.’ When I reached the end of the section Ethan’s response was: 
‘Is it set in Australia?’

‘Yes,’ I replied, bemused. ‘How do you know that?’ (‘and why is that insignificant fact the one thing you’ve decided to pick up on?’ I thought but didn’t say)

‘Because he says about it being hot in January.’

‘Ohhhhhh,’ I said, the penny dropping, ‘I knew it was set in Australia and still didn’t realise that’s why it would be hot in January. I thought he was just being sarcastic.’

Ethan looked at me scathingly, ‘No. Why would he be?’

Why indeed? The bloke’s got AS for goodness sake! But maybe other details that wouldn’t have made sense to me through the course of the novel now will, thanks to Ethan and his penchant for seemingly unimportant details. We make a good team!

Tuesday, 29 December 2015

Aspergers Christmas spoiler #3

It's Christmas Day and he's opening the present you’ve bought him. The kids are excited because they’ve ‘helped’ wrap it. He opens it, looks at it, pauses a moment and says…

“Oh dear.”

You know he has Aspergers - that he struggles to understand even his own emotions, that present-giving with all eyes on him waiting for a reaction is particularly pressured for him. But actually, right at that moment, you’re just p****d off. Fed up with having a husband who deflates everyone around him, fed up with having to pander to him and make excuses for him, fed up with him always being miserable. So, even though it’s Christmas Day and you’re in the middle of present-opening and all the kids are there and excited and you don’t want to spoil the day for them, you find you just can’t hold it back.

“What is wrong with you?” you say. “I know you’ve got Asperger's but there’s no excuse for being just bloody rude."

He looks awkward and does a kind of smirk, because he doesn’t know what else to do, and that makes you even madder.

“It’s not funny,” you shout at him, surrounded by wrapping paper and a now crying daughter who’s begging you to stop arguing. “It’s just horrible and rude and it’s now spoiled things for everyone. Why would you say that? Even if it’s not something you want. You must surely know that’s not the right thing to say when you open a present that somebody has brought for you?”

At which point your husband tells you to stop being so sensitive and walks out of the room. And you survey the scene before you of two suddenly quiet boys who’ve developed an intense interest in the game of wildlife scrabble that, two minutes earlier they had cast aside disdainfully as it wasn’t Lego or something with a screen and your daughter who is wiping her tears on her sleeve and you realise that, for their sake as well as your own, you have to come back from this. That you can’t let it write-off Christmas Day. That, actually, for a million different reasons, including the laptop, No.7 toiletry set, pestle and mortar and mini gifts from the kids that he’s bought, wrapped and got the kids to write the labels on for you and the many Christmas social gatherings that he’s come to and forced himself to perform at, you know he loves you and doesn’t mean to mess up so badly. So you kiss the kids, tell them sorry and that it’s going to be fine and you go and find your husband. Although you’re still mad and feel he’s the one that should be apologising, you apologise for your part in the proceedings; for having a go at him on Christmas Day in front of the kids. You tell him that you understand that his Asperger’s makes it difficult for him to know what to say but, of all the things he could have picked to say “Oh dear” was probably the worst. And the steam is taken out of the situation. He apologises too. Says he knows it was a stupid thing to say but that he just couldn’t think of anything else. He admits that he already knew about the present because Ava had given it away two days ago – so he was aware he had to act surprised even though he wasn’t and, it seems, this was too much for his mind to process, along with the pressure of everyone watching him and him being aware there was a kind of protocol that he should be following. He doesn’t know why it was that ‘Oh dear’ came out but you suspect it was an expression of how he felt under the pressure of the situation. After all, Aspies find it hard to edit themselves – what they’re feeling or thinking is generally what comes out while they’re busy trying to think of what they should really be saying!

Christmas Day was saved. Ethan came back into the room, we carried on opening presents. We even kissed in front of the kids to show we weren’t mad with each other. I actually ended up feeling a bit sorry for him – that, even in the relative comfort of his own home with just his family around, he still felt panicked and stressed when he had to play a part that he wasn’t sure of. Is there anywhere, anytime, anyplace that this guy can relax?  Oh yes, that’ll be in the office in the dark playing computer games…until I come and have a go at him for shutting himself in there instead of being with his family. Hmmmm….

It ain’t easy! All we can do is keep picking ourselves up and trying again. 

I wish all of you, AS or NT and despite the surface-level complications, highs and lows, tears and triumphs, a foundation of happiness, acceptance and peace this new year.