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Friday, 9 December 2016

Minor but irritating Asperger traits #1: Magic tricks

For the last few weeks we’ve taken to having ‘Sunday night family time’ watching Britain’s Next Great Magician on TV. Everyone’s a winner. The kids love it, it’s actually, for the most part, quite entertaining and it requires far less effort at the end of a busy week than reading a bedtime story.

However, I do have one complaint: Ethan.

He either has to smugly claim that he knows how each trick is done (and thus take the magic out of magic trick for us all) or, if there’s a trick he can’t explain, he’ll rewind the programme, slow it right down (the wonders of modern technology for a person with Asperger’s) and carry out a detailed study. Needless to say, this is really annoying for everyone else watching the programme. I also find it sad (and infuriating) that he needs to know how everything works – fiercely practical always. Where’s the space for dreaming, wonder, make-believe? But anything he can’t explain, pin down to science and reason, seems to bother him. It’s part of him feeling in control of his world, I guess.

I think that being able to explain a magic trick, if only to himself, makes him feel good, self-assured, right. And being right boosts his self-esteem when so often in life and social situations, he is wrong.

The rest of us, weirdly, watch a magic show for the magic. So, this week, I’m keeping tight hold of the remote control!

Monday, 22 August 2016

I don't understand

It’s very rare that I get a chance to write anything on this blog these days – with full-time work (to try and recoup some of the debt my husband has got us into), three kids (one of them currently being assessed for Asperger’s) and all the demands of everyday life that we all face.

But I want to thank everyone who’s commented on any of the blog posts recently – the people with Asperger’s Syndrome who, quite rightly and helpfully, are defending and seeking to explain Ethan’s behaviour and reminding me of the immense pressures and difficulties that people with Asperger’s face in our increasingly emotional, chaotic and socially overloading world. On the other hand, there are us, the partners, who are living with the person who is struggling to function in life. And we’re trying to bring up children with them yet bearing most of the responsibility for this ourselves (often having to repair the damage that our AS partners have unwittingly inflicted). And we don’t have Asperger’s – we do need to connect with our partners, we do need to feel supported and understood. We need to have a decent conversation once in a while and not be side-lined every night in favour of the telly or computer. And when we’re upset, we want to be really listened to and feel that we’re getting some kind of reaction and feedback to what we’re saying.
Because, and I can only speak for myself now, however much I try to understand my Asperger’s partner, the reality is I can’t. I can’t understand how something that, for me is part of being human and which I don’t even think about, for him, isn’t there. I can’t understand how, when we’re out for a walk and we bump into a couple we know vaguely and, while I’m talking to the wife and the husband is desperately trying to get a conversation out of Ethan and says ‘I miss our dog’, that Ethan says ‘mmm’, rather than ‘oh, what type of dog did you have?’ (the conversation, obviously didn’t go any further).  I don’t understand why, when our eight-year-old says proudly to Ethan when measuring himself against our height chart that tells you weird and wacky things you’re as tall as, ‘I’m as tall as the world’s tallest two and a half year old,’ that he would respond gruffly, ‘you act like a two and a half year old sometimes’ and make him cry.

So I’m sorry if my blog posts seem overly negative towards Ethan. I do love him. I admire him hugely for his persistence, his loyalty, his refusal to give up – on me or himself, his willingness to take the criticism I fire his way and to try and learn from it. And I’m thankful to him for the sacrifices he makes every day for us all and for how hard he works. And, believe me, I know I'm very far from perfect too and Ethan is very welcome to write a blog about how frustrating and incomprehensible I am! But I don’t understand Ethan and I do find life with him incredibly difficult, and very lonely sometimes. And so this blog post is for me – the neuro-typical partner – and for all the other neuro-typical partners out there who are struggling. It’s a springboard, a battering ram, a way to off-load my frustrations and connect with others facing similar struggles. 

I’m sorry to the people with Asperger’s but this blog is primarily for the NT partners and so while I really, genuinely appreciate you pointing things out about Ethan’s behaviour and why he is the way he is – and you really have helped me to see things from his perspective and have stopped me in my furious tracks sometimes and I’m grateful – but I’m sorry that this blog is probably never going to say the things you want to hear, because this blog is for the NT people who are trapped in an AS world, rather than the other way around. 

Wednesday, 13 July 2016

Aspergers and the imbalance of responsibility

Sometimes I wish I’d listened to those persistent (sometimes raging) doubts that had told me I was making a huge mistake by marrying Ethan.

He is so difficult to live with at times, totally dysfunctional to have a grown-up relationship with and almost impossible to bring up kids with. It leaves me wondering what was left to draw me to him. But I know really – it was the security, the stability and the flattery of being utterly the centre of his world. I was his special interest for as long as it took to get that ring on my finger.

It’s not that he’s stopped trying now, or turned into a tyrant. I know he does his best – most of the time. It’s just that his best is woefully inadequate and it’s so frustrating that his best never gets any better.

I’ve learnt that, when I’m working and he’s in charge of the kids, telling him over the phone what he needs to do doesn’t cut it. He’s forgotten what I’ve said by the time I get off the phone. So these days I text him the information. Today, in the midst of a really hectic schedule, I took the time to text him the information for this afternoon (‘I’ll bring dinner home, could you peel some potatoes, Sam needs to practice his spellings, Oliver’s going to his friend’s house so don’t worry about him and Ava needs picking up from church at 5pm’). I also emailed him Sam’s spellings to practice.

5pm as I leave work I phone Ethan. This is our conversation:

Me: “Could you put the oven on so it’s warming up?’

Ethan: “Oven? Why am I putting the oven…er (I can hear him scrabbling about in his conscious mind trying desperately to remember what he realises he’s supposed to know)…What’s going in the oven?”

Me (exasperated): “It doesn’t matter what’s going in the oven, just that you turn it on please so it’s warming up….(silence)…for the tea…that I’m bringing home.”

Ethan: Right…erm. OK…

Me: “What’s the problem? Just put it on. And then go and get Ava. You do know it’s after 5pm?”

Ethan: “OK (pause)…Where’s Ava?”

By the time I got home, I was already wound up. So the half-cooked pasta, chopped courgette and pepper and cold oven when I got home was enough to break me. I couldn’t even appreciate the fact that he’d made a start on dinner BECAUSE IT WAS THE WRONG DINNER. I HAD THE B*****Y DINNER IN MY BAG!

Me: “You did at least practice Sam’s spellings with him, did you?”

Ethan (pleased with himself) “Yes, I did.”

I felt slightly calmed. It was only when I was putting Sam to bed later that night and he told me that Ethan had grabbed his head to make him look at the spellings that my heart lurched.  Up to that time Ethan had just been annoying and unreliable. But the frequency with which he loses his temper with the kids over normal childhood behaviour (“he wasn’t doing what I said”) genuinely bothers me. As long as I don’t ask Ethan to do anything in the house or with the kids while he’s in charge, there’s no harm done. But there’s also no jobs done, meaning they’re all waiting for me when I get home. And who wants that?

Tuesday, 5 July 2016

Aspergers and (not) adapting to circumstances

Poor old Ethan.

Another appointment missed today because of his inability to adapt and respond to circumstances.

If I had an 08.30 appointment I’d bypass a sit-down breakfast and have a coffee, cereal bar and banana in the car on the way. I’d have a quick wash or a shower the night before (or I might just bypass the whole ritual that day - being clean’s over-rated) and I’d factor in issues like rush hour traffic to my journey time.

Not so Ethan.

He got up early – in plenty of time to get to his 08.30 appointment on time. But his morning consisted of the following routine that, it seems, is near on impossible for him to deviate from:

Have a leisurely sit-down breakfast of (warmed-up) fruit on granola (he can’t have the fruit straight from the fridge – too cold) whilst reading the news on his iphone. Normally takes about thirty minutes, followed by a lengthy toilet visit and a shower (at least twenty minutes).

Factor in a bit of faffing around and a bit more time wasted by the lure of the iphone and, despite having got up at 07.00, he didn’t set off until 8.15. He returned ten minutes later as he was struck in traffic and it dawned on him that there was no way he would get to his appointment on time.

I feel slightly guilty that I didn’t step in, chivvy him along, organise him a bit more but I have myself and three kids to get sorted in the morning. Organising a 43-year old man isn’t high on my natural list of priorities. So here he is at home, dressed for a work-out with a personal trainer yet watching TV. Irritated and still insisting that the journey should only have taken fifteen minutes (rush hour seems another anathema to him).

Maybe I should take the same approach he uses on our 11-year-old daughter and confiscate his iphone. 

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!