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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.