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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. 

Monday, 21 December 2015

An Aspergers Christmas #2

Christmas spoiler #2
Ethan had been home from work for about twenty minutes and seemed in quite good spirits. I took my chance to get him involved in the general merriment of Christmas by asking him to help the kids decorate their Christmas gingerbread house while I made tea. His intentions were great. He decided to up the festive mood by playing some Christmas music from the computer through the TV while they did it. However, by the third round of ‘Never do the tango with an Eskimo,’ it was clear something wasn't quite working! The problem of why the album wouldn’t move past track one became all-encompassing to Ethan. He became glued to his iPhone and the TV remote trying to sort it out whilst the kids got increasingly frustrated and impatient waiting to create their house. I got increasingly frustrated and impatient waiting for them to create their house. Any plea for Ethan to come off his phone, forget the music and help the kids with the gingerbread house were ignored or met with irritation. The kids didn't care about the bloody music; they just wanted to stick jelly tots onto an erected house. I didn't care about the bloody music; I just wanted Ethan to be the one to do this activity with them as I’d been with them all day and was trying to make tea. But Ethan continued to shut us all out and fiddle with his phone. Eventually, grumpy & minus music, he made a start on the house but wouldn’t let the kids near it and insisted that it must look exactly like the picture on the box (which he misinterpreted anyway).  I lost my rag, shouted, grabbed the bits of house off him and did it myself. He walked away, the dinner burnt. The ironic thing was that, what could have been a lovely, jolly time was ruined by Ethan trying to make it a lovely, jolly time and getting angry when the jolliness wasn’t exactly the way he'd planned! That famous Asperger inability to adapt or prioritise doesn't take a break for Christmas!

Christmas blessing?
He did come to say sorry afterwards. Even apologised to the kids.

Small steps…!

Merry Christmas.

Monday, 14 December 2015

Christmas - Asperger's style

A new theme to my (rather sporadic) blog posts for the Christmas season inspired by us decorating our tree this weekend: Christmas spoilers and blessings - as experienced when living with a partner with Asperger’s Syndrome.

So, picture the scene, the Christmas tree is up and Ethan comes down from the loft carrying two boxes of tree decorations – collected and made over many years of children’s Christmases. We (my five-year-old, seven-year-old, ten-year-old and I) tear into the boxes, excited to begin this festive family tradition. In our box of decorations we come across tinsel, of course, and baubles – and more baubles…every now and again the continual stream of baubles is made more exciting by the discovery of one of the children’s first Christmas baubles or a ceramic angel with Ava’s name on. But steadily, the box is emptying and something is still missing. The years’ and years’ worth of toilet roll Father Christmases and cardboard angels that are the inevitable and personal finishing touches to any family Christmas tree… the culmination of ten years of children’s Christmases are all gone, save for a single glittery red stocking and a cardboard manger scene that have survived Ethan’s cull.

Unbeknown to any of us, when putting the Christmas tree decorations back in the loft last year, Ethan had taken it upon himself to sort through them and had chucked out ‘the old, tatty-looking decorations’! He was utterly desensitised to the fact that these were his children’s creations, lovingly and excitedly made and tracking their creativity from toddler-hood to present-day. He was thinking purely practically; they’d seen better days so out they went!

I was gutted, obviously and astounded once again by the way his mind works. However, after my emotional reaction fuelled by mulled wine, I don’t think he’ll be doing it again! And the children have already set to work creating new festive delights to adorn our house with!

The blessing, because I feel, particularly at this time of goodwill, that I should counter any whinge with recognition of what I have to be thankful for, is that Ethan has so far risen to the occasion, made the effort, put a (sometimes slightly pained) smile on his face and has been cheerful, sociable and (mostly) upbeat during what has been even for me a sociably-exhausting couple of weeks.

Hoping he’s pacing himself cos we’ve got another three weeks to go before he can slump into the hibernation of January! 

Wednesday, 9 December 2015

Aspergers and not quite connecting

I heard a talk from someone with Asperger’s Syndrome lately where she mentioned the block that exists between AS and NT (neuro-typical) people: a kind of invisible wall that neither person can penetrate. For the AS person there’s a sense that, however hard they try to interact and impersonate the rules of social engagement they’ll always be just slightly off the mark, left with the sense that they’ve not quite got it right; not quite made the connection. And for the NT on the other side, the feeling that this person that they’re communicating with just isn’t quite getting it; isn’t quite tuned in, is on a different wavelength.

I witnessed this at the weekend. We threw a party on Saturday night (belated bonfire, early Christmas!). Ethan loves getting the house ready for a party – tinkering with mood lighting, organising a system for drinks, selecting a playlist…And, he starts off well – greeting people enthusiastically, offering drinks, asking people questions. But he just can’t keep it going. After a couple of hours he was starting to wilt. By the time we were down to the last few stragglers who didn’t want to leave, mentally, Ethan was gone. I was tired too but, as an NT, I could pretend I wasn’t and give the impression that I was still interested and connected with the conversation. Ethan couldn’t. I saw it as he made his point by tidying up around us and turning the music off as people were still sitting chatting. And when a guy tried to start up a conversation with Ethan by telling him about something funny that had happened that day, there was a very slight delay between him finishing his account and Ethan’s woefully inadequate response of ‘yeah’. Although Ethan was looking at the person speaking, his eyes weren’t focusing on him and even his smile somehow seemed fake. I saw, as clearly as you can see something that’s invisible, the barrier between them.

Mind you, the guy did leave quite promptly after that. Maybe I should hire Ethan out as a service to party hosts wanting to get rid of those last stubborn guests!

Thursday, 26 November 2015

Why on earth would anyone marry a man with Aspergers?!

I suppose I got into a relationship with Ethan for two main reasons 1) he grounded me and looked after me and was reliable and strong at a time when I didn't otherwise have those things in my life and 2) I felt I could help him in the areas where he obviously struggled.

It was clear to me quite early on that Ethan had trouble connecting with other people, engaging socially and understanding social situations and cues. But I wasn’t aware of Ethan’s Aspergers until much, much later by which time we were married and had children. The relationship was difficult. We were so different. He frustrated and embarrassed me frequently. I remember being  almost as struck with anxiety as he was before a night out, nervously hoping that this night he would make the effort , that he’d speak to people, that he wouldn’t behave like a miserable git that no-one wanted to be around! I think that was one of the biggest issues early on: that his behaviour and the lack of effort he made with people just made him appear miserable and rude. And why would I want to be with someone like that? We spent a lot of time arguing about how he came across at social occasions and how I’d feel let down by him. Looking back, it must have been hugely frustrating and lonely for him – seeing me breezing about easily chatting to everyone on a night out and knowing that the fact he couldn’t do this – that he could barely hear people and didn’t know how to talk to them – would result in me being angry and upset with him later and there was nothing he could do about it. But at the time, it was inconceivable to me that someone couldn’t learn how to speak to other people and when my efforts at tutoring him in the art of sociability didn’t work, I just saw it as him choosing to be inherently rude and unsociable. A few times we nearly split up – I called off our first engagement. But somehow we stayed together. I think I saw myself as being the person who could change him, who could transform his life and outlook. I’ve always been a sucker for people that ‘need’ me! The other, more positive, factor though is that his unique blend of traits bought with it some characteristics that I found really attractive. In one sense he was hard work but in another, he was really easy. He didn’t want to go out all the time, he wasn’t out with his mates neglecting me in the evenings, he didn’t go to football all day on Saturdays (since then, I’ve realised that he has simply replaced football/sport with his computer!), he was content with me – just me. And being with him was easy – he didn’t talk a lot, I didn’t have to make the effort with him all the time, I could be grumpy and monosyllabic and he didn’t mind. He was always there, always faithful and loyal, always on my side and very rarely complained about any aspect of me – the fact that he was so quiet and simple and stable anchored my flitting, emotional, busy, complicated life. Still today, I am grateful for his simplistic outlook, his unswerving support of me and his plodding faithfulness.

I suppose I thought the big things – his loyalty, his dedication, his hard work, his love for me, his commitment – were worth more than him being able to socialise or being positive. I grew to need him, however much he infuriated me. 

Our relationship and subsequent marriage has never been easy. In the early years I often fantasised about divorce. I felt lonely often, despite being surrounded by friends, and was regularly frustrated, hurt, angry and disappointed by him and his reactions to situations. I spent years trying to artificially carve out friendships for him which never amounted to anything. I suppose I felt I needed my decision to be with Ethan endorsed by the fact that other people wanted to be with him too. The fact he had no real friends was a constant reminder to me that he was just not a likeable person, which just reinforced my doubts as to why I was with him.
Since Ethan has been diagnosed with Aspergers though and I’ve learnt about and understood the syndrome, life together has got better; good even. I no longer try to turn him into something he can’t be which means we’re both less frustrated. We’ve, almost without realising it, made concessions and compromises in our lives that make space for the other person and their needs and, I must credit Ethan here, he has changed. I couldn’t see it while it was happening – it wasn’t happening quickly enough or in the right direction but, looking back to our first years of marriage, he is so much more sociable. He’s learnt tactics for monitoring his behaviour and, although it’ll never come naturally, he’s learning to adapt to circumstances and other people’s needs. He’s even made some friends!

It’s been a rocky, sometimes painful road. But I’ve learnt so much about myself and discovered that I’m married to a unique, complex, incredibly loyal and faithful man who never gives up on us despite the fact that life and relationships are so hard for him. I guess any marriage – any joining together of two totally separate individuals with different hopes, dreams and personalities – is going to be hard. In the end I think it boils down to whether the two of you are prepared to make it work, however much that demands of you. We both needed to be willing to change – not the essence of who we were but how we behaved and reacted, and we both needed to be willing to have our views, perceptions and expectations of life fine-tuned by the other. 

As I write this, Ethan is making me a bacon sandwich before heading off to work for ten hours in the gloom and rain of the day. And he knows, as he does that, that I’m writing this blog post about how flipin’ difficult he is! He is, at heart, a kind and loving man. I’m a lucky woman.

Wednesday, 11 November 2015

Gaining his perspective

I’m currently writing, with Ethan, a chapter for an e-book on what it’s like (for both people) to live within an AS/NT partnership. Our topic is family occasions and the idea is that I’ll write about some family occasions that I’ve experienced with Ethan and then Ethan will give his take on the same situations. 
The process of comparing our different views to the same events is enlightening!
Without giving too much away, I talk about a family Christmas at my sister’s house when about thirty people were having a jolly old time: and two weren't. Ethan spent the evening switching between looking vacant and detached or disapproving and contemptuous. Sometimes he managed to roll out all four looks simultaneously. I was miserable because it was yet another social gathering in which Ethan was being rude, disengaged and downright unpleasant. And I felt embarrassed, frustrated, upset and angry at him. I just wanted us both to be able to relax and have a nice time. I distinctly remember looking past the faces of a roomful of laughing, happy, sociable people during a game of chubby bunnies and seeing Ethan glaring at the scene unfolding before him with a look somewhere between confusion and disgust, and my heart genuinely sinking into the pit of my stomach. In my head (as it had been many times before and has been since) that was the end for us.
When Ethan showed me yesterday what he’d written about the same occasion, I realised that I’d never actually asked him before to explain to me what was going on inside his head at the time. Ethan talks about the noise, about trying his hardest to engage and be sociable but having to almost instantly give up on conversation with people as the surrounding noise of people, music, kids shouting and other conversations, made it impossible for him to hear what a person was saying to him. He talks about how he was noticing the dog and cats and seeing little fingers touching food on the buffet table – wondering about the cleanliness of the house and whether, prior to us arriving, the dog and cats had been sniffing around the food too. He was thinking about how bright the room was and the poor quality of the lightbulbs. Then, during the playing of Chubby Bunnies (a custom he’d never heard of, let alone encountered) he was genuinely confused. To him, this wasn’t a game. It was gluttony. There was no point to it, nothing fun about it, no challenge to it; just another opportunity for people – even children – to stuff their faces with more unhealthy food. Thus began an internal scrutiny of the parents in the room for letting their children gorge themselves on so much sugar. I don’t know what he must have thought when I had a go – who did he have to blame for that?!
I realise that all of this doesn’t make for a very fun person spec. But it does explain where he was coming from. His brain simply could not by-pass the practical aspects of what he was seeing: how is stuffing yourself with marshmallows until they drop out of your mouth fun? Sensually, he was over-stimulated, anxious and completely out of his comfort zone: he was drowning.
My reaction was to glare at him, to mutter quietly to him about what a miserable, awful person he was, to tell him how he had ruined the evening for me and probably for everyone else. Psychologically, instead of throwing him a rope, I pushed him further under.
Things are a lot better these days. We’ve had a diagnosis for one – so a whole new level of understanding has opened up to us both. And we’ve learnt to cope better with social situations. It’s required us both to adapt – Ethan more than me – and to make some changes to what might be our default settings. And we’ve adopted some techniques and compromises to make life easier.
We’re still together so we must be getting better at understanding each other’s worlds. Writing the chapter for this e-book is just another part of the journey.

Sunday, 20 September 2015

It's not my fault!

Definitely near the top of my list of most annoying traits of a spouse with Aspergers Syndrome is his need to find someone to blame, outside of himself, for everything that goes wrong.

In Ethan’s case, the trait expands to everyone in his immediate family. But far from being endearing or protective or loyal, it’s just silly and annoying – as if we are an extension of him and nothing that is any part of him can ever be to blame for anything.

Last week, when I was re-telling how Oliver had been told off for swinging on the goal post at football training, his defensive response was ‘He was probably bored.’ When I pointed out that this coach gives up every Saturday morning to ‘train’ a distracted bunch of four and five year olds for very little money often in the pouring rain and does an amazing job of it and that perhaps we should be grateful rather than critical (and that no-one else was swinging on the goal posts), he changed his stance to ‘I didn’t mean that, I meant Oliver was probably just hanging around doing nothing’ ARGH.THAT MEANS THE SAME THING - JUST IN DIFFERENT WORDS!!! I gave up.

The same week, Ethan took a cheque to work. It had been given to us by the school PTA to reimburse us for something and had been sitting around on the kitchen side for weeks. Instead of cashing it, Ethan lost it. Rather than saying sorry, he snapped at me: ‘Why are they giving us cheques? No one does cheques any more. Why couldn’t they just do a bank transfer like everyone else?’ Frustrated that he’d lost the cheque and unable to handle the concept of it being his fault, his blame of the school for giving him a cheque in the first place was almost caricature-style funny. Except it wasn’t, because I’m living with this every day and it’s frustrating and unattractive and depressing. Next he told me that I’d have to tell the school we needed a new cheque. Erm, no because 1) you lost it, not me and 2) it’s ‘our’ mistake not theirs (I’m even willing to share the blame when it’s not directly my fault!). Asking them to write us another cheque which then has to be countersigned by two people because we’ve lost the first one is just embarrassing. 

On the plus side, he’s just made me an Ovaltine – even though he knows I’m writing a blog post moaning about him. And the other night when I couldn’t sleep, he got up with me at 2am hugged me, made me (another) drink and stroked my hair, even though he had to be up at 6am for work. He’s very loyal and faithful – but I wish it wasn’t at the expense of him being willing to admit that we, him included, get things wrong sometimes and it’s no-one’s fault but ours.