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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. 

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!