Yay! It’s the holidays… (with a family of neurodivergents)

My middle child, Sam (ADHD and autism) summed it up best when he disparagingly described a holiday as, ‘…still being with your family, but without any of your stuff’!

The plus side of the long school holidays, when you have neurodivergent (or any) kids, is not having to navigate drop-offs and pick-ups, checking and rechecking school bags, battling over homework or facing the daily crushing comparison (I know I shouldn’t) with all the other happy, well-adjusted, confident, sociable little darlings in the school playground.

The pay-off for all of that, is endless empty days that need to be filled with enforced fun.

Image AI generated

 

Picture the scene…

We’re away for a few days in Llandudno and enthusiasm is waning.

I suggest a game of Kubb on the promenade. Just getting them to agree is quite the undertaking (Sam: ‘people will look at us’, Oliver: ‘effort’) but, ignoring their protests, I set up and the game gets underway.

I’d read and inwardly digested the rules ahead of time – knowing the impossible amounts of patience and processing it would require for us to decipher the rules together. So I begin by explaining that Sam and Oliver start with all six batons.

Ethan (autism and ADHD) picks up three of the batons and walks over to his side of the game.

I take the batons off Ethan and repeat that the boys start with all six batons.

Sam and Oliver take their turn. Oliver throws his baton with (way too much) gusto. It flies down the promenade. Ethan shouts.

To give Sam his due for his reason for not wanting to play the game, he’s right – people are looking at us.

On Sam and Oliver’s next turn, to soften the blow for Ethan, I pick up the batons as Oliver throws – knowing Oliver won’t be able to help hurling them (he has no fine motor skills), and Ethan won’t be able to help overreacting (he has no fine tolerance skills).

A few yards away, a woman has begun to film our happy family game on her phone.

 

Knock yourself out

Just as I bend down to pick up the most recent baton Oliver has lobbed, he throws another. It whacks me, full force, straight in the jaw.

Ethan shouts (louder this time). People have moved beyond ‘looking’ to staring. The woman stops filming.

Oliver repeats and repeats and repeats and repeats his thought process as to why he chucked the baton even though he knew my head was there. If any of us try to interject or even move during any of these four retellings, he has to start again, from the beginning. I don’t know whether the need to repeatedly repeat, with no interruptions and all of our undivided attention, is part of Oliver’s OCD, autism, ADHD or all three but, part way through the third retelling as my jaw throbs, my patience snaps.

“For god’s sake Oliver, shut up and just say sorry,” I yell. “From now on you’re taking a bloody ADHD tablet every day and I don’t care about the side effects.” I instantly feel evil.

More stares. Some smirks.

We play on. We’re on ‘holiday’. The boys have been forcibly removed from their screens and I’m determined we will make memories (and, to be fair, we did).

The boys are winning. Ethan is getting irritated. Not being able to cope with losing is a trait often linked with autism and, just because you’re 52 doesn’t mean you grow out of it.

 

Whose rule is it anyway?

He starts arguing with me about the rules: stating it’s impossible for us to win (it isn’t). I try to calmly explain why it isn’t impossible. Ethan isn’t hearing what I’m saying because he has his own thought process which cannot flex to what I am saying. I know this. But I’m human: I’ve read the rules, he hasn’t and, while he’s arguing and stating, as fact, observations that are incorrect, the boys are fast losing interest and the dog (who has been tied to a bench a couple of metres away) is starting to howl – so I’m frustrated. I shout (I’m now shouting almost as much as Ethan). And use the F word.

At which point, Sam (bless him) with all the patience and wisdom of a world-weary 15 year old (and also possibly because people are staring again), steps in and calmly explains to Ethan how he and I could still, theoretically, knock all our blocks down and win (which we all know isn’t going to happen).

But Ethan’s mind set will not shift (or, at least, he won’t admit to being wrong, which is quite another thing). I tell him to move on and stop spoiling it for everyone (who am I kidding – this game is spoilt beyond redemption). The dog continues with his incessant howling and we all play on. We are now all playing Kubb with a huge ‘Kubb on’ (sorry) and collectively just want the ordeal to end.

Thankfully, a couple more rounds and the boys have won.

The stress of the game has almost been worth it for the relief of it being over. Until Sam discovers that he’s lost his ear pods somewhere along the promenade, and the next drama begins…

Choosing what to focus on...

Have been away a long time.

Although, actually, in terms of my life and finding positive ways forward, have been very present. Which is why I've been so absent on this blog. I've been too busy making things work to write about things not working!

And perhaps it's partly not focusing on what's wrong - in my marriage, with my husband, in our family, that's helped me to find enough of what's right to find a way forward.

I've found that moaning about my husband (on this blog or face to face) isn't always helpful. Sure, it's definitely good to vent at times, and to share experiences and to know that other people are facing the same challenges and that we're not a) alone b) crazy c) just the partner of someone with Asperger's but are so much more than that...

However, sometimes, it's also important to look past the frustration and to chose to focus not on the negatives but on what is positive about our partners (I know that my husband would never, ever cheat on me, he's amazing at sorting out practical problems, he does his best - most of the time, he criticises me far less than I criticise him...) I know that not everyone is so lucky and that some days it can be really hard to find anything positive to be thankful for or to focus on, but it's a path that I'm trying to take.

Since last writing a post on this blog, I've discovered that my ten-year-old son also has Asperger's Syndrome. In his innocent, childlike way, he's very open to telling people that he has a different kind of mind and, so far, his friends are all very accepting of it (far more than my generation of adults are of each other - my partner still hasn't told anyone about his Asperger's). At his tender age, my son seems to have found a peace within himself (he has his moments, obviously...) and has a healthy self-awareness so that, even when he's having his meltdowns or feeling overwhelmed, he recognises it for what it is and can get his perspective back pretty quickly. I'm glad, for him, that he's got an understanding early on of who he is and how his mind works and that, so far, his peers seem very accepting of the various issues amongst them (one has dyslexia, another has Asperger's and another has anxiety... it's almost become 'normal' not to be 'normal'! Plus they all get an extra 15 minutes in their SATs which has to be a bonus!)

So, I'm sorry to have been away so long. But I'm glad that, for me and my family, we're finding ways to move forward - with all of our hangups, personalities, strengths and weaknesses. And I do hope that you are too.

Negative or practical?

Argh! Why do they seem to delight in finding fault whenever possible? Why, when there's a choice between seeing/pointing out something positive and helpful or seeing/pointing out something negative and unhelpful, do they always go for the latter? Have just shouted at my Aspergergic other half, in full hearing of my 11-year-old daughter, that I feel like stabbing him....not ideal bedtime conversation for my daughter to overhear but was exasperated beyond belief. He's been saying to me for ages that we should get our very flexible 6-year-old to gymnastics classes (by 'we' he obviously means me), so I've done it-arranged a trial session for tomorrow at 4pm which he will have to take Oliver to as I'll be at work. When he discovered it's a few miles away and lasts for an hour his response was 'What are you going to do when I'm working? You can't drag Sam there for an hour. I think they can only really do clubs that are in the village' (which narrows it down to swimming and football!) Reading this back I can see he was probably just thinking out loud and genuinely wondering how it would work with an 8-year-old in tow. And maybe, after 17 years, I'm like a tightly coiled spring poised to snap at anything resembling a negative reaction from him. But, flipin heck, he's been on for ages about getting Oliver to proper gym lessons (as opposed to a school hall with a couple of benches), I've done it and he's still moaning and pointing out everything that's wrong. It does crush the spirit somewhat.  The downside to my righteous indignation, however, is that he might have a point...

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!

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. 

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?

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.