The importance of language

I’m a writer. I believe that language creates the world. That’s why, at times like this, it’s so important to watch our language.

‘We’re stuck at home for the next few weeks’ creates an entirely different mental space than ‘We’re at home for the next few weeks.’

‘I can’t cope’ is a self-fulfilling prophecy, whereas ‘I’m finding this hard but will get through it’ gives you strength.

‘I hate my wife and kids’ generates resentment in your chest, while ‘Finding my family difficult at a difficult time is perfectly normal’ keeps your relationships healthy.

And saying, ‘It’s not a problem, I’m enjoying this downtime,’ is better than screaming, ‘Holy shit, it’s the end of the world and we’re all going to die!’

Changing the language you use is a quick and easy way to change your mood and your attitude. Our body tends to believe what we tell it. Smile and it makes you feel good. Stand up straight and lift your chin, it makes you feel confident even when you’re not. Force yourself to breathe slowly and deeply when you’re panicking, it calms your body down because if you’re not hyperventilating, there’s nothing to panic about, is there?

The opposite is also true. Hunch your shoulders and huddle up, you feel edgy, as though you need protection from the world. Frown and you feel bad. Laze about and you lose all motivation to do anything that helps you.

So start telling yourself the reality in which you want to live.

What applies in your own home applies to the world outside. Be careful what you read. Be careful what you listen to. You can’t have a healthy mental space when you fill it with negative words.

A brief survey of headlines is enough to make you die of fear. ‘Killer disease’ is far more terrifying than ‘Covid-19’; ‘chaos’, ‘panic’, ‘tragedy’, ‘death toll’ are much worse than ‘hope’, ‘solidarity’, ‘positivity’, ‘recovery’.

So in this time of crisis, do what I tell my children when they’re moaning and whining: use your words.

And forgive yourself the occasional weakness, outburst, rant or cry – you’re only humsn, after all.

Home Support during lockdown

As a person with autism and depression, and a wife with both autism and Emotionally Unstable (Impulsive) Personality Disorder, I have home support. This means that twice a week, a support worker comes to my house for three hours to support me with my activities of daily living – making a menu plan, cleaning, washing, sorting the post, basic self-care, and all the things I don’t do when left to my own devices.

This help is essential, not just to keep me safe and hygienic and stop me getting into a mess with my finances and medication, it is my only means of ‘offloading’ my obsessive thoughts and preventing me descending into depression or worse. When you have autism, your thoughts often spiral out of control, particularly when you don’t have time to yourself, and left to their own devices, they can take you to a dark place indeed. Support workers help you put your thoughts safely to bed.

In my book, I explain my need for neurotypical support using a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t better or worse than neurotypical people, we simply have different wheels suited to a different surface.

So I need home support. Not only that, Social Services deem that I need six hours of support a week. I’ve thought carefully about this in light of coronavirus, and discussed it with my autism support service, and since caring for vulnerable people in their own homes is one of the government’s exceptions to the ‘stay at home’ rule, I don’t see anything wrong in continuing to have a carer.

My support worker engages with four other households. The way I see it, if our five households are doing what we should (i.e. staying at home and not interacting with family members), and she’s doing what she should (not seeing friends and family), then we’re a closed unit. If she gets coronavirus and passes it on to us, it will end with us – we certainly won’t be passing it on.

And this is why I believe it’s okay to have a support worker come round twice a week, but not okay to have friends or family round. My support worker is not a friend – she’s a key worker in the field of social care carrying out care in the community. She is here for work, not socialising.

Unfortunately, not everyone in my wife’s family sees it this way.

If I see my support worker, they think they should be allowed to visit too; and if I don’t allow them to visit, then I shouldn’t be allowing a support worker into my house either. That’s right, they think two people who are unable to live independently without support at the best of times should now live independently without support at the worst of them. All in the name of ‘fairness’.

There’s a line from the criminally-underrated What About Bob? where Bill Murray says something like, ‘Treat people like a telephone. If there’s a crossed connection, you just hang up and dial again.’

I used to believe that. Now I think perhaps there comes a time when you have to rip that telephone from the wall and throw it on the bonfire.

Day Five of Home-Schooling: teachers, you are busted!

I saw a lovely thing on Facebook last night from a school up in Surrey. It told its parents that what we’re doing right now isn’t home-schooling. Home-schooling is a choice where you considered things, planned for it, and were ready – this is more like distance-learning. But in reality, it’s trying to stop the spread of coronavirus.

It said that parents have always always been the child’s primary educator, but are not trained teachers, and that if you feel it’s better for your family to play in the garden, bake, or watch TV, that’s your right and there’s nothing to feel guilty about, because these are exceptional circumstances.

And it said that it’s impossible to facilitate distance-learning with a primary-aged child and work from home at the same time, so if you’re doing that, stop. Your primary focus is your job and your survival. You’re not a superhero. They’re not expecting miracles.

I thought it was great. Very insightful and reassuring.

Then I got an email from the headteacher of my school down here in Dorset sharing some of her thoughts. She said that home-schooling is a choice, whereas this is more a necessity. She said that parents have always always been the child’s primary educator, and that if you feel it’s better for your family to play in the dirt, bake, or watch TV, that’s your right and there’s nothing to feel guilty about. And she said that if you’re working from home and juggling home learning at the same time, STOP – you’re not superheroes. Your focus should be your job and survival.

Sound familiar?

Looking on Facebook, it appears that many headteachers up and down the country have had the exact same thoughts as each other at exactly the same time. How weird!

You know when every kid in the class copies from the same book and they put it in their own words so they don’t get accused of plagiarism? Teachers, you are busted!

Now, I don’t mind that they’re all copying from the same source. It’s a good message and it deserves to be spread far and wide. But don’t pretend as though it’s something that just occurred to you. And perhaps next time, don’t use many of the exact same words!

The only people who don’t know about coronavirus…

…are the assholes in the Department of Work and Pensions.

My wife receives PIP (Personal Independence Payment) – what used to be called DLA (Disability Living Allowance) – to help her cope with her needs.

When they came up with PIP, the government outsourced the transferral of people over from DLA to an external company called Atos, whose remit was pretty much, ‘Cancel everyone’s benefits, make it next to impossible to appeal, and see how much money we can save.’

Now, delegating the decision on who gets welfare to private industry is essentially the government saying, ‘We don’t give a shit about the needy and we can’t do our jobs so let someone else sort it out,’ and that’s how it worked in practice. Atos would reject almost all applications for PIP and then make the appeals process a logistical and administrative nightmare in the hope that a significant proportion of claimants would be incapable (i.e. too vulnerable) to appeal. You know, a really caring, morally upright philosophy that proved so popular they had to change their name to Independent Assessment Services to avoid the backlash.

That’s the reason why, when they moved my wife from DLA to PIP, they decided she was 100% capable of looking after herself on her own, despite her having supporting documents from Social Services, her doctor and her autism support service to say she was quite incapable of that. It then took six months of appeals for them to concede that, okay, they were wrong, she’s a nutbar.

The DWP are the people who ask someone with Downs Syndrome, cerebral palsy, a hole in his heart and severe scoliosis that confines him to a wheelchair to attend a fitness-for-work interview. They’re the people who ask terminal cancer patients when they think they might get better. They’re the people who at my interview asked me how to spell autism, and then told me I must be really good at Sudoku.

So it really shouldn’t come as a surprise that they haven’t noticed we’re in the middle of a global health crisis.

Today my wife received a letter from the geniuses at the DWP saying that, as she’s had PIP for a year, they need to see if anything’s changed. There isn’t an option to say, ‘Nope, still autistic.’ There is, instead, a 24-page form that must be filled-in in excruciating detail, with corroborating evidence from Social Services, the autism support service, and her GP, to be returned by the 17th April, or they will cut her off.

By my reckoning, that’s three weeks away. We’re now only three days into a three-week lockdown where we have to stay at home, everyone’s off work, doctors, social and care services are stretched to breaking point, and we can’t see our families for support filling in a complicated, misleading form. Are they freaking joking?!

I’d only just managed to calm her down about coronavirus when this little present landed on our doormat like a wet turd to stink out the house we can’t leave. I was never a fan of Jeremy Corbyn, but I can’t help thinking that this kind of shit would never happen under a Labour government.

Day Four of Home-Schooling: the health risks of spending time with your children

In the same way that suffering through The Best of Frank Sinatra eight hours a day while working in a bookshop ended with me buying the CD when I left, the rather annoying Cosmic Kids Yoga has, after four days, become something I actually look forward to doing. I can even overlook the praying hands ‘namaste’ stuff.

There’s just one problem left: it‘s bloody difficult.

Today, for example, we did the Jungle Safari, and oh my gosh, it races through 13 minutes of poses and stretches so quickly I was out of breath by the end. I had no idea I was this out of shape. There’s my kids pressing their foreheads to their feet; here’s me hunched over like an arthritic octogenarian still nowhere near his knees let alone his ankles. If you think you’re relatively healthy, check it out – it might disabuse you of some misconceptions.

I ache all over. I’ve already pulled muscles in my butt, my groin and both upper thighs. I’m hobbling around groaning like I just ran a marathon, all from writhing about on my lounge carpet. Who’d have thought the living room floor could be so damaging?

Of course, spending all day with your kids also sends your stress levels skyrocketing. We shouldn’t be awarding honours to public officials but to teachers for bearing with our little monsters. Yesterday my four-year-old erupted into one of the year’s worst tantrums – stamping feet, slamming doors, projectile tears, the works – because I took the garden hose off her. Why? She was chasing our 22-year-old cat around the garden, continuously spraying her. Not good.

There’s also the difficulty of the four-year-old being able to read, write, play football, tie shoelaces and construct an imaginative narrative, and the two-year-old wanting to do all those things with her big sister but being incapable of any of them. So either the little one is screaming and crying because she wants to do what she can’t, or the big one is screaming and crying because she wants the little one to leave her alone, or else ‘play properly’ i.e. the way my bossy eldest wants her to.

I had a bittersweet moment last night when I heard the youngest talking to herself in bed. I crept up to the door and spied around the crack. My eldest was fast asleep; my youngest was sitting up with a torch and a book reading the title over and over again, trying to teach herself to read: ‘Me and My Mummy, Me and My Mummy, Me and My Mummy.’

So in the evenings I’ve been getting on the exercise bike as a stress reliever, and I’ve discovered that that is far more dangerous than any other household activity, because I think I might have broken my penis.

It’s something apparently far more common than practically anyone realises, so it’s important to make people aware of the potential damage they can cause their best friend when they put on lycra and climb into the saddle.

No, I didn’t get it caught in the pedals. No, I didn’t ride over it. After about half-an-hour of cycling, I reached down to scratch an itch and, well, there are no words to describe the terror of being able to feel two testicles but nothing in between.

I scrabbled around like someone who’s lost his wallet. ‘Where’s my dick? Where the hell’s my dick?’

A quick inspection revealed it was still there – it was just completely and utterly numb. Entirely free of sensation, like my manhood had been replaced by a rubber sausage. Oh sweet Jesus!

After a panicked hour, I could finally feel it again. And then I started researching, and discovered I wasn’t alone.

When you sit on a chair like a normal person, your weight is distributed between your buttocks; but when you sit on a bike saddle, it puts pressure on your perineum, squashing the nerves and blood vessels that lead to your genitals. Indeed, meta analysis of 62 studies showed between 50% and 91% of cyclists experienced genital numbness and 13% to 24% had erectile dysfunction. This is because, as other studies show a narrow bike seat can cut blood flow to the penis by 66% and even a broad one by 25%. In some cases penile numbness can last up a week (a week! Can you imagine?!).

So, is a rubber manhood just part and parcel of cycling, something to put up with and get used to? Apparently, that’s an emphatic no.

According to cycling health specialist Andy Pruitt, ‘Numbness of any kind or duration should not be tolerated, period…Imagine taking an electrical cord and garden hose and driving over them with your car again and again and again. They may rebound initially, but over time they’ll stay collapsed and won’t function as well.’

Yikes. By the end of this crisis, I’m either going to be a hundred times fitter or else a crippled eunuch!

How hard is it to follow rules?

Maybe as an autistic person, it’s easier for me to follow rules. Nonsensical they might sometimes be, but rules are rules. I’m very black-and-white on this. I acknowledge that there are grey areas, extenuating circumstances, and human frailty, but we all know what we’ve been told to do and actions have consequences.

At a time like this, we can’t just follow the rules – we have to be seen to follow the rules. This isn’t a ‘keeping up with Joneses’ sort of thing, this is setting an example that people will stick to. What happens if the neighbours see us allowing a family member to visit? They think, ‘Oh, well if they’re having someone over, I might as well have someone over too.’ And before you know it, the whole thing falls apart because everyone makes exceptions. That’s why we have to follow the rules.

After yesterday’s war with my wife, she went out to the shops anyway in search of eggs because she wants to bake – I can’t exactly chain her up. But she couldn’t find any eggs. Never mind.

I thought that today, things were improving. She seemed calmer, more rational. While I was giving the kids a bath, I heard her ring her mum briefly – no problems, that’s absolutely fine.

What was not fine was her mother turning up at our door an hour later with a box of eggs that my wife had asked her to bring round.

I didn’t let her in. Of course I didn’t let her in. We are not allowed to see family members who are not part of our household, even if they’ve driven fifteen miles to see us.

She stood on the front lawn and asked me to open the windows so she could talk to my children, who were jumping up and down with excitement that Granny had come round. I said no – they can see her and talk to her through the glass. She made out like I was being ridiculous. My kids started crying. My wife started shouting.

Instead of engaging with my kids through the glass, Granny stormed back into the car, slammed the door and drove off at a rate of knots, leaving my children in bits and my wife fuming at me.

In the past hour there have been multiple phone calls about how awful I am, and my children are calling me mean for upsetting Granny. Currently, my wife is trying to find someone who can bring her some flour as she wants to bake, which is hardly endearing her to the people she’s asking to go out and get it for her.

But hey, at least she got her eggs!

It’s not meant to be this hard

When your wife has autism and Emotionally Unstable (Impulsive) Personality Disorder, life isn’t going to be easy. I’m pretty sure, however, it’s not meant to be this hard.

When Boris Johnson announced last night that we can only leave our house to go to essential work, buy essential food, look after a vulnerable person or exercise (once a day), and specifically that we should not see friends or family members who don’t live with us, it was a time for couples all over the county to turn to one another and say, ‘It’s okay, we’ll get through this. We’re in it together and we’ll emerge stronger on the other side. With love and mutual support, and a sense of humour, we’ll cherish this time as a family. Nothing can break us apart.’

That didn’t happen in my household. World War 3 broke out in my household.

‘They can’t stop me seeing my dad,’ was my wife’s response.

Initially, when my wife met each new restriction and condition with, ‘They can’t do that,’ I took it literally to mean they can’t do that, so reminded her that yes, they can: they’re the government, the ones with the tanks and the bombs and the soldiers. They can do whatever they want.

On reflection, I decided that when she said, ‘They can’t,’ what she really meant was, ‘I’m scared, I don’t want to do that, this is going to be hard, hold me.’ So I softened my approach to simply supporting her rants.

Last night has made me realise that I was right the first time – she does really think the government literally can’t stop her from doing what she wants to do.

Having Emotionally Unstable (Impulsive) Personality Disorder means you struggle to control your impulses. The desire to do something results in the thing being done, with no consideration for the consequences and probable negative outcomes. And if someone tries to interject between the desire and its gratification, oh boy are they going to get it! Tantrums and behavioural explosions are par for the course, as is the sudden swing from ‘I love you, I need you, I can’t do anything without you’ to ‘How dare you, I fucking hate you, I’m ringing my lawyers in the morning!’

So, as I listened to the Prime Minister asking us to be decent human beings and abide by a few rules so that – God forbid! – we save thousands of lives, while most people might have been thinking of themselves and what it meant for them, all I could think was, ‘Oh hell, get ready for the fireworks.’

And fireworks there were.

‘They can’t stop me seeing my dad.’

‘They can and they have.’

‘He didn’t mean I can’t see my dad.’

‘He literally just said you can’t visit family members who aren’t part of your household.’

‘He can’t stop me from seeing my family.’

Everybody is in someone’s family. This doesn’t work if we all make exceptions.’

She looked at me with pure hatred on her face.

‘You can’t stop me.’

And then the screaming and the shouting started, because by stopping her from doing what she wanted, I became the enemy. It’s no longer the fault of the virus or the government, it’s mine. I am truly the devil.

Midway through, she declared she was going to ring her mum and tell her what an evil prick I am. I begged, pleaded, demanded that we talk it out between ourselves, that we deal with it as husband and wife, like a family, like adults, like rational human beings. We’re meant to be a team, and inviting someone to interfere in our marriage for the umpteenth time is not very sporting.

It was all to no avail. She rang her mum, burst into tears, said I wanted to have her arrested and I wouldn’t let her see her dad.

‘That’s not entirely true,’ I said, and she screamed at me and called me a liar, and her mum said she doesn’t see any reason why my wife can’t visit her dad (because clearly the rules don’t apply to my wife’s family), and I’m being unreasonable, and I should think about the effects of my behaviour on my children, I’m needlessly scaring them and being a bad dad.

I feel so betrayed. We’re married. We’re supposed to support one another. We’re supposed to deal with issues between ourselves. We’re not meant to run to our mummies and tell them the mean man we married isn’t letting us get our own way.

After the phone call, my wife told me she’s going to take the kids and move in with her dad for the duration of the coronavirus, and I’m not invited. In no uncertain terms, I told her that would be the end of our marriage.

She insisted she’d keep visiting him, and I said that she’s quite welcome to move in with him by herself if it means that much to her.

We’ve been given rules to follow, and as responsible, socially-conscious, moral, upstanding and good people, the onus is on us to do everything we can to stop the transmission of the virus and thus save lives. I don’t understand what is so difficult to grasp about this. Her dad has multiple underlying health conditions anyway.

So, today she’s done everything she can to punish me for stopping her from seeing her dad.

‘Come on,’ I said, ‘we’re in this together.’

‘No we’re not, you’re on your own.’

‘We need to support one another.’

‘You can take a run and jump if you think I’m going to support you.’

‘Please, we need to be civil, if not for our sake then at least for the kids.’

‘No. You don’t let me see my dad, I won’t be civil. I’m divorcing you after this anyway.’

‘So you don’t love me anymore?’

‘No, no I don’t. I hate you. I hate everything about you.’

You know, really mature behaviour from your wife and the mother of your children.

I’m doing my best here. I’ve been trying to keep her calm this entire time; I’ve been trying to look after my family as best I can; but I can’t do it all alone, and I really shouldn’t have to. Not once has she asked me how I’m doing, how feel.

Every time I glance in her direction, she snaps, ‘Don’t look at me!’ So I kept the kids entertained today. We did more yoga, some writing, imaginative play. I took them for a short bike ride. I planned our meals for the next ten days so we don’t need to go out. I played with them in the garden. I cooked lunch. I cooked dinner when she refused to do it.

World War 4 happened this afternoon when she said, ‘I’m just popping out to the shop to get some eggs.’

‘You can’t just “pop out to the shop” anymore. We can’t leave the house except for essentials.’

‘Eggs are essential.’

‘We have enough food for the next ten days, and much longer than that if needs be.’

‘Are you telling me I’m not allowed to go to the shops now?’

‘We’ve been told to avoid shopping except for essentials. Going out to get one item when we don’t need it is hardly essential, is it?’

‘So you won’t let me go and get some eggs?’

‘No, we need to do as we’re told.’

‘For fuck’s sake, for fuck’s sake, you can’t stop me going to the shop! I want eggs! I want to bake!’

‘It’s day one of this – we’re going on be shut in together for at least three weeks, probably more. Please, let’s make it bearable.’

‘No, I’ll do what I want.’

In all honesty, if the coronavirus wasn’t going on right now, I would walk away from this toxic situation. Of course, without coronavirus, perhaps my wife wouldn’t be acting like such a crazy person.

The trouble is, some words once spoken can’t be taken back; some things once broken can’t be repaired; and when someone acts selfishly, unsupportingly, and irresponsibly during a national crisis, and makes it far harder on the people around her than it needs to be, sometimes that changes how you see that person.

We’ll revisit this conversation after the crisis is over. In the meantime, we just have to get through it.