Clicking in the gallery

We took the kids to Tate Britain at the weekend. It’s a good thing to do first thing on a Sunday morning – we can drive there easily, it’s not busy, and we can get coffee and pastries in the café which incentivises the whole trip for all of us.

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It was the last day of the Turner Prize exhibition so I had a chat with a guy at the front desk about whether it was suitable for children. I mentioned nudity, and he started talking through whether there were naked people in any of the pieces. I had to clarify that nudity wasn’t the problem, it was what the potentially nude people were doing, since I’d accidentally once walked Sam into a room of Gilbert & George works which were utterly inappropriate. Oh, no, no sex, he said.

And he was right, no sex. But the four nominees for the Turner Prize had all presented video works, two of which were about people who were being or had been killed. Of the other two, we all enjoyed some of a film about the legacy of colonialism in Tripoli. Yes, really. It was beautiful and interesting, and Stella only asked to leave four times.

Video art is perfect for Sam. He is drawn to screens, and these screens were huge. Each artist’s room had just one bench and people came and went so it was easy to manoeuvre Sam’s wheelchair in and out.

James took Sam into a film about queerness and Scotland which seemed safe for kids. For most of the time it was silent, with sweeping footage of ancient standing stones in remote Scottish islands. The other visitors were sitting silently and Sam was engrossed. The only noise was the rhythmical clicks of Sam’s tongue.

Sam has dystonia, which means he has involuntary movements in his muscles. It makes it very hard for him to control his own movements which affects his ability to sit, walk and talk. It also affects the way his tongue works, in that it moves a lot but not in a way that makes eating possible. This means Sam doesn’t control his saliva, and he makes a clicking noise sometimes as he moves his tongue within his mouth.

When he was first at nursery the staff would call him “Dolphin Boy”, for the little clicks he would make throughout the day, like he was trying to communicate on some level unintelligible to mere humans. He would make the sound when he was relaxed or interested in something – never when he was stressed or uncomfortable, when his mouth would be tense. He would often click when he was lying in bed, or when we were hanging out at home and he was content. Over the years he has done it less.

When Sam was younger we were self-conscious about him making noises, particularly in very quiet places. For a child who doesn’t talk, Sam can be quite noisy. He often kicks which makes his wheelchair squeak, or makes noises to complain, or shrieks if he is excited. It doesn’t matter if you’re in open, noisy areas but in silent galleries (or cinemas, restaurants, planetariums, theatres) the noises can seem loud and potentially disruptive. I would hate the idea of other people being bothered by the noise. I’m the kind of person who would rather not eat sweets than risk making loud crackles with a packet of fruit pastilles in a cinema.

Over the years we have come to notice or care about this less and less. If Sam is making a lot of noise he is often not enjoying himself, and we will take him somewhere else, out of the theatre. But if he’s making noise while enjoying something, then so be it. Sam is often the one laughing loudest and longest at something funny at the cinema, but he may also be making some noise in the quiet bits. If someone else is bothered by a disabled child making some noise, then I don’t really care. Odds are they could visit again, whereas outings for us are logistical challenges. I think expecting one mode of behaviour from all humans in every public space is, when you start to think about it, ridiculous. And actually, much of my anxiety about disrupting other people with our family’s noise is (was) presumptive – I imagine people are annoyed, when the vast majority of people either haven’t heard it, or have but are relaxed about it. We meet lots of people who are friendly to us in these situations, even when we’re blocking their exit from the row with Sam’s wheelchair and the four hundred bags we like to carry with us at any one time.

Still, it’s one thing to intellectually decide that it’s okay for Sam to make his noises in places where they might draw attention, but it can be another to not feel a twinge of anxiety about it. Over time, I’ve come to marry the two. I hear the noises themselves less, I’m less likely to see whether other people have noticed, and I care less about all of it.

In the dark room at Tate, James said no-one turned towards the noise as he, Sam and a group of strangers watched sweeping Scottish scenery accompanied by the rhythmical clicks of Sam being content. I think that’s kind of wonderful.

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We then rewarded ourselves with croissants and cappuccinos, and then wandered through the main galleries of Tate looking at art back through the centuries. Somewhere towards the sixteenth century Stella took her shoes off and tried to jump off the benches, before shouting that she wanted to run. I tried to tame her while James talked to the boys about paintings of men on horses, and paintings of men fighting.

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Stella’s just turned three, and it’s an ‘interesting’ age. During our trip to Tate our disabled child was at no point the one that we were self-conscious about, that we were noticing people’s reactions to, or worrying whether his behaviour was appropriate for the space. Partly because I think the noises Sam makes are largely appropriate to all spaces, but also because no-one notices him when a small but furious girl is careering towards art of national importance, tripping people up as she goes. There’s a moral in there somewhere, beyond the immediate lesson that one way to distract yourself from overthinking your disabled child is to take a three year old whirlwind with you wherever you go.

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Brain surgery

Sam had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit more control over his body. It’s called Deep Brain Stimulation.

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Sam spent a week in hospital after the surgery. He was discharged yesterday and is now back at home – recovering well but still in discomfort. We are relying heavily on paracetamol and films.

We chose for Sam to have this surgery. We entered in to it open-eyed – we knew the risks and we knew it would be hard. We hope that the benefits of reducing Sam’s dystonia, and therefore his disability, will outweigh the pain and disruption of the procedure. We thought hard about whether the gains would be enough to compensate for Sam never again being able to trampoline (in case the wires that now run down his neck snap), and not being able to swim for three months.

Having a child go through major surgery and recovery sends you into a hole. The intensity of the emotion and the level of care required is enormous and exceptional.

It feels all wrong to spend your child’s life taking so much care over who looks after them – we have never previously left Sam with anyone except trusted family, carefully chosen carers, at nursery or at school – then leave them with a group of doctors and nurses who you have only just met, and who are going to do unthinkably invasive things to him while he is unconscious. These places are so weird – full of people for whom this is all in a days work, while James and I are reading Sam knock-knock jokes and trying to convince him and ourselves that everything is going to be okay.

The six hours that Sam was in surgery felt like being in the eye of a storm. Everything calm and controlled, but filled with anxiety and waiting for the call to say he was in recovery. I tried not to dwell on the thought that if Sam’s brain was damaged for a second time I would never forgive myself. Then the call comes, and in we go, and the storm sweeps across us all.

We only really emerged from the swirl of hospitals, and cannulas, and exhaustion yesterday. Here are a few thoughts as we come into the light.

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When Sam has been in hospital previously, we only had one child and this time we had two. This made a bigger difference to our ability to cope than we expected. Someone who knows Sam well needed to be with him all the time – partly because he was sensitive and sad, mainly because he can’t communicate with anyone who doesn’t know him beyond crying. I had created a rota on a geeky spreadsheet to ensure there was always someone with Sam and someone with Eli, but the reality of organising it was so tricky.

The easiest solution was to largely have me or James, or both of us, with Sam and for Eli be with family and carers. We knew he’d be confused and annoyed, but hoped new Playmobil pirate sets and promises of cake would get him through. And it did for the first few days. Then, he realised that he hadn’t seen his dad for three days and Sam wasn’t at home. He didn’t understand why last week he’d been on holidays with the four of us hanging out all day, but now he never saw his parents in the same place, his brother was in this mysterious hospital place, and we kept trying to offload him on other people. He was so confused. At one point the fact that both of our kids were struggling nearly broke me. Things improved a bit once Eli started visiting Sam at hospital, realised he wasn’t too far away and just looked like Mr Bump, and found out that hospitals have not only play rooms but also cafes that sell croissants.

I am raw to Eli’s feelings about all of this. He shows such insight and accommodates so much. On the day before surgery, he asked where we were going to be while he was staying with my sister. We explained (again) that we would be at the hospital with Sam, that he was having brain surgery, that we hoped it would help Sam control his muscles. His first question was, ‘Will Sam be able to eat after the surgery?’. No, he won’t. But the three-year-old is asking all the sensible questions. Be still my heart.

Pulling together

I’ve said it before, I’ll say it again. Our family is kept on the road by us all pulling together. For eight days I have spent up to 15 hours in a small room of a hospital. Sometimes with company, largely on my own with Sam, reading The Twits for the sixth time and eating fondant fancies for lunch because I can’t leave Sam for long enough to buy a sandwich. It’s not been that much fun.

But being James has been quantifiably less fun. James did six night shifts with Sam in a row. We were meant to alternate but the kindness of my husband and the frequency of my tears led to him doing every night. These were nights of Sam being miserable, almost no sleep, frequent observations and intravenous antibiotics. This last week, our family has been kept together by this man.

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Sam and James developed an amazing kind of symbiosis from spending all of these hours together in adversity in a small room. By the end of last week James knew what Sam wanted or needed from the smallest facial gesture or the subtlest wriggle. He knew when Sam wanted to be held, or how to get him to sleep. Oh man, these boys of mine.

Meanwhile, our families have been at our beck and call. My sister Maddy has once again proved that her capacity to sit in hospital rooms for hours is one of her most valuable skills (photo below of Sam and her just before his surgery). Along with looking after Eli for days despite him almost continually insulting her.

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It will be okay

So here we are. We’re on Day 9 and Sam is well as he could be. It’s all held together with Calpol and constant entertainment, but we’re home.

A few weeks before the surgery we had a party to celebrate our new house and summer. It was our normal combination of friends, prosecco and semi-naked small children. Uncle George brought his decks and at some point before bedtime he played this song: Can’t Do Without You by Caribou. James and I went to Latitude Festival in July and we arrived, via horrific food poisoning, an emotional final assembly at Sam’s school and six hours of Ipswich traffic jams, to Caribou playing this song on the main stage. I love it.

As we then danced to this song in our garden at our party a few weeks later, with James holding Sam and Eli jumping around, I had a moment. A little bit of clarity that Everything Is Okay – Sam is happy, our family is amazing, and we can all dance together at a party with our friends on a summer evening. I imagined looking at us from the outside and thinking ‘they look happy, that little family of four’.

As I sat in the hospital room when Sam was in surgery I listened to this song. As I stood in our kitchen at midnight during the last week, having just returned from the hospital but needing to make Sam’s meals for the next day before I could go to bed, knowing that I needed to be up at 6.30am to get back to Sam and James, I played this song. I imagine that many people associate this song with taking drugs on dance floors, but it’s become my anthem of Deep Brain Stimulation. I absolutely cannot do without my little gang of boys, we just need to get through this little patch of discomfort.