Wonder

I have been reading even more books than usual to Ben during lockdown (or whatever we’re meant to call this period now). We have been choosing longer books and taking a week or two to get through them. Max often listens too.

We have just finished Wonder by R.J. Palacio which is about a boy, August, who is ten years old, has facial differences and starts a new school. It’s about how people react to the way he looks and how he makes new friends. Some parts are told from the viewpoint of his sister and his school friends. A lot of it is about his relationship with his parents, how he feels about his appearance and how he manages other people’s behaviour. It’s all the stuff that parents typically worry about when they have children who are different, or actually probably just all parents.

I make a concerted effort to read diverse books to my kids. I seek out stories about people who look different to them, or celebrate different holidays, or live in different kinds of families. I don’t think it’s enough to hope your children will see a range of people in the culture they consume – you have to proactively curate it. I’m not doing in perfectly, but I’m trying.

In the books I buy and read, I don’t protect them from potentially tricky topics. Books are a great way of introducing the beginning of something before it comes time to have a Big Chat, or perhaps there will never need to be a serious chat because books are a great way of introducing nuanced topics and having a whole series of little chats. All chats and topics are different but books have helped me have chats with my kids about flowers, racism and reproduction, just in the last few weeks. Of all the stories, I particularly seek out ones that depict disability because I want to try and provide some balance to the overwhelming majority of the stories Ben hears being about non-disabled people.

So we started reading Wonder, and I found bits of it difficult. There are sections where kids are really mean to August and I worried that I was telling Ben that kids are bullies, but reminded myself that Ben might not relate to August. Not least because his physical differences are entirely different to Ben’s. So I continued, relieved when we got to a bit where August made good friends. Ben was engaged, enjoying the story, showing no signs of distress.

There were a number of points where I welled up while reading – partly because I’m an absolute sucker for this kind of storytelling, and partly because people’s kindness often moves me to tears and August makes a really good friend in the book. There are passages where there is a danger of August being depicted as the kind of ‘inspiration porn’ that so enrages disabled people – the plucky, courageous person who is congratulated for completing an everyday task, living an everyday life. But there is also something beautiful in Wonder about the way August rises above horrible people and makes meaningful connections. His teacher makes a speech at the end: ‘It’s not enough to be kind. One should be kinder than needed… we carry with us, as human beings, not just the capacity to be kind, but the very choice of kindness’, I read to the boys as my voice wobbled around the threat of tears. August is clever, hard working and funny. He makes friends in the book, just through being himself.

When we got to a chapter written by August’s sister, Olivia, I worried because she eloquently describes her parents not having time for her when they are so distracted by her brother. I didn’t (don’t) want Ben to feel like his siblings might be resentful of him, or to plant in Max’s mind that he’s been dealt a bad hand in siblings or families. I found it hard to read the passages where Olivia doesn’t want August to come to a show at her new school, because she is embarrassed that her brother is so different, but she feels awful for feeling that way.

I realised that reading books like this is as important for Max as it is for Ben. It’s easy to forget that having a disabled sibling is, in itself, an identity. It affects so much of who Max is, what he does, and how he lives. I would love for him to see that being Ben’s brother is hard in some ways, and wonderful in others. But there are things he finds difficult, and perhaps it’s helpful for him to know that other siblings find this too. It’s very unlikely he’ll suddenly become resentful of his brother because he heard a character in a book was. And if Max is at all resentful, me pretending he isn’t won’t make it go away. 

What Max mainly wanted to talk about as we read the book was why other kids, friendly and not, were behaving the way they were. Max wondered why one particular boy, Julian, was so mean and why his parents didn’t want him to be friends with August. Max has some experience of kids not liking his brother and far from it making him self-conscious about Ben it has, so far, just made him really sad, which made me even sadder.

But for every unkind character, there is a friendly one. And August’s parents are there beside him. There is a bit at the end where August and his dad are discussing the astronaut helmet that August wore all the time, for years, so people couldn’t see his face. August’s dad is telling him how much he hated the helmet: ‘The real, real, real, real truth is: I missed seeing your face, Auggie. I know you don’t always love it, but you have to understand… I love it. I love this face of yours, Auggie, completely and passionately. And it kind of broke my heart that you were always covering it up.’

‘Oh, that is SUCH a parent thing to say,’ Max groaned. ‘That’s exactly the kind of thing you guys say.’ Too right, kid, and not going to stop anytime soon…

Precarious

Earlier this week I looked after Ben on my own for the first time in three months. While James was out with Molly and Max, for just over an hour, it was just me and Ben. We did some schoolwork, then I got him changed and back into his chair, started his dinner and we read a chapter of our latest book. It was an entirely routine afternoon, only made remarkable by the fact that I haven’t been able to look after him like that since the beginning of March before I broke my ankle.

It has been strange that lockdown has coincided so neatly with my ankle recovering from being pieced back together by surgeons. In some ways it has been convenient – I haven’t had to work out how to take the kids to school on crutches, or reject invitations to meetings, because there has been nowhere to go and no-one to see. On the other hand it has been difficult because we have had three children at home and I haven’t been able to look after them in the way I usually would – most markedly for Ben. Max and Molly don’t need much physical help – in fact they have often been helping me – but Ben relies on the physically ability of others to be moved, fed and changed, and I haven’t been able to do that.

It has been deeply frustrating. Luckily with James and visiting carers (with the attendant hand hygiene, new protocols and PPE) we have made it work. Ben has been okay, but I don’t like it. I want to be a hands-on parent taking care of him and helping him do the things he enjoys but the ways in which I want to use my hands are, I have discovered, highly dependent on the stability of my ankle and my ability to walk and stand. I could read Ben books thoughout, sit next to him and keep tabs on whether he was being fed or not, but it wasn’t the same. It hasn’t felt like enough.

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It’s made me realise how precarious my physical ability to look after Ben is, and that has been set against the precariousness of Ben’s normal life in general. I knew something about the fragility of my body – I have recovered from two caesarean sections and lower back problems which have each meant periods where I couldn’t look after Ben on my own – but I had settled into a naïve belief that the support that surrounded Ben was secure. Until it was all stripped away by the ramifications of Covid 19. At the exact point that my ability to care for Ben was reduced, everything else also stopped and James and I needed to not only be his parents but also his teachers, therapists, friends and carers.

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I know that everything has tumbled for everyone – we had all built lives that were dependent on friends, colleagues and professionals – but Ben’s more than most. Some support can be substituted remotely, but it’s not the same. Ben has learnt to zoom call his teachers, and we have sent photos to his therapists so they can review his position. He’s having music via videolink, and we send photos of completed work to school. Many of his carers have been able to keep coming, and we have been gratefully dependent on their help to not only care for him but also to attempt to educate him, but none of it is a substitute for him being at school. Max and Molly are also missing all of the benefits of formal education but we can more easily compensate. There are losses, of course, but they don’t feel as acute to me.

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And yet with a realisation of the precariousness of it all, comes an appreciation for all of these people who prop up our lives and the stability we enjoy. My naivety was a luxury – I hadn’t realised how delicate Ben’s normal, day to day, life was because he is usually so well supported and I had forgotten the physical demands of caring for Ben because I had had the benefits of my body allowing me to do it effortlessly.

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It’s not all bad. In these last three months, Ben has never spent so much time in the hammock, or been read so many books, or been hugged and kissed so consistently by his sister (our fears about ruining their relationship forever by forbidding her from touching him when she was ill unfounded). He now knows significantly more about Thunderbirds than he did, and he is sleeping better than ever. So pros and cons. I suspect our children will remember this period fondly once they are reunited with their friends, family, teachers and therapists (or actually anyone that isn’t me and James). They probably won’t remember this period as a loss (though Max will take a while to recover from not being allowed to see his friends). As we rebuild all of the connections and relationship that are the foundation of Ben’s normal life, I will notice how valuable all of those people are and hope that we never notice just how precarious our dependence is again.

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