10 Brilliant Books For Young Children With Disabled Characters

I have spent a lot of time trying to find books which have disabled characters and these are ten of the best. They cover a range of characters and impairments. My daughter Molly (age 4) loves all of these but they’re probably a bit too young for my sons Max (age 8) and Ben (age 10). Some of them are quite old and only available secondhand. Some are published in the UK and some are from America. Let me know if you have any other books with disabled characters that you love.

I have put Waterstones or Amazon links where I can, but of course some of them will be available from your local bookshop (you could try my favourite one here)

Buy Mama Zooms from Amazon here

By Amy Webb, Merrilee Liddiard

Buy When Charley Met Emma from Waterstones here

By Cerrie Burnell, Laura Ellen Anderson

Buy Mermaid from Waterstones here

Buy We’ll Paint the Octopus Red from Waterstones here

By Kristin Meyer, Kevin Cannon

Buy Hiya Moriah from Waterstones here

By Jon Roberts, Hannah Rounding

Buy Through The Eyes Of Me from Waterstones here

The Abilities in Me Tube FeedingGemma Keir, Adam Walker-Parker

Buy The Abilities In Me from Amazon here

Simply MaeKyle Fiorelli, Kellen Roggenbuck

Buy Simply Mae from Amazon here

Summer skateparks

It is an odd summer. The forced homeschooling of the spring and early summer kind of bled into the summer break, though of course we have now entirely given up on any formal education. There aren’t any of the usual shows or activities running and we aren’t going on a family holiday. The only rhythm to our weeks is that Ben is going to his school playscheme two days a week, which is the same routine as the two days a week he spent at school in early July. Siblings aren’t allowed at the playscheme this year.

Quite a lot of days are spent with the kids doing separate things, with different people, as we try to do things they will each enjoy whilst also finding time to work. It’s not ideal, but it’s inevitable. I feel I have this fantasy version of our days where we do activities together like an idyllic happy, inclusive family but the reality is more like James is working, I’m at a park with Max and Molly, while a carer (the backbone of a successful summer) collects Ben from school.

I think this is probably what always happened, but I’m more aware of it because we’re coming out of shielding Ben where we got used to Ben staying at home while the rest of us occasionally left the house, and I worry it’s the thin end of a wedge – of getting used to not including Ben (even if it’s sometimes for good reasons). I worry that Max and Molly won’t have enough shared experiences with Ben, that Ben will feel left out. But we do do things together, and particularly at the weekend. Mostly parks, with fresh air and easier social distancing. A few weeks ago we went to a skatepark where James rolled Ben up and down the ramps while Max and Molly scooted around, tumbling off occasionally. Ben loves going up steep ramps, tipping his chair right back, and as James pushed him round we could hear Ben squealing in delight.

This week Max wanted to go to a specific skatepark where there is nothing for Ben to do (playgrounds being particularly unwelcoming for wheelchair users in general) and my ankle is not yet up to pushing him up steep ramps while surrounded by skateboarders. I explained this to Ben. ‘Do you want to come with us?’ I asked him and he, quite understandably, said no. Molly wanted to stay with Ben so I took Max alone. I read my book while he skated and it was actually relaxing having only one child to supervise.

Max ended up becoming friends with another boy at the park and I listened to them talking. The other boy was describing his older brother. ‘My older brother is 10,’ Max said. ‘My dad pushes his wheelchair up the ramps when we go to the skatepark all together.’

‘Oh cool,’ the boy replied.

Later that day I was giving Molly a bath while Ben was in his room, just through the open door, with his eyegaze device mounted to this chair. I was washing Molly and not looking at what Ben was doing when I heard his device talking, loudly. Ben had selected the page on his device that has pre-programmed phrases and said ‘Alexa, can you smell that?’

The smart speaker lit up and replied, loudly, ‘Oh my giddy aunt, somebody open a window.’ Molly, Ben and Max, who had been lying on his bed, all collapsed in hysterics. 

Maybe it’s not about the quantity of time the kids spend together, but what we do with it, and skate parks and fart jokes are the bits they’ll remember?

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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Limping through lockdown

It has now been over four and a half weeks of us being at home – at first in self-isolation because Molly was ill, then in the typical lockdown that everyone is doing. It has been over five weeks since I slipped on a small hill in a kids’ playground and broke three bones in my ankle. Tomorrow will mark exactly five weeks since I was wheeled into surgery, telling James I would see him in two hours, only to return five hours later with three metal plates and ten screws in my very swollen ankle.

I was discharged from hospital two days before Molly got ill and so our lockdown is inextricably linked with my ankle injury and my often clumsy attempts to manoeuvre myself around on crutches, bearing no weight on my left leg. Having a leg in a cast was not ideal preparation for having three children at home, all the time. Yet, when I was first in hospital the thing that upset me the most was being separated from my family. I was so lonely and all I wanted was to be in my own house with my children. So in some ways all my dreams came true!

Once I could leave my bed, my inability to move, carry or help has been difficult and it has felt like the worst timing because what we could do with now, more than anything, is two adults who can both look after our children. My incapacity meant James doing everything, for all of us, for weeks and it was a lot for him. More than once when I tried to be helpful and independent, I fell over. I have found it incredibly frustrating. I am unused to dependency and have found it hard to rely on nurses, my husband and my children for the most basic of my needs.

But in some ways I injured myself at the best possible moment. We had bumped into a friend in the playground just before I fell and so she distracted Max and Molly while I worked out how to get myself to A&E. I had delivered a massive work project the day before I injured myself so it has been okay that I haven’t worked for a month. James had returned from a work trip to Canada two days before I was admitted to hospital. I was discharged from hospital just before the pandemic took full hold, and my limited mobility is less of an issue since I’m barely allowed to leave my house.

We have bought me a one-legged scooter and so I can now prop my healing leg on it and potter around the house. I can cook, and carry things from one place to another without needing to pack them into my rucksack. I have made it out to the garden and have played an extremely amateur, ridiculous, game of seated volleyball with Max. I have been reaping all of the benefits of a house without steps, with doorways wide enough for a scooter, and a lift that takes me to my bedroom. I have been so grateful for the mobility aids that have allowed me to move around and increasingly parent my children. And yet I am so resentful that I can’t use my legs like I am used to. It’s been a surprise to find myself dependent on crutches and a scooter and I struggle to reconcile my long-standing belief that mobility aids are freeing, not confining, with feeling incredibly constrained, all of the time. I hope this is more a process of change management in my own mind than latent prejudice against disability, but it’s hard to fathom my own thoughts when I have only left the house twice in a month and we’re in the midst of a pandemic.

Because obviously the pandemic weighs heavily. When Molly was ill, we attempted to self-isolate her and Max from Ben, so after years of encouraging our children to touch, kiss and cuddle each other we had to stop Molly going near Ben in the house. It felt necessarily but wrong. Max stopped sleeping in the same room as Ben. We still had some carers coming to spend time with Ben, and we had to tell Molly and Max not to go downstairs when they were here. After years of encouraging an ease around Ben and his carers, we had to police everyone’s exposure to each other, spraying cleaning fluid in their wake. It was heart-breaking. I’m not sure how long it will take for us to undo our policing of touch.

As Molly entered her second full week of illness, it seemed like Ben was in a vulnerable category and we tried to work out what we would do if he got ill. We spoke to Ben’s lead consultant and he suggested a plan which made us feel reassured, but we were on tenterhooks every time Ben coughed or grimaced. Somehow he has so far remained unaffected, and now we are all healthy, touch wood. It now seems like Ben no longer officially counts as vulnerable, though who knows, and there is only so much we can do to keep him safe. We remain vigilant, nervous and concerned.

In the midst of all of this, I scoured the internet for guidance about how we should manage carers coming into the house. Not having carers was not an option given my inability to look after Ben and James needing to look after all five of us. I cannot push Ben’s wheelchair or move him between his chair and his bed. I can barely change him without wobbling perilously and can’t get to him in the night in any kind of timely fashion. So we came up with our own version of guidelines for how we would manage the risk, long before the government produced anything helpful.

I noticed news reports that told us, with a tone of reassurance, that many of the people who died had underlying health conditions. I knew that is how Ben would be described. I was relieved that children did not seem to be among the worst affected, but then there were reports of child deaths, and plenty of other people to still be worried about. When NICE published guidance setting out how access to critical care would be managed, I noticed that it was on the basis of frailty, and that according to their criteria Ben would be frail. I realised these criteria didn’t apply to children, and I was both relieved and still stricken, because Ben will one day be a disabled (apparently frail) adult, and we have friends who are disabled adults. I am still shocked that a formal, public document set out the ways in which a disabled person’s access to life-saving treatment would be considered rather than assumed. It was later edited to say the guidance should not be used with younger disabled people, but why did it take outrage to prompt that clarification? Of the many things I never imagined before COVID-19 appeared, I didn’t think I would ever worry whether my child would have to compete for medical attention and whether his disability would count against him if he did. 

I’ve barely articulated any of these thoughts because I am mainly aware of our luck. We are currently healthy, in a large house with a garden where we have time to appreciate the tulips. We have offers of supplies and the money to buy them. I have a husband to help, and subscriptions to streaming services. We have as much hope as anyone else does of home-schooling our children, albeit with the colossal pressure of being not only Ben’s teacher but also his physiotherapist, occupational therapist, speech and language therapist and support system. 

We could be in a much more difficult situation, and I know many are. We are okay – letting our kids watch marginally inappropriate films, making and eating too many cakes and wondering how to get any work done. We are more fortunate than many, yet each morning I remember that this crisis has laid bare an assumption that Ben’s life might be, if not now then in the future, a little bit less valuable than someone else’s and I just hope that we are going to weather this storm and then come out fighting, with strong ankles perhaps.

Ben is Ten

Ben hadn’t ever had a birthday party with friends. It’s not like we didn’t celebrate his birthday: we had a little gathering every year with family and close friends, including his brother, sister and the kids of our friends. We’d had cakes and garlands, songs and presents. Every year James makes a video of Ben’s last year and we all watch it together. We instigated a tradition of birthday ice skating at Somerset House. But no big party with friends and chaos.

This was partly because Ben didn’t seem to really like parties. He found the number of people and the noise difficult. He didn’t enjoy party games with lots of kids and often cried when we sang him happy birthday, especially if we clapped too loudly at the end. He didn’t have an obvious friendship group in the way Max, for example, did – his school has never been local and his classes have been smaller – so it was hard to know who to invite. I didn’t want him to have a party for the sake of a party. Also Ben couldn’t and then didn’t request a birthday party in the way that Max and Molly do, relentlessly. We didn’t think he would enjoy a typical child birthday party so we didn’t organise one. Or perhaps I felt too sad about the fact that I wasn’t sure how to pull together a birthday party with friends for him, so I didn’t.  Or both.

But then Ben was turning ten years old which felt like a milestone to mark. Ben was invited to a friend’s party at an ice rink and ice skating is one of Ben’s favourite things. I was thrilled to realise it’s possible (though not cheap) to briefly hire an ice rink. All of this culminated in …

Last weekend he had a tenth birthday party with family and friends, kids from school and home and their siblings. Thirteen kids on the ice, six of them using wheelchairs. At the start we were the only ones there and Ben and James swirled around alone, the whole rink to themselves. Ben’s friends arrived and the rink was a wonderful mix of semi- and in-competent skaters offering to push wheelchairs in the interests of their own stability. Molly and her cousin wobbled around holding onto plastic penguins. Max approached it with admirable confidence.

When we finished skating, the kids that could eat helped themselves to carbohydrates and sugar and Ben sat happily amongst them. Then we lit candles and sang him happy birthday around some amateur egg-free cupcakes. As we sang, he beamed, thoroughly enjoying the noise and the attention. I had pre-blended a cake at home so we fed him cake via his feeding tube as others tucked in. In the unphotogenic surroundings of a local authority ice rink, sat in front of a vending machine, Ben had fun and after ten years we had worked out how to give him a party he enjoyed.

We then moved on to a pub which usually caters for football fans and so had wheelchair-accessible open spaces, friendly staff and plasma screens everywhere you looked. We had not planned this, and we’d never been to the pub before, but Ben loves a screen and watching football pundits appeared to be exactly the post-party vibe he was looking for. (The Tollington Arms was as welcoming a pub as you could hope for).

I am so delighted to have been a mother to this boy for ten years and, this year, to have found a way to celebrate with his friends. I think we got there for Ben’s tenth birthday because we had waited to find the kind of party he could enjoy. It’s taken time for us to facilitate his friendships. It’s only after ten years that he’s come round to the idea of being the centre of attention at parties. All of it culminated in a bunch of children, half using wheelchairs, zooming round an ice rink to the sound of George Ezra (again) and it was glorious. He is glorious.

The Tale of the Token

We took the kids to junior parkrun on Sunday morning. It meant being up and out early, but the sense of satisfaction gained from having undertaken a family activity by 10am on a weekend morning is immense. Max likes running the 2km race, though is perhaps lacking some of the competitive edge of other participants, and since we got an all-terrain buggy for Ben one of us can jog alongside Max while pushing Ben, which they both love. Molly tolerates waiting around until she can go to the playground nearby.

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We can’t fit Ben in his normal wheelchair plus his buggy plus the rest of us in one car so we go in two cars and move Ben from the wheelchair to the buggy at the side of the road. We’ve done this a couple of times, and as usual last Sunday we were cutting it fine with timing so arrived as the group were warming up, pleased that it hadn’t started yet. Last weekend it was misty and atmospheric but not too cold. Parkrun is an amazing idea – free communal running, open to everyone, and the junior parkrun is just a slightly shortened, slightly calmer, 2km version of the 5k adult run.

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Ben was a bit grumpy as we arrived but we thought we’d carry on and see if he came around to this running idea like he has before. James did the pushing on Sunday and Molly and I waited at the start line, cheering them on as they ran past us at the halfway mark. I could see Ben had perked up. As they came towards the end Ben was smiling and we followed them as Max sprinted to the line. As with all parkruns they had set up a funnel and each runner is clicked in as they cross the finish line and then handed a token as they leave which corresponds to their race time. If you have registered online you have a barcode which you can get scanned with your token and then your time will be recorded online. You can then keep track of how many runs you have done, and what your times have been.

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As Max sprinted across the line he was clicked through and then handed a token, and James and Ben followed shortly behind but were not clicked in and so not given a token. James asked for one for Ben but by then the next runner had been clicked through and so it was too late. He continued forward to allow other runners through. As Molly and I caught up with them, James told me that Ben had high-fived one of the organisers as they’d been running, which is a big deal because Ben can’t easily control his arm, and we congratulated him while Max collapsed on a bench and demanded water.

It felt like a shame that Ben hadn’t been given a token like Max. It’s pretty hard to find activities that both boys like doing at the same time, and with the help of an all-terrain buggy and an able parent to push, this is something they can do together. When the boys do things together we try to treat the same, and Ben not being given a token did not feel like treating them equally. As James and I talked about it an organiser came up to ask if everything was okay.

I said it felt wrong that Ben hadn’t been clicked in so given a token and the organiser said that they didn’t give tokens to participants that were pushed over the finish line – children needed to run in order to be registered. He said he hoped I wasn’t disappointed, but I was incredibly disappointed – I had perceived parkrun to be inclusive and welcoming, and refusing to give a token to a disabled child who had done the full 2km run, albeit pushed, did not feel inclusive. They hadn’t come across this situation before, he told me that he’d been at lots of different junior parkruns before and had never seen a disabled child participating so they would need to ask head office for guidance. In the absence of direct instructions I suggested they could have erred on the side of inclusion, which would be to give him a token. I didn’t see how refusing to acknowledge him could be seen as anything but exclusion. I said I didn’t see what the risk was – what’s the danger in giving Ben a token and us being able to see his time? It felt like the person at the finish line had looked at Ben, saw he was disabled, and dismissed him.

It was a small thing but it slightly took the shine off an otherwise fun run. We had wondered how inclusive an event it was when we’d taken Ben previously and mentioned to an organiser that we would push him over the finish line. Their immediate response had been that no adult was allowed over the official finish line, and therefore Ben couldn’t cross it either. When James had pushed back, they had agreed he could cross it but it hadn’t been the accommodating response we have generally become accustomed to. Ben hadn’t been given a token that time but we hadn’t noticed.

I don’t want this to be about this particular organiser of this particular parkrun. In this case the organiser took my email address and contacted me later that day to say that he had found guidance which said it was fine for Ben to participate and to cross the finish line and be given a token. He asked that I register Ben online and we make ourselves known to the organiser at the beginning of the run, and that should ensure we have no problems in future. He dealt with the follow up promptly and effectively.

I do want to make this about how people respond when presented with a disabled person unexpectedly. Parkrun apparently has a policy of not letting parents push buggies over the finish lines at junior parkruns, presumably to stop overzealous keen-bean runner parents overshadowing six year olds or running them over. They don’t want adults crossing the finish line because it’s all about the kids at junior parkrun. Fair enough. But a nine year old disabled child being pushed in a specialist buggy is different. In this case, the people confronted with this difference reverted to the only similar rule they could think of which dictated that Ben should be excluded from the finish line of the run. When challenged, they said they didn’t have specific guidance and so they couldn’t, wouldn’t, give him a token because he can’t run.

This isn’t about the token – I’m not even sure Ben cared that much about the token – it’s an exemplar about what some people do when faced with an unfamiliar situation. Rather than thinking ‘oh, how can we include this person’, they think, ‘oh, he can’t run, so we won’t include him’.

We all find it difficult to be confronted with unfamiliar situations, especially under pressure, especially at 9.20am on a chilly Sunday morning. We are all raised in a society that sees kids who run as the norm. We are all influenced by a society that sees disability as difficult and we can’t help but take this message on board however much we (I) try to unlearn it. But let’s just all try to be the person who errs on the side of including, adapting and being friendly. Let’s not assume that if we don’t know what to do, the best thing is to is say no, exclude and ignore. And then try and justify it when challenged, concentrating on the really specific act of running rather than an overriding ethos of parkruns being ‘for everyone’ (see parkrun website).

Let’s all try to be the person who would just hand over a token to a nine year old boy who had just done a high five and participated in a 2km run.

Let’s keep the fun run mood cheerful and not sour the morning of a family who are really proud of themselves for making it out of the house before 9am on a Sunday morning.

Don’t treat my sons totally differently because one of them can run and the other can’t. People who can’t run can still take part in a run.

Don’t make me say the word ‘token’ ever again.

JUST BE THE PERSON WHO WOULD HAND OVER A FRICKING TOKEN.

(Photos below from the playground, post-run. Obviously it’s another playground where there’s nothing for Ben to do, but let’s not get into that now.)

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Haircuts

Ben has always had abundant hair. When he was very little he had curly, light hair which his neurologist said reminded him of Harry Styles and when he was one it needed to be trimmed. He had that typical baby thing of very little hair in some areas and way too much in others. The curls were cute but the comb-over + mullet combination was disconcerting.

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I did what I had seen other people do and booked a haircut at a hairdressers that did special first haircuts. My mother in law joined me as we tried to entertain Ben while I did my best to hold him upright on my lap. His head was wobbly and I attempted to hold as far up his body as I could without getting in the way of the scissors. Sometimes I held the front of his head while she trimmed the back, or one side while she did the other. It was difficult and the hairdresser was perturbed by the wobbliness of it all, the difficulty of doing what she needed to do as quickly as she wanted to do it. We left with a shorn child, a certificate and a lock of hair. It wasn’t the landmark childhood moment I had hoped. It was an anti-climax – I’d expected to feel like despite his challenges, Ben had taken part in a rite of passage. A First Haircut, with documentation to prove it. Actually I felt like I’d wasted money on a stressful half hour where we had inconvenienced the hairdresser.

As Ben got older his hair grew straighter, longer and it got matted at the back where he lay down so much, rubbing his head from side to side since he couldn’t roll himself. He had an amazing side parting and swoosh of hair to the side, but it was annoying when it flopped into his eyes. A family friend who was a hairdresser offered to trim it at my mum’s house. As Ben sat in his highchair there, bolstered with rolled up towels and distracted by Cbeebies on an iPad, she worked her way around his head taking her time and letting his head loll when it needed to.

This was a good arrangement for us all and over the following years our friend would visit us at my mum’s or at our house regularly, taming Ben’s hair in exchange for cups of tea. As he got older his hairline established itself and it became clear that he was made for the sideburn like a very small, belated member of Supergrass. His hair grew quickly towards his face, and for a boy that is predisposed to being hot and whose body is in a constant state of wiggle, a helmet of hair didn’t help him cool down. Within a few months of a cut the hair would be back, in all its density and effortless perfection, or tousled imperfection.

When he was five Ben had an operation on his brain which meant his head needed to be shaved. In the pre-op consultations the surgeon had said they would do this in the operating theatre, but that we might prefer to do it ourselves first – partly to minimise the shock at seeing Ben freshly shaved post-op, and partly because the team were experts in neurosurgery but not hairdressing.

Our family friend visited us at home the day before the operation and cut James’s hair first while Ben watched TV next to them. When it was Ben’s turn we put an iPad on the dining table near the open doors to the garden. It was midsummer and there was washing drying in the sun as our friend put down her scissors and picked up her clippers. She started at the nape of his neck as she worked up and over the crown of his head, removing all of the glorious hair that had been his calling card since he was born. The surgery was too big and intimidating an event to really grab hold of, but sweeping all of his hair up from the floor felt dramatic and like we were unmooring ourselves from what we knew, taking terrific risks.

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Ben’s head wasn’t clean shaven – there remained a downy stubble of hair which was satisfying to ruffle and with one front tooth missing he looked entirely different and incredibly cute. Having been born with very little hair, Max was now three and had more gradually grown a similar mop to Ben’s though darker brown. But now Ben’s had disappeared and the brothers that had looked so similar looked completely different. Max looked even more dark, relaxed, undisturbed in comparison.

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Ben had bandage wrapped around his head for the week following surgery, the kind of bandage that cartoon characters have after running into a wall. When this came off we could see the patches where they had shaved the hair completely and stitched up incisions. Over the following months more of Ben’s teeth fell out and his hair slowly grew back but the texture and character was different. Even when the ridge of the scar was hidden, the hair around it was disturbed and you could see a ripple. The hair on the top no longer casually flopped to the side, it had vigour and grew up and out. After a night of Ben lying on his back, his hair would sit straight up like the frill of a triceratops and resist all efforts to be flattened. He didn’t need a haircut for a while but I watched the volume rise and the sideburns return, slightly darker, courser. When it came time for a haircut his hairdresser would not only need to contend with Ben’s near constant movement but now also the scars on his scalp. I was delighted to have his full head of hair back, but wondered how long we could manage it being cut. He hated being held still but it’s risky to have a pair of sharp scissors next to an unpredictable head. I wondered if the close crop would need to become more frequent.

It came time to find a new hairdresser and through a friend whose daughter also found it hard to keep still we found C. She also visited us at home and we would set Ben up at the dining table with a programme to watch and the headrest of his chair removed behind. C is fast and she found a way to dance her scissors around the ever moving target. Her speed meant there wasn’t time for Ben to get too frustrated or annoyed. I clamped his head still for the short buzz of clippers around his ears, but otherwise he wobbled and she coped.

When C visited this weekend she reigned in Ben’s sideburns and commented on how his hair has changed. Four years after the shaved head, the contours of the scars are invisible beneath his thick hair and the dinosaur frill is less pronounced. Some of the floppiness has returned. I trust C’s skill with her scissors and I paid little attention, chatting and making tea because I don’t need to be right there holding his head.

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Then it was Molly’s turn to watch her programme and get her hair dramatically chopped after she requested hair more like her brothers. She no longer wanted the soft, light, long curls that she’s had for the last few years and which I later swept into the bin. She now has darker, shorter hair. Not exactly like her brothers, because in the same sentence as asking for short hair she said she also wanted to look like Elsa so I was worried she didn’t understand the long term implications of a hair cut, but closer.

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I’m disconcerted by her new bob – she looks older and I have to admit she is no longer a baby – but she just wanted less hair. It’s not the precursor to surgery, it won’t take four years to recover, she just wants hair a bit more like Ben. It’ll grow back.

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Why The Times should be ashamed

You might have heard about an article in The Times on 14 October with the headline ‘Pupils lose out as £400m schools funding diverted to special needs’. It described how ‘children have been losing out’ because money is being ‘siphoned’ off to pay for support for children with special educational needs (SEN). It quoted a head teacher who said some parents saw Education, Health and Care Plans (EHCP) as a ‘golden ticket’.

Quite apart from children with special educational needs being ‘pupils’ too, it painted a picture of sharp-elbowed parents of children with SEN somehow gaming the system to get money at the expense of other mainstream children. The article suggested that the pressure of all of these pushy parents and their needy kids had meant councils had had to raid their mainstream education budgets.

I wasn’t the only one to find this article deeply offensive. It’s been widely shared and disparaged on social media. On 15 October the paper edited the article online and removed the ‘golden ticket’ quote, changing the headline to`Schools ‘struggling to meet cost of special needs support’. It is less inflammatory, but still talks about the number of pupils with SEN as having ‘surged’ and how much money has been ‘diverted’ from mainstream education budgets and the effect that has had on class sizes, staffing and resources.

This is such bullshit. It’s textbook victim blaming. There is a crisis in educational funding because we are years into austerity so there is less money for all schools so there is less support for children who need it. It’s therefore more likely that parents (and schools) will try to get EHCPs for children who need additional support because that will ensure additional funding to pay for the support. Possibly not enough funding or support, but some.

EHCPs are legally enforceable documents that set out exactly what challenges a child has to to learning, and therefore what support the child needs. It may be a teaching assistant for some proportion of the day, or access to specialist equipment, or physiotherapy. It’s all based on professional reports. No parent I know would enter into the process of getting an EHCP lightly – it’s a gruelling administrative process which most parents are doing for the first time.

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Getting my eldest son Ben his first Statement (the predecessor to EHCPs) was one of the most stressful things I have done and culminated in us negotiating every line of the document in the reception area of our local council’s head office because Ben was with us (no childcare) and children were not allowed in their meeting rooms. We got what we wanted, which was for him to go to a Special Needs school which had the expertise to help him communicate. We have been fortunate ever since – he has been at excellent schools and the schools have helped us with subsequent renegotiations of his EHCP. The system works well for him, though of course his school is under financial pressure.

Local Authorities have very little money, so they are trying to work out which bits of EHCPs are essential. It shouldn’t happen, but of course there’s rationing. An EHCP drafted by the local authority might include less of whatever the resource is rather than more. There is often a dispiriting process of negotiation between a parent and a local authority. If they can’t agree, the parent can take it through an appeal process and The Local Government & Social Care Ombudsman is currently upholding (ruling against the local authority in) 87% of the cases it investigates. It has said children with special educational needs and disabilities are being failed by the system designed to support them. This means children aren’t getting the support they need at the right time.

So The Times took a story about children with SEN being failed by the system designed to help them learn and made it into an article about blaming those children and their parents. It took a hugely complex issue and reduced it to dog-whistle headlines and inflammatory quotes.

Let’s be clear – all these children are trying to do is go to school and learn. Their parents are not asking for Ferraris and caviar for lunch. They are asking for their child to be in an environment where they can learn to count and read. It’s not their fault the support costs money and schools and local authorities don’t have enough. That’s the fault of central government, and it’s disgraceful.

I know parents whose children have special educational needs in mainstream schools and it’s almost impossible to ensure they are getting the support they need because schools are under so much financial pressure. It’s inevitable that more disabled children leave mainstream schools, either to go to special needs schools, or to other arrangements which are frequently less than ideal. Or they stay in mainstream schools but are not thriving, therefore requiring more support.

I have two non-disabled children. I think schools are best when they are diverse and inclusive. I want my kids to count and learn, but above all else I want them to be good people and I think you are less likely to be that if you have no sense of neurodiversity, difference and disability. In our family, Max sees children with special educational needs at school and home and that is how it should be. Molly had a disabled friend at nursery as well as a disabled brother at home.

Educational funding is being stripped to its bare minimum and that is effecting all pupils. If you think children with SEN are a drain on the system you are discriminating against children who need support to learn. It will be to their detriment, and we will have failed those children, but actually we’ll have failed all children. The Times should be ashamed of encouraging such a horribly reductive portrayal of a situation which is shameful to those in power, not parents trying to do the best for their children.

 

When the personal isn’t political

I don’t often write about overtly political topics. I worry that I’m not sufficiently informed and haven’t done enough research to have an opinion that I want to make public. But in the current political climate, where it seems the people who really should know what they are doing don’t, I’m going to weigh in on something.

David Cameron’s memoir, For The Record, is about to be published and of course the main story is about Brexit. I definitely do not know enough to put pen to paper about that.

He has also written about his son Ivan in the book and an excerpt was serialised in the Sunday Times last weekend (behind a paywall here). My son is different to his, but they both have cerebral palsy and having a disabled child is something I do know about.

Cameron writes movingly about Ivan’s birth and the difficulty of managing his health needs. He describes the difficulty of your child being anaesthetised for operations, having a feeding tube inserted and becoming expert in managing tubes and syringes. All of this rings true to me, including the new normality of feeding your child via their tube on trains and planes.

This is the reality of many parents of disabled children and he and his wife, Samantha, clearly loved Ivan and like all of us did what they could to give their son what he needed. They learnt fast and stretched themselves. They didn’t anticipate being parents of a child like Ivan but got on with it with grace and determination. Ivan’s death in 2009 was a tragedy and I can’t imagine how sad they must have been. The grief must have changed them in ways I can’t possibly realise and will never go away.

The way he has described the reality of his experience means I find it really hard to read his account of Ivan’s life without wondering how he has avoided making the personal political. 

Cameron writes about how difficult they were finding it to cope when Ivan was young: ‘I found the phone number of Kensington and Chelsea council’s social workers, and soon, to my great relief, one of them was sitting in our kitchen, notepad in hand, talking about the help that was available.’ He describes how grateful they were for the help they received from children’s hospices. He recounts how he had visited a constituent, before Ivan was born in 2002, who had a severely disabled child and wanted his help with the lack of care her daughter was receiving and that he couldn’t have known that he would find himself with a similar child. 

It is rare for anyone to have sufficient power to effect real change but surely the Prime Minister is one of them. After coming to power in 2010 Cameron began a programme of austerity which saw the steady reduction of all services for disabled children. The government attempted to distance itself from the effects of its policies by claiming that it was up to local authorities to fund services, whilst reducing the money local authorities received so drastically that it was impossible for there not to be cuts. I am talking about services like social services, children’s hospices, physiotherapy, occupational therapy and specialist equipment amongst others. 

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My son was born in 2009. Our experience of parenting him has aligned almost exactly with the reality of austerity, and for us it has meant less of everything. All of the services we access have reduced. Our experience is not unique. 

My son, Ben, does not have epilepsy like Ivan, but he does have a feeding tube and is entirely dependent on us for all of his needs, night and day. I have never had a social worker come round and talk to me about the help that is available. My most recent experiences have been being unable to get hold of a social worker at all. We have been assessed and we are eligible for the following over a year: funding for two hours of help a week (at a rate that is less than market rates) and ten days of playscheme a year (9am-3pm). We used to get transport to and from the playscheme which is in another borough, but that has now been cut. We used to get occasional nights when Ben could stay at a children’s hospice but since the hospice receives no statutory funding and our local authority will not contribute, that has been removed.

The occupational therapy team that oversees equipment in our home is so overstretched that it is at least four months before someone can come and check the fit of Ben’s bathseat when it is uncomfortable for him. When we need new slings, so Ben can be safely hoisted from his wheelchair to his bed, our local physiotherapist tries to help order them on the NHS system, which is not her job, because otherwise he will spend months being hoisted in slings that are too small.

When Ben grows too big for his wheelchair we will wait up to three months for an appointment to get the wheelchair adjusted because there aren’t enough wheelchair therapists. When Ben needs a new walker, which everyone agrees is useful to help him bear weight and reduce the risk of hip surgery in future, we will need to fund it ourselves. Same with the positioning system he needs to sleep. There is not enough money for these vital aids.

The NHS and local authority therapy teams are full of talented, kind people working really hard in difficult circumstances with reduced budgets. Our local social services team cannot prioritise families like ours because they don’t have enough money to go round.

This is nothing to do with Cameron’s grief, which is personal and painful and not my business, but everything to do with his experience of looking after a disabled child. I find it hard to understand how he can recognise the importance of the care and support his son and his family received without acknowledging that those resources are no longer available. There are now children who don’t have specialist chairs to sit in at nursery because they are no longer funded, families that get no respite and need to fundraise for physiotherapy. Very few families are being proactively offered help from social services. For most people, the personal is political and few things alter your politics more than having a disabled child. Cameron appears to have separated the two things entirely.

Don’t feel sorry for me. We are privileged to have the resources to mostly get Ben what he needs and this isn’t about an individual. But please, feel really bloody angry on behalf of all the disabled children who were born after David Cameron’s son. Cameron was in a position of power and he ensured that all of the families with disabled children that came after his got less.