I went to a panel discussion at the Wellcome Collection in late 2019 that discussed ‘The Trouble with Charity’. One of the topics of conversation was that disabled people are often seen as recipients of charity, a view compounded by campaigns like Children in Need that tugs at heartstrings to encourage donations. We all know these videos – where poor, sad disabled people need your money to get better equipment or more opportunities.
Most of us will have mainly seen disabled people on screen, or in any media coverage, in these kinds of positions – as beneficiaries of benevolence. Being talked for by non-disabled helpers or being grateful for the charity they have received. The panel discussed how much airtime is given to parents of disabled people, rather than disabled people themselves, and how this reinforces a sense that disabled people cannot talk, advocate, for themselves.
I asked a question to the panel about how parents should approach this issue and the disabled speakers answered thoughtfully but clearly – that parents should not talk for or over disabled people. They shouldn’t take up space in which disabled people could advocate for themselves.
I feel like my work at the moment is at the heart of this conundrum. I am a non-disabled person who talks about disability, and I could be taking up airtime or attention that would otherwise be occupied by a disabled person.
But I am also a non-disabled person who unexpectedly became the parent of a disabled child, and the last eleven years of being Ben’s mum have given me a rapid education. Up until his birth I had a probably-typical understanding of disability, which is to say very limited, and I found many aspects intimidating or incomprehensible. Now, I don’t. A lot of my insight has come from being close to and raising Ben, but most has come from listening to disabled people. This took time and I can now see there is an inevitable gap between new parents, who know little about disability, don’t know where to look for information and are worried, and disabled communicators who could help.
The challenge of being a new parent coupled with the responsibility for a disabled, in my case complex, child means the early years are often very muddled. I found it very difficult to separate which of my concerns were to do with being a parent for the first time (a colossal responsibility and profoundly discombobulating for anyone), and which were to do with Ben being disabled. I wonder whether I could have more quickly come to realise that Ben’s disability didn’t mean our lives would be sad and small, and found the disabled people and their families who were living lives that we could aspire to.
I think in the early years the gulf between my little baby and a disabled adult, however content, was just too large. I wasn’t ready to anticipate my boy growing up, but I was hungry for stories from other families and to see other parents living lives similar to ours. Through those families, I gradually came to see that there was a whole world of diverse disabled people living lives that were good and true, if sometimes challenging.
All parents are thrown in at the deep end, despite being surrounded by advice and people in similar situations. No parent does everything perfectly. New parents of disabled children generally have even more to contend with, yet are less likely to find themselves represented when they look around. They may depend on their experience of disability so far – the campaigns they have seen fundraising for needy adults, the limited exposure they have had to people needing help to access places and services. I couldn’t work out where our family fitted in for a long time.
It took me a long time to realise that Ben’s challenges weren’t only ours to face. They felt individual and specific, but they actually fit into a collective experience of being a disabled person. A lot of Ben’s difficulties are about how he is treated rather than how his body works. The power of disabled adults will become his power as he grows. I am more observant of whose voices are being centred.
As Ben’s mother I will always have a different experience of the world to him. I can be his carer, advocate and ally but I am (currently) not disabled. Yet I am his mother and that is itself a particular and specific role, for me as an individual and as a collective. I think talking about my experience is valid and there should be space to do it, as long as it is done carefully. The challenge of talking about mothering while not oversharing is not unique to me – it’s true for all mothers, of all children. The reason we share is because we are trying to work out what we are doing and who we are. I want to attempt to articulate what I have learnt because I’d like to help reduce the number of people who, like me, had no idea. I hope that is what I have done in my book, which is published in seven weeks (argh!), and I am excited and terrified for people to read it.
My son, Ben, is about to turn 11 and my approach to his disability has changed a lot since he was little. I am interested by how and when this happened. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently, but I was just doing my best with what I knew at the time. I think I would have found it helpful at the beginning to have read stories of other parents with similar experiences and so I am starting a series of interviews with parents who are raising children who are not typical. We will discuss parenting, language and expectations. This week it is with Alex, who kindly joined me for a walk in the pouring rain to answer some questions.
Could you describe your family?
I’m Alex. I have a husband and two children – Betty who is 11 and has complex needs, and Agnes who is nearly nine who doesn’t have complex needs. And a dog – a recent addition to our family!
What does Betty love doing?
She really loves singing and listening to music. Swimming and being in water. She likes being with people that she knows, though she struggles to know how to interact with them so that can be tricky. She loves Ben (Jess’s son), and his speaker! And bubbles.
How would you describe Betty? Would you say she was disabled?
Betty has some physical delay and she looks different and so sometimes I describe her as disabled and sometimes I say she has special needs. I think I refer to her having special needs more to do with behaviour, and say disabled more for her access needs. I remember when she was born and a nurse was talking about her having complex needs and I was really confused. I asked, ‘Oh, has my child got special needs?’ and she said yes. I didn’t know what the terminology meant. But now I use both.
When did you realise Betty was going to be different or disabled?
I was referred for tests during my pregnancy which showed she would have a rare genetic condition that nobody else has so we didn’t know what it would mean for her. As soon as she was born she wasn’t breathing, she was very still and didn’t cry at all for the first few days. She was floppy and couldn’t feed so there were immediate challenges straight away but the magnitude of it didn’t hit me until later.
How does Betty’s disability affect her day-to-day life?
It affects everything to do with her day-to-day life. Her genetic condition has affected her physical and mental development. As she’s got older she’s been diagnosed with ASD and ADHD, eye problems, scoliosis.
When she was a baby everything was focussed on her fine and gross motor skills, like sitting up and holding things. Initially it was all about endlessly grasping toys and trying to get her to stand. We had loads of equipment – a walker, a standing frame, a special chair, a wheelchair and all that. Then things moved on to her speech and language. Now our focus is on her behaviour because she’s very anxious and she gets very frustrated and which manifests itself as quite difficult behaviour. Now we have less equipment but her needs impact our family every day and she needs care all the time, in everything we do.
In what ways is your life how you expected it to be and in what ways is it different?
I was trying to have a kid for years and I couldn’t so we had to have fourteen rounds of IVF and then egg donation, and I had two miscarriages as well. By the time I had Betty I was so thrilled, so thrilled, to have a child I think that overwhelmed everything else. I couldn’t quite believe I’d got pregnant and had a baby. When she was really young I remember walking about in the rain one day and I was crying because I was so happy because I had a baby. Even though she was in hospital all the time and had to wear a helmet and actually it was quite difficult.
It’s maybe not what I thought it was going to be, but I don’t honestly know if I thought that far ahead because the pregnancies kept going wrong. Then once she was here I couldn’t think about the future too much because it’s too scary.
We’re very fortunate, very lucky in lots of ways, but it can be difficult. When I was pregnant with her and I knew there was something wrong, I thought my life was going to be hard. Everything I read, everything I was told, was all about how bad it was. There was nothing positive. It was all about the challenges you’re going to face, all ‘disability is bad’ and ‘she won’t be able to do this’, nothing about the benefit of just having a child, whatever they’re like. Just hanging out with them. I thought my life would be miserable and it’s not.
Is there anything that could have made the difficult bits easier?
There’s been plenty of people that have been incredibly insensitive. The first few years were difficult because I was in it and learning everything. Every report and every doctor that we saw told us what she was not doing, or what was wrong. People would say things like ‘I don’t think she’ll go to mainstream school’ but she was two! I’d think ‘Why can’t we just focus on now?’ I was lucky that when Betty was about one I found an amazing community nursery and that was really life changing. They were so kind and welcoming whereas other nurseries just didn’t want her because she was more work.
I think it would have helped if services had been more joined up and we’d had more access to services when she was little. Everything is stretched and help is limited. It comes down to money and understanding from people
We had a really lovely nurse that came and gave me a list of all the things I could access, like conductive education, Disability Living Allowance, but unless someone tells you that information it’s quite impenetrable. I think one of the best pieces of advice I would give is try to find some other parents with kids that are different. That is the biggest help that I have had, and that is often where you find the best information. Just because my daughter has a different disability to your son, it’s the same experiences we’re having, even though they’re different kids. In the way their siblings deal with it, or we deal with it, or our families. A lot of it is practical stuff. I think finding people who understand is profoundly helpful.
What would you change if you could?
I would make Betty’s challenges less difficult for her so she could have an easier time but all the things that affect me are things that could be changed. When the Olympics and Paralympics were on in 2012 we went to the Olympic village and it was so easy and brilliant. If things were more accessible and people were more understanding and a bit more appreciative of difference then it would be easier for everyone.
What do you wish people knew about your family?
When Betty started to walk, when she was four or five with a walker, people would all go ‘oh look! She’s walking!’ like that was it. I could tick it off. People have the best intentions, but they cling on to these things, like walking, when she still now has problems with her gait. It’s more complicated than just learning to walk.
I’d like a bit more understanding that you’re not saying no to things or not doing things because you’re being difficult or don’t want to but because you can’t. I don’t want pity, but there’s a lot of planning you have to do just to get out the door, or go on holiday, or feed my child. It isn’t quite straightforward. Everything takes time.
Sometimes you’re knackered because you’re up all night, so maybe be a bit less judgey and a bit less pity-face. We’re not brave soldiers because we’ve got disabled children. We’re just mothers.
Betty is an 11 year old child. She has special needs but it’s not all she is. It’s just part of who she is. She’s a kid. She’s my daughter and she’s funny and she likes ABBA. She can’t do lots of things but that’s alright. I think sometimes you can end up defining everything by about what your child can’t do not what they can. Don’t pigeonhole her.
How has your parenting, and your approach to your daughter’s disability, changed over time? How would you describe how you have changed?
I’m more relaxed about it but I’m armed with knowledge and experience and I don’t think I could have fast-tracked it. I was so worried at the beginning about targets and appointments – every week there would be something at the hospital, but I quite liked that. It was like a security net in some ways being surrounded by people who knew what they were talking about. I felt like I was doing something.
We did endless exercises at home but it all became a bit about that, to the exclusion of anything else. I remember talking to somebody who had taken a standing frame for their kid on holiday with them and they were doing it by the pool and now I’d be like ‘You’re on holiday! Why don’t you just not do that?!’. But you get so caught up worrying that something bad is going to happen if your child doesn’t do so many hours in the standing frame. Now I think I could have done three times the amount of time in the standing frame with Betty and it wouldn’t have made any difference to her development.
I think having my second child made me realise that. I did very little with her and one day she just got up and walked across the room! I hadn’t spent hours showing her what to do or buying her special shoes. I think in hindsight I would try and just enjoy having a child irrespective of the fact that they’ve got a disability.
People see me as the parent of a child with a disability not just as a parent. Sometimes it’s quite nice if you meet people who don’t know and they just treat you like everyone else, not be weird about it or try and help, try to make it better. People want to help and that comes from a place of kindness but it’s exhausting when they’re trying to fix it for you and it doesn’t need fixing and it can’t be fixed.
Agnes had to have a massive heart operation as soon as she was born and the heart problem could have been an indicator of a disability. I was a bit more like ‘well, it’ll be alright, it’s just heart surgery’ but also I was a bit less scared of it. I’m not scared of disability.
I’m not very good at asking for help and just to acknowledge that it’s harder for me than it might be for somebody who hasn’t got a disabled child was quite difficult for me to do. I don’t want to be needy. I don’t want pity. I don’t want a sad face and a link to an article about gut health. But some people will just bring you a meal round if they know you’re struggling. Sometimes I just want a lasagna, or a beer!
Having Betty has completely changed my whole view of everything. You see everything through the lens of having a child with difficulties and it’s made me not sweat the small stuff. But also be a bit more tolerant of some people and a bit less tolerant of others. I’m more understanding of people who are different.
I’ve met some of the greatest, loveliest people through having Betty and it’s made me think about things differently. I’ve had experiences I never would have had and lived my life in a way I wouldn’t have lived it so I’m grateful for that.
I continue to spend a lot of time trying to find books (and comics) which have disabled characters and these are seven of the best for primary school age kids. They cover a range of characters and impairments. I’d say they’d suit roughly ages 5-8. These are a bit too long or complicated for Molly (age 4) but have been good for Max (now 8) and some are still interesting for Ben (age 10). Let me know if you know of any other books with disabled characters that you love!
I have put online shop links by each one.
Buy I Am Not A Label by Cerrie Burnell, Lauren Baldo from Bookshop.org here
Buy A Kids Book About Disabilities by Kristine Napper here
Buy Stephen Hawking by Isabel Sanchez Vegara, Matt Hunt here
Buy Don’t Call Me Special by Pat Thomas, Lesley Harker here
Buy Not So Different by Shane Burcaw, Matt Carr here
Buy The Girl Who Thought in Pictures by Julia Filey Mosca, Daniel Rieley here
Buy Department of Ability comic by White, Scrivens, Jones here
The Cracks That Let the Light In: What I Learned From My Disabled Son is about the last ten years of my life, becoming a parent and then working out how to be Ben’s mother.
People often assume that having a disabled child is awful, a pity party. It isn’t. Some things about being Ben’s mother have been difficult, and my learning curve has been steep, but our lives aren’t miserable. In fact Ben is thriving and my children and I try, much like any family, to live the fullest and happiest lives we can. My book is about how being Ben’s mother has changed me for the better. It’s about family love and hope.
‘An honest and unflinching account of Jessica’s journey as the mother of a child born with complex needs. Essential reading… and a source of solace for those who may find themselves on a similar path’ Leah Hazard, author of Hard Pushed: A Midwife’s Story
I am so pleased to be working with Octopus imprint Endeavour. The book will be published on 4 March 2021 and you can pre-order it (links below). I would be delighted if you did!
Having three children at school has freed up time for me to usefully spend on admin and being angry. We have to submit an application for Ben to go to secondary school next year (How is he old enough? Where did my baby go? Etc. etc.) It’s a straightforward form where we express a preference and the Local Authority then processes applications, consults with schools, reviews Ben’s Education, Health and Care Plan (EHCP), and allocates a school to him.
But of course it doesn’t feel straightforward at all, because all decisions about education are set against a bleak landscape of onerous budget constraints.
We would like Ben to move to the secondary campus of the school he already goes to, but this will require our Local Authority to agree to him continuing his education ‘out of borough’. Judging by the experiences of our friends with children slightly older that Ben, they might push for him to stay ‘in borough’, which is cheaper largely because the transport costs are lower. We’ll see…
What makes it anxiety provoking is that it’s hard to trust that decisions about Ben’s education will be made on the basis of what is best for him rather than on the basis of squeezed budgets. Spending on education has fallen, and the amount of money given to Local Authorities to fund schools has dropped, while the number of pupils needing extra support has increased. Of course it has, because if schools are stretched then they need formalised funding (an EHCP) instead of informally supporting children within the standard offer of schools.
Ben’s EHCP sets out what he needs to learn and it’s worked brilliantly for him. It opened the door to his current school which has supported him well. The process to get him into school initially was horrific, but let’s save that for another time. So the EHCP process can, and does, work for some and Ben has benefitted hugely from his EHCP setting out what he needs and then matching the funding accordingly. But past success is no guarantee of future provision. We don’t know if the Local Authority will agree to Ben staying at the school that he has thrived in and if they don’t then we will have the option to argue our case against the Local Authority in front of the Special Educational Needs and Disability Tribunal.
The introduction of EHCPs was meant to solve the issue of funding for pupils with special educational needs but of course it has not, and parents take their cases to tribunal every day either to get the support their child needs or to get an EHCP in the first place. They have a good chance of winning – 92% of the appeals decided last year were in favour of the child, family or young person. 92%! So Local Authorities know they are likely to lose but take families to tribunal anyway. It is estimated that Local Authorities spent £40m spend in 2018/19 on SEND tribunals. By all accounts, going to tribunal is hugely stressful and expensive (if you can afford a lawyer) and the child or young person is left waiting for support.
Families are going to tribunal because it is the only way to get what their child needs in a system where there is almost no extra capacity. The number of pupils in special schools has increased, but mainstream schools are still trying to support pupils with special educational needs and insufficient funding. As the head of Max and Molly’s school told us, ‘A recent survey of 600 Headteachers showed that 94% found it harder to resource SEND than two years ago and only 2% felt top up funding was sufficient to meet Education Health and Care Plans.’ This kind of funding shortfall inevitably results in children not being taught as well as they could be, and those who could manage in mainstream schools with the right support moving to more specialist provision where they will. Which is a kind of segregation.
The effect of this creaking system on children and their families is awful but obvious. But even if you, like us, are lucky enough for your children to be in good schools, with really good teachers, it feels like you’re on the edge of a precipice. In England total school funding has fallen by 8% since 2010. Education spending as a percentage of gross national product has fallen from 5.8% to 4%. We know what the pinch of funding cuts feels like – the respite stays that have been withdrawn, the transport to playscheme that evaporated, the wheelchair appointments can’t keep up with the growth of Ben’s legs. My family has been insulated from the worst, but none of it feels secure. Perhaps we are just one decision away from Ben not being at the school he loves, or getting the help with communication that he needs.
It doesn’t feel like the system isn’t set up to be fair and right, but rather is trying to keep going in almost intolerable scarcity and it needs to ration the resources it offers. It doesn’t offer additional help when it might be useful, it needs each person to prove beyond all reasonable doubt that the help is essential before the money can be released.
This should fill us all with rage: for the pupils who aren’t getting the support they need, for the families that have to commit to stressful tribunal processes, and for schools that are struggling to give pupils educational support in a near impossible situation. I’ve written about this before here, and no doubt I will again, because it’s outrageous. The government are encouraging schools and parents to see SEN pupils as draining funds that could otherwise support more kids. They are overseeing a shift that encourages pupils towards special schools, not necessarily because that is the best place for them, but because that is the only place that might have appropriate support. That is a travesty for all our kids, who find themselves educated in less diverse, less inclusive schools.
Who knows what will happen with Ben’s secondary placement. I think it’s common to find a child moving to secondary school stressful but surely it doesn’t need to be this way. The system is set up to pit families against Local Authorities, schools against parents, and the dynamic is forever stacked against those with least power. Education is not this government’s priority and that’s exactly what it feels like.
Of all the things this government is doing to reduce opportunities, increase inequality and further demonstrate its disregard for disabled people, this is the one I am most angry about this week. It’s not fair on our children or their teachers.
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)
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?
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…
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.
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.
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.
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.
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.
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.