My Book is Out!

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.

There’s a brief video of me talking about why I wrote the book and what it is about here:

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 

A powerful, moving and inspiring story – it opens up a whole new world of understanding.’ Esther Freud

‘The Cracks That Let the Light In chimed so clearly with my own experiences of growing up with a disabled older sister and my feelings as a parent. The book reveals that disabilities only make people difference up to a point. And that parenting, and the love of a parent, is the same.’ Rory Kinnear

‘A universal story of family. This uplifting read sets out what it means to be human, how our similarities are far more obvious than our differences and the powerful force of maternal love. I loved every word of it.’  Rebecca Schiller, author and Co-founder of Birthrights

It is available to order now:

Bookshop.org

Amazon

Waterstones

WH Smith

Foyles

Blackwells

A Parent Perspective: Interview with Rachel

My son, Ben, is 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 interviewing parents who are raising children who are not typical to discuss parenting, language and expectations. This week it is with Rachel Wright, who kindly met with me (virtually) to answer some questions.

Could you describe your family?

I’m a cliché. I married the boyfriend that I got together with at 17. It gets worse though, because he’s a doctor and I’m a nurse. We have three sons: S is 15, J is 13 and E is five.

How would you describe your eldest son?

He is a boy that laughs from the tips of his toes to the top of his head – he has the dirtiest laugh on the planet. He loves Pointless and could happily watch five episodes in a row. He loves swimming and music, making disco showers the best time of the day. He sings very loudly and if you’re not attuned to his kind of singing, it may sound like he’s complaining. To those of us close to him, it looks and sounds very different. He enjoys an eclectic range of music from Romeo and Juliet to Chemical Brothers, and some cheesy Christian kids music he’s been subjected to since he was born.

If a doctor asked me what the matter with S, I’d say he has quadriplegic cerebral palsy, is registered blind, PEG (gastrostomy) fed, has microcephaly and very complex health needs. He needs 24 hour, seven days a week care.

I describe him has disabled, or as having complex needs, or I talk about his life-limiting epilepsy. I recognise that I’m not disabled so the terms and language used are not for me to own necessarily, but I am not ashamed of his cerebral palsy and disability any more than his blue eyes and brown hair. I’m not going to attach any level of shame because I value vulnerability. I am convinced that our fragility isn’t something which needs fixing rather our weaknesses are at the heart of where connection and purpose is born.

When did you realise that S was going to be disabled, or that he wasn’t going to be a typical child?

As soon as he was born, he didn’t breathe and was ventilated. We were given percentages at that point of his chances of having a disability. We carried hope with us until clarity came at ten weeks old when we had an MRI scan that showed every part of his brain was affected. We went into that hospital with the hopes of minimal or no impact, and walked out with the reality of a very severely disabled child.

How does S’s disability affect his, and your, life day to day?

S likes things the way he likes them. I guess partly because of learning disability and partly blindness. He’s most comfortable when his world is structured and he knows what’s happening. Obviously he still surprises us in a positive way but there is also no hour where there isn’t something that needs doing, whether that’s his milk, meds, or repositioning. That continues through the night. It’s been 15 years of day and night care, which impacts our lives.

I find it really hard to express the relentlessness of that without feeling guilt over betraying one of my biggest loves. I don’t know how to explain how hard it is without implying a level of not loving enough. What I try to remind myself is love doesn’t give me more hands, more hours, or more emotional strength. As a nurse, I got lunch breaks and to go home and sleep. As parents we might have to do the night and then still take the kids to school in the morning, before going to work and then caring the rest of the day. I think it’s really hard to look after your emotional self with the constant logistics of caring for a child with such complex needs – the 80+ people that we have to communicate with, the necessary tasks. With our other kids, I can take a break, say ‘let’s just get pizza’. But I can’t be like ‘let’s just not draw the meds up tonight’. There isn’t that option.

It can feel like there’s no margin in the day, and there’s so little permission to not do things. The emotional drain of that can make you feel like you’re failing the whole time. You get to the end of the day and you can just see the five things that you didn’t do, even if you actually did twelve other things.

In what ways do you think being a parent has turned out how you expected it to? Are there things that are particularly different or, or things that ended up being the same?

I had expected to be parenting somewhere else in the world, maybe South America or Africa. I was going to deliberately choose my life to be different, where we would be doing medicine in other countries. I guess I expected to have complexity, but I thought it would be completely different. When S came along it threw our plans of working abroad out the window because we needed to be near lots of support. We’ve now been living in our house for nearly 11 years, and that’s the longest I’ve ever lived anywhere my whole life.

Another way it’s different is our capacity to be outside. My husband loves camping and we will camp all year round, but it’s difficult to be spontaneous, to have that ability to travel. S can’t camp when it’s cold and we need five hours of near military operation to simply leave the house. There is so much kit we must remember or practical aspects to consider. We do try to take it in turns to travel alone or without S each year.

The way it is similar is the way that we approach things. I guess S expedited our mid-life crisis. We are focused and very value based. We continue to struggle with an evolving faith.

How do you think being S’s parent has affected how you parent your other children?

I think parenting brings out the best and worst in you. It amplifies aspects of your personality. We were both pretty laid back. When we got pregnant a second time, S was nine months old and wasn’t rolling or grasping, but by the time our next son was born we were in and out of hospital with S’s epilepsy and feeding complications. It was a massive change. I think our parenting was all up for grabs, because it was so disorientating.

That definitely meant when J loved food, he had whatever he liked! I loved how excited he was about ice cream. When he was fussy and didn’t want to eat I knew he wasn’t actually going to starve, so I didn’t worry about it.

Until J was eight years old (when E came along) he had lived his whole life as the second child, just having to muck in because the world didn’t revolve around him. But we also had to try everything out on him because we hadn’t done it before. He was doing things for the first time, but without the undivided attention of being an eldest child.

I worry sometimes that because of S’s complex needs, I didn’t support J to the extent that I could have done. The way J progressed just blew my mind but maybe I would have been more on the ball if I hadn’t had such a skewed perspective. Meanwhile Ethan, as the youngest, just runs rings around all of us.

Are there ways in which being a parent has changed you over the last 15 years?

Yes – completely, and not at all! I think I really lost myself for the first few years, under layers of guilt, expectations on myself, perceived expectations of what other people thought of me. Having S threw everything up in the air, and we had to piece things back together.

I’ve become a lot more feminist. I have a husband who is proactive at home he easily takes care of children and home when I’m not there but the logistics are all still down to me, partly because it’s not realistic to split responsibility for that.

At the start of the pandemic, in March/April last year, I had a massive meltdown because all the emotions I had when I first became a parent were exposed again. Everyone else was making decisions for me. Everything I had worked towards disappeared and there was nothing I could do about it. I was so consumed by the jobs that had to be done minute-to-minute that I couldn’t see how to carve anything out for myself. But also, the layer on top of that was that it would be so different if I had been a man. If the expectation hadn’t been that I was the person who was going to stay at home.  My husband earns a lot more money than me, my position as a nurse would always play second fiddle to his role as a GP because I earnt less and couldn’t support our family with my wage. But that feeling of loss, that the last 15 years of not working has impacted my ability to do things now, is something I’m processing.

It feels like when we were clapping keyworkers last year we’d realised the things that made a difference were people that put food on the shelves, who were looking after the vulnerable. But that narrative was sadly still founded on pity rather than value based. We continue to do that with Children in Need and Comic Relief. We portray families like ours with a big violin and a greyed out scene, and then they get a therapy or opportunity and the sun comes out, faces start smiling and…isn’t it lovely. People are quite happy to give a couple of pounds to that. It makes us feel better and distracts us from the need to value and fund the infrastructure within society needed, or recognise our gender-specific values.

The reason things like EHCPs (Education, Health & Care Plans) and IEPs (Individual Education Plans) fail is because we take these things, which rely on collaboration, and  plonk them into a patriarchal system that relies on an ideology of productivity, that is financially driven. They don’t look at how this affects people – how much they feel valued, or whether they’re failing because they’re not in a system that can support them. Then when the plans do fail, they say ‘Oh, look, we tried to be collaborative but it didn’t work’.

I think as a parent I’ve got an incredible capacity for guilt. With my five year old, if I don’t sit and read to him he might not be a great reader, but he’s going to learn to read. With S there’s this feeling that it’s down to me. It partly comes from the number of practitioners who are telling me, ‘Just do 10 minutes of this. It’s really vital.’ So vital that they’re not going to do it for us, I have to do it and they’ll see us in six-month’s time. Imagine if practitioners sat down together and decided with families what the priorities are, because parents can’t do it all. This should be about a person’s life and all the people around them taking some of the responsibility.

I’ve always been a challenger and agitator but I get consumed by the emotions of having to fight battles on behalf of my son. I didn’t want people to feel sorry for me, I want to live in a society which values S and our family. I want part but not all of my identity to be tied up in being a parent. Slowly I’m finding who I am again. I love that Brene Brown quote: ‘When we deny our story, it defines us. When we step into our story, we get to write a brave new ending.’ I was so geared up for a different story that I lost who I was, and it was only when I started stepping more fully into my story that I began to be able to make proactive choices which feel more like thriving than simply surviving.

Rachel’s website is here. You can follow her on Instagram, Twitter, and Facebook.

Her book, The Skies I’m Under, is available here

Rachel runs parent workshops and CPD accredited training for professionals which can be booked through Eventbrite.

A Parent Perspective: Interview with Penny

My son, Ben, is 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 interviewing parents who are raising children who are not typical to discuss parenting, language and expectations. This week it is with Penny Wincer, who managed to fit in a call with me to answer some questions.

Could you describe your family?

I’ve got two children. Arthur is 11 and Agnes is eight, almost nine. We live in South London though I’m originally from Australia and I’m a single parent, though I have a boyfriend who doesn’t live with us. 

How would you describe Arthur? 

Arthur is autistic and he has learning difficulties. He can speak but his speech is not typical. He’s a really happy kid but when he’s not really happy, he’s quite unhappy. There’s quite a roller coaster of emotions, which are quite extreme, so it’s never boring!

What does Arthur love doing? 

He loves anything really stimulating like fireworks, trampolines, funfairs and bright lights. He loves sand, the beach, water and waves. I gave him some helium balloons this morning and they make him so happy. He also really likes cuddles, wrestling, hide and seek and chasing.

When did you realise that Arthur was maybe different to other children that you knew, or to typical children?

At around 18 months old it became obvious that he wasn’t quite in the same place as his peers. I wasn’t concerned at first, but he started having really serious meltdowns which seemed more intense than other kids. He was always happy or sad and there wasn’t much inbetween. 

When he was around two my daughter was born and he reacted really badly. He either ignored her or got really upset when she made a noise. That was when I thought there’s something different here. I spoke to the health visitor at first and because I wasn’t that concerned, she wasn’t either. Arthur’s eye contact with me was really good and I hadn’t realised that he’d stopped doing many of the things he’d done when he was younger like turning round when someone unfamiliar called his name.

I asked for a referral and did a lot of research. In the first appointment with a developmental paediatrician, when Arthur had just turned three, she asked us what we thought and Arthur’s dad and I both said, ‘we think he’s autistic’. She said it was too early to confirm, but agreed it was likely to be the diagnosis eventually. We were expecting it so we weren’t shocked, or even that upset, when it happened.

We were first time parents so we didn’t have other children to compare him to, but seeing the developmental reports in black and white was really hard. I’d had no concerns about Arthur in his first year but I can look back and see he was a bit different. By six to nine months old, Agnes was doing things that Arthur couldn’t do, like waving, and it was a real shock. 

When he was diagnosed we thought we’d get some help but really nothing was forthcoming and that was disappointing. We had to start the long process of a statement of special educational need (now Education, Health and Care Plan) when he was three and a half, and he then went to a mainstream school with one-to-one support. He did three years there which he didn’t hate it but he wasn’t thriving. He needed specialist teachers and a low stimulation environment, so he then moved to a specialist school and it is absolutely amazing. I feel so much more supported as a parent. 

Can you talk a little bit about how Arthur’s disability, if you would use the word disability, affects his day to day life, and your family?

I do refer to his disability unless I need to describe his needs specifically, and then I might say autistic. Sometimes I prefer ‘disabled’ because not everyone needs to know his needs all the time. Sometimes they just need to know he has accessibility needs. I don’t shy away from the word ‘disabled’ because I want my son to be comfortable with it, and I want the people around him to be comfortable with it. It’s a fact. 

Arthur is incredibly rigid and struggles to process information if things are not the same all the time. That means that we have really fixed ways of doing things and if there are any changes it can be quite traumatic (and I don’t use that word lightly). Now he can use language he becomes fixated on and repeats things. He’s generally an anxious child and he finds the world quite scary, and that means him repetitively asking to do the same thing over and over again, to hear the same answer and to understand. Keeping him in routine is really important because then he’s less anxious and more able to engage in the world a bit. He needs a lot of sensory stimulation – lots of physical activity, jumping, wrestling, running. If he gets enough of that, then he’s calmer.

He can use concrete language, so he can point things out to me and ask for some things. But he can’t really use abstract language to tell me how he feels or about something that happened previously or in the future. The way he uses speech is not typical but it’s improving all the time. Speaking is so useful for him but people don’t understand that it doesn’t make him less autistic. It’s still really hard for him to get his needs across. He’s started echolalic speech, so copying things, especially from TV. He’ll be just scripting to himself and he’ll say what seems like nonsense to everybody else over and over again, but then he’ll learn to use it in context. The first time he called me Mama was when he was about four and a half and he learned it from the film of The Gruffalo. 

He doesn’t have friends in the typical sense but he connects really well with other adults and is a very good judge of character. When he was really little that concerned me but now I know he can connect with adults and he will be an adult, so he will have friends who are peers eventually.  

In what ways is your life how you expected? And in what ways is it different?

It’s so different to how I expected. One of the biggest things is that I’m Australian and Arthur can’t fly so he hasn’t been to Australia since he was one. It’s been a really big deal that I’ve had to get my head around. I go on my own, occasionally, and I will take my daughter eventually, but it’s complicated. It would be wonderful if the kids could know their extended family.

I never expected I would be in a situation where I’m so reliant on the outside world and how precarious that feels. For example, I’m dependent on the local authority for Arthur’s school, transport to school, holiday club, and that dictates how and when I can work. I never expected that my choices would be restricted like that. At any moment, something can change (particularly in the last nine months) and I’ll have to completely reshuffle my life to replace whatever has gone or changed. It’s one of the things that I find most challenging. It’s quite hard to explain to people the lack of control and the lack of options that I have with a disabled child.

I think the difference between being a parent of a typical kid and being a parent of a child with a disability is it’s not better or worse, but we might need more – more rest, more breaks, more help. It’s all fine and manageable when I get the extra help I need and the extra rest I need. I don’t wish it away. It’s just different. But when you have all that taken away, suddenly you realise just how quickly you’re hanging by a thread. I need help and rest to be a together human, a good parent, friend or girlfriend. I think that’s true for everybody, I just think it’s a bit more extreme for those of us with kids who need a bit more from us. 

But I think it’s as good as I expected it would be. It’s also way more challenging than I expected, but I think most parents would say that. Parenting is more emotionally extreme than I expected. I thought it would be a bit more calm and stable. I’ve coped with way more than I thought I would. I have a life that I love. I have moments where I’m definitely not coping, especially this year, but generally I have a really lovely life. 

How has your parenting and your approach, particularly to Arthur but maybe to both your children, changed over time?

I think when he was first diagnosed, I was in a panic about how much support he needed and how quickly he needed it. Everything I read was about early intervention but nothing was being provided. I went looking for play therapists, paying for private occupational therapy. I changed his diet. I was stressed out to my eyeballs becoming an expert. And thank god I chilled out because it was completely unsustainable. Eventually I calmed down and realised I can’t control this. I accepted that we’re never going to get the right amount of support, and we’ll just do our best with what we can, which is not easy. The thing that scared me so much when Arthur was three or four was the fear that I would be the reason he didn’t thrive. That it would be my fault because I chose the wrong therapy. You can completely twist yourself in knots about that kind of stuff. Every now and then I have a flash that I’m doing the wrong thing but I don’t dwell on it the same way. I have accepted that his disability is out of my control and I just have to do my best and I can’t do anything else. 

How has being Arthur’s parent over the last eleven years changed you?

I see the world completely differently. I didn’t used to think I was a judgmental parent or person but I’ve had every bit of ego stripped away from me as a parent. I realised how little control I had over my life and I think that’s been an incredible experience which I’m grateful that I’ve had. Society was telling me that as a mother, it’s all my fault if he doesn’t thrive. And actually I’ve learned that isn’t true. You don’t have control over everything, and that kind of takes your judgement out of it. I look at families who are struggling now and I see a million reasons why that might be happening. 

I used to be very eco conscious to the point where I never used to drive my car, everything was on foot. The kids were in cloth nappies. Then I realised that a lot of those choices were taken away with Arthur’s disability. Like he only eats one kind yoghurt (one of only four foods he eats) and it’s in a tiny plastic pot. I’ve just got to buy the plastic pots. And now I need to use the car far more, to keep Arthur safe and for us to be able to function as a family. So I’ve had to let go of judgement around how other people make those choices, and that’s been incredible. 

Find Penny on Instagram and Twitter @pennywincer

8 of my Favourite Non-Fiction Books about Disability

I have tried to find books written by disabled people and these are some of the best I have read. These have all given me valuable insight into the experience of being disabled – some are also confronting (which is necessary), some are beautifully written, some are funny. All are worth your time if you, like me, read in order to widen your understanding of people and the world.

A good place to see more is by following #disabilityreads on Instagram.

1. SITTING PRETTY: THE VIEW FROM MY ORDINARY RESILIENT BODY by REBEKAH TAUSSIG

This is one of my favourite books, of any genre. It does exactly what I want a book to do – speak truthfully and lyrically about complex issues. It really digs into the ways that disabled people are made to feel like the difficulties they face are individual, when actually they’re societal. It’s funny, feminist, and powerful.

Buy it here

2. DISABILITY VISIBILITY: FIRST-PERSON STORIES FROM THE TWENTY-FIRST CENTURY edited by ALICE WONG

This is a collection of writing by a really diverse group of disabled people and so there is something for everyone. I have dipped in and out of it, taking my time to read the whole book. The range of topics and styles make it a powerful anthology, representing views and insights that I haven’t read elsewhere.

Buy it here

3. SAY HELLO by CARLY FINDLAY

Carly Findlay is a colourful, insightful presence on social media and her book is just as clear and powerful. She challenges how we approach physical difference and disability, and how widely held assumptions affect her, and is entirely convincing in dismantling prejudice.

Buy it here

4. THE PRETTY ONE by KEAH BROWN

This collection of essays covers disability, popular culture, race, discrimination and how to find joy in complexity. It’s about a woman growing up in America and Keah Brown is a smart, accessible narrator. 

Buy it here

5. CONSTELLATIONS by SINEAD GLEESON 

I don’t often re-read books but I have read this twice. I absolutely love Sinead Gleeson’s writing. This collection covers parenting, femininity, family, love, death and bodies. A lot of it isn’t explicitly about disability, but her descriptions of being ill and using a wheelchair as a younger woman are powerful and affecting.

Buy it here

6. DEAR PARENTS by MICHELINE MASON

I was lucky to see Micheline Mason speak when my son was younger, but this book is a good alternative to hearing her in person. Micheline addresses the relationship between disabled children and their parents. She is both a disabled person and a parent of a disabled child and her insights can feel challenging, but are undoubtedly necessary.

Buy it here

7. WHAT THE **** IS NORMAL? by FRANCESCA MARTINEZ

Francesca Martinez is a comedian and so, of course, this is a funny book about being ‘wobbly’. She combines autobiographical detail with a more general campaign against the ways in which we are taught that normal is best.

Buy it here

8. THE WORLD I FELL OUT OF by MELANIE REID

Melanie Reid became disabled following an accident and so this is an account of coming to disability relatively late. It describes all the ways in which she had to accommodate her changed body, and how that altered the ways she saw and was seen by the world. It is unflinching and compelling.

Buy it here

A Parent Perspective: Interview with Sabrina

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 Sabrina Russo, who kindly let me video call her one evening to answer some questions.

Could you describe your family?

I am married to Simon and I have two children – Theo, who’s about to turn seven, and my daughter, Lucy, who’s going to be four in April and she is the child with disability in our family.

What does Lucy love? What is her favourite stuff, what makes her happy?

She loves Peppa, completely. She loves the swings at the playground. She’s actually getting too big to lift into the baby swings and there’s no other accessible options so that’s something that’s going to start annoying me very soon. She loves singing. She is a real scribbler, especially on the table rather than on paper. She loves having stories read to her. 

When did you realise Lucy was different to your older child, or not typical perhaps?

I noticed that there were certain things that she wasn’t doing when she was about four months old. That sparked a kind of question mark, in my mind. I remember putting her in a baby bouncer that had little dangly toys and suddenly thinking she doesn’t swat them in the way that I remember Theo doing. I thought she was very relaxed. I took her to a baby physiotherapist who said she was a bit floppy but he wasn’t alarmist in any way. I googled hypotonia, which is weak muscle tone, and I remember reading one line that said hypotonia is not a condition itself, it’s always a symptom of something else. I then went down a rabbit hole of trying to diagnose my kid and many months of not being taken seriously by medical professionals. 

That was tricky because you don’t want to be the mother looking for a problem. People would say, ‘Well, she’s just taking her time. Don’t worry about it.’ But there were lots of little things that were adding up in my mind. When we got to the point where she ought to be weaning she couldn’t swallow any purees. She started having some tests and when she was one and only just sitting up the doctors started properly looking into it. They did a genetic screening and that showed there was a bit of her DNA missing. I think the period was maybe nine or 10 months of searching for an answer and when it came I felt vindicated in a weird way. It was kind of a relief. But it wasn’t a straightforward diagnosis in the sense that it isn’t a genetic anomaly that correlates to a recognised syndrome because there aren’t enough people that have it. There wasn’t a ready-made support group where I could find out about things and get a glimpse into the future, so there was quite a lot of sort of worry and uncertainty at the beginning.

How did you find the early years with Lucy?

She was a very undemanding baby. She didn’t really cry much and she was very observant. She just slotted into family life and Theo was very sweet with her.

But after we had her diagnosis I had a feeling that I had no idea what I was doing. From the practical stuff of accessing services and doing what’s right for Lucy, but also at a deep identity level. I already felt like being a parent was quite hard. There’s loads of stuff that you don’t know if you’re doing right. I felt the weight of responsibility of this child being more vulnerable than we had imagined and we have to make sure that she has a good life. 

Now, a couple of years post diagnosis, I know that in a lot of ways it’s not that different to parenting any child. There’s a kind of relinquishing of control that happens anyway when you are a parent. It’s always a big responsibility. With typical kids you have all sorts of situations that you feel slightly out of your depth. All the time. But I had a kind of slight imposter syndrome – I had this kid who was going to need me to be a good parent, as opposed to a good enough parent. I felt like I needed to up my game, be more professional. It wasn’t that I thought she was a burden. It was more a reflection on myself. I worried about me as much as I did about her – about my, our, ability to be the people that she would need us to be. 

What is different from how you imagined parenting two children would be?

I don’t know what my expectations were. I think I had expected that they would be friends in a way that they’re not right now. Lucy adores Theo and is fascinated by everything he does. And he is really sweet with her but they don’t play. But they both really like having stories read to them so we can all read together. 

I think we do a lot more split parenting, where one of us takes a kid each and we do the thing that is appropriate for that child in order for them to have a fun time. Then we reconvene as a family rather than trying to do everything together, because it often doesn’t work. You have this notion of what a good family life is and you think that means doing everything together, but that’s not necessarily what it has to look like. 

What have you found hard, over the course of Lucy’s life?

I found it hard at first knowing how to talk about her disability. I still find it hard in a way. I don’t know how much to say. When you first meet people, how deep do you go? I’m someone who is really private in some ways and a big over-sharer in others. I sometimes tell people more than they are expecting and then they get that look on their face, and I’m like, ‘Oh, no, don’t worry. It’s okay.’ Or I don’t say anything at all, but then sense that the other person may be looking at Lucy and wondering ‘why isn’t she walking?’. I’d like a handbook for navigating social interactions so they aren’t awkward. In a way, I think this will only get easier when society as a whole stops being so weird and awkward about disability. It just needs to be a normal, ‘fact of life’ thing to talk about.  

When you’re in a couple and you’re processing stuff at different speeds, that’s tricky. My approach to the early days was knowledge is power – I’m going to absolutely learn everything I can until it desensitises me to the shock. I reached out to parents whose kids had not exactly the same genetic deletion as Lucy’s but close. It turns out every single child had a completely different set of things. I’d come back and say to Simon, ‘I spoke to this mum and her kid is completely non-verbal but she can walk and she can do x and y’. Then I’d talk to another parent and say, ‘her daughter speaks, she speaks loads, and she’s autistic.’ So I was trying to prepare myself for all the eventualities – Lucy might speak, she might not speak, she may be autistic, she may not be autistic, she might walk, she might not walk. I wanted to know about all these possibilities so they wouldn’t faze me. Whereas my husband, Simon, was kind of in denial and didn’t want to know about the future.  He had the attitude of Lucy is Lucy. We’ll just take each day at a time and we’ll figure it out, whatever happens. Navigating our relationship with each other was difficult at times while we struggled with that tension.

Now, we’ve met in the middle and taken each other’s perspectives onboard. Initially I found Simon’s approach quite frustrating, but I think our paths have converged which is good. If you do come out the other side, you do feel like your partner’s really got your back and you’re a team.

Are there things that make you angry, or are there things that you feel like parenting Lucy has opened your eyes to?

The process of accessing benefits and services can be bewildering. I put off applying for DLA for her for ages – I’d take one look at the pile of paperwork and think I couldn’t face it. Now we’re trying to get an EHCP and it’s so much harder than it needs to be. It’s just unnecessarily difficult and it’s clear that those difficulties are a way of discouraging people from doing it, right? Nothing is co-ordinated. 

I’m not even thinking yet about physical accessibility of buildings and urban planning because we’re still in buggy mode and we can mostly lift her. But that will soon become something that I start getting angry about. I was with Lucy at a big station the other day and the lifts weren’t working. That’s just unacceptable – this is public transport and this is a member of the public. If you’re going to do maintenance on a lift you need to figure out some alternative. 

There’s loads of stuff that is unnecessarily onerous for disabled people and then you wonder why you don’t see so many disabled people around. It’s like a self-fulfilling prophesy. You don’t see people out and about having a good time because places can be so inaccessible, and because there’s this lack of visibility, disabled people continue to get overlooked. Disabled people can and do have full lives, but society doesn’t make it easy. All of that makes me angry. Not for me obviously, the impact is on my kid. She’s the one who ultimately stands to gain or lose, I’m just the middle woman. 

I also found it quite remarkable that throughout the whole time when I was trying to find out what was going on with Lucy and then getting her diagnosis, at no point did any one of the millions of professionals that we’ve come across ever ask me ‘How are you doing? Are you okay?’ Thankfully I am, but there were moments when I felt overwhelmed. The system doesn’t think holistically about families and helping the whole family. 

How have you changed since having Lucy, and what has helped you?

Before Lucy, I had no real first-hand experiences of disability and my perceptions, I now realise, were heavily influenced by a lot of limited narratives that we see in the media and popular culture. I think it’s important to seek out and meet people if you can in a similar situation, because you see that often they are living a pretty normal life. I took to Instagram early on with the purpose of finding people who were leading the kind of good lives that I wanted us to be able to have and that’s been really helpful. I needed to see the things that I felt were important to us, that I wanted our future to have – fun, adventures, travel – and that I worried (because I didn’t know) that having a disabled kid would make impossible. I was, I am, determined to find people who are doing it and actually there’s a lot out there. That was really good for me in the absence of support groups for Lucy’s condition. 

Since having Lucy a lot of stuff makes me very emotional. I am very touched by people who really see her. People really warm to her because she’s a very joyful kid. And celebrating all her hard won achievements, every tiny milestone, cheesy as it sounds, really has helped me savour them and focus on what matters. 

Find Sabrina on Instagram @sabrinamrusso

The Complexity of Sharing

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. 

A Parent Perspective: Interview with Alex

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. 

Note: Some names have been changed.

7 Brilliant Books For Primary Age Children With Disabled Characters

This is the second post in a series. The first, 10 Brilliant Books for Young Children with Disabled Characters is here.

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

I’ve Written a Book!

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!

Bookshop.org

Amazon

Waterstones

WH Smith

Foyles

Blackwells

Getting Political About Education

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.