I sometimes think about support for disabled people and imagine what it would be like if we decided to start from the question: What does this person need to do the things they want to do? How much care would enable them to work, participate and be as independent as possible? What housing do they need to ensure their bodies work as well as they could? What kind of school would be best for this child? How could we help them work?
Because that is not how these systems work at the moment. Currently, every claim is an ordeal so as to not incentivise it too much. The argument goes that if you make it too easy to, for example, get a place at the most appropriate out-of-borough school, or be provided with an adapted bus to get there, or disability benefits to compensate for the proven higher day-to-day cost of being disabled, then local or national government will be over-run with people claiming they are eligible. The clamour to receive these perks will overwhelm the finances of the nation. So the difficulty in getting them isn’t just a byproduct of fewer staff or careful processes, it’s on purpose.
It is up to every person to PROVE they need support or a particular thing, and over time they will accept having to describe in great detail what they cannot do, to be grateful for everything they are offered, and to fear it being taken away. if they try to campaign for a different way of doing things, they will be told it’s necessary to avoid fraud.
Meanwhile the ordeals continue. We fill in a new 40 page form every few years for Disabled Living Allowance, as if we have never applied before despite Ben’s condition being lifelong and unchanged. We approach every Education, Health and Care Plan review mindful that we need to justify his school placement. When my Carers Allowance is stopped with no notice, I await the letter through the post that will explain how I justify that I still qualify. When we apply to replace a stolen Blue Badge we are unsurprised that it takes two months. When a social worker says we need more hours of support, we accept the allocation (by a nameless, faceless ‘panel’) of half as many hours as she suggested.
The people in government are so busy performing the roles of guardians of public finances they’ve forgotten all about actual people at the receiving end (or not), and they don’t have the empathy required to imagine what they don’t experience. So the ordeals continue, and the costs go up, and fraudulent claims for disability benefits are always lower than tax avoidance by rich people, and on we go. Meanwhile the state spend millions on defending tribunal claims and assessing benefit claimants, and disabled people accept less than they deserve (in empathy and money). The system ends up working well for few people, having subjected them to multiple ordeals, and is wrapped up in rhetoric that helps no one. If you claim disability benefits, or interact with social services, or have tried to get educational support for your kid with SEND, you know what ordeals feel like. And if you haven’t, let me tell you it feels quite shit.
This very good article is where I first heard about ‘ordeals’, as described by political scientists, and as Sam Freedman says ‘There is a constant need to tell the stories of those who need state support the most, to show what it’s like to experience scarcity, to show that creating more fear and anxiety makes it harder for people to help themselves, to keep battering away at the empathy gap.’
(Peak geriatric millennial selfie of us to help breach the empathy gap)
These books have all given me valuable insight into the experience of being disabled or caring for someone who is. Some are confronting (which is necessary), others are beautiful and insightful. All are worth your time and will widen your understanding of people and the world.
I have included my own memoir (in a reluctant flash of self-promotion) because I’m proud of it. Together they are a mixture of own voice accounts by disabled people, memoirs by parent carers, and well-researched non-fiction.
1 Sitting Pretty: The View From My Ordinary Resilient Body – Rebekah Taussig
This is one of my favourite books. It does exactly what I want a book to do – speak truthfully and lyrically about complex issues that are personal and also universal. 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, and how it feels to be a woman. It’s funny and powerful.
2. A Still Life – Josie George
George’s memoir is about her life being made physically still and small by her illness and pain, yet full and rich in her mind. She writes so evocatively about all the challenges and triumphs of her day-to-day experience, and helps us reimagine what is valuable.
3. The Cracks That Let the Light In: A mother’s story of raising her disabled son and the life-changing power of books – Jessica Moxham
My memoir about my son Ben and what he’s taught me. A lot about the challenges and triumphs of parenting, his love of books and my hatred of people pitying us.
4. Far From the Tree – Andrew Solomon
This is a huge book that covers the stories of hundreds of parents whose children with very different identities from their own – from autism, to deafness, to complex physical disability. It would be impossible to read in one go – I’ve read a chapter at a time – Solomon’s writing is accessible and represents diverse views while being true to lived experience.
5. Tender: The Imperfect Art of Caring – Penny Wincer
Part memoir, part interviews, part manifesto. Penny covers all of the realities and emotions of being an unpaid carer – the highs and lows, and how it can still be possible to live a good life.
6. Dear Parents – 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 is disabled and a parent of a disabled child and her insights can feel challenging, but are undoubtedly necessary.
7. The Skies I’m Under – Rachel Wright
Rachel writes movingly about how her life is turned upside down when she realises her son will be disabled. Despite her being a nurse and her husband being a doctor, this is a different way of engaging with health services and makes Rachel re-evaluate her life, her faith and her responsibilities.
8. Disability Visibility: First-Person Stories from the Twenty-First Century – edited by Alice Wong
This is a collection of writing by disabled people with diverse impairments and there is something for everyone. The range of topics and styles make it a powerful anthology, representing views and insights that I haven’t read elsewhere.
This is my latest interview in an occasional series – A Parent Perspective. I spoke to Lorenza about life with her daughter, Eliza, who has a rare genetic syndrome which affects many aspects of her life. Lorenza talked to me about how much she has learned from Eliza – from changing tracheostomies to British Sign Language – and her determination to help Eliza have as full and fun a life as possible, but also the challenges of having a medically complex child.
My son, Ben, is 12 and I knew very little about disabled people or parenting when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.
Could you describe your family?
Me and my husband, Tom, have two daughters – Mya has just turned 17 and Eliza is six. Eliza has complex medical needs. She’s a character – funny, really strong minded, won’t stand for any messing. She’s great company. She loves being outdoors – I like hiking so I take her, even if that means she goes in the pram or I carry her. Sometimes she will walk. She does horse riding and has just started martial arts, which she’s really enjoying.
What is her medical condition?
She has CHARGE Syndrome which is quite rare. CHARGE syndrome can affect anything and each child is different. Eliza had a tracheostomy from birth until recently, which was extremely challenging and took a few attempts to remove. She has a lot of breathing difficulties and has just had her tonsils removed. She is tube fed through a gastrostomy button. We are trying to make steps forward with oral feeding, but it’s not simple. Balance and mobility are also a problem for Eliza. I don’t compare her to any other children. As long as Eliza keeps hitting her milestones in her own time, I’m content with that.
When did you realise Eliza might have CHARGE syndrome?
It was a very quick delivery and it was apparent in labour that something wasn’t right. She wasn’t breathing when she was born and then things escalated. It was a while before I got to see her but I don’t remember that period very well. My husband and eldest daughter came the next morning to meet Eliza for the first time and were greeted by me and lots of doctors and nurses rushing Eliza up into intensive care. We weren’t sure what was going on.
We were at our local hospital for two weeks, and then transferred to a more specialist hospital and stayed there for 10 weeks. My husband and I practically moved in while my eldest daughter came back and forth. The doctors realised that whatever was going on with Eliza was not straightforward. We’d hear about one challenge, and then it would be the next one. She was having surgeries. Eliza started thriving as soon as she got a tracheostomy though. It was a busy time.
Did you have much support with the tracheostomy and feeding tube once you got home?
We did tracheostomy and naso-gastric (NG) tube feeding training in two weeks at the hospital and then we went home. I’d really looked forward to bringing Eliza home – I had hoped and prayed for it – but that day was probably the hardest day of my life. I wanted to take the whole hospital team with me. I cried all the way home and then family greeted us but I just wanted to go and hide away. You can’t prepare yourself for that strange feeling where you are happy to get home, but also you know it’s the beginning of coping with all these things on your own.
If I ever wanted the community nursing team to come and help with the tracheostomy change, they would but I didn’t really know what I should be worried about or what was normal. We never slept in those early days. I have people say to me all the time, ‘Oh, I don’t know how you do it. I couldn’t do what you do.’ And my response is you would, because you have to. There’s no other choice.
At first I was really against having any carers and I did everything. It felt like a defeat to admit I needed help, but I should have done it sooner. When Eliza was around eight months old I said I couldn’t cope any longer. We started having carers to help with the nighttime and it was the best thing ever did. The daytime feels so much easier when you’ve had a full night’s sleep.
I say to friends who feel the same way I did, we don’t have to do everything ourselves. It’s strange welcoming people into your home but they soon became part of the family. We had two carers and they still now come to visit Eliza. Within a week of her tracheostomy being removed, her care package was reviewed to reduce the budget and then carers stopped coming. It’s made life a lot harder. I’ve found it difficult to leave Eliza with family members because she has a lot of medical needs. I think it’s a big responsibility and it’s really hard to let go. I wasn’t prepared for the change of removing the tracheostomy – I am still learning that I can relax a little bit now her breathing is more stable. But it’s hard to switch off when you’ve been in that fight or flight mode for so long.
How do Eliza’s medical issues affect her day to day life now?
Tracheostomies are very time consuming and require 24 hours a day supervision, so once we removed the tracheostomy life got a lot easier. But life is challenging for Eliza as every aspect is affected – she is deaf so communication and listening are difficult. Socialising, school, and trying to make connections with her peers is hard for her. She has a lot of sensory processing difficulties and is working on her balance.
We have also recently started her on daily injections of growth hormones which is another thing for me to learn. I’ve learned to tube feed, change an NG tube, change a gastrostomy button, a tracheostomy, and now injections. I remember watching the first tracheostomy change and I was absolutely petrified, but now nothing fazes me. I think these injections will become normal for us.
How is Eliza finding school?
We shielded her for the first half of Covid so she missed a lot of reception, and she still misses quite a lot of school due to hospital stays and appointments. She’s in year one at a mainstream school and it has been difficult at times, but she’s made friends and enjoys school. Socialising isn’t easy for Eliza. She has quite a lot of autistic traits so it is difficult for her to fit in, but she loves being around people.
I know that you have learned sign language to communicate with Eliza. How does that work in your family and beyond?
Eliza was completely mute when she was born and we didn’t hear her cry, laugh or speak for a long time. She was about three before she was able to bypass the tracheostomy and make any noise. She is also deaf. We went on a basic course to learn sign language, brought it back to Eliza and she picked it up straight away. That motivated us to carry on learning and teaching her. Me, my husband, my eldest daughter and all the extended family have learned Level One British Sign Language. I didn’t know much about sign language, or the deaf community, and signing doesn’t come naturally to me as a hearing person, but I’ve now completed my Level Three. Eliza is now speaking but she uses a mixture of speech and sign at home and at school. When she’s tired or unwell, she’ll revert back to Sign because it’s her first language. I’ve gone on to set up my own business teaching sign language to children – I think it’s really important that we bridge the gap between the mainstream, the deaf community and complex needs children. I’m seeing so many children with different needs coming on to my classes, wanting to learn.
During Covid when we were shielding Eliza, not leaving the house, I was climbing the walls so I started making an app to learn Sign language. I think everybody should know the basics of sign language, so if they came across somebody using Sign they could ask them if they’re okay. Just be a friendly face or say hello. That is my aim, to bridge the gap. The app is free to download and is called Eliza Says.
Learning Sign Language is just one of the ways you and your family have changed since having Eliza. How else have you changed?
I’ve learned so much through Eliza and I have changed for the better. I am more understanding, I have more compassion.
I’m not strong all the time and I’m not always looking on the positive side. Eliza had a surprise hospital stay recently, the day before we were flying abroad, and I had some down days. It’s important to acknowledge that we’re not robots, we all have emotions. We’re not strong all the time. Quite often if I’ve had a rough hospital stay, you will find me at home for a week in my pyjamas, comfort eating a lot of junk, regaining my strength. Then I’m back in the world.
When we were pregnant, it never crossed my mind that there could be any medical needs or any challenges. Now I have a lot more knowledge and I appreciate the challenges other families are facing.
Are there things that frustrate you?
Eliza is hitting milestones that we never expected she would but people have a tendency to underestimate how hard she has to work. People forget that she’s got a lot of serious medical things going on.
Also, a lot of people still struggle with the concept of tube feeding. I explain that she is tube fed, she can only eat purees, but they still put a meal out for her to eat. Or at a party they’ll still offer her birthday cake. Food means nothing to Eliza because she’s never had that. I find it really frustrating to keep reminding people of that.
Where have you found support, people who understand?
I have a really good support network around me, from professionals, to family and friends. At first, I didn’t see how important it was to find people similar to us. I was just surviving each day. Then I was at a baby class, even though I hated it. I’d come in with medical equipment and sit there not joining in with any of the conversation the other parents were having. I felt really isolated but I did it for Eliza because I knew it was important for her to go to these things. Another mum walked in with a child with an NG tube and we made friends immediately.
I appreciate there will be many parents that will not take the plunge to do classes like that. They won’t go on family day trips or holidays, and I know why – it takes a lot of strength, courage, hard work and planning just to get out of the door. But I didn’t want to stay at home with Eliza. I wanted her to enjoy things like everybody else. We go on holidays even though it takes me months to plan and I hate it until I actually get there. She’s nearly six and it’s taken me this long to have the confidence to be able to do holidays. There are so many positives. I don’t believe Eliza would be the same person if she didn’t have all these challenges.
This is my latest interview in an occasional series – A Parent Perspective, I spoke to Amanda about life with her four children. Her son, Matthew, has a rare chromosomal disorder and Amanda has battled to get the support Matthew and her family need. Her tenacity is extraordinary but working against the systems that are meant to support has been difficult for all of them.
My son, Ben, is 12 and I knew very little about disabled people or parenting when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.
Could you describe your family?
My husband and I have four children who are all quite close together. They are 16,14, 12 and 10. Our 12 year old, Matthew, was born with a chromosomal disorder called 47,XYY which means he has an extra male chromosome. He is non-verbal with complex learning difficulties and autism. Matthew‘s siblings are great with him and I think it’s taught them so much. There’s so much to consider with Matthew just to keep him safe, and I constantly worry if I’m there enough for the others.
How would you describe Matthew, and what are his particular challenges?
Matthew loves music and being outdoors. He has a wide taste in music, everything from heavy rock to salsa to Gangnam Style. So there is always music playing when Matthew is around, although he likes nothing more than to press repeat over and over again on a particular track so we never get past the intro!
Matthew is cheeky and inquisitive and has a great sense of humour. What makes life hard for him is his sensory processing challenges and difficulty with communicating – he’s nonverbal but can be very noisy! We all do some signing and he has a talker on his iPad that he’s learning to communicate with. It’s difficult for him in the wider world because other people don’t know signing.
The lack of communication leads to a lot of frustration. Sometimes he’ll be doing a sign that I haven’t seen before and he’ll look me in the eyes, coming up really close, like he’s trying to say, ‘Why can’t you understand what I’m trying to tell you?’ He has no sense of danger. He’s always on the go, doesn’t sit still, and doesn’t have a sense of social norms or personal space.
How you get the diagnosis of Matthew’s genetic condition?
When he was born it was suggested that he might have Down syndrome because of some physical features. After a week of waiting and wondering, we were then told everything was normal. About a week later, the consultant phoned to say the blood tests had shown something in Matthew’s chromosomal pattern. At a hospital appointment we were given a Wikipedia print out to explain that Matthew had an extra male chromosome, but we were told it wasn’t much to worry about – he might need a bit of extra help at school.
Matthew was slow to roll over, then crawled when he was about a year old. He started to walk when he was about three but he wouldn’t tolerate wearing shoes – he would scream and kick. I was thinking about autism because he would look up into the distance, and liked to be on his hands and knees and spin a lot. A paediatric nurse agreed there were enough traits to say it looked like a ASD diagnosis. I thought we might get some help as a result but didn’t.
What has Matthew’s school experience been like?
I had come across ABA (Applied Behavioural Analysis – a particular way of teaching children with autism) when Matthew was in preschool and I was very sceptical, but we did an hour a week and saw a change in him. It was all about play at that age, but we started to introduce some learning goals and it went really well. I found out you can run an ABA programme in a mainstream school, where trained tutors support the pupil alongside the class teacher, but once we said we’d like to do so the local authority said Matthew should go to a special needs school. We had to fight and went to tribunal with an advocate and reports to show why he needed it. It was an awful experience to go through, having to argue our case and be cross examined by an aggressive barrister who referred to our son as a ‘drain on the state’. After that stressful experience we won and Matthew started in reception.
Running an ABA programme in a mainstream school brought its challenges. We were responsible for employing the tutors and I felt like an HR and payroll service. If a tutor was sick, Matthew couldn’t go into school. There were lots of challenges trying to get speech and language therapy from the local authority – nobody saw him for two years. When it came to his secondary transfer, the local authority were suddenly interested and wanted to assess the effectiveness of the programme, despite having shown little to no interest over the years. We said he needed to go to an ABA secondary school because that was the only style of learning he was used to and had made excellent progress. The local authority refused, insisting it go to tribunal, although they didn’t have a leg to stand on. Again we went through the expensive process of employing an advocate and getting our own reports from independent professionals. At this hearing the local authority brought witnesses that had never met Matthew and the judge dismissed them in the first 10 minutes and agreed to everything we were asking for. The whole process was unnecessary and made me wonder what happens to the children of parents who don’t have the knowledge of the system or the financial means to fight it.
Matthew started at an ABA special needs secondary school last November and it’s going really well. He spends a lot of time exploring the school and they’re gradually easing him into more academic tasks. I feel like finally we’ve got him what he should have always had – regular speech and language, OT and physio input. He’s learning how to interact with others and life skills, which is really what I want for him. I’ve found him being at a special school quite hard to deal with as a parent – not that I was in denial about his needs, but coming to terms with the realisation that he’s always going to need someone to keep him safe.
How much support are you getting out of school?
It’s been an ongoing struggle over the years to get any help. A few years before lockdown, after many years of refusing, the local authority agreed for Matthew to go to a respite home locally. We built up to three weekends a month and some nights during the school holidays. It was incredibly hard because we missed him so much but it allowed us some breathing space. When Covid happened, the home shut immediately which was tough but we just got on with it because everyone was in the same boat. Sadly it then closed permanently.
Since then I’ve lost count of the number of emails I’ve written (often ignored) and phone calls made (and not returned) pleading for support. We have jumped through so many hoops and a huge amount of intrusion and judgement to then be met with responses such as “Senior management have not agreed to your request” or “Matthew is not at risk of harm so the best place for him is the family home”. It felt like we were stuck in this Catch 22 situation where you only get help if you fall apart.
The irony of all this is that whether it’s social care or education, when you have a child with special needs so much time and energy is spent fighting the system when you are already exhausted.
Recently we have managed to secure a new respite placement for our son which was not easy. The system of processes and procedures is not set up to help parents of disabled children. I have so many feelings of grief and guilt, of not being a good enough parent, of not being able to cope. Deciding to place our child in regular overnight respite has been one of the hardest things I’ve ever done. Each time he goes I feel my heart breaking a little more.
Having a disabled child has opened my eyes to how parents are left to get on with it on their own. I would have assumed that if you need help – such as speech and language therapy for a child who doesn’t speak, or respite so you can recharge your batteries to look after your child – you’d be given that help, but that’s not the case. I’m angry about this and wonder if I’ll ever get to the day where I’m not battling? I have a dream of building a respite home for disabled children because I don’t want anyone else to go through these struggles.
You are a Pilates teacher. Is there a link between being a carer and doing Pilates?
Pilates has been my saviour, in giving me an identity other than mum or carer but also in keeping me strong physically and mentally. Sometimes it’s difficult to fit in my own practice, but without it I would have gone mad by now. It’s a chance to forget everything else and just move. Movement is a kind of meditation. When I’m teaching, I’m totally in the zone, and I have great clients. You build up a relationship and help people make positive changes which is very satisfying. I also teach in a forest so being outside in the fresh air is another bonus.
On my quest to find books with disabled characters to read with my kids (or for them to read on their own), these are six excellent ones. These are all books Ben and Max have enjoyed (who are 12 and 10 years old). Some are written by disabled people. All have engaging storylines and vivid characters for kids (and adults, to be honest) who are ready for longer books.
There is a video with me talking about each book here
They are all available to buy on my bookshop.org page here
El Deafo by Cece Bell (Own Voice)
A graphic novel telling Cece’s own story of starting school with a hearing aid.
2. The Secret of Haven Point by Lisette Auton (Own Voice)
A debut novel about a home for disabled people who don’t feel they belong, with a sprinkling of magic and a lot of adventure.
3. The Right Way to Rock by Nat Amoore
An engaging story about families, musicals and the friendship between Mac and his friend Flynn, who has Tourette’s syndrome.
4. Cyborg Cat series by Ade Adepitan (Own Voice)
Based on Ade’s life, short novels about Ade making friends as a disabled child who has just moved to the UK. Funny and football heavy.
5. Wonder by RJ Palacio
Best-selling novel about a boy with facial differences navigating challenges at home and school. Bit schmaltzy in parts, and pulls at your heartstrings.
6. The Ghost of Grania O’Malley by Michael Morpurgo
Jessie (who has cerebral palsy) is trying to help save the landscape around her home, with the help of a ghostly pirate queen.
This is my latest interview in an occasional series – A Parent Perspective. I spoke to Serena about her experience raising her son JamJam, who has a rare genetic condition. JamJam has defied the odds but keeping him healthy is complex and Serena is often fighting for him. I hugely admire Serena and I loved hearing how she approaches life with JamJam within her big family.
My son, Ben, is 12 and I knew very little about disability when he was born. My experience of being his mother has been a rapid education in the issues surrounding raising a disabled child. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.
How would you describe your family?
We have a big family. Between my husband and I we have eight children – four older girls in their 20s, a son who’s 16, a daughter who’s 13, a five year old son, and JamJam who is four.
I love having a big family. I love for us to be around the table together, hearing about their days. Sometimes I take a step back and listen to the laughter and think, that’s me. I’m the mum to you guys!
Tell us about JamJam.
He is the most chilled of all my children. He lights up the room, laughs and smiles a lot. The minute he hears the beat to some music, he’s dancing. As soon as he hears your voice he’s moving his head. He does trampolining at school and he really enjoys that. He’s happy outside with fresh air on his face. He’s an amazing boy and we love him.
He goes to a fantastic school. It was a battle to get him there because it is out of borough, but we are so happy with everything that they do for him. Because JamJam is blind, he doesn’t have the cues from light and dark perception and his sleeping habits are really erratic. Since being at school his sleep is much improved. He’ll sleep for five hours in a stretch now which is a big difference for us.
Patau syndrome is the official name of his condition, but it’s commonly known as Trisomy 13 – he has three copies of chromosome 13. The prognosis is typically quite bleak – if children survive the pregnancy, they tend to live seven to 10 days. 90% of children die before their first birthday. It was a complete shock when we found out. We had seven healthy children and I come from a really big family where there are no disabilities. I wasn’t worried when I did the amniocentesis. We got the results on 16 August 2017 at 9:35am. It was my son’s 12th birthday so there were lots of his friends in the house up bright and early, wanting breakfast. We were expecting the call and my husband and I went into the kitchen when the phone rang. The geneticist said, ‘I’m really sorry, he’s positive for trisomy 13’. We were stunned. Neither of us said anything for what seemed like ages. We hugged then I went into the toilet and I cried and cried. Then I had to wipe my tears and get on with the party. Our lives changed in that moment.
And then how as the rest of your pregnancy?
We had options. Because this condition is seen as incompatible with life, you have the option to terminate at any point in the pregnancy. They explained that after 22 weeks, they would inject through my abdomen into the baby’s heart to stop it, then contractions would start and I’d give birth. The thought of it was horrendous, like I’d be murdering my child. We were in turmoil and only had weeks to decide what to do because we knew 22 weeks was going to be the cutoff point for us. Also we found out I was pregnant nine months after having a baby, and during the previous delivery I was really unwell and was in theatre for over nine hours as they tried to control a bleed.
What made the difference for me was our faith, because we’re Christians, and then also reaching out to the Trisomy 13 community. Our geneticist and consultant told us things based on the knowledge they had, but we entered a whole new world when we joined the trisomy 13 community and saw that children do live. There are children who are 4, 6, 30 years old with the same condition, and that gave us some hope that our child could be in the 10% that survive beyond their first birthday. We decided to let him write his own story – to give him the chance and deal with whatever life throws at us.
How were you both when he was born?
I was absolutely fine. JamJam had been put under palliative care during my pregnancy and offered comfort care only. We had to battle to have that decision overturned and for him to receive medical intervention. Fortunately we were successful because he wasn’t breathing when he was born and he was resuscitated. He had lots of issues maintaining his blood sugars and needing platelet transfusions. When he was three days old, an ophthalmologist examined him and said he had been born without eyes. Shortly after that we were told he was deaf. He was only in hospital for two weeks and when we got home we did more hearing tests. On the third test, they said that he did have muffled hearing. We prayed about everything. I know his hearing isn’t muffled – the minute you walk into a room, he hears it.
When he was eight months old, I was praying for another miracle for his eyes and 15 minutes after he opened one eye for the first time in his life and there was an eye there. Very small, but it was there. Later that day, he opened the second one – another eye there. No one’s been able to give us an explanation, but he has them. He is our miracle boy, he continues to defy the odds. Of course, it’s tough – he has epilepsy and apnoeas which are fairly frequent. He could be playing and then you notice that he’s quiet, and he’s completely blue and stiff. Then we need to grab the oxygen, try and stimulate him.
He’s completely nil by mouth and PEG-fed. We’ve been meticulous about what we feed him – he has a vegan ketogenic blended diet with lots of fresh, organic vegetables, fruits, seeds and nuts. We were told he would fail to thrive but he’s putting on weight, although making his food is very time consuming. We weigh everything and cook lots of batches of food, cool it down, label it, freeze it, and then it goes so quickly and you’re back to doing it again. I’ll never pretend that I enjoy doing a lot of the things that we have to do, but we do it because we want the best for him.
Do you have any help?
We are very fortunate to have a very good care package with seven nights and four days of support, which is needed. Also he has all his brothers and sisters – even my five year old can recognize what’s happening. He’ll say, ‘Mum, Jam Jam’s having a seizure,’ which is great in one sense, but it’s also quite deflating in another.In emergencies everybody knows what to do. One grabs the oxygen, one’s calling the paramedics, another one’s taking the younger children out the way.
I’m really proud of our children – they’re very compassionate, loving, and tolerant. They’re also very vocal – they’re advocates for JamJam and they speak about issues in society. My children love to debate, expressing their opinions, and it’s amazing. Having JamJam as a brother means they’ve got a level of maturity that otherwise they probably wouldn’t have had.
I guess you’ve unfortunately become really familiar with hospitals.
We’re even familiar with paramedics. Some of them arrive, turn to their colleagues and say, ‘I know JamJam. His mum doesn’t like any shoes on the mat!’ We know the protocols – if JamJam is really unwell he’s going straight to Resus 8 and we’re going to be there for a while, and then we’ll go to intensive care or HDU. Everybody knows him.
The doctors will say, ‘What do you think Serena? You know him best. Has anyone in your group experienced this before? Obviously they are trained, they are the professionals. JamJam is all we have experienced, but it’s good to have a relationship and exchange experiences.
Are there ways that you have changed since having JamJam that you are grateful for, even though it’s been very difficult?
Time is so precious and things that may have seemed really important before have less value now. I’ve learned to really value being around the children. I also try and have one to one time with each of the children. Before, the children would be talking to me and I’d be getting on with something. But now, I’ll pause and actually look and listen, giving them all of me, even if it’s just five minutes. I want all of my children to feel that they are important, to know that their needs, desires, the things they want to do are being supported. I often hear myself saying, ‘One minute, please, I’m just doing this for JamJam.’
My children are all so different. I’ve got one who is incredibly studious with so much drive and ambition. My 13 year old is an actress and I want to ensure she’s able to do the things she wants to. She had an audition when she was eight and we were running late. I had to take JamJam out the car, get him in his chair, he had his NG tube and I was syringe feeding him, rushing with my other son. Her agent called me and screamed down the phone at me and I burst into tears. When I got to the audition they said they were running behind anyway, but all I could do was cry. I felt like I’d let my daughter down. Thankfully she got the job but it was so stressful. You just want to be the best mum you can to every single one of them and meet all of their needs, but it’s really tough.
I think particularly coming from a Caribbean background, a lot of Caribbean women have got to be seen as strong, holding it together and able to cope. But if I’m not managing, I’m going to say. If I feel like crying, I’m going to cry. If I want to take a holiday and leave my children for a while so I can recuperate, that’s what I’m going to do, and I do it all unapologetically.
What are the things which frustrate you, that you feel need to change?
The disparity that I see between families. We go to hospital, and see families who have their nurses or carers there with them, supporting their child. We can’t have that and I find it so frustrating. We see families who have so little. I saw a lady recently who I’ve met in hospital and she’s carrying a 16 year old up and down the stairs in temporary accommodation. It grieves me, it’s so unfair. Not everybody has the support we have. There are parents that need so much more and they’re not getting it. It also makes me very grateful.
I think it makes a huge difference to know that you’re not alone. There are many people in different situations, but there’s so much that we have in common. When I realised there was a whole Facebook group of people with me, I realized we were not alone. We’ve met so many wonderful people and people we’d never have had the opportunity to speak to.
These are 10 of the best books featuring disabled characters that I’ve read to my kids. They cover a range of characters and impairments. Molly (age 6) loves or has loved all of these and my older sons did too when they were younger. Some are written or illustrated by disabled people, but not all.
Most are available to buy on my bookshop.org page here
And there is a video with me talking about the books here.
1. What Happened to You? by James Catchpole & Karen George (buy here) This is about a boy who has one leg and people, particularly other kids, keep asking him about what happened to his leg. It’s written by James Catchpole who is a disabled author.
2. Mama Zooms by Jane Cowen-Fletcher (buy here) Molly, my daughter absolutely loves this. The mother in the book goes on lots of imaginary adventures in her wheelchair. Really fun.
3. Can Bears Ski? by Raymond Antrobus & Polly Dunbar (buy here) This is about a bear who realises he is deaf, written by Raymond Antrobus who is a poet, writer and is deaf himself. Has brilliant illustrations by Polly Dunbar.
4. When Charley Met Emma by Amy Webb & Merrilee Liddiard (buy here) When Charley met Emma is about a girl who uses a wheelchair and has limb differences. The author has a daughter similar to the character in the book. A lot about kids how talk to Emma about her differences.
5. The Girl Who Thought In Pictures by Julia Finley Mosca & Daniel Rieley (buy here) This has more words than some of the others and is a bit longer. It’s about Temple Grandin who is autistic and is an incredible inventor. It’s about how autism makes her who she is and successful at what she does.
6. Hiya Moriah by Victoria Nelson & Boddz (buy here) Molly also loves this one. It has a fun rhyming text, but also quite a bit of detail about the equipment that Moriah uses. My kids have really liked being able to see equipment like feeding tubes in a book.
7. I Am Not A Label by Cerrie Burnell & Lauren Baldo (buy here) This has profiles of lots of different activists and successful people throughout history. It has more text that some of the others in this list – I’ve read it more to the boys than I have to Molly.
8. The Abilities In Me – Tube Feeding by Gemma Keir & Adam Walker-Parker (buy here) There are lots of different books in this series. This one has rhyming text about about feeding tubes.
9. We Move Together by Kelly Fritsch, Anne McGuire, Eduardo Trejos (buy here) This is written by disabled writers and has themes of disability justice with beautiful illustrations – lots of people, different kinds of mobility aids, different kinds of impairments.
10. Susan Laughs by Jeanne Willis, Tony Ross (buy here) This one is a bit simpler and Molly’s probably a bit old for it now, but she really liked it when she was younger. It’s not specified whether Susan has a diagnosis, but implies she finds some things difficult and others joyful.
Today I took Molly to the GP to talk about something completely unrelated to her lungs, but while we were there I asked about the hacking cough that Molly has now had for over 3 weeks, which is extremely slowly improving. He said he had noticed it already and that it sounded viral. ‘I’m like a mechanic who can tell from the sound of the engine what’s going on with the car.’ He listened to Molly’s chest and confirmed there were no crackles, no need for antibiotics. As the doctor then did something on his computer, I told Molly that this was the room where I brought her as a baby. I’d put her in a special baby bowl on top of scales (though not that often because she was my third baby, who breastfed extraordinarily efficiently).
I knew he’d say her cough was okay. I would have taken her to the doctor sooner if I’d been worried, but I hadn’t been. She wasn’t otherwise unwell, and nothing about the cough had pricked my antennae. It reminded me of seven years ago when I took Ben to sit in the same doctors surgery to wait an undetermined length of time to see a doctor, because I didn’t like the sound of his cough. There weren’t any appointments, and when I arrived the receptionists were saying there were too many people waiting to see doctors. Ben wasn’t that ill, but wasn’t well, and I knew the sound of that cough was wrong.
The GP listened to Ben’s chest and diagnosed a chest infection, and once Ben had antibiotics he rallied. It was a relief, because I was in the early stages of pregnancy with Molly, we had just moved house, and I was being pulled in a million directions – trying to unpack boxes before passing out with the exhaustion of growing a small foetus. One of my many worries had been Ben’s cough and I felt so vindicated that I had been right.
I’m six more years into parenting now. Still making most of it up as I go along, but feeling like maybe I at least have coughs down?
This is my latest interview in an occasional series – A Parent Perspective – with Emma. I first met Emma when her son, Ted, was very small and we lived near each other. Baby Ted reminded me so much of baby Ben. Since then she has moved out of London, had another child, Ted has blossomed and our families have become friends.
My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.
Could you describe your family?
There are four of us: my husband, Rik, and me. Ted is my oldest child who is nine now, and my daughter Dilly is six. We often have a carer with us too. We live on the Wiltshire-Somerset border but we’ll be moving to Somerset once we adapt a house there.
How would you describe Ted and what does Ted love doing?
Ted is a very happy, smiley boy. He loves being around people and in the thick of it. His favourite place to go is a supermarket – he literally whoops with joy when he realises that we’re going there. He also loves slapstick comedy, silly games, fart noises, all of that kind of thing.
He has cerebral palsy from a catastrophic brain injury at birth, which affects his whole body. He requires a lot of support with everything in his life so we have a lot of help from carers.
Ted goes to a brilliant school in Bath. He used to really hate goodbyes and would wail as we waved him off on the school bus in the morning. They’d always text 10 minutes later to say he was fine, but it was awful. Then we had this gruff, Scottish driver who’d joke with Ted and now he gets really excited when the bus comes.
Did you know from the moment Ted was born that his brain injury was going to going to have affected him?
He was in a very poor state when he was born and he was whisked off into NICU. That night the consultant mentioned the words cerebral palsy. We were taking each day, each hour, each minute at a time. Once he moved from NICU into Special Care, I think the naive part of me was hoping for a miracle – one of these people whose life support was almost turned off but now they’re six foot and play rugby. There were lots of signs that wasn’t going to happen – feeding difficulties, physios saying he was very stiff, nurses giving us a knowing look with a slight tilted head. We had a diagnosis of cerebral palsy at about three months. Ted cried all the time in those early days.
There were some forums that I joined that I quickly stepped back from because it was just terrifying to me at that point – people’s children were passing away or having terrible seizure disorders. Life seemed very medical and very difficult. At that point, Ted needing a wheelchair was the worst thing I could think of. Now I know that Ted not walking is the least of our worries. I was asking myself if Ted was going to be constantly unwell? Was I going to be in and out of hospital wondering if he was going to make it through the night? At the beginning you don’t know what is going on, you feel like you’re upside down half the time. It’s a lot to deal with.
What was helpful in that early period?
Realising I could say no. There was a physio playgroup at 9am on a Tuesday and I found it stressful getting out of the house that early to get the bus. When I got there, I don’t know what I was supposed to be doing. Everyone else seemed to have a programme to follow or children that could play. The day that I said, ‘I don’t want to go to that, I’m not finding it useful,’ felt really big because I felt like my baby belonged to a system. He wasn’t really mine. He belonged to the hospital, social care, and health care systems, so it was good to take back some control.
I felt very different to other mums and like Ted was very different to other babies when he was tiny. But actually I realised that he didn’t really look any different to anyone else. One of the people I’d met in antenatal classes was persistent in inviting me out for a coffee and we went to baby massage, and that was really helpful. A little normality was what I needed. I learned to accept help from friends. I tried not to hide away and to do some fun things. They were all quite tinged with sadness though, because it was a traumatic time and the antithesis of what I expected having a newborn to be like.
How did you make decisions about having another child?
We always wanted more than one child but there was fear and anxiety. I knew it was very unlikely for the same brain injury to happen again but once you spend some time within those Facebook forums you hear awful stories. I didn’t know if I could do that again, but I knew that we did desperately want another child. I wanted to experience what it might be like to have a neurotypical child and have a non-traumatic birth. Ted was three when Dilly was born and was having a bit of time at nursery. He still had his moments, but he was generally happier about things, a bit more comfortable in his body. We’d resolved some of the feeding issues (he still wasn’t tube fed at that point). It felt like a good time, and it was brilliant.
Dilly’s birth was super easy in a birthing pool but feeding was not smooth. I decided I was going to make breastfeeding work, but it was four months of absolute agony before we found our groove. It was difficult deciding whether to keep going or move to formula because I’d had to do that with Ted. I’m glad I persevered – I fed her for four and a half years in the end and it gave us an incredible bond. Having Dilly made me really appreciate what it’s like to raise a neurotypical child, but also understand everything that Ted had struggled with.
They are completely different children, and you have to accept them for the child they are rather than the child you want them to be, or that you think they are. Regardless of disability. I realised that I had to fully accept Ted as he is. I had to embrace every aspect of him – feeding difficulties, missed milestones, a body that didn’t work as it should – as much as I accepted that he had brown hair and brown eyes.
How have you approached therapies with Ted?
I definitely went through a stage of thinking if I just found the right combination of therapies, I could make Ted do these things that he was clearly never going to do. We settled on ABR therapy which we’ve done since he was six months old. When we first went he was very tight and angry, and I don’t think it’s necessarily given him much more functionality but it’s brought him a lot of comfort within his own body. I focus on the physical therapy, and could probably do more in terms of communication. Ted’s very bright, sociable and clearly understands a lot, but we don’t know where his cognition level is and we haven’t found a good system of communication beyond eye pointing and smiling.
How do you think having Ted changed the kind of parent you are?
I think I appreciate every little milestone of Dilly’s in a way I probably wouldn’t have done if I’d had a typical first child. I think it’s been a real blessing having Ted because he suits who I am as a parent – low key! I don’t feel pressure to make sure that Dilly is attending Mandarin classes or whatever. We prioritise experiences and family time over formal learning.
Before you have children all you know about is sleepless nights and ‘terrible twos’. You don’t feel the love, or see how angelic your children look when they sleep, or know what it’s like when they write you cards saying, ‘I love you’. From the outside you just see the difficulties, but you can’t know the amazing feeling when I make Ted laugh.
How have you found having carers to help Ted, and how have you made it work for your whole family?
I’m extremely grateful for the help that we have. It ebbs and flows but I have a good life and if we had to do all of the 24/7 care, would I be as resilient and upbeat about it? We’ve had carers since about 2016, including some nightcare, and it’s strange sharing your house with other people. For the first time recently, Rik and I were bickering in front of the carers because our house is not particularly big. I think it was making them feel quite uncomfortable, but I can’t wait until 8pm on Friday to schedule an argument with my husband. Having carers in the house is really helpful but there’s not a lot of privacy. It does mean that I can do the fun things with Ted and pass off the boring tasks. I can focus more on Dilly and I’m able to work and do some things for myself, which is incredibly important. It comes with a fair amount of guilt for people that don’t have what we have.
What helped change your thoughts about Ted’s disability, since the period after his birth?
Having talking therapy and processing the emotions was helpful to a degree. Meeting you was really helpful – someone who was a little bit further down the road than you are, modelling that it’s okay. Reading Andrew Solomon’s book, Far From The Tree. Listening to podcasts. Listening to disabled people, partly on social media, and unpicking internalised ableism.
Realising that we’re all different, and different doesn’t have to mean bad. Our life is never going to be how it is in our head. We’re never the mothers that we think we’re going to be because our children come along and are their own people. That’s irrespective of challenges. I looked at what I want from life and how I could go about getting that, and none of that involved taking away Ted’s disability. Before I had Ted, I definitely had times where I felt like there had to be a bit more to life. I wanted a life with more meaning, and that’s exactly what I’ve got. Going through difficult times makes you appreciate the better times.
When Ted was born someone from work sent me a card which said (I think it’s a John Lennon quote) that everything will be okay in the end, and if it’s not okay it’s not the end. It’s really hard to see that in the beginning, when I thought ‘okay’ was a miracle recovery. That’s not what happened and it’s more than okay. You can come out the other side of the difficult times and it can be brilliant.
You can find Emma on Instagram here, and on Twitter here
This is my latest interview in an occasional series – A Parent Perspective – with Amy. Amy lives with her family in Cornwall, working as an artist and making beautiful pots. Her daughter, Rosa, has a rare genetic disorder and I really enjoyed talking to Amy about how she has trusted her instincts as they have navigated their lives with Rosa’s life-limiting condition.
My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.
Could you describe your family?
There’s four of us – me and my husband, Gareth (we’ve been together for our entire lives), our daughter Rosa who is 13, and our son Ithan who is 11. Rosa has Canavan disease which is a rare genetic brain disorder and means she needs a lot of help. We live in a lovely, tiny cottage on a river in south Cornwall.
What are Rosa’s favourite things to do?
She likes anything that is a bit shocking, that makes you jump, and things that you build up to. We play lots of games, Kerplunk and board games. She enjoys body noise humour. She likes interaction, being in a group of people and being with other kids, which is important and has been lacking so much over the last couple of years. It’s been really difficult to facilitate because she is very vulnerable and we have had to be horribly cautious for ages.
What impact does her disability have on her day-to-day life?
It affects every aspect of her life. She’s nonverbal, in a wheelchair and doesn’t have very much movement. Rosa’s communication is largely through facial expression. She does things brilliantly at school, but at home she just expects us to know, which is cheeky but fair enough. She’s got a computer at school that she operates with a switch but at home she’d rather we just entertain her, not have to press a button to make it happen. She looks up and smiles for yes, and looks down and doesn’t smile for no. Her condition is progressive and we feel things are getting harder for her and she’s in a fog more often. She’s had more seizures over the last few years which means constant managing, trying to make her as comfortable, involved and happy as possible without overwhelming her.
When did you find out Rosa had this condition?
We had a completely blissful first couple of months of just being in love with our new baby and I felt really good. I started to wonder when she was about three months, but we didn’t talk to anybody until she was seven months old, when it was probably quite obvious to everybody else. I don’t think I wanted to know, and as soon as we talked to professionals it was like the floodgates opened. Everybody wanted to do tests and Rosa was in and out of hospital. You’re in such unfamiliar territory, it’s like being in the midst of a hurricane, just trying to make sense of it. We got her diagnosis very quickly – it was only three months after we’d first talked to our health visitor, and we were lucky because it’s a really rare condition.
We’d always wanted more than one child – we were initially quite frightened to go ahead with another pregnancy but were able to have a CVS test at 11 weeks of pregnancy to rule out Canavans. Ithan is the polar opposite of Rosa. He was feisty from the moment he was conceived, and then he arrived and held his head up, like, ‘Here I am.’ He did everything really early so there was no chance to worry. With Rosa our whole life landscape changed, so to then have this little miracle of normality come along was (both) wonderful and sad.
How has your approach to appointments and professionals changed over the years?
We’ve been quite good at that from the start. We sacked our first paediatrician because we didn’t like his attitude. We felt like he didn’t like children and he never addressed Rosa. His initial examination of her destroyed me. I felt he was so cold and moved her around like she was a thing.
Initially we did all the appointments that came and we were more compliant, but we’ve always resisted medicalising Rosa’s life as much as possible. Some people look the condition up in the book and say we’re going to do this and this without assessing if that’s necessary and weighing up the pros and cons for Rosa. Gareth comes from quite a scientific family and I come from a hippy, intuitive family which makes a good combination. When we first got the diagnosis I was really frightened to know the facts whereas Gareth was doing massive amounts of research. He could then drip feed me the information when I wanted it which worked really well.
It sounds like you had such strong instincts about the kind of parent you were going to be and that advocacy bit of it came naturally.
Yes, I think so. There are experimental treatments going on in the States and we looked into all of that but we felt that if Rosa’s life is going to be short then we want it to be as fun as possible. We don’t want her to spend it in hospital, recovering from surgery which probably won’t make that much difference. We decided at the beginning it was about her quality of life and we’ve got more strict about that. Unless we can see how an appointment is going to benefit Rosa, we try not to do them.
Do you think there’s things about the uniqueness of Rosa that has then affected the way that you’ve been a parent to Ithan?
I know that having Rosa as a sister has hugely affected the way Ithan is compared to his peers. There are so many times when we’re going to do something and then we can’t because of Rosa. He’s so good about it and adaptable. He’s very tolerant of Rosa needing a lot of care and attention. Gareth and I work in our business together, at home, so one or both of us is always around and I hope Ithan feels there’s enough attention for him. We try to make the most of good days and seeing the relationship between Rosa and Ithan is precious.
The last few years we’ve started intentionally doing more things separately with the kids. We take turns taking Ithan camping, because Rosa loves camping but our camper van has got too small for us all. It’s important that Ithan can have some undivided attention. For years we took Rosa’s chair across the moor but now she’s big and it’s bumpy. Sometimes you have to recognise there are limits to what you can do, and Rosa would enjoy juggling at home more than dancing across the moor in the weather.
Does Rosa enjoy school?
It’s been really patchy how much Rosa’s been at school because of Covid, and we’re also in the middle of a massive hellish battle with the council about transport. It’s so frustrating and emotionally exhausting because it should be simple. Rosa’s had a taxi to school for years. It’s a brilliant school which she’s been going to since she was three, and she loves it. She had a scary medical event in July when she stopped breathing and had a cardiac arrest out of the blue. She is now fine but transport stopped because they said the driver and assistant weren’t qualified to do it. I’m arranging the training for them but the council keep moving the goalposts.
A school day is very short anyway, in terms of getting work done. We’re both self employed and driving Rosa to school, or her not going to school, has an impact on the wellbeing of our family. Ithan’s school is in the opposite direction and we’ve only got one vehicle, so it’s all juggling while trying to run a business.
Do you have help from carers?
Not enough. We have one carer who brings toys and plays with Rosa for a few hours after school. It’s okay if one of us is here with her, and it’s better than having nobody, but it’s not a great help.
We had more help when Rosa was little. My brother used to work with Rosa and that was great. We had Homecare for some years which was mostly helpful although it was awkward to make changes, and you didn’t always know who was coming. Then there were cuts, and they decided that Rosa wasn’t disabled enough and we lost 30 hours a month of help, which made a big difference. Now Rosa is so big, it feels difficult to get anybody in who can be properly helpful because we don’t have any hoisting or any way of getting her upstairs apart from carrying her.
How has Rosa’s feeding has changed over time?
For the first few days she had trouble feeding, and then she was brilliant at breastfeeding and didn’t want to stop. She was feeding constantly until she was nearly two, and she used to love eating. They were telling us she needed to have a gastrostomy* and we were saying she doesn’t. She was gorgeous and chubby. It started to get more difficult when she was about six. She was aspirating more and it got harder to keep her hydrated when she was poorly. Gradually she was enjoying eating less, finding it more difficult and taking longer. She had a nasogastric tube for a bit, after she’d been ill, and that’s when we started supplementing with formula. We decided it was time to get a gastrostomy, which was a surprisingly hard decision but it felt like Rosa had said, ‘I don’t want to do this anymore, it’s too hard.’ She was eight when she had a gastrostomy and afterwards she didn’t want to eat anymore. Even birthday cake and ice cream.
We started doing blended food* almost as soon as she had her gastrostomy. Our previous paediatrician had told us about it. Rosa’s got a really tiny tummy capacity so we have continued to use formula as well. I blend a lot of her food with formula and when she’s at school they feed her formula, because it’s straightforward. Now she also has a pump feed at night. It was another thing that I was resistant to, because I feel like your tummy should be able to rest when you’re sleeping, but there’s always a bit of give and take – a tug of what your instincts say and what your child needs. Sometimes she just has water in the pump because milk is just too much, and sometimes anything is too much. She has gained weight, which is brilliant for her, but a nightmare for us because we’re still carrying her around the cottage. She’s still really slight and nowhere near the size of a typical 13 year old girl, but at least she now has some reserve.
Terms: *Gastrostomy – feeding tube through abdomen into the stomach
*Blended food/diet – liquidised food put through a feeding tube
Son Stories by Jessica Moxham 