Author: jess

A Parent Perspective: Interview with Janette

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I spoke to Janette about being a mother to her son Gregory, who is 35 and supremely sociable. I really appreciated speaking to Janette who is a parent to an adult child, and navigating being a carer for much longer than most would expect to be.

My son, Ben, is 13 and I knew very little about disabled people or being a parent when he was born. Being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about people with similar lives and I hope you might too!

Jess: Can you tell us a bit about you and your family?

Janette: My son Gregory is 35, and I have a younger son Edmund who is now 31. Gregory’s a very sociable person. He loves being with people, going to people’s houses. We’re active members of a lively church and we’ve got lots of good friends there. He loves live music and musicians. He’s very affectionate. He can read more than most people think. He can walk with walking sticks around our bungalow and with a walking frame for short distances. He likes things in a very particular order. He’ll notice when tiny things in our house aren’t in the place that they’re supposed to be. He loves picture books and coloring books.

He goes shopping once a week and loves using the hand scanner at Tesco. He’s very motivated by anything that’s got a button or a switch. We’ve gone through a lot of televisions and DVD players because he breaks the buttons by pressing them so hard. He likes going swimming, when we can find a support worker who is able to go with him. He loves being out and about and going on walks. He goes to a day center once a week. He loves doing cooking. He’s got a great sense of humor. He loves going to see his dad. We split up when Gregory was about nine. My ex-husband is a lot more patient than I am.

Gregory can speak well sometimes. He’ll tend to use the main words in a sentence. He’s very good at remembering people’s names and what socks they wear! He’s surprising to me and I know him really well.

Jess: At what point did you receive Gregory’s diagnosis?

Janette: He was my first child so to me it was a normal birth, but he had a small head and a low Apgar score. He was with me for an hour, then he was taken up to special care. They kept him in for a week while they monitored everything. I had to keep taking him for head measurements after he was born. Feeding was difficult. His legs were stiff and rigid. I was part of the National Childbirth Trust and one of my friends there was a GP. She said to me, ‘I think you need to go and get him checked out a bit more’. Leading up to being one year old, they did start doing a few more investigations. He wasn’t crawling, he wasn’t sitting very well. He had a big day’s assessment and at the end the paediatrician told me that he had special needs. She wasn’t very specific but just said he would be disabled all his life. I don’t remember her saying cerebral palsy. He then started having lots of physiotherapy and eventually they used the word cerebral palsy. He was such a smiley baby. He always wanted to engage with other people. I’m so thankful for the speech therapists in his life. Gregory started speaking when he was four.

Jess: How were Gregory’s school years?

Janette: He went to a mainstream playgroup until he was five, and then to a special school, mainly for children with physical disabilities. He had amazing physio and speech and language therapy (SLT). We asked for him to go two days a week to the mainstream primary and three days a week to the special school, encouraged by his SLT. We weren’t popular with Exeter council – it was like they’d never heard of that before – but it worked for Gregory. I felt he needed to be surrounded by ordinary chatter. It was a challenge, particularly communication between the two schools. As he was coming to the end of the first school the local authority wanted him to go to a special school full-time. The SLT suggested we see the schools in Taunton, where there was a massive push towards inclusion. We decided to move here because of that. We moved when Gregory was eight and it was like a dream. Our other son could go to the same school and there were other children there with similar disability to Gregory. The knock on effect of him being in a mainstream school is that wherever we go there’s bound to be somebody that recognizes Gregory. The first two years of secondary school were ok. The last three years were very rocky. He got suspended for a week for throwing a glass test tube across the chemistry lesson. They said they had to treat everyone the same, but a lot of it depended on the quality of the one-to-one teaching assistants and some weren’t very good.

It was very hard to know if I made the right decision. When he was 14 I went to see a residential special school because things were not good at school. They had communication devices, physio, hydrotherapy. I thought I might be able to go back to work, and then the school decided they wouldn’t have him. I was gutted. I think they felt his learning disability was the more dominant thing in his life than his physical disability but I see them all as part of him. Then he went to college at 16 and it was a breath of fresh air. They were all very embracing. He was at college for five years. He did gardening, pet care, cooking. They went on trips. He doesn’t do as much now as he did at college.

Jess: How do you think things have changed over the course of Gregory’s life?

Janette: I’ve come across a shift in attitude, particularly in social work departments. Social workers and other professionals working with children with disabilities occasionally have an attitude of, ‘You get a break when they’re at school.’ But all children are entitled to an education. They’re not called respite centres, or holiday camps. they’re called schools. If your child has a medical appointment, an orthotics appointment they’re continually missing bits of school. The pressure on services and funding is having a profound impact. I can look back 15-20 years ago and see that things weren’t as squeezed as they are now.

Jess: What support do you and Greg have?

Janette: I fought really hard. One social worker helped me a lot when Gregory was transitioning to adult services. I wanted to go back to college and do some studying. They awarded us 75 hours a week, and I went to college. The 75 hours is still in place, but it hasn’t happened since March 2020. There was absolutely nothing in the early days of March, April and May 2020 and even now the care company are finding it really hard to recruit because they don’t pay enough money, because the government doesn’t give enough money to local authorities to pay for these things. The care company can’t provide the support that they’re contracted to. This is one of the worst things. I might receive a rota on a Wednesday for the following week. Sometimes I only get two days notice until it starts. I can’t plan anything. I have not been able to work for 35 years, and I do feel quite resentful. I had to stop studying for my degree. When a carer goes off sick, there’s nobody to cover them. Often he should have a carer all day, but the care company can only get someone for 5 hours, or not at all.

I’m often having to pivot as the circumstances change and I’ve got to not fall over. I’ve found it less stressful to think I’m not letting an employer down, but I’m 60 now and I want to go to work.

It’s stressful having new carers in the house. Our bungalow’s quite small. People adjusting to you and you adjusting to them. We’ve had some amazing carers, people that you don’t want to ever leave you because they’re so good and they enhance all of our lives. But we’ve also had some shocking carers. Somebody decided that they were going to borrow some of Gregory’s money. Another drove Gregory 30 miles away because he needed a new tyre on his personal car and didn’t tell me. He didn’t know you have to put child locks on the door because Gregory will open the door as you’re driving along.

The relationship between support workers and our children is so important. Are they really interested in making their lives fun and interesting as well as safe and healthy? Does Gregory laugh? Does he go out and do interesting things with them? Are they sitting there at my dining room table on their phone for an hour while Gregory’s in his bedroom reading a book? Good people are intuitive as support workers. They know what Gregory is about.

Jess: How did you find the transition from children to adult services?

Janette: It’s like dropping off the edge of a cliff. The lack of physiotherapy as he gets older is quite worrying when all the physiotherapists I’ve met have said prevention is better than cure. We try to keep the stretches up, make sure he’s active, that he goes swimming and horse riding. They are not just activities, there are health benefits as well.

They closed the day center that the local authority was running. They outsourced to different private companies who do daycare. But if you’re an adult with a learning disability and a physical disability, then you become a minority of a minority. The setting that he goes to on a Friday said he couldn’t go on a trip because there wasn’t enough room for the bags and his wheelchair. I have learned that I can come across quite critical sometimes, but you would have thought an organisation that was supporting disabled people would have thought about it. I’m in the process of applying for deputyship from the court of protection. I haven’t had any problems since Gregory turned 18 about anything medical. Nobody’s ever questioned that I’m acting in his best interests.

Jess: How has being Gregory’s mother made you think differently about politics?

Janette: Care is the most important thing. There isn’t proper recognition of the hard work that carers do and they’re ignored by society. We need a career structure for carers in social care. The system is broken. Our MP is uninterested to the point of it being rude. I protested a year ago at the local elections and I got hounded by the Conservative councillors. I held up a big placard that said, ‘Don’t Vote Conservative’. A councillor came right up to my face and said, ‘You are a stupid woman’. We got into conversation and I was telling him about my son, and he said, ‘So what did you do to cause your son’s disability?’ I said nothing, and justice was served because he got voted out. I’ve never done anything like that before, but I just felt a wave of bravery come over me.

Jess: What would your advice to parents of younger disabled children be?

Janette: I remember never thinking about it when Gregory was growing up, but I wish I’d thought about the future. I think it’s important to think about what you would like Ben’s future to look like, and more importantly what he would like. Talk to your social worker about what older disabled people do, where they live.

Sometimes I think that nobody else can look after Gregory as well as I can. It’s not true, because I’ve seen other support workers be brilliant. My vision is for Gregory to live in a shared house with support workers. Greg thrives in a more social environment, not on his own. Social workers have told me the hurdle is housing, because the amount of suitable housing is negligible. The local authority here have become reliant on parents looking after their adult children because it’s so much cheaper for them. Most authorities don’t have a plan for people with complex disabilities, their health, their housing and their wellbeing. I want carers that we can really rely on, housing that’s suitable, and for Greg to not to be too far away. I want to be able to visit him and then come away secure in the knowledge that he is happy, that he’s safe, that he’s doing interesting things, that his needs are being met. Wanting your child to have a life of their own, outside of their parents, is a normal thing.

A Parent Perspective: Interview with Melanie

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I spoke to Melanie about being a mother to two children. Her son, Arlo, is seven and has cerebral palsy. Melanie is a journalist and in the last few years has written a book about the early years of being a parent of a disabled child and launched a beautiful magazine about tube feeding, amongst other work.

My son, Ben, is 13 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 people with similar lives and I hope you might too!

Tell us a bit about your family.

There’s me and my partner Rowan. I’m a writer and we live in the southern highlands of New South Wales in Australia, south of Sydney. We live with our two kids – Arlo is seven and Odette (Odie) is five. Arlo has quadriplegic cerebral palsy and that’s what brought us into the disability space and got me working and advocating in this area.

Tell us a bit about Arlo. What does he love?

Arlo has loads of hobbies and passions. He’s always been really into music and books. He loves Julia Donaldson, anything that’s rhymey and rhythmical, watching Disney movies and Bluey. He adores music and likes Rowan playing guitar. He’s into people, loves his family, has tons of friends. He’s been in mainstream childcare and school settings his whole life. He’s now at our local school with his sister, where he’s got one-on-one support throughout the day.

He has always made friends easily. He shares in-jokes, laughs a lot. He’s non-speaking but is very expressive. We’re really working on him talking using his eyes with his AAC eye gaze communication device, which is tricky but he can do it. He’s cheeky – he’ll mainly say ‘Play game, play game’. Unless he’s really sick, and sometimes even when he is, he’s pretty happy. He has his moments – he gets a bit shitty with his sister sometimes, though that happens less since she started at his school. She really speaks his language and they like the same movies and music. Arlo has therapies: speech, physio, OT every week after school, so he’s super busy. He takes it all in his stride.

How did you get Arlo’s diagnosis of cerebral palsy?

It was four days past his due date and had been a pretty ordinary pregnancy up to then. His movements felt different so we went in to the hospital, but they said he was fine and sent us home. On our way home I told Rowan to go back because the movements definitely felt different. They put me in a bed and said they’d induce me the next day. We were connected to the fetal heart monitor and all of a sudden Arlo’s heart rate disappeared. It was incredibly lucky that we were in that bed at that time. The emergency button was pressed and they got him out in 10 minutes. We don’t know what happened. It was just a random hypoxic incident – he lost oxygen and that caused damage to his brain.

We only spent one week in NICU and they cooled him for a few days. We couldn’t hold him which was hard. We were in the NICU with all these tiny preemies and you could see there was bad news being delivered all around us. An MRI showed there was bilateral brain damage to the motor section of his brain. We were told on leaving the hospital that “worst case scenario”, this could be cerebral palsy (CP). I didn’t know what that was.

He was always beautifully engaged, smiley and making eye-contact, but as the weeks and months rolled on he didn’t hit a single motor milestone. He never rolled, never sat up. We couldn’t cling to denial past the 3-4 month point. At six months old we got his formal diagnosis of cerebral palsy. Even after that I was googling ‘cerebral palsy misdiagnosis’, thinking this cannot be happening.

He was our first kid. I’d never held a baby really until Arlo. Once we had Odie, I realised that if Arlo wasn’t our oldest child we would have realised early on and would have been freaking out. I love that we had no idea and could be in this bubble. I went to mothers’ groups. I did all the normal stuff. The paediatrician who delivered the diagnosis was really kind. He said CP is so broad and could be very mild, that we just needed the diagnosis to get funds and support. He must have known Arlo’s CP wasn’t mild, but that we didn’t need that information then.

Now we know Arlo’s got a profound physical disability. He’s a wheelchair user, he’s non-speaking, and very bright. We’ve just had equipment trials and spent the day looking at wheelchairs and sleeping systems. We saw our first hoist and it’s confronting. I remember when I first saw a stander I thought it was so ugly, but we got used to it. Same with the hoist- we’ll get it, we’ll put it in the spare room for a year and then we’ll be ready when we need it. We love his wheelchair.

How were the early months and years with Arlo?

By some miracle he was great at breastfeeding, then he was eating purees – although that all stopped when he turned five and got his G-tube. He was in a standard pram for ages, and we had this period where things weren’t that different to his friends. By the time they were, we were okay with it. The only time it’s not okay is when Arlo’s really sick and misses school and his friends, and misses out on fun. That’s awful, and it happens more for him because his health is compromised.

He was such a beautiful baby. There was sadness and fear around his diagnosis but a lot of fellow disability parents I spoke to said try and stay in the moment, and when I’d look at him, he was joy. There’s scary stuff, there are hoists and equipment, and people say crummy things sometimes. But we’re lucky that Arlo is generally happy. We’ve had bad periods, but he’s now sleeping through the night and that’s a massive factor in our mood. I don’t speak for every parent, and I know there are real challenges, but I appreciate what we have.

What do you think enabled you to accommodate something so unexpected?

I think part of it is I wasn’t someone who had the baby shower and big ideas about becoming a mother. I didn’t really have expectations. It has helped having a supportive partner – I think that’s made all the difference. Rowan and I have always both worked flexibly and I think I’d feel very differently if it was all on me. I’ve also had professional success as a result of this. My career went in a completely different direction and my work now feels meaningful. I’m writing about stuff I really care about. I have a passion and I feel like I have a purpose.

How did your book, Special, come about?

We had a social worker come out to us soon after Arlo’s diagnosis and she was very well meaning, but she gave us a children’s book and DVD that were so depressing and bleak. I came up with the idea for a book, which was partly an excuse for me to talk to other parents because I wasn’t ready to go to a support group. I spoke to parents raising kids with all kinds of disabilities and there were common themes: we all try to stay in the moment. We all build community, try and find like-minded parents. We all find joy and a new perspective. It connected me to so many people and really fast tracked me to acceptance. I love that it’s helping other parents do that now, but it comes from a place where I felt so differently.

Tell me more about the tube feeding magazine, The Blend.

When we started tube feeding Arlo it was expected he would be on synthetic formula. He had been eating blended puree so it made no sense that we went from that to six bottles of formula pumped into him throughout the day. He was sick and aspirating. It was terrible. Another parent said I could put the pureed food he used to eat down the tube. We did, and everything changed, but there wasn’t enough information around. The pamphlets were really academic or designed for a child. That’s where the idea for The Blend came from. I wanted to make a cool magazine about tube feeding and for it to be beautiful and make people feel like they were part of a community. We have done two issues so far and I’m bringing out a third. The disability market is huge and there should be beautiful things to cater to that market.

How did you decide to have a second child?

During the emergency caesarean to have Arlo they found a cancerous cyst on my ovary so six weeks later my left ovary and fallopian tube were removed. My gynaecologist said we needed to “complete” our family as soon as possible and, very fortunately, I got pregnant when Arlo was just over a year old. That pregnancy was not fun because we were treated as high risk, which meant a million scans. They would say things like, ‘Her head’s growing a bit fast for her body,’ and it was just trauma and terror. But we had a planned caesarean two weeks before her due date and it was a completely different experience. It was lovely. I was awake when she was put on me. Seeing the typical milestones met, it makes you very unsympathetic to typical parents! Arlo taught us to have zero expectations and Odie has taken her time, she’s got there in her own way. Seeing the way her fingers and tongue move was mind blowing. When I saw her standing in her cot for the first time, I completely freaked out because my brain was not used to seeing children standing. We’ve got this weird training with Arlo that is only for Arlo. It’s been such a wonder to see both ways, to have both paths, to see the things they share and where it isn’t different.

But it’s complicated. The night before we had Odie, I was beside myself because I felt like I was betraying Arlo and that I could never love anyone as much. Of course, I could. Since then, Odie has been interesting and challenging in her own ways. Many days are harder with her than Arlo, who tends to be very sweet. Odie is a whole other bag of challenges. We let her do her own thing but I’m probably not as patient. She’s never allowed to be sick! I need to watch that there isn’t different treatment. I love that she has this world view that I never had. She sees disability is normal. She’s jealous of his wheelchair and his hospital stays. She has a really popular brother who makes her look good a lot of the time!

Are there parts of your life now that feel less unexpected than others?

Everything feels normal eventually. I know that we’d be tired and stressed regardless and I’m normally stressing about work, not Arlo. You think you’ll never get used to it, you’ll never be able to fold the wheelchair that has 26 different parts, but you do. Arlo has so much stuff – several medications, tube feeding – but it feels normal. The only times I’m conscious of it is when I notice other people’s reactions. It pisses me off when people think I have a horrible life or that what’s happened to us is the worst thing ever. I was that person before, but I want everyone to know what I know now, then there wouldn’t be this horrible reaction when you learn that your child has disability.

There’s rarely a moment where I catch myself thinking this is not what I expected. Getting the car modified was difficult – I’ve never been a very confident driver and I didn’t think I’d be driving around in a bus but I’m proud of myself for doing it. You realise you can do anything and that gives you confidence in other areas. I didn’t think I could write a book, or start a magazine, or do a podcast. In the day to day I’m tired, I’m laughing, I’m stressed, and the feelings are the same as they would have been if Arlo wasn’t disabled.

More about Melanie here: https://www.melaniedimmitt.com.au/

Find Melanie on Instagram or Twitter

A Parent Perspective: Interview with Ellena          

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I spoke to Ellena about being a mother to two sons – George has a rare genetic condition and Arlo is autistic. Ellena also works as a teacher with children who have physical and medical needs so her professional life is entwined with her personal experience.

My son, Ben, is 13 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 people with similar lives and I hope you might too.

Jess: Tell us a bit about your family?

Ellena: There’s me and my husband Charlie. We are both secondary school teachers. We live in London with two children. Our oldest son, George, is 12 and has a very rare condition called SEPN1 Muscular Dystrophy. It’s an autosomal recessive condition which is quite different to other muscular dystrophies inherited from one parent. We have a younger son, Arlo, who’s nine and has autism. Our oldest son is in a mainstream secondary school, our younger son is in mainstream primary school. Charlie and I lurch from one thing to the next on a daily basis like most families.

Jess: What do your boys like doing?

Ellena: They’re both real characters. George is a very emotionally mature child. He has spent a lot of time in hospital with medical professionals so gets on very well with adults. He is incredibly sociable and very good at making friends. He’s very interested in art – he likes making things and we have tried to nurture his creativity. There are lots of things he finds physically hard – he can walk but not really run or jump, and going up and down stairs is hard for him. He sometimes uses a wheelchair, but he’s physically ambitious. He’s decided that he’s very into badminton. He really likes going swimming – he can’t actually swim, but he’s fearless. He’ll just jump in.

Arlo is nine and has a specialist interest in trains. He can talk to you a lot about the world of Thomas, and he likes making elaborate train setups with tracks. He loves going to flea markets and finding things that appeal to him, which tend to be Thomas related. He’s found some amazing Hornby things, though it can be hard for him to regulate himself with the uncertainty of whether he’ll find anything.

Jess: What is George and Arlo’s relationship like?

Ellena: They get on quite well together. Arlo’s quite triggered by the sound of people singing and unfortunately George and I like to sing, so we get a lot of telling us to be quiet. He finds certain noises hard, so sometimes they’re a flashpoints. George said to me the other day that he sometimes looks at other siblings and wishes he had a different sibling relationship, because Arlo’s not so sociable and he’s not tactile or demonstrative. He is loving on his own terms. Those relationships are hard, especially when they both have quite different needs. At times, they have both had to yield to the other sibling in terms of time, or our attention, and I worry about that.

Jess: Tell me a bit about the births of your children, and your realisation that Arlo was autistic.

Ellena: Nothing has gone according to the plan that we had. Life as a parent is amazing when your child is hypothetical, and then when you actually have your children you realise nothing is ever how you think it’s going to be. Sometimes that means that your child is born with a really serious condition that is life threatening or life limiting, as was the case with our first child, and sometimes it’s not so high stakes.

We went through the genetic counseling process to have second child. We found out Arlo was a carrier for George’s condition but wouldn’t have it himself. When he was born, I very quickly realised things like laughing, smiling, eye contact were not how I thought they were going to be. Initially, for a very short period of time, I felt a very deep depression at this not being what I expected, or what I wanted. Then that went, because we are very lucky to be well supported as a family. We’ve got really good professional knowledge of children. I stopped thinking about all of the things that my life perhaps could have been and started focusing more on the way it actually was. It’s an incredibly privileged position – not all families are able to do that, and we shouldn’t expect them to. Life is very hard lots of the time, but that doesn’t mean that it can’t also be good a lot of the time as well. It’s about these massive contradictions sitting side by side always. You have to cling on to the things that are going well so you are able to keep going when things are really difficult.

Jess: How do your personal and professional lives influence each other?

Ellena: Before I had George, I was an assistant head in charge of inclusion at a secondary school in Hackney. I love teaching English, but I was also interested in how children learn and how we adapted the curriculum to fit individual needs. When we had George it became clear that he was very unwell. We had loads of different tests and I left teaching for a while, then had my other son not that long after. When I went back to work I became a more specialist teacher, and now I’m an advisory teacher for secondary schools. I support mainstream schools to do the best they can to include children who have physical or medical needs. We have a phenomenal number of children with very complex and quite rare medical needs in the borough and we want to make sure we get it right for them.

So I’m in the world of additional needs at work and at home. I sometimes reflect on that. I read things online about parents that are fighting for things or they’re not sure what’s happening, and it’s overwhelming. If I didn’t know all of the things I know through work, I would find it so much more difficult than I already do.

I think most parents, most of the time, do what they think is best. I have an interesting relationship with health professionals, professionally and personally, where judgements are made about parents. I always gently ask them, ‘Do you think that parent has done what they genuinely thought was right at the time?’ The answer is normally yes.

As a parent of a child with a disability, the number of times you are judged for your choices or your parenting is far more frequent than parents of non-disabled children. When George was little if a healthcare professional said something I found it upsetting or inappropriate I wouldn’t say anything. Increasingly I do say. For example, an Occupational Therapist visited our house recently to look at George using the bath. We live in a typical Victorian terrace, tall, lots of stairs. In an ideal world, I’d live in a huge house with great access, but the world doesn’t work like that. We went into our normal bathroom, and she said, ‘This is a very small bathroom. Have you considered moving?’ I said, ‘Out of interest, would you appraise somebody else’s house like that? Why do you think that it’s okay to say something like that because they are a parent of a disabled child? You have no idea what people’s circumstances are.’

It’s really hard to navigate those situations sometimes, because all parents are just scrambling around trying to work out what to do at any given moment. If your child has some sort of additional need, those challenges are multiplied by hundreds. Lots of experiences – going to a playgroup for the first time, or your child starting school, or going swimming – all of those things are completely different experiences for families like ours.

Jess: Do you have any advice for other parents?

Ellena: Never let go of what you think is right for your child, and for you as a family. If there’s a disconnect between that and what professionals are saying, or there’s a disconnect between that and how professionals are treating you, there’s nothing wrong with advocating for yourself and your child. Say if you don’t think something is appropriate.

All parents of children with additional needs could give you examples of mad things that professionals have said to them. I try so hard to think about that in my professional life.

Jess: What has been your approach to supporting George?

Ellena: Last year George had his PEG feeding tube permanently removed which was a big step for him because it was fitted when he was 2. He’s now waiting for the site to heal into a mark that’s going to be there forever. For him, that’s a symbol of a chapter of his life ending and moving on to the next thing. He’s quite philosophical about things, but he’s also a very good advocate for himself and others. I’m very proud of him.

We’ve never held him back or helicoptered over him. Sometimes I’ve had to keep all of my anxieties to myself, which is really hard, but he’ll give everything a go. But because I’m so immersed in this world, I sometimes forget that our life is quite different to other people. It’s not unusual for young people to have an autistic sibling, but George has a physical disability that is progressive on top of that. He has lots of medical equipment and these things impact him if he wants to do a sleepover or go on a school trip. I think George feels the difference quite keenly.

My husband and I have tried to encourage the boys to say what they feel about something, even if they’re worried it might upset us. It’s probably less obvious what the impact is on Arlo because he can’t always articulate his thoughts in a way that we understand. With George, we’ve always been very upfront and encouraged people to ask questions. When he was very little he wore a helmet because he could walk but he had lots of falls, and splints. We always encouraged George to be proud of those things. Recently, we went to a hospital for a sleep study and the next day he wanted to get back to school. It was hours of waiting for a consultant to see him, for no clinical reason. George wanted to leave and when I pushed for them to discharge us, the doctor asked if we had somewhere else wee needed to be. On the way home, George asked if the doctor was saying that because he has a disability, he shouldn’t expect to have a normal life? That he should expect to give up his days to sit in a hospital?

I’m hoping some of our groundwork will support him when he looks around and sees all of these differences. It doesn’t mean that life’s not going to be challenging in lots of ways. I try to acknowledge the differences and be really matter of fact about them, with George and with the families I work with. Say, ‘Yes, this is what my child does.’ I think the reason George is so keen on raising issues when he thinks somebody’s being discriminated against is because we’ve tried to encourage him to feel confident in himself, and with having a sibling who behaves differently. If we’re on the bus and Arlo’s flapping his hands and somebody says something, I’ll say, ‘Yes, he’s flapping his hands.’ You don’t have to get annoyed with people, just reaffirm what’s happening.

We say to our kids that the world is imperfect and there will always be people who are going to say and do things that they shouldn’t. You just carry on doing the things that you are happy with and that you want to do. You’ve got lots of supportive people around you.

You can find Ellena on Twitter and Instagram

Ordeals

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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)

8 Of My Favourite Non-Fiction Books That Talk About Disability

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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.

Most are available to buy from my Bookshop.org list here.

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.

A Parent Perspective: Interview with Lorenza

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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.

You can find Lorenza on Instagram: @chargeonwardsandupwards

and on Facebook: https://www.facebook.com/elizasays01

Buy Eliza Says App here: https://apps.apple.com/gb/app/eliza-says/id1537442815

A Parent Perspective: Interview with Amanda

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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.

Some names have been changed.

Amanda is on Instagram at @kemp_pilates

6 Excellent Books With Disabled Characters For Older Kids

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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

  1. 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.

A Parent Perspective: Interview with Serena

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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.

You can find Serena on Instagram @mum.of.faith

Her book for kids, JamJam Can!, is available to order here

10 Brilliant Picture Books With Disabled Characters

/ jess / Leave a comment

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.