A Parent Perspective: Interview with Amanda

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

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.

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

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

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

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.