parent perspective

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

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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

A Parent Perspective: Interview with Emma

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This is my latest interview in an occasional series – A Parent Perspective – with Emma. I first met Emma when her son, Ted, was very small and we lived near each other. Baby Ted reminded me so much of baby Ben. Since then she has moved out of London, had another child, Ted has blossomed and our families have become friends.

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.

Could you describe your family?

There are four of us: my husband, Rik, and me. Ted is my oldest child who is nine now, and my daughter Dilly is six. We often have a carer with us too. We live on the Wiltshire-Somerset border but we’ll be moving to Somerset once we adapt a house there.

How would you describe Ted and what does Ted love doing?

Ted is a very happy, smiley boy. He loves being around people and in the thick of it. His favourite place to go is a supermarket – he literally whoops with joy when he realises that we’re going there. He also loves slapstick comedy, silly games, fart noises, all of that kind of thing.

He has cerebral palsy from a catastrophic brain injury at birth, which affects his whole body. He requires a lot of support with everything in his life so we have a lot of help from carers.

Ted goes to a brilliant school in Bath. He used to really hate goodbyes and would wail as we waved him off on the school bus in the morning. They’d always text 10 minutes later to say he was fine, but it was awful. Then we had this gruff, Scottish driver who’d joke with Ted and now he gets really excited when the bus comes.

Did you know from the moment Ted was born that his brain injury was going to going to have affected him?

He was in a very poor state when he was born and he was whisked off into NICU. That night the consultant mentioned the words cerebral palsy. We were taking each day, each hour, each minute at a time. Once he moved from NICU into Special Care, I think the naive part of me was hoping for a miracle – one of these people whose life support was almost turned off but now they’re six foot and play rugby. There were lots of signs that wasn’t going to happen – feeding difficulties, physios saying he was very stiff, nurses giving us a knowing look with a slight tilted head. We had a diagnosis of cerebral palsy at about three months. Ted cried all the time in those early days.

There were some forums that I joined that I quickly stepped back from because it was just terrifying to me at that point – people’s children were passing away or having terrible seizure disorders. Life seemed very medical and very difficult. At that point, Ted needing a wheelchair was the worst thing I could think of. Now I know that Ted not walking is the least of our worries. I was asking myself if Ted was going to be constantly unwell? Was I going to be in and out of hospital wondering if he was going to make it through the night? At the beginning you don’t know what is going on, you feel like you’re upside down half the time. It’s a lot to deal with.

What was helpful in that early period?

Realising I could say no. There was a physio playgroup at 9am on a Tuesday and I found it stressful getting out of the house that early to get the bus. When I got there, I don’t know what I was supposed to be doing. Everyone else seemed to have a programme to follow or children that could play. The day that I said, ‘I don’t want to go to that, I’m not finding it useful,’ felt really big because I felt like my baby belonged to a system. He wasn’t really mine. He belonged to the hospital, social care, and health care systems, so it was good to take back some control.

I felt very different to other mums and like Ted was very different to other babies when he was tiny. But actually I realised that he didn’t really look any different to anyone else. One of the people I’d met in antenatal classes was persistent in inviting me out for a coffee and we went to baby massage, and that was really helpful. A little normality was what I needed. I learned to accept help from friends. I tried not to hide away and to do some fun things. They were all quite tinged with sadness though, because it was a traumatic time and the antithesis of what I expected having a newborn to be like.

How did you make decisions about having another child?

We always wanted more than one child but there was fear and anxiety. I knew it was very unlikely for the same brain injury to happen again but once you spend some time within those Facebook forums you hear awful stories. I didn’t know if I could do that again, but I knew that we did desperately want another child. I wanted to experience what it might be like to have a neurotypical child and have a non-traumatic birth. Ted was three when Dilly was born and was having a bit of time at nursery. He still had his moments, but he was generally happier about things, a bit more comfortable in his body. We’d resolved some of the feeding issues (he still wasn’t tube fed at that point). It felt like a good time, and it was brilliant.

Dilly’s birth was super easy in a birthing pool but feeding was not smooth. I decided I was going to make breastfeeding work, but it was four months of absolute agony before we found our groove. It was difficult deciding whether to keep going or move to formula because I’d had to do that with Ted. I’m glad I persevered – I fed her for four and a half years in the end and it gave us an incredible bond. Having Dilly made me really appreciate what it’s like to raise a neurotypical child, but also understand everything that Ted had struggled with.

They are completely different children, and you have to accept them for the child they are rather than the child you want them to be, or that you think they are. Regardless of disability. I realised that I had to fully accept Ted as he is. I had to embrace every aspect of him – feeding difficulties, missed milestones, a body that didn’t work as it should – as much as I accepted that he had brown hair and brown eyes.

How have you approached therapies with Ted?

I definitely went through a stage of thinking if I just found the right combination of therapies, I could make Ted do these things that he was clearly never going to do. We settled on ABR therapy which we’ve done since he was six months old. When we first went he was very tight and angry, and I don’t think it’s necessarily given him much more functionality but it’s brought him a lot of comfort within his own body. I focus on the physical therapy, and could probably do more in terms of communication. Ted’s very bright, sociable and clearly understands a lot, but we don’t know where his cognition level is and we haven’t found a good system of communication beyond eye pointing and smiling.

How do you think having Ted changed the kind of parent you are?

I think I appreciate every little milestone of Dilly’s in a way I probably wouldn’t have done if I’d had a typical first child. I think it’s been a real blessing having Ted because he suits who I am as a parent – low key! I don’t feel pressure to make sure that Dilly is attending Mandarin classes or whatever. We prioritise experiences and family time over formal learning.

Before you have children all you know about is sleepless nights and ‘terrible twos’. You don’t feel the love, or see how angelic your children look when they sleep, or know what it’s like when they write you cards saying, ‘I love you’. From the outside you just see the difficulties, but you can’t know the amazing feeling when I make Ted laugh.

How have you found having carers to help Ted, and how have you made it work for your whole family?

I’m extremely grateful for the help that we have. It ebbs and flows but I have a good life and if we had to do all of the 24/7 care, would I be as resilient and upbeat about it? We’ve had carers since about 2016, including some nightcare, and it’s strange sharing your house with other people. For the first time recently, Rik and I were bickering in front of the carers because our house is not particularly big. I think it was making them feel quite uncomfortable, but I can’t wait until 8pm on Friday to schedule an argument with my husband. Having carers in the house is really helpful but there’s not a lot of privacy. It does mean that I can do the fun things with Ted and pass off the boring tasks. I can focus more on Dilly and I’m able to work and do some things for myself, which is incredibly important. It comes with a fair amount of guilt for people that don’t have what we have.

What helped change your thoughts about Ted’s disability, since the period after his birth?

Having talking therapy and processing the emotions was helpful to a degree. Meeting you was really helpful – someone who was a little bit further down the road than you are, modelling that it’s okay. Reading Andrew Solomon’s book, Far From The Tree. Listening to podcasts. Listening to disabled people, partly on social media, and unpicking internalised ableism.

Realising that we’re all different, and different doesn’t have to mean bad. Our life is never going to be how it is in our head. We’re never the mothers that we think we’re going to be because our children come along and are their own people. That’s irrespective of challenges. I looked at what I want from life and how I could go about getting that, and none of that involved taking away Ted’s disability. Before I had Ted, I definitely had times where I felt like there had to be a bit more to life. I wanted a life with more meaning, and that’s exactly what I’ve got. Going through difficult times makes you appreciate the better times.

When Ted was born someone from work sent me a card which said (I think it’s a John Lennon quote) that everything will be okay in the end, and if it’s not okay it’s not the end. It’s really hard to see that in the beginning, when I thought ‘okay’ was a miracle recovery. That’s not what happened and it’s more than okay. You can come out the other side of the difficult times and it can be brilliant.

You can find Emma on Instagram here, and on Twitter here

A Parent Perspective: Interview with Amy

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This is my latest interview in an occasional series – A Parent Perspective – with Amy. Amy lives with her family in Cornwall, working as an artist and making beautiful pots. Her daughter, Rosa, has a rare genetic disorder and I really enjoyed talking to Amy about how she has trusted her instincts as they have navigated their lives with Rosa’s life-limiting condition.

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.

Could you describe your family?

There’s four of us – me and my husband, Gareth (we’ve been together for our entire lives), our daughter Rosa who is 13, and our son Ithan who is 11. Rosa has Canavan disease which is a rare genetic brain disorder and means she needs a lot of help. We live in a lovely, tiny cottage on a river in south Cornwall.

What are Rosa’s favourite things to do?

She likes anything that is a bit shocking, that makes you jump, and things that you build up to. We play lots of games, Kerplunk and board games. She enjoys body noise humour. She likes interaction, being in a group of people and being with other kids, which is important and has been lacking so much over the last couple of years. It’s been really difficult to facilitate because she is very vulnerable and we have had to be horribly cautious for ages.

What impact does her disability have on her day-to-day life?

It affects every aspect of her life. She’s nonverbal, in a wheelchair and doesn’t have very much movement. Rosa’s communication is largely through facial expression. She does things brilliantly at school, but at home she just expects us to know, which is cheeky but fair enough. She’s got a computer at school that she operates with a switch but at home she’d rather we just entertain her, not have to press a button to make it happen. She looks up and smiles for yes, and looks down and doesn’t smile for no. Her condition is progressive and we feel things are getting harder for her and she’s in a fog more often. She’s had more seizures over the last few years which means constant managing, trying to make her as comfortable, involved and happy as possible without overwhelming her.

When did you find out Rosa had this condition?

We had a completely blissful first couple of months of just being in love with our new baby and I felt really good. I started to wonder when she was about three months, but we didn’t talk to anybody until she was seven months old, when it was probably quite obvious to everybody else. I don’t think I wanted to know, and as soon as we talked to professionals it was like the floodgates opened. Everybody wanted to do tests and Rosa was in and out of hospital. You’re in such unfamiliar territory, it’s like being in the midst of a hurricane, just trying to make sense of it. We got her diagnosis very quickly – it was only three months after we’d first talked to our health visitor, and we were lucky because it’s a really rare condition.

We’d always wanted more than one child – we were initially quite frightened to go ahead with another pregnancy but were able to have a CVS test at 11 weeks of pregnancy to rule out Canavans. Ithan is the polar opposite of Rosa. He was feisty from the moment he was conceived, and then he arrived and held his head up, like, ‘Here I am.’ He did everything really early so there was no chance to worry. With Rosa our whole life landscape changed, so to then have this little miracle of normality come along was (both) wonderful and sad.

How has your approach to appointments and professionals changed over the years?

We’ve been quite good at that from the start. We sacked our first paediatrician because we didn’t like his attitude. We felt like he didn’t like children and he never addressed Rosa. His initial examination of her destroyed me. I felt he was so cold and moved her around like she was a thing.

Initially we did all the appointments that came and we were more compliant, but we’ve always resisted medicalising Rosa’s life as much as possible. Some people look the condition up in the book and say we’re going to do this and this without assessing if that’s necessary and weighing up the pros and cons for Rosa. Gareth comes from quite a scientific family and I come from a hippy, intuitive family which makes a good combination. When we first got the diagnosis I was really frightened to know the facts whereas Gareth was doing massive amounts of research. He could then drip feed me the information when I wanted it which worked really well.

It sounds like you had such strong instincts about the kind of parent you were going to be and that advocacy bit of it came naturally.

Yes, I think so. There are experimental treatments going on in the States and we looked into all of that but we felt that if Rosa’s life is going to be short then we want it to be as fun as possible. We don’t want her to spend it in hospital, recovering from surgery which probably won’t make that much difference. We decided at the beginning it was about her quality of life and we’ve got more strict about that. Unless we can see how an appointment is going to benefit Rosa, we try not to do them.

Do you think there’s things about the uniqueness of Rosa that has then affected the way that you’ve been a parent to Ithan?

I know that having Rosa as a sister has hugely affected the way Ithan is compared to his peers. There are so many times when we’re going to do something and then we can’t because of Rosa. He’s so good about it and adaptable. He’s very tolerant of Rosa needing a lot of care and attention. Gareth and I work in our business together, at home, so one or both of us is always around and I hope Ithan feels there’s enough attention for him. We try to make the most of good days and seeing the relationship between Rosa and Ithan is precious.

The last few years we’ve started intentionally doing more things separately with the kids. We take turns taking Ithan camping, because Rosa loves camping but our camper van has got too small for us all. It’s important that Ithan can have some undivided attention. For years we took Rosa’s chair across the moor but now she’s big and it’s bumpy. Sometimes you have to recognise there are limits to what you can do, and Rosa would enjoy juggling at home more than dancing across the moor in the weather.

Does Rosa enjoy school?

It’s been really patchy how much Rosa’s been at school because of Covid, and we’re also in the middle of a massive hellish battle with the council about transport. It’s so frustrating and emotionally exhausting because it should be simple. Rosa’s had a taxi to school for years. It’s a brilliant school which she’s been going to since she was three, and she loves it. She had a scary medical event in July when she stopped breathing and had a cardiac arrest out of the blue. She is now fine but transport stopped because they said the driver and assistant weren’t qualified to do it. I’m arranging the training for them but the council keep moving the goalposts.

A school day is very short anyway, in terms of getting work done. We’re both self employed and driving Rosa to school, or her not going to school, has an impact on the wellbeing of our family. Ithan’s school is in the opposite direction and we’ve only got one vehicle, so it’s all juggling while trying to run a business.

Do you have help from carers?

Not enough. We have one carer who brings toys and plays with Rosa for a few hours after school. It’s okay if one of us is here with her, and it’s better than having nobody, but it’s not a great help.

We had more help when Rosa was little. My brother used to work with Rosa and that was great. We had Homecare for some years which was mostly helpful although it was awkward to make changes, and you didn’t always know who was coming. Then there were cuts, and they decided that Rosa wasn’t disabled enough and we lost 30 hours a month of help, which made a big difference. Now Rosa is so big, it feels difficult to get anybody in who can be properly helpful because we don’t have any hoisting or any way of getting her upstairs apart from carrying her.

How has Rosa’s feeding has changed over time?

For the first few days she had trouble feeding, and then she was brilliant at breastfeeding and didn’t want to stop. She was feeding constantly until she was nearly two, and she used to love eating. They were telling us she needed to have a gastrostomy* and we were saying she doesn’t. She was gorgeous and chubby. It started to get more difficult when she was about six. She was aspirating more and it got harder to keep her hydrated when she was poorly. Gradually she was enjoying eating less, finding it more difficult and taking longer. She had a nasogastric tube for a bit, after she’d been ill, and that’s when we started supplementing with formula. We decided it was time to get a gastrostomy, which was a surprisingly hard decision but it felt like Rosa had said, ‘I don’t want to do this anymore, it’s too hard.’ She was eight when she had a gastrostomy and afterwards she didn’t want to eat anymore. Even birthday cake and ice cream.

We started doing blended food* almost as soon as she had her gastrostomy. Our previous paediatrician had told us about it. Rosa’s got a really tiny tummy capacity so we have continued to use formula as well. I blend a lot of her food with formula and when she’s at school they feed her formula, because it’s straightforward. Now she also has a pump feed at night. It was another thing that I was resistant to, because I feel like your tummy should be able to rest when you’re sleeping, but there’s always a bit of give and take – a tug of what your instincts say and what your child needs. Sometimes she just has water in the pump because milk is just too much, and sometimes anything is too much. She has gained weight, which is brilliant for her, but a nightmare for us because we’re still carrying her around the cottage. She’s still really slight and nowhere near the size of a typical 13 year old girl, but at least she now has some reserve.

Terms: *Gastrostomy – feeding tube through abdomen into the stomach

*Blended food/diet – liquidised food put through a feeding tube

You can find Amy on Instagram, Facebook and her blog is here.

A Parent Perspective: Interview with Jo

/ jess / 1 Comment

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Jo. Jo’s eldest son is disabled and her personal experience motivated her to look at the wellbeing of parent carers in her professional work as a psychologist and writer. I loved talking to Jo about how she’s balanced working and caring over the years, which I think is a familiar challenge to so many of us, and how she’s making sure her research is useful to parent carers.

Could you describe your family?

I live with my husband and three sons. My eldest is 14, and then I have a 13 year old and a nearly 10 year old, and we live in north London. I often describe our family as quirky which I’ve come to embrace.

My eldest son is disabled – he has cerebral palsy, learning disability and autism. He’s in a good place at the moment. His sense of humour has come out – he’s discovered some swear words that he’ll suddenly shout out at tea time and I find very funny (and he knows he’s being cheeky). I don’t want to undermine how difficult it has been to get this good place, so I appreciate and enjoy it, but it can feel precarious.

What are your son’s favourite things?

He is happy and really settled in a special school. He loves pizza and chocolate cake, and transport. Once a year I take him away on a train and we went to York in the summer which was special. He sits on the train and shouts ‘All aboard!’ which makes me chuckle. He loves being out and about, for coffee and a cake, to sit on the bus.

In the house, and during the school holidays, it’s quite difficult to entertain him other than TV, iPad, iPod. He likes the trampoline, pacing around. He used to be absolutely terrified of dogs and it was getting to the point we couldn’t go to our local park because he’d scream or run into the road when he saw a dog. But we got a dog three years ago and she’s been incredible, and then we’ve just got a new puppy who we hope will be more playful and interactive. My son loves throwing a ball or a stick for the dogs, and they have now become a big part of his everyday life. He gives them fresh water, puts their food out. He’s in charge of letting them in and out of the garden and they have cured him of his phobia.

How does his disability affect his day-to-day life?

He is very mobile and walks and runs around. His memory is not great so we break things down for him with lots of repetition. That can be quite hard when you’re very tired. His speech is quite affected. Something I found really hard to get my head around with brain injury is that some days it’s like he’s firing on all cylinders – he’s funny and fast, tells my husband he’s going to put custard in his slippers – and it feels like this is him. Then another day he won’t respond – he’ll be staring out the window and it’s like the neurons just aren’t connecting in the same way. I think some of it is tiredness or when he’s coming down with illness. I’ve learned over many years that when he’s getting ill he has a couple of weeks of feeling grotty but it doesn’t show, so I wonder why he’s being so irritable and then it all comes out and he’s lying on the sofa and needing me.

It was interesting during lockdown that he was so well and his behaviour was amazing. It was only when I went to a training session a few years ago that I heard someone say that people with learning disabilities can be more prone to illness, and illness can really affect behaviour. I sometimes feel guilty for not realising these things sooner. You need to know these things to empower yourself, and also to know that some changes are temporary which makes difficult periods more bearable.

Your two eldest sons are quite close together in age. What were their early years like?

After my eldest son was born we were so delighted he had survived following a traumatic birth and we didn’t fully have an idea of what his diagnosis meant for him. Then when my second son was born it was really tough because it was when some of my eldest son’s difficulties became more apparent, when he was 18 months old. I was full of hormones, and I couldn’t recover from the birth with two kids under two. I had some difficulties trusting other people to look after my eldest son, which may have been the case anyway but was exacerbated by his difficult birth, and childcare was expensive so I didn’t get enough support. I remember I had to put my second son on a chair on the sofa, with a footstool in front, to stop my eldest son getting to him and scratching his face. I’d found a way that kept everyone safe, but the health visitor came round and said I couldn’t put a baby in a chair up on a raised surface. It’s difficult when people come into your house and make comments without having an alternative solution. You are quite exposed when you have a baby anyway, but when you have a disabled child that is magnified – the number of people coming, looking, commenting, telling, advising. It can be quite disheartening as a parent. You’re having to prioritise what’s the most important thing at the moment. That’s why parent carers have such amazing skills.

How did having your eldest child affect your career?

I was a psychologist in primary care in the NHS before I had children. After my eldest son was born it was just about manageable, but then his appointments really increased and I had my second son. My eldest was getting ill a lot and there was a lack of flexibility from my employers and it became too difficult. It was a really hard decision to leave my job because I’d worked really hard for it. I know lots of other parent carers have this difficult decision to make – you like your work and it gives you purpose and meaning, but then it adds to the stress so much that it becomes untenable.

I gave up work for a bit, and then I started working in counselling for a charity supporting male survivors of sexual abuse. The team that I worked with and the work I did there was incredible, but I kept coming back to emotional wellbeing in parent carers and wondering why no one was talking about it. It felt like a hidden thing that wasn’t acknowledged because everything is about the child. I was mulling this over for a long time before I decided to go back to do a Doctorate and research that topic. I started my Doctorate when my eldest son was 10 and it took me for four years.

Before that I had set up my website Affinity Hub (www.affinityhub.uk) to signpost to emotional support because I was hearing anecdotes about general counsellors not really getting what parent carers needed and I thought there must be some people with expertise in this area. I wrote a few articles for journals in therapy and counselling and found counsellors that were often parent carers as well, or had worked in the field for a long time and really got it. I also did a brief survey on my website because I was curious about how parent carers were feeling. The response I got to that drove my desire to do the doctoral research, which then fed into my book Day by Day: Emotional Wellbeing in Parents of Disabled Children which was published earlier this year.

What did you find in your research?

To feel well, you want to feel like you have some control over your life and that came through really strongly in my research. The importance of connecting with positive other people as well and how for some people their family or friends could be such a strong support and for others those were the very people that had really let them down. The importance of finding other parent carers, which was not surprising but so strong. Also the importance of the connection, the love and strength of feeling that parent carers have towards their child. I think a lot of parent carers develop an awareness that we don’t have control over life, and it can be difficult at times. There is a kind of a wisdom – you see what’s really important, and that things are fragile and precious.

it was so important to me that something practical came out of my research because having felt quite alone in some of my difficult feelings in the early years, I was shocked at how many studies were out there about risks to mental health for parent carers. I’d never read about these studies and I was a professional in the mental health field. When I found that research I thought I’m not alone. I’m not a failure. It was so powerful, but also made me really angry that it’s not better known. It’s important to me that research gets to the people that need it and I worked not only on my book, but training for professionals and the NHS about how they can better support parent carers.

Has your research made you think you would have done some things differently?

A common theme was guilt, and giving yourself a hard time for things that you could have done differently. I’m reading a lot about self-compassion at the moment and I think it’s so important for parent carers. You’re only human, you can’t know everything, you made the best of things at that time. There are things that I would have done differently, but I try to not give myself a hard time about it now. There are certainly things that I would want to have been different with the support around me, and the support around all parent carers. My big bugbear is acknowledging the emotional impact, which I think is still rare or done very insensitively.

Have you done any research into siblings of disabled children?

A lot of parent carers I spoke to felt that there could be a tendency to overcompensate for siblings. To give them amazing days out and let them get away with things, being desperate to give siblings amazing memories.
I felt guilty for a long time about my middle son because he was born so close to my eldest. I tried to protect him as much as possible but I’m sure it was stressful for him because of some of the behaviours of my eldest son. Now I look back and I don’t know what more I could have done. It was the nature of the experience.

It’s interesting with siblings because they go through phases of getting on. Initially, my eldest and middle were quite close, then my eldest and youngest, and then my youngest and my middle sons. I think you have to remind yourself that those dynamics would be there anyway, disability just adds an extra thing.

When they were all younger and my eldest son disturbed a game, for example, I would say ‘It’s not his fault, he doesn’t understand.’ I was hoping that they would get an understanding of their big brother’s needs. Then I went on a Sibs training course, and one of the things that adult siblings of disabled people reported as hating hearing the most is, ‘Don’t give your brother/sister a hard time because they can’t help it.’ Or ‘it’s not their fault’. So I’ve stopped saying that but it’s an ongoing learning process!  Being a parent is hard, managing all these dynamics, and you never know if you’re making the right decisions at the time. I think it’s important to keep hold of the idea of ‘good enough’ parenting rather than expect perfection. There’s no such thing as a perfect parent, you just try and do your best.

You can find Jo @affinityhub.uk on Instagram, Twitter and Facebook

Jo’s website is here: www.affinityhub.uk

You can order her book Day by Day: Emotional Wellbeing in Parents of Disabled Children here

A Parent Perspective: Interview with Jenn

/ jess / 1 Comment

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Jenn, mother to Alastair who is 17. The two of them run Smiling and Waving which sells brilliant badges and merchandise. Earlier this year Jenn and her husband Adam fitted out an accessible camper van so that their family can travel with the facilities and equipment Alastair needs. We talked about how much freedom that gives their family, but also the challenges of Alastair transitioning into adult services.

Could you describe your family?

We are Jenn, Adam, our son Alastair and our spaniel. We live in Hull, East Yorkshire. Alastair is 17 and goes to college where he’s doing a sailing course, a Duke of Edinburgh award and works in the cafe and shop there. We love kayaking, the beach and the sea, live music, eating out, socialising. We’re never really at home.

Last year we bought a panel van that we’ve spent this year converting to be an accessible crafter camper van designed around Alastair’s access, equipment and safety needs. We’ve almost finished (it’s a work in progress) and we went away every single weekend over the summer.

What does Alastair love doing?

A lot of water activities like kayaking and paddleboarding. He also loves riding his trike which gives him so much independence – he’ll stop to notice things which we would have pushed him past in his wheelchair. He also loves skateboarding and music.

At home he likes YouTube. He loves watching reruns of Rick and Morty, laughing at the same parts every time. We listen to a lot of music on vinyl and he knows all the album covers. He’s a big Gorillas fan, and Paul Weller, Oasis, David Bowie.

How do you describe Alastair’s disability?

Alastair has Angelman syndrome, which is a genetic disorder. He is nonverbal but communicates through symbols, tone of voice and body language. Alastair has physical disability and doesn’t walk a lot. He uses a wheelchair, his trike, or his walker to get around. He also has a severe sleep disorder and epilepsy.

How did you pick up that Alastair might have a genetic condition?

Alastair struggled to feed after he was born and was tube fed as a baby. He couldn’t do things other babies could do and everyone said it was because he’d been tube fed for so long but I knew it wasn’t just that.

I was going to the Health Visitors, but one of them told me I should just do more shape-sorters with Alastair. I went to the GP. It was a constant fight to get listened to and it was only when we had Alastair’s one year checkup and he couldn’t hold his head up that they finally listened to me.

Alastair was finally referred to a paediatrician and a geneticist said they were going to test for Angelman syndrome. They told me not to google it but I did, and as soon as I read the list of symptoms I knew he had it. It wasn’t a surprise when he then got diagnosed at 18 months old.

I was 17 when I had Alastair so having a baby was a big thing, and he just happened to have a disability. Adam and I were so busy working out our careers that if anything it made me more determined. I had no preconceptions about what parenting would be like. I wasn’t even an adult myself, so we’ve always grown together. Parenting doesn’t come with a handbook, no matter what your age.

How was Alastair’s school experience?

I walked into a nursery classroom at a special needs school, with the children sat in a circle doing physio, and I felt like I could have just left Alastair there and he would have been fine. He was at that school from age three to when he left at 16, last year.

Alastair really thrives being around a variety of people. When he got older at school, he was put into a Profound and Multiple Learning Disability (PMLD) class and I felt it was very segregated so he’s now at a special needs college with a whole variety of disabled people and he is loving it.

Post-19 we’re going to look to get a personal budget for Alastair. He’d go stir-crazy in a day-centre type setting so I’m hoping to continue with watersports and what he loves, but also fill his evenings. He goes to a youth group on a Tuesday night and I just found this new disco on a Wednesday night, and we go and see live music on a Thursday night. He’s a busy guy.

How does Alastair communicate?

Alastair is very good at letting you know his immediate wants but sometimes he struggles with his emotional needs. He smiles a lot but sometimes he laughs when he’s in pain, or giggles when he’s upset, and the difference between a happy giggle and an angry giggle is very subtle. People can think he’s being friendly when I know he’s saying no. Alastair really responds to tone and mood so if we see he’s angry we model the word angry but it’s difficult because we’re trying to guess his emotions. Maybe he’s more mad than angry. Alastair loves choosing his own outfits. He does that every single day even though I think some of his outfit choices are questionable!

We’ve always presumed competence with Alastair. The first time we heard about AAC (augmentative and alternative communication) and presuming competence was at a conference through a charity called Angelman UK. His speech and language therapist (SLT) said he would have to prove himself before he got an AAC device. They said he wasn’t doing enough on the one they had loaned him at school. But hearing about competence was like a little light bulb moment and made me realise the advice we’d had was outdated. I watched webinars and I found an AAC device for Alastair. People assume his SLTs got that for him, but it was us. Sometimes he’ll random press on his device, but whatever he says we respond to. One of the first words he learned was ‘come’, and I would come running, every single time. He’d wait until I’d get out of the room, just because he knew I’d come back.

We’re modeling language to him on his device and it’s really helped his understanding. Alastair wouldn’t really understand if you asked, ‘Would you like a drink?’ but if you say show him a drink, he knows. We don’t always have objects with us, but on the AAC device we’ve got a full range of vocabulary available. Maybe he’ll use it more to communicate to us in the future. 

What do you do to facilitate him doing the things he enjoys doing?

We employ Personal Assistants (PAs) for him. Everything needs to be wheelchair accessible and we have to plan a lot of what we do around toilet stops and Changing Places. The van is life changing in that respect – we can go more places without needing to find a hotel or a toilet. It was a mobile Changing Places at a festival that first gave me the idea!

Alastair has funding through a personal health budget and direct payments from the local authority – two separate accounts, two separate audits – which pay for his PAs. All of his PAs have been friends of friends, and only one of Alastair’s PAs has worked in care before. We’ve got a team of three young people who have similar interests to Alastair. It can be difficult having people in your house a lot but it’s made easier by us all getting along and Alastair winding us all up.

We’re going to readvertise soon because we’re looking for somebody to add to our team but I do find it a really daunting process. The employment side is not something I enjoy doing at all. Adam’s always reminding me that I’m not an accountant and I shouldn’t be doing all the work. We’re very lucky to have a lot of different medical specialists involved but it’s also managing all of them. There’s all this stuff that goes on in the background – what you see on social media in the smooth swan gliding along, but actually there’s all this paddling beneath the surface.

Are there new challenges now Alastair is almost an adult?

Yes. Alastair’s meant to go to a respite home for two nights a month, but he’s only been six or seven times in the past two years. We wanted to move to a new respite setting for adults and the meeting happened recently with continuing health care, his adult social worker and a children’s social worker. The meeting was without us and one of the social workers didn’t agree with our plan. I got so frustrated because I can’t make even something as important as this work.

We are no longer Alastair’s legal guardians because he’s over 16 and that’s really hard. Alastair needs a filling and we had to sit with a whole panel of people to decide whether it’s in his best interest or not. We get told all the time that the systems are there to help vulnerable people who lack capacity but I want to do everything for him and instead I have to apologise that I can’t get things to work for him. Last Friday the social worker hadn’t responded to any emails about Alastair going to respite so the team cancelled his transport but didn’t tell us. Alastair was left at college and when they rang us we were an hour and a half away. Apparently he’d just been saying ‘home, home, home’ on his talker which broke my heart. I’m trying to ring everybody on a Friday night but they’d gone home. I couldn’t get anybody else to pick him up because his wheelchair doesn’t fold so we ran to get him. So much of his care has to be organised by all these different people and there’s no process for when it falls down.

How has having Alastair changed you?

Alastair has taught me to have fun. We’re playful and laugh a lot. I was so shy at 17 but there’s no room for being shy if you want to stand up for Alastair and demand what he needs. Deep down I’m still really shy and get nervous but if you saw us out you wouldn’t recognise that side of us. He’s also taught me how to advocate not just for him but for a lot of people. To stand up for everybody’s human rights.

We’ve been parents for nearly 18 years now, but this last year has been the hardest. Raising a teenager has been the best thing I’ve ever done. It’s amazing. But the transition into adult services has been the most difficult thing since he was born even though I tried to get all the information that I could. I sat down with solicitors. I’ve gone to conferences, workshops, webinars, and it’s still fallen down. I was warned about the transition process being hellish and it is.

I’ve just had a few months where I’ve not been able to work. I went back and did a Masters four years ago, and then I built up my own freelance business because working full time just wasn’t possible. Last year was so frustrating when I’d set up my own business but Covid meant I suddenly couldn’t work for for six months. That’s when Smiling and Waving came about, selling badges and merchandise. It’s for Alastair – he’s involved as much as possible in every aspect and it gives us both a kind of creative output. He designs T shirts, uses his walker to go to the post office. It’s really great for both of us.

Find Jenn on Instagram at @smiling_and_waving

A Parent Perspective: Interview with Fiona H

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My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Fiona who has three sons. Her youngest son, Joel, has just turned 18 and is autistic. I really enjoyed hearing Fiona talk about the dynamics in her family now her children are adults.

Could you describe your family?

I have three sons: Samuel is 24 and he is very close to Joel, my youngest, who just turned 18. My middle son, Ethan, is 20 Ethan is also extremely close to Joel and they have a unique relationship. Joel was originally a twin but I lost the other baby during the pregnancy.

Joel didn’t sleep for the first six years of his life and didn’t meet milestones. He didn’t walk until he was about two and he had very little speech. Because I had two older children I knew there was something going on with him and I took him for an assessment when he was 18 months old. A professor in Glasgow said he thought what happened in the womb had something to do with Joel’s delayed development and he thought there might have been some brain damage.

Joel went to a fantastic special education nursery in Glasgow when he was two and a half, and then to a special ed school because his development was very delayed. His diagnosis was Global Developmental Delay, which is a massive umbrella term that they say when they don’t know what’s wrong.  When we moved up to Dundee, he changed school where he was assessed and eventually given a diagnosis of Autism Spectrum Disorder and Sensory Processing Disorder when he was 13. I didn’t have much support – my family don’t live here and my ex-husband and I split up, so I looked after the boys on my own.

Can you tell us a bit about Joel and what he enjoys?

Joel’s never really played with toys. His favourite thing when he was younger was a taking leaves and branches off trees and bringing them home to demolish, bit by bit, until they were gone. He’s six foot two and very skinny. He was a picky eater but his school have been encouraging him to eat everything. He has a very sweet tooth and he would eat chocolate all day if I let him. He loves music – there’s always music on in every room of the house and the car – and watching films. He’ll watch the same film for months on end and know every line.

His speech is coming along – he can say short sentences now, what he wants or he doesn’t want. He very rarely gets upset, though he bites his fingers when he’s frustrated. He’s good fun. The school describe him as being very gentle. He’s a really sweet boy who is affectionate in his own way.

Is Joel at school or college now?

A few years ago Dundee social services were pushing me towards employing support for Joel directly which I really didn’t want to do. They could offer me all sorts of things in theory, but in reality the funding is not there and I couldn’t bear the thought of Joel having to live with me for the rest of his life.

I wanted Joel to go a Camphill School, which is based on the Steiner method of education, because there was almost nothing for him in Dundee and they do a lot of learning outdoors which he loves. I had three friends help me with the application which took about six months, and we got him in. Dundee fund the place and it’s actually cheaper for Joel to be there than it is for them to offer the services they said they could at home.

The school has seven acres of land and they grow a lot of their own food which the kids are all involved in. Before Joel was going to school and coming home, not seeing any friends out of school. At Camphill he lives in the same house as five other boys, house parents and co workers. He eats almost anything now, which he never did before. He’s learned to ride a bike. The whole ethos of the school is to push the kids to the best of their ability. He has a great life there and is so happy.

How did you explain how Joel was different when the boys were younger?

There’s 21 months between Ethan and Joel. Luckily, Ethan was a very self contained and easy toddler because Joel took up almost all of my time. Samuel was six when Joel was born and he was very helpful. I used to say to the boys that Joel has a different brain to everyone else’s but it’s a very special brain, and they thought that was quite cool. We kind of knew that he was autistic, but we didn’t want to use the word until we knew for sure.

We dealt with things on a day-to-day basis. Every day was different. For the first four months of his life, Joel screamed the house down every time I bathed him. I was googling and it came up with loads of scary stuff, so I just went with my instincts and persevered. I instinctively knew he needed repetition and eventually he loved baths and now he loves swimming.

How quickly did you come to terms with Joel being different?

In my heart of hearts, I knew he was different. I didn’t say anything to anybody, not even my husband at the time, but I just knew from the moment he was born, when he cried for a few seconds and then lay in my arms and looked at me as if to say help. I think I wanted to hide it, keep it to myself, process it, before I could vocalise it to anybody. I’ve heard a lot of parents talk about the grief that they feel for the life they won’t have with their child. Mine wasn’t grief, it was feeling that I needed to prepare myself, pick myself up, dust myself off, then think this is going to be different. I was then able to get him assessed and tell other people.

I accepted it quite quickly. I’m very pragmatic and I thought I am going to deal with this head on. There were so many times that me and the boys would go out somewhere and have to leave early because Joel was having a meltdown. I used to get really embarrassed and upset. By this time, he was nine and tall so I’d have to physically lift him over my shoulder and sometimes people would stare at Joel. I felt like asking them, ‘What is your problem?’ But then there would always be someone who would come over and say, ‘Can I help you?’ There wasn’t much they could do, but the offer was so lovely. It was difficult for me to get the point where I could think I’m not going to make any apologies for Joel. This is my son. I’m taking him out of here for his own safety, not yours and I don’t care what you think.

How have you and Joel adapted to his needs over the years?

When Joel was younger I didn’t look too far ahead to the future. One day at a time. There were some hilarious things, but there were also some really tense and anxious moments. Now it’s just a joy to be with him and it’s not hard work anymore. I still have to monitor him, there’s still a lot of things that need to be done, and I couldn’t leave him on his own. But he’s so much easier. Joel has surprised me every step of the way, so I’ve been fortunate.

Now we can do almost anything as a family with Joel but it’s taken years of repetition. I first met my new partner about eight years ago and he’s a very outdoor person who loves going walking in the hills but Joel used to run off. We almost had a helicopter out once to find him because he went missing. But we kept doing what we were doing until he learned not to go too far ahead and always to wait. Now we’ve climbed three Munros with Joel. He’s so fit and healthy and he’s in his element on walks. His love of the outdoors has reflected on the other two boys.

We can go out for a meal now too, albeit we tend to go to the same sort of places. If we go somewhere new, I’ll prepare him and he’ll always ask for a burger. Until recently, he’d get very upset if there was a baby crying but his school house parents had a baby last year and now just blanks it out. I think I subconsciously decided I wasn’t going to stop doing the things that I like, but try to expose Joel to things slowly. I wouldn’t put him through stress, but we just kept persevering with all sorts of things in a very slow but repetitive way. Now I can take him into almost any situation and he’ll soon tell me if he isn’t happy.

I persevered because I decided that Joel was going to have a really full and interesting life, and I wanted him to experience things. It’s the same at his school now. He learned to ride a bike last year at school and I went cycling with him for the first time this summer through a forest and it was such a lovely experience.

Are there things that you would have done differently?

I don’t think there’s anything I would have done differently with Joel. I didn’t read books about autism, it was all instinct. You feel like you should be doing all these things with your child, but actually you have to go at their pace. I learned that I couldn’t push Joel because he would very soon tell me that he wasn’t happy. I think the only thing I would do differently would be to have spent more time with the other two boys. When we would have to leave a party early I always felt their disappointment really deeply. They never complained, but I still feel guilty about that.

What has having Joel as a brother meant to your other two sons?

All kids are resilient but I think siblings of children with disabilities are even more so. Samuel has this inbuilt sense of responsibility. When he went to university, he phoned me every day for about two months asking how Joel was. I had to tell him that Joel is my responsibility not his. They’re so protective of their sibling.

I think my two other boys are very different to their contemporaries because of Joel. They’re very caring, very compassionate, and very protective of him. I have a really good relationship with the boys and we are very close. I think Joel has enabled that even more so than if he wasn’t there. My two have been through loads of stuff with Joel and they’re both very well rounded boys. We can’t imagine our lives without Joel. He’s enriched our lives in a way that has been amazing, and we wouldn’t change it.

You can find Fiona on Instagram here, and on Twitter here

A Parent Perspective: Interview with Anoushka

/ jess / Leave a comment

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Anoushka who has two sons, Spike and Oscar. Amongst the many interesting things Anoushka talks about is setting up Transport Sparks, a social group for young autistic transport enthusiasts.

How would you describe Spike?

Spike is 12. He’s very funny and charming with a good sense of the absurd. He’s quite a good negotiator – very skilled at getting us to add an extra leg to a journey, or more time on his devices. He loves going to the cinema, trains, hand dryers and adventuring around London. He’s also autistic and has ADHD (inattentive form), so he has some struggles with typical forms of social communication and he has sensory processing differences which can be a bit intense for him. He also has an amazing memory and a very interesting way of looking at the world.

When did you realise Spike wasn’t neurotypical?

From quite early on. He had a lot of trouble sleeping and feeding. He missed a few early milestones, he didn’t point or crawl. The books said all babies are fascinated by faces but he was not at all. Both my husband and I thought about autism before Spike was a year old. He started struggling in stay and play groups and while he started speaking at a year old, his language developed slowly. We went to see a GP when he was two, and had a diagnosis of autism by the time he was three.

How did you feel about the diagnosis at the time?

I felt like the possibility of autism had been rattling around in my brain for such a long time that it was a relief to have the question answered. There was an optimistic aspect to it because now we could get on with our lives. But it’s a challenging process to go through as a parent, to have to list the ways your child isn’t like other children, the difficulties they have.

Following the diagnosis, we were occupied with trying to set everything up – to apply for a statement of special educational needs, find a school, make sure that he was getting enough speech and language therapy, physio or OT. I didn’t feel too isolated but actually I hadn’t really come up for air and when I did I felt quite alone. I didn’t know anybody who had gone through anything similar and I didn’t really see other parents. At some point I found a very good group, mainly online, and we met up from time to time but it wasn’t really until I started meeting others through Spike’s special interests that I found lots more people who got it.

How was it having your second child?

I had reached a point where I had some mental space to think about another child. Although we were still in the process of getting Spike’s diagnosis, I’d reached a point of acceptance quite quickly and so if Oscar was going to be autistic that was fine, though I was alert to how he was developing. He was very different to Spike and him finding things easy felt weird and magical. He followed a more typical trajectory of milestones and it was a very different experience, a different delight. Oscar is now 9.

What were your expectations of what being a parent would be like?

I didn’t really have any idea what it would be like being a parent. My husband and I are slightly quirky only children and in some ways I expected to have slightly quirky children. I was excited to meet them and get to know them. I can remember having a picture in my mind of walking down the street with my child having a conversation. That took a long time to happen with Spike but I can remember the moment when it did happen and thinking, ‘Oh, we’re here.’ It was lovely to have that moment with Oscar, too and we reached it much more quickly than I expected! He’s a good talker.

How was school for Spike?

We had a relatively accommodating primary school and Spike had some good years, depending on the teacher. We had a lot of control over who worked with Spike so he was always really well supported. We were lucky that his year group were a wonderful bunch of children. Spike did a presentation to his class in year one about how things were for him and this helped his friends support him. It was always hard finding the balance between the academic focus in school and what we wanted to prioritise so Spike had time out of school. That’s a big reason why we asked the local authority for funding to home educate.

What’s your approach to home education?

Our starting point is always something he is interested in. We do project-based work and look for ways to bring in new information. We’re keeping our eye on the national curriculum and he’s a little behind his peers in some areas though he has some real strengths too. We work on Spike getting to know himself better, his communication, learning about the world and independence. We spend a lot of time out of the house because he loves travelling and learns well on his feet. He’s learning as much as he ever did, if not more. It’s a team effort with us, tutors and professional input.

In an ideal world I would like Spike to be at school but we can’t find the right place for him. There seems to be this idea that autistic children are either so-called ‘high functioning’ and can be integrated into a mainstream setting quite easily, or they have more substantial learning difficulties and higher support needs. I think a lot of autistic kids actually fall between those two. He needed more support than the mainstream schools could offer, but not at the expense of his education. It felt like we were being asked to choose.

How to do you talk to Spike about autism?

He knows he’s autistic, although we’re still refining his understanding of that. We’re introducing him to the idea that everybody has things they need support with and things they’re good at and he shares some strengths and weaknesses with the wider autistic community. It’s striking a balance between letting him know that if he’s struggling he can factor in the fact that he’s autistic, without saying that all the things he finds difficult are because he is autistic.

Could you talk a bit about Spike’s passions?

Spike always had things that he was very deeply interested in. It started with letters and numbers, then logos, idents. When he started liking the London Underground he had been quite anxious out of the home, and we saw that it was a way to broaden his horizons. He didn’t like the noise of trains but he also really wanted to be near them, and we wanted to help him work through this tension. It also gave us this shared experience of doing things together.

My husband and I usually take it in turns to go with Spike on a journey so we were spending every weekend going across London and it could be a bit lonely. I had heard that lots of autistic kids like trains but I couldn’t find any clubs. I tweeted saying, ‘Any other parents of autistic kids who like transport interested in getting together?’ and then I was inundated. I set up Transport Sparks – a social group for young autistic transport enthusiasts – about three years ago and it’s evolved into something brilliant.

When Spike meets up with a bunch of Transport Sparks they really connect with each other. They’re always so surprised that they have that meeting of minds and it’s also great for the parents to chat online and off.

Are there things that are challenging?

Spike’s anxiety permeates most aspects of his daily life and therefore our lives. That’s definitely more challenging for him than it is for us, but it’s difficult and affects the things we can do. We do a lot to try and mitigate it, but we can’t make it go away entirely. Spike does have some distressed or challenging behaviours from time to time. We’ve got better at supporting him and coping, ourselves, but it can be tough.

Has the way that you see the world changed since having Spike?

It’s a disgusting cliche, but I’m so much more empathetic than I used to be. I think it’s also made me feel more comfortable with uncertainty. I can’t see beyond a few months into the future, everything’s constantly under review, and that’s okay. It’s definitely made me more confident as a parent and self-reliant. There was a time early on when I thought the professionals had all the answers and now I realise that they are advisors and my husband and I know Spike best. We have to arrive at our own decisions. I hope I carried that forward with Oscar.

Are there things that Oscar finds difficult about having an autistic brother?

There are things which I don’t think he appreciates are, or could be perceived as, challenging – he doesn’t really see them that way. He’s found it more challenging as he’s got older. I’m starting to see that he finds it more difficult when, for example, Spike is very upset and he’s beginning to be concerned that he’s “adding to our problems” if he has difficulties. I have to be very clear that he can bring the good and the bad to us.

I noticed recently that Oscar was cross with himself for accidentally using negative language about autism and I felt bad that he was tying himself up in knots, but then also a little bit of me thought it was good that he was thinking about it and trying to choose his words carefully. I said as long as we think about our words, talk about them, we’ll be fine.

Is there a key thing you’ve learned about being a parent to Spike?

I remember a really clear moment of having a chat with someone in the playground and she asked, ‘What’s your son like?’ I gave her this terrible answer, like, ‘He struggles with this, he’s not very good at that.’ I burbled this all out at her and she didn’t really know what to say. It was a really clear moment of thinking that isn’t who Spike is to me. What am I saying? I’d adopted the language of the professionals. I thought I’m going to change the narrative and frame all of this differently, because it’s just not working for me.

I’m a rather self-conscious person and autism can be quite a loud, visible thing, but Spike has helped with that. He imitates transport noises and announcements when we’re out and if you’re feeling embarrassed or self-conscious about it, then other people pick up on that and everyone is tense. I’ve learned to just enjoy his enthusiasm and concentrate on him, and often people pick up on that positivity instead. Spike’s not particularly shy. He enjoys people and having conversations. We’ve ended up having so many more positive interactions with people than negative ones.

It took a while to unpack Spike’s way with words. He often uses scripting* and I would say 90% of that is meaningful – borrowed phrases used with intent. The rest is verbal stimming*, but even that is information. He’s letting me know he’s feeling a particular way. It’s all communication, if you’re paying attention.

You can find Anoushka here:

Blog: Spitting Yarn

Twitter @spittingyarn

Instagram: @spittingyarn

Transport Sparks Facebook group

*Definitions of some words:

Scripting is ‘the repetition of words, phrases, or sounds from other people’s speech.’

Stimming or self-stimulating behaviour ‘includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, or repetitive activities, speech or sounds.’

A Parent Perspective: Interview with Emma

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My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other parents with similar experiences. I am interviewing parents who are raising children who are not typical to discuss their thoughts and lives. This week it is with Emma Gardner.

Could you describe your family?

I have one child – Dotty. She is seven and she is disabled. Her dad and I are divorced although we’re great friends and still very much a team for her. I have a new partner, Adam and he has two children from his previous marriage.

What does Dotty love?

Since she was a baby her favourite thing has been eating. She is so motivated by food. She loves music, and responds to one to one play, in close proximity. She loves thumbing through books. She can’t read but she just loves turning pages and holding books.

How would you describe Dotty to people who don’t know her?

I describe her as disabled. I used to blurt that out nervously when she was younger and people would look at her adaptive pram. But now I confidently use it. I want her to feel proudly disabled and as a wheelchair user it’s more obvious now. Also her condition is complicated – it’s a rare, genetic condition that is fairly tough to explain.

When did you first realise that Dotty might not be a typical baby or child?

She was a very unhappy baby and we were in and out of hospital for the first few months. From around 18 months, we knew she wasn’t hitting the “typical milestones” but we thought she was probably chilling out after such a difficult start. We went to see a neurologist who had wanted to keep an eye on her following her early hospital stays, and we started to realise that she wasn’t doing a lot of things that were “expected”. She was diagnosed with her condition when she was two and a half after lots of tests. We kind of knew there was something going on, but when you get, ‘Here it is, this is exactly what it is, now off you go,’ you’re like, ‘Wow, what actually just happened?!’

The diagnosis wasn’t very clear about what it would mean for Dotty. There’s no pack explaining things. We were just told to speak to our health visitor, continue with the physio, do what we were doing and see how it went. At the time the internet was definitely not helpful, not least because genetic code and neurology are really tough to understand!

Some of the groups I found online took me to some dark places because I couldn’t see what the condition meant long term. I realise that the pre-conditioned views a lot of us have grown up with around disability clouded this period of time and it was easy to get stuck in a negative loop, focussed on what was wrong. But I knew I didn’t want to do that – I just wanted to move forward.

And now that she’s a bit older, how does Dotty’s disability impact her day to day life?

She needs one to one care. She goes to a specialist school and she has the most incredible team there – her teachers, assistants, physios. I love that it’s all now in one place now. Dotty needs help to do most things but she’s a determined soul. She’s really socially engaged and this past year she’s really developed her connection skills and emotional responses which has been wonderful, especially for me to see having spent so much time with her, working from home.

Are there things that you have been struck by being particularly different to what you expected of motherhood?

Motherhood was such a change, but also a magnifier on everything that was going on with me – my mental health, my lifestyle, my relationships, my career. My marriage broke down, I got divorced and everything changed. When it happened I was really worried that Dotty would be seen as the reason for that, or her disability would. But it wasn’t – there was stuff going on there with me before she came along. Having Dotty shone this intense light into a lot of that stuff that I needed to figure out which was pretty tough to manage but I’m thankful now. I’m happier, the people around Dotty are happier and I think ultimately that’s made her happier. I don’t know what I imagined motherhood to be like, but probably nothing like it is. I didn’t imagine unravelling and rebuilding myself for example. I wasn’t prepared for that.

I genuinely thought I was giving birth into a spreadsheet. I was that person, who made lists and assumed I had it all sorted. Arrogantly so.

I know some people get on brilliantly and becoming a mother doesn’t change anything for them, but for me it was hard and it changed everything. It’s still hard at times. But it’s also the best thing that’s ever happened to me, and I wouldn’t change how it’s played out at all. Otherwise I wouldn’t have Dotty or be the person I am now.

Do you think things could have been easier if the people or processes around you had been different?

Definitely. I think that’s still true, although people around you get more used to it. In the beginning, there’s a perception that it’s the worst thing that’s happened to you. So even when you’re getting on, trying to live your life, you’ve still got the pity of other people to manage. Nothing’s easy when you become a parent anyway, but navigating the medical model of disability I found so frustrating, because you’re questioned, it’s hard and there are so many barriers to getting help. I’m lucky enough to have had some incredible support and brilliant people around Dotty since she was a baby. But why isn’t it easier, particularly for people that need more help to access the support they have a right to?

Access (or lack thereof) to places and products can change where we go on a weekend and where we can hang out, particularly now that Dotty’s older. That frustrates me because it’s not really anything to do with Dotty or her needs. It’s the fact that there often isn’t any accommodation or thought for people like Dotty. Those are the things I try to challenge myself, but that can be exhausting and I have to pick my battles.

What do you wish you had to spend less time explaining or that people knew about your family?

I suppose it’s that we’re not sad. We really do believe that this is okay. When I say I wouldn’t change Dotty, I mean it. I’m not just saying it because I can’t. That can be a very polarising view, depending on who you are. For me, yes, things are different, but she’s ultimately the greatest kid. I don’t really want people to look at us as sad or even inspiring but instead as a great example of living with disability, living a happy, colourful life. I’ve found a huge passion in trying to find ways to help people see that, to try and find ways to showcase that to parents particularly…and anyone really.

What do you think helped you come to that view?

When Dotty was younger, I buried myself in work. My ex-husband stayed home with Dotty and I was quite detached. But I was processing by bringing disability into conversations in my workplace. Through that process I read a lot and met and made friends with disabled people, and that naturally changed my mind and educated me. I met disabled people who were unapologetically themselves, talented, wickedly funny, creative and innovative. That really helped me to understand that negativity comes from society’s view of disability which often isn’t the reality. Like the rest of us, disabled people are all different, and a lot of the time just trying to get on with their lives. I’m hyper aware that Dotty can’t tell me her views yet and may not be able to. As her mother and carer, I know her and we communicate in our own way. Outside of that, I take in as much information and perspectives as possible to make the best decisions for her. But, just because I know what the social model of disability is, doesn’t mean I’m done. You’ve always got to keep learning.

Did having a disabled child change your view of the world?

Yes, definitely. It’s been transformational for me. It has broadened my perspective and everything we’ve been through has made me so much more confident.

Now, I want things to be better for Dotty and people like her and I understand how to make that happen. it’s ignited something in me. I feel like I can talk about it and help people, particularly parents, get there more quickly. I just feel so different, and that’s because my whole life has changed in the last couple of years and having a disabled child has been an integral part of that.

I still have my moments. I’m nonstop, don’t sleep enough and I struggle with anxiety, but none of those things are because of Dotty’s disability. They’re more likely to be related to other people’s views of it or of us. Or not related at all and just part of the way I’m wired.

How have you found being a working parent with a disabled child?

When I had Dotty, I was on the board of the agency and had worked there a long time so, for the most part, I was able to carve out the flexibility I needed. Looking back, I was definitely in ‘work comes first’ mode for a long time, which was happening because I was unhappy and hadn’t worked through a lot of the things I have now.

Now I’ve set up my own business and have total control over how that works for Dotty & I. I think the pandemic made me realise that I don’t want to go back to the amount of time I was spending in an office, my priorities changed again and I’ve developed much stronger boundaries.

I would say that working is really tough, depending on the level of care you’ve got, pandemic or not. But I’ve always been somebody that likes to work and I’m excited about what I’m doing again. I think that’s ultimately how I’m going to make it work. It feels like Dotty’s part of it, if that makes sense?

I think there can be a lot of pressure on mothers of disabled child that they should be giving everything to their children. Have you felt the pressure to not work?

It’s something I struggled with a lot before I started my own business and I felt guilty about not giving up work to care full time for Dotty. But ultimately, I know myself. I know that I’ll be no good to Dotty if I don’t also do the things that I need to make me happy. That took me, is still taking me, some time to be at peace with. But I stand by it, and that guilt feeds the attitude that assumes the disabled child, and disability, are tragic and something to pity, and that the mum has to be there by the kid’s side 24/7. Actually Dotty loves school. I love her going to school. I need her to go to school. There’s a place for all of it – people do what they need to do for their situation. I’m privileged that I was able to start my own business and managing both is working for us right now. Everyone’s situation is very individual and that’s ok.

If you’d like to know more about the Medical and Social Models of Disability that Emma refers to there is more information here.

Emma is on Instagram: @ms_emma_gardner and Twitter: @ms_emma_gardner

A Parent Perspective: Interview with Rachel

/ jess / 1 Comment

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I am interested by how and when this happened. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently, but I was just doing my best with what I knew at the time. I think I would have found it helpful at the beginning to have read stories of other parents with similar experiences and so I am interviewing parents who are raising children who are not typical to discuss parenting, language and expectations. This week it is with Rachel Wright, who kindly met with me (virtually) to answer some questions.

Could you describe your family?

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

How would you describe your eldest son?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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