A Parent Perspective: Interview with Amy

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 Emma

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