A Parent Perspective: Interview with Jo

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 Sibling Perspective: Interview with Fiona

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 – usually A Parent Perspective, but this time A Sibling Perspective – with Fiona, who lives with her disabled brother, Ewan. I found it so interesting to hear her thoughts about growing up with her brother.



Could you describe your family?

My mum and dad have three children – I’m the oldest, then my sister, Kirsty, then Ewan who is three years younger than me and is disabled. We grew up in Sussex and then moved to Scotland when Ewan left school to a house that is designed around Ewan’s needs. Ewan and I have always been incredibly close. My parents were Ewan’s carers but they’re not getting any younger and I wanted to be involved so now I am his main carer. My parents, Ewan, my husband Dom and I all live together which means there’s a lot of bickering because we all have strong opinions! But it works well for Ewan because he has me and my husband around and we can go out and do things very naturally. We do have paid carers as well.

Could describe Ewan and what he likes doing?

Ewan’s very cheeky. He loves to entertain us by doing something daft or mischievous. We both work at a candle shop, which is a social enterprise designed for people with disabilities. He and I are joint workshop leaders which I think Ewan really enjoys. We’re lucky to have met a nice group of friends, both with and without disabilities, and we go out – evenings at the pub, lunches, an art class. Ewan’s quite social and loves spending time with my husband, Dom.

Ewan is 36. We describe him as being disabled – having a learning disability. He needs a lot of support though he can do lots himself. He uses a wheelchair and doesn’t speak but he has fantastic communication. Ewan uses Makaton sign language, or at least his version of it! He also has some vocalisations – he’ll make sounds for yes, no, and some names that we recognise. He can get anxious in some situations and find them challenging.

How does Ewan’s disability affect his day to day life? What are the things that you, as a family, plan around?

At home he’s just Ewan. If we’re planning a day out sometimes it can be difficult to know what we’ll be able to do, what he’ll find interesting, whether we’ll be able to get in the building, whether there will be a Changing Place. From his point of view, his anxiety affects him. If Ewan’s worried or excited about something he has a lot of spasms in his arm, and that can cause pain.

Do you remember as a child realising that Ewan was different to you and your sister?

We didn’t know when Ewan born that he was disabled. Because he’s the youngest I think my mum realised that he wasn’t doing things that my sister and I had done. I remember being told that Ewan was blind and ‘handicapped’ (as it was in those days), and then he didn’t learn to walk and talk. He was obviously different but I don’t remember it really being much of an issue. I’ve always been very close to Ewan and I’m very proud of him, so people would get told about him all the time! I’ve never experienced anything negative about him being my brother.

To say that my parents weren’t fazed by it sounds ridiculous, but that’s the way it came across. Obviously he needed different things, different care, but it was always more of a practical thing, and mum and dad were very aware of trying to treat us all the same.

Did you choose to be Ewan’s carer?

Yes, I chose it because I feel that it works. It doesn’t really feel like I’m his carer except for the obvious things where we help him physically. It’s just our relationship and it’s fun. The hardest thing for me is stepping back and entrusting somebody else with the role because it can be difficult for other people to know how much independence to give Ewan, for example, and they can be tempted to make a choice for on his behalf or perhaps take over an activity.

Was there a natural progression over time as you took over from your parents?

When my husband and I moved to Scotland we allocated which days each of us would do Ewan’s care and I always wanted more days so we could go and do fun things. Now I support Ewan Monday to Friday and my parents do it at the weekends, though since we live with each other there’s overlap.

My parents know a lot more than I do about Ewan’s medical history and so they are more involved with that side of his care. Ewan used to have more health worries but thankfully since his epilepsy has been under control he’s been better. I am starting to take him to important hospital appointments on my own.

As a familywe bicker a lot, but not over Ewan’s care. I say I don’t want other people worrying about us because of Ewan, but I was worried about my parents and whether they were coping with all the care that they were doing before we moved up here. And now, they worry about me. I think that’s what families do!

What has worked particularly well for Ewan at particular stages of his life?

From the age of six he went to a brilliant school in Sussex. The whole school was geared towards their students, all of whom had very complex disabilities. They did everything, like scout camp for example. Ewan had the opportunity to do so many things, learned loads, and he enjoyed it. He’s not really had the same opportunities since he left school because not everywhere has the facilities.

When we moved to Scotland there were a few disabled children just leaving the high school and there was nothing here aimed at people with disabilities, which is why things like the candle shop came about. I’m talking on Ewan’s behalf here, but I think we’ve been really lucky. It feels like we’ve been in the right place at the right time.

Are there things that have been particularly challenging either for him, or for you as a family?

Ewan does always seem to be quite happy and he doesn’t seem to worry if he can’t do something. I think we lived in a bit of a false sense of security for a long time, thinking that he had everything he needed at home. It’s only since finding the first Changing Places toilet that the penny dropped for me, and I wondered why we were only just discovering them. Noticing how inaccessible places are makes me angry and frustrated. I think we’ve been incredibly lucky compared to many other people, in terms of support and services. We have been in the right place at the right time.

I think that no one talks about the benefits of having a disabled sibling…

I agree, or they do but it’s that ‘inspiring’ thing. I guess it’s hard to appreciate unless it is your experience. I know friends who have had harder times that us – we’re very lucky that Ewan’s health is good. If he didn’t sleep or needed a lot of medical attention our experiences would be different. I feel like we’re very lucky. Sometimes I don’t understand how other people don’t get it and don’t see the world like I do, and then I remember that they’re not all as fortunate as I am.

Do you have any advice for other siblings or for parents of disabled children or adults?

I’m not really in a position to give advice, but perhaps it would be: don’t compare. I’m not a parent but I think we’re all individuals. We’re all going to be the people that we’re meant to be, irrespective of disability. You can’t possibly compare one person to another, or the speed at which they’re doing something. I think my parents knew Ewan was going to be different so didn’t compare or worry about milestones.

I’ve spoken to my mum about it and she was upset when she first heard Ewan’s diagnosis but that’s the only sad thing I’ve ever heard. I sometimes feel like families are beating themselves up for not doing enough therapy with their children, that they think they’re not doing the best by their child, and that’s quite hard to watch. I think what will be will be.

You can find Fiona on Instagram @ewieandfi and on Twitter @fmmchiarini