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 Parent Perspective: Interview with Jenn

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