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

Fear

Ben has a phobia of dogs. Or at least, we first noticed that he was scared of dogs. Then we found it was also cats, then foxes, and guinea pigs. And chinchillas.

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For a boy who has very limited communication, Ben found a very effective way to express his disquiet upon seeing these animals (or, as time went on, pictures of them): by gagging or sometimes actually being sick. Maybe the whole thing started because he happened to be sick when a dog was around, so the two became conflated in his mind and seeing a dog triggered vomiting. Who knows – Ben can’t tell us.

Either way, it started last summer and got progressively worse. At the beginning Ben would gag when we saw dogs in the park. Then he gagged at some dogs in TV programmes, sometimes being sick. Then it grew to include drawings in books, or dog-like bears, or cats. And plastic toys of animals. And TV adverts for plastic toys of animals. We sent the ’12 Dogs of Christmas’ DVD which someone gave him as an unfortunate but well-meaning present to the charity shop.

We get worried about Ben being sick for a whole number of reasons. Nutrition: because he needs all the calories he can get. Safety: because he chokes easily. Health: because he is prone to chest infections and repeated vomiting could lead to aspiration (breathing in stuff which doesn’t belong in lungs). And mess: because he tends to be sick on his chair or carpets which is a pain to deal with.

We got to the point where we would avoid or switch off TV programmes or books that had characters that triggered a reaction. One morning, a rogue TV show slipped through and Ben was so sick that we had to let the bus go and I drove him to school once we’d washed and changed him. He was unable to engage at all with the mobile petting zoo when it visited his school without gagging. He started gagging when we told stories about him gagging earlier in the day when he saw a dog. So much gagging.

It was having a significant negative effect on our day-to-day lives and we were wondering how to get some help. By coincidence, we saw a hospital psychologist about something unrelated and she arranged a course of therapy for Ben at the hospital with a trainee psychologist. We were very lucky to be offered this – the difficulty of access to Child and Adolescent Mental Health Services is well documented and I doubt we would have got such personalised treatment as quickly or easily if we had waited for a referral.

We have just finished a block of sessions where we worked with the psychologist to draw up a hierarchy of Ben’s fears – with talking about dogs with him in earshot at the bottom, through to him stroking an actual dog at the top. We figured that we’d focus on dogs and hope the chinchilla fear abated as a result.

Already, Ben has clearly demonstrated that he can learn to manage his anxiety – stories and pictures which made him gag the first time he heard or saw them are okay after a few weeks. We still have a way to go but are seeing real progress. I inadvertently tested this in our local shop last week. I went to get some milk and when I came back Ben was gagging for no apparent reason. Then I noticed I had left him directly opposite a card rack which featured literally nothing but photos of dogs! A few months ago he probably would have been sick, but this time we talked about it, and he recovered really quickly. You wouldn’t believe how many dog images there are in the world once you start looking for them.

It’s not going to be linear progress; Ben is now okay with the cat that visits our garden, but gags when we read him a new story about a dog. But we can now envisage a time when we can go for walks in the park without being on high alert. We’re currently on holiday and have been to a farm park* where Ben happily saw and fed goats, sheep, horses and turkeys. This is huge progress compared to our visit to a Miniature Pony Sanctuary this time last year which Ben DID NOT LIKE.

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What the therapy has made clear is that it is us adults who need to change our attitude as much as Ben. By immediately turning off offending TV programmes, or generally panicking at the first sign of Ben being sick, we were confirming to Ben that there was definitely something to worry about: these dogs must indeed be truly terrifying if all the grown-ups are so keen to get rid of them. We did all of these things for good reasons – it’s entirely justified to want to avoid Ben vomiting – but we were ultimately making things even worse and have had to retrain ourselves in how we respond. We also have to try to re-educate Max, who has become so attuned to the problem that he shouts ‘DOG, DOG’ at the first sign of a canine, which isn’t hugely helping.

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As with so much of parenting, it’s all about being calm and consistent, about forcing oneself to demonstrate to your kids that everything’s going to be okay even though they are scared. We have to risk Ben being sick. We can’t carry on visiting people’s houses, finding out as they open the door that they have a dog, and introducing ourselves by Ben threatening to vomit on their 100% wool rug.

When going through this process, we also have to bear in mind Ben’s consent. On the one hand, we are trying to improve Ben’s quality of life by helping him overcome the feelings of anxiety he gets when he sees or hears dogs (or cats, guinea pigs, bears…). But it’s perfectly reasonable for him to not like dogs. We have to respect his right to really not want to look at pictures of dogs for fun, or to be able to say ‘No’ if he’s terrified. Max hates lawnmowers – we don’t make him stand around next to men mowing lawns.

We are treading a narrow and tricky path between pushing Ben’s comfort zone a bit, while respecting his right to move at his own pace. Ultimately, he should be able to express a dislike of dogs, or anything else, and have that view acknowledged. We would just like him to be able to express his dislikes like he does with other things he hates – by whinging, or sticking out his bottom lip, or loudly protesting – rather than puking all over us all.

* We went to the Cotswold Farm Park which was brilliant – easily accessible for wheelchairs, loads for both boys to do, and Ben particularly loved their maze. Unlike the Model Village in Bourton-on-the-Water which lets in those ‘confined’ to wheelchairs for free because they can’t actually get to any of the model village. Which would be sort of okay if they didn’t charge the rest of your family full price and be insulting and grumpy about the whole thing.