Month: February 2021

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.

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A Parent Perspective: Interview with Penny

/ jess / Leave a 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 Penny Wincer, who managed to fit in a call with me to answer some questions.

Could you describe your family?

I’ve got two children. Arthur is 11 and Agnes is eight, almost nine. We live in South London though I’m originally from Australia and I’m a single parent, though I have a boyfriend who doesn’t live with us. 

How would you describe Arthur? 

Arthur is autistic and he has learning difficulties. He can speak but his speech is not typical. He’s a really happy kid but when he’s not really happy, he’s quite unhappy. There’s quite a roller coaster of emotions, which are quite extreme, so it’s never boring!

What does Arthur love doing? 

He loves anything really stimulating like fireworks, trampolines, funfairs and bright lights. He loves sand, the beach, water and waves. I gave him some helium balloons this morning and they make him so happy. He also really likes cuddles, wrestling, hide and seek and chasing.

When did you realise that Arthur was maybe different to other children that you knew, or to typical children?

At around 18 months old it became obvious that he wasn’t quite in the same place as his peers. I wasn’t concerned at first, but he started having really serious meltdowns which seemed more intense than other kids. He was always happy or sad and there wasn’t much inbetween. 

When he was around two my daughter was born and he reacted really badly. He either ignored her or got really upset when she made a noise. That was when I thought there’s something different here. I spoke to the health visitor at first and because I wasn’t that concerned, she wasn’t either. Arthur’s eye contact with me was really good and I hadn’t realised that he’d stopped doing many of the things he’d done when he was younger like turning round when someone unfamiliar called his name.

I asked for a referral and did a lot of research. In the first appointment with a developmental paediatrician, when Arthur had just turned three, she asked us what we thought and Arthur’s dad and I both said, ‘we think he’s autistic’. She said it was too early to confirm, but agreed it was likely to be the diagnosis eventually. We were expecting it so we weren’t shocked, or even that upset, when it happened.

We were first time parents so we didn’t have other children to compare him to, but seeing the developmental reports in black and white was really hard. I’d had no concerns about Arthur in his first year but I can look back and see he was a bit different. By six to nine months old, Agnes was doing things that Arthur couldn’t do, like waving, and it was a real shock. 

When he was diagnosed we thought we’d get some help but really nothing was forthcoming and that was disappointing. We had to start the long process of a statement of special educational need (now Education, Health and Care Plan) when he was three and a half, and he then went to a mainstream school with one-to-one support. He did three years there which he didn’t hate it but he wasn’t thriving. He needed specialist teachers and a low stimulation environment, so he then moved to a specialist school and it is absolutely amazing. I feel so much more supported as a parent. 

Can you talk a little bit about how Arthur’s disability, if you would use the word disability, affects his day to day life, and your family?

I do refer to his disability unless I need to describe his needs specifically, and then I might say autistic. Sometimes I prefer ‘disabled’ because not everyone needs to know his needs all the time. Sometimes they just need to know he has accessibility needs. I don’t shy away from the word ‘disabled’ because I want my son to be comfortable with it, and I want the people around him to be comfortable with it. It’s a fact. 

Arthur is incredibly rigid and struggles to process information if things are not the same all the time. That means that we have really fixed ways of doing things and if there are any changes it can be quite traumatic (and I don’t use that word lightly). Now he can use language he becomes fixated on and repeats things. He’s generally an anxious child and he finds the world quite scary, and that means him repetitively asking to do the same thing over and over again, to hear the same answer and to understand. Keeping him in routine is really important because then he’s less anxious and more able to engage in the world a bit. He needs a lot of sensory stimulation – lots of physical activity, jumping, wrestling, running. If he gets enough of that, then he’s calmer.

He can use concrete language, so he can point things out to me and ask for some things. But he can’t really use abstract language to tell me how he feels or about something that happened previously or in the future. The way he uses speech is not typical but it’s improving all the time. Speaking is so useful for him but people don’t understand that it doesn’t make him less autistic. It’s still really hard for him to get his needs across. He’s started echolalic speech, so copying things, especially from TV. He’ll be just scripting to himself and he’ll say what seems like nonsense to everybody else over and over again, but then he’ll learn to use it in context. The first time he called me Mama was when he was about four and a half and he learned it from the film of The Gruffalo. 

He doesn’t have friends in the typical sense but he connects really well with other adults and is a very good judge of character. When he was really little that concerned me but now I know he can connect with adults and he will be an adult, so he will have friends who are peers eventually.  

In what ways is your life how you expected? And in what ways is it different?

It’s so different to how I expected. One of the biggest things is that I’m Australian and Arthur can’t fly so he hasn’t been to Australia since he was one. It’s been a really big deal that I’ve had to get my head around. I go on my own, occasionally, and I will take my daughter eventually, but it’s complicated. It would be wonderful if the kids could know their extended family.

I never expected I would be in a situation where I’m so reliant on the outside world and how precarious that feels. For example, I’m dependent on the local authority for Arthur’s school, transport to school, holiday club, and that dictates how and when I can work. I never expected that my choices would be restricted like that. At any moment, something can change (particularly in the last nine months) and I’ll have to completely reshuffle my life to replace whatever has gone or changed. It’s one of the things that I find most challenging. It’s quite hard to explain to people the lack of control and the lack of options that I have with a disabled child.

I think the difference between being a parent of a typical kid and being a parent of a child with a disability is it’s not better or worse, but we might need more – more rest, more breaks, more help. It’s all fine and manageable when I get the extra help I need and the extra rest I need. I don’t wish it away. It’s just different. But when you have all that taken away, suddenly you realise just how quickly you’re hanging by a thread. I need help and rest to be a together human, a good parent, friend or girlfriend. I think that’s true for everybody, I just think it’s a bit more extreme for those of us with kids who need a bit more from us. 

But I think it’s as good as I expected it would be. It’s also way more challenging than I expected, but I think most parents would say that. Parenting is more emotionally extreme than I expected. I thought it would be a bit more calm and stable. I’ve coped with way more than I thought I would. I have a life that I love. I have moments where I’m definitely not coping, especially this year, but generally I have a really lovely life. 

How has your parenting and your approach, particularly to Arthur but maybe to both your children, changed over time?

I think when he was first diagnosed, I was in a panic about how much support he needed and how quickly he needed it. Everything I read was about early intervention but nothing was being provided. I went looking for play therapists, paying for private occupational therapy. I changed his diet. I was stressed out to my eyeballs becoming an expert. And thank god I chilled out because it was completely unsustainable. Eventually I calmed down and realised I can’t control this. I accepted that we’re never going to get the right amount of support, and we’ll just do our best with what we can, which is not easy. The thing that scared me so much when Arthur was three or four was the fear that I would be the reason he didn’t thrive. That it would be my fault because I chose the wrong therapy. You can completely twist yourself in knots about that kind of stuff. Every now and then I have a flash that I’m doing the wrong thing but I don’t dwell on it the same way. I have accepted that his disability is out of my control and I just have to do my best and I can’t do anything else. 

How has being Arthur’s parent over the last eleven years changed you?

I see the world completely differently. I didn’t used to think I was a judgmental parent or person but I’ve had every bit of ego stripped away from me as a parent. I realised how little control I had over my life and I think that’s been an incredible experience which I’m grateful that I’ve had. Society was telling me that as a mother, it’s all my fault if he doesn’t thrive. And actually I’ve learned that isn’t true. You don’t have control over everything, and that kind of takes your judgement out of it. I look at families who are struggling now and I see a million reasons why that might be happening. 

I used to be very eco conscious to the point where I never used to drive my car, everything was on foot. The kids were in cloth nappies. Then I realised that a lot of those choices were taken away with Arthur’s disability. Like he only eats one kind yoghurt (one of only four foods he eats) and it’s in a tiny plastic pot. I’ve just got to buy the plastic pots. And now I need to use the car far more, to keep Arthur safe and for us to be able to function as a family. So I’ve had to let go of judgement around how other people make those choices, and that’s been incredible. 

Find Penny on Instagram and Twitter @pennywincer