Finding out your child has cerebral palsy can be the beginning of a difficult journey. Hopefully our previous article on the next steps after a diagnosis has provided a starting point from which you can find ways…Read more
Life with cerebral palsy: a Paralympian’s perspective
I am Sophia Warner. I have triplegic cerebral palsy affecting both of my legs and my left arm. I’m a Paralympic athlete and competed in the 200m from 1998 until I retired in 2013. I graduated with a medical engineering degree, and am married with two children. I now run my own business setting up sports events for people who have disabilities called The Superhero Series. I received a British Empire Medal in the New Year’s Honours List 2019 for voluntary service to disability sports.
When I was asked to write this for families impacted by cerebral palsy (CP), I started to think about what shaped me growing up. I realised it was my family that had the biggest impact. Looking back, I think my family had the best tactics for a child growing up with CP, so I hope that this will be helpful for you.
Dealing with a cerebral palsy diagnosis
My daughter was born 14 weeks prematurely, and I was told that the chances of her having CP were over 70%. I panicked and wondered how I would cope. It didn’t happen, but it made me realise that it’s easier to have a disability yourself than to watch someone you love with one. Now that I’m a mother, I can understand how hard it would have been for my family. I remember once catching my sister looking at me and crying, and I was really taken aback that she felt sympathy for me. I never felt that her life was better than mine.
Taking a ‘tough love’ approach
You might expect my parents to have been warm, fluffy and supportive. In fact, they were the exact opposite. When I look up ‘tough love’ in the dictionary, I actually expect to see my parents’ names.
“I can’t” wasn’t allowed, I never missed a hospital or physio appointment, and I was made to wear every splint, do every exercise and do everything that my brother and sister did. If I was a little slower doing it, that was fine, but I was taught to find a way to get it done. My parents often helped me find the solution, whether that was putting buckles on my shoes instead of laces, buying me thicker tights that I didn’t rip, or moving to live in a bungalow. I do remember thinking my parents were mean at the time, but we get on great now, and their approach worked.
Of course, at the time their ‘tough love’ approach made me miserable. It also caused some friction and arguments in the house. It was made harder by the fact that I was paired with another girl with CP who was given a much gentler approach. I didn’t appreciate how much my parents’ approach had helped me until much later, after I had gone on to achieve physical things that were beyond what anyone thought I was capable of. I can now look back and know for sure that they had the right idea.
My parents also had a strict house rule that there would be no physical fighting allowed. I probably wouldn’t have fared well in a fight, and it was stipulated that if I couldn’t participate, then no one could. My siblings and I were always treated equally. That was important.
My childhood was great. Although I did have lots of physio and surgery and I missed out on things. I wore a corset, a raised shoe and callipers, all of which I hated. I felt really self-conscious and it knocked my confidence as I got older. Fortunately, my parents decided that I didn’t have to wear them when I started secondary school to give me half a chance of not being bullied. I did get some bullying anyway, but not as you would imagine. And my parents never stepped in. I was taught to ignore it, which obviously you can’t, but it passed nonetheless. My parents pointed out that it happened to everyone and that my disability meant it was just a bit easier for the bully to choose the topic. I remember a hilarious conversation with my dad when I came home crying after being bullied for having a big nose and my dad just told me that I “should take that”.
With a little help from my friends
I was lucky in that I had strong female friendships and I stayed with those friends throughout my teens, twenties and even now. I’m glad I didn’t move around growing up, as having those foundations in place made it easier for me, and I didn’t have to explain myself to new people.
The worst years were my teens. I was really self-conscious and wanted to be like everyone else, especially when it came to the shoes that I could wear. I used to sneak shoes into my school bag and then change them on the bus just so that I looked like all of my friends. The teen years are hard for everyone, of course, and the insecurities of being disabled made it harder.
I remember worrying that I would never have a boyfriend. Going away to university was challenging as I had to do things for myself, tackle stairs in a shared house and explain to new people why I walked strangely. It hadn’t been a factor until this point. In the beginning, I was anxious about meeting new people, but I overcame this, and I had the best time of my life!
Conversations about cerebral palsy
It took me a long time to work out how to describe my disability to people. I’ve come to realise that people can only work it out if you make it something that they can relate to. I always say that I have brain damage, and that my arm and legs are fine – it’s just the connection. I explain that if I stuck my limbs onto their bodies, then they would work. I explain that it’s just like a stroke but at a young age. People seem to understand this.
Sport wins out
I always loved sport. I went to a mainstream school and I wasn’t encouraged or helped at all when it came to sports. I was often excluded, but we didn’t think it was strange because that was how it was in the ‘70s.
My parents always took me out cycling with my siblings and on long walks, and I later got into running with my brother who was great at cross country. I was talent spotted running a 10km race, but when I told my parents that I wanted to join a disability sports group, they didn’t understand. They wanted me to remain among non-disabled sports people. Their approach probably helped me in a way, but I would advise against this. I do wish that I had met other people who were like me early on. I may have understood it all a bit better – disability sports as well as my condition – and I would’ve started competing at an earlier age.
I remember an epiphany when I was in my 20’s and away on a Paralympic camp with two other CP girls. When we brushed our teeth, each of our bad arms involuntarily went up in the air. Until that moment, I had been battling to keep mine down. I wish I’d known it happened to other people, because I now find it funny. It was a huge relief to find out I wasn’t the only one it happened to, and I think that this was the stage when I started to read a lot about my disability. Learning more about it was reassuring too. It’s such a great feeling when you come to realise that there isn’t anything that you can do about it. It’s just your version of ‘normal’.
Cerebral palsy treatment options
In terms of equipment, I can’t really think of anything that helped. Even the gadgets that they say work for people with one hand need two hands to set them up! In terms of technology, I’d recommend getting good home insurance. I’ve broken a phone in the process of putting it into a protective cover, and everything gets dropped – a lot! I hate typing but hate voice recognition even more, and I’ve learnt to adapt. Plus, I got extra time in all my exams, which I think helped my grades!
I was told for years that swimming would help me, and I’ve only recently started. It is brilliant, and it really reduces my spasticity. You have to find a warm pool, although I usually catch a cold getting changed because that part takes so long!
I avoid medication that removes my tension because I’d rather be twitchy than asleep. I have had Botox a couple of times and it’s amazing, but it also messed up my posture a bit. There are pros and cons to all treatment options, but don’t assume the best treatment is to remove the spasticity. In fact, I’ve found that it’s key to my wellbeing. Take it out and something else seems to give.
Looking back, some of my biggest highs and lows include:
- Being stared at – I hate it!
- People asking stupid questions like “Is it contagious?” My favourite has to be: “Is your husband disabled?”
- Breaking lots of things
- Not being able to open things
- Getting frustrated
- Extra time in exams – it just gave me better grades!
- I’ve had more opportunities – TV presenting, Paralympics etc.
- I changed a lot less nappies
- I always get an interview if I apply for a job
- I never have to go to the bar
- I’m tougher than most
- It’s given me a very positive and empathetic outlook on life
Now that I’m older, I feel very differently about my disability. I was brought up to ignore it or even deny it was even happening, and now it’s a part of who I am. London 2012 defined me as a disabled person for the very first time. I had never actually been one before that. I’m now proud of who I am and what I have achieved, and I’m very comfortable announcing it and telling people I have CP. This is a new thing for me, and I wish I’d been like this when I was younger. I do think society makes it more possible now, and easier to talk about these kinds of issues.
By Sophia Warner, Paralympian and Vice-President of The Children’s Trust