Living with cerebral palsy – Kayleigh’s story (part two)

Kayleigh And Eleanor

In part two of Kayleigh's story she describes life with cerebral palsy and shares her advice for parents of a child with disabilities.

This is the second and final part of Kayleigh's story. Read part one.

One thing to bear in mind when researching cerebral palsy (CP) is there are many types of the condition and no two people are the same. I have met so many others with CP and while some of us may share similarities we are completely different.

Much of my condition has affected my legs, meaning I am unable to walk, though I can weight bear just enough to transfer from my wheelchair to a chair. I also have weak hands leaving me with no fine motor movement; this means buttons, zips and shoelaces are an impossible task for me. Additionally, I can only write for a short period of time before I have to take a break; you can always tell when I am getting tired because of how my handwriting changes.

Spasms are another very common side effect of CP and I am no exception. My spasms are often triggered by my emotions or fatigue, I would say excitement is the worst - last year Mum and I went to see Phantom of the Opera in London and I was so excited that when the overture started my entire body started to shake; and don’t get me started on the first time I went to Disney World! I also jump at loud noises, so don’t watch a scary movie with me as you would be watching the majority of it with the sound turned down or a cup of tea in your lap.

I am lucky because I am able to control my spasms to a certain extent and at present do not take any medication; however, the times when I have a bad spasm I do have to rest and just let it run its course.

If you know anyone with CP, then you may have noticed that we get tired very easily. Fatigue again comes with the territory where the simplest task for a “normal” person would be like running a marathon for someone with CP.

Though medical professionals will diagnose us and put labels on our heads it is important to remember that CP actually affects the whole body in some way, not just the area the diagnosis points out and not all of these effects are noticeable but they are there.

Interestingly, CP can also sometimes change. For example, up to the age of 13 I used a K-walker, a type of walking frame that supports and encases you from behind, rather than you pushing it in front of you. During this time period I had regular physio therapy and hydro therapy to attempt to strengthen my legs. I wore callipers and splints (AFOs) which are a nightmare in hot weather; I even had my legs put in plaster at different six weekly intervals to try and strengthen my legs.

One of the most horrific things they wanted to do was perform an operation whereby they would break both my legs, stretch my tendons and put me back together again. For a long time, my parents and I had to travel to a specialist hospital so tests could be run to see if I would benefit from the operation. I used to come home with so much black marker pen on me that I would get straight in the bath to wash it off. After the tests were finally complete it was decided that I would not benefit from the operation as it could make my condition worse and if the surgeon made a mistake I could have been left with “floppy foot,” not to mention two large life-long scars down the back of my legs. Looking back years later we are all glad I did not have the operation.

At the age of 13 as I got taller, gravity took over and it was getting more difficult to use my walker. It was decided that I needed to use a wheelchair full time and that to enable me to have my full independence it should be electrically powered. Now, some people would see an electric wheelchair as giving up but I didn’t, at the time I was in a lot of pain and self-propelling my manual wheelchair was too tiring due to my poor upper body strength. I have since had two electric wheelchairs and I couldn’t be without it. I am proud of my wheelchair - it is part of me.

Apart from the visits to and from the physiotherapist and occupational therapist I had a normal and happy childhood. I went to mainstream school throughout my whole education; I went to horse riding club and Brownie Guides and have even abseiled and went potholing as part of a school activity week.

The one thing my mum and dad have always made sure I did was travel and over the years we have visited some amazing places from America to Paris. True, there were a few challenges along the way, such as the accessibility of some areas and sitting for hours in the travel agents to ensure they understood my needs and correctly communicated to the airline why I needed the extra leg room. I won’t go into the issues of travel when you have a disability; there are plenty of blogs and news reports highlighting that. What I will say is in my opinion the best places for disabled access are America and Canada, they have things in place I wish we had here in the UK. I will always be grateful to my mum and dad for helping me see the world. My ambition now is to visit Australia and New Zealand.

One of the biggest challenges I faced both at primary and secondary school was people’s understanding of my disability. Although I was given a classroom assistant to help me get from A to B safely and take notes when I was tired, I always felt that she was the only one who really understood me. Unfortunately, the majority of my teachers were not so understanding as they had trouble with the fact that it took me longer to do things or that sometimes I was so fatigued I would go quiet, maybe they thought I was not paying attention. I think I can only name four or five teachers who had the patience to see my full potential.

I remember several occasions where I would come home upset because teachers had put me down or my classmates had bullied me because they thought I was getting special attention. The final straw came in my GCSE year when the school held a parents evening to review everyone’s progress. My parents were basically told I was “useless” and it was unlikely I would get any GCSEs and I may as well just go and do a training course in child care; not the most practical of career choices when you have a disability.

I eventually left school with eight GCSEs and that opened the door to college. They say your school years are the best years of your life, but for me it was college. College is where I became truly independent. I studied travel and tourism and loved every single moment; my lecturers were some of the best people I have ever met and were always understanding and encouraging. Also, this was the first time I would hand a piece of work in and people would say “yes Kayleigh” instead of “no Kayleigh.”

My college course lasted two years. Towards the end of the two years my head lecturer took me to one side and asked me what I would like to do. I explained I would like to go to university and she then told me that there was an opportunity to study the first two years of my degree at the college through a foundation degree programme. She told me this would be a good step for me because I would be in the security of the college environment where everyone knew me and I would have more freedom, so that’s what I did.

Studying for my foundation degree was great, not to mention I was assessed by the university who gave me all the equipment I needed, including a voice recorder to record my classes so I didn’t have to write lots of notes. For the first time I was independent with no classroom assistant, just some good friends who helped me when I needed it. I graduated at the highest level.

After my foundation degree I moved to the university, which was scary and exciting at the same time. As the size and pace of uni is much greater it was decided that I once again needed extra support from a classroom assistant, however, they did not stay with me for the full day so I still kept my independence. The work was sometimes stressful but I loved it and because much of the final grade is judged on coursework, exams were easier to cope with. I graduated the following September with a 2:1 and decided to stay on and complete a Master’s degree in Marketing.

The day after my final exam I received a phone call from the charity Livability offering me a job. I gladly accepted a position on their internship program, which I did for a year before being offered a full time role in Service User Engagement. I have worked for Livability for six years now and I still love it.

I met my partner Jon in 2012, we began chatting online as friends and then were eventually able to meet. Not long after that he moved from his home in Norfolk to Plymouth to be with me. We have been together for five years, I know it is a cliché to say it but he is “my rock.”

By Christmas 2015 I achieved my biggest step to independence when Jon and I bought our first house together. That in itself came with its own challenges as there are not many homes that are kitted out for people in wheelchairs. The local council couldn’t help us because unfortunately we did not meet the requirements, so we were left with no alternative but to house hunt ourselves and find somewhere we could adapt. We finally found a lovely new build property which had all the space we needed with flat access and wide doors; plus, we were able to arrange for someone to fit a wet room and stair lift in for me.

We have lived happily in our lovely house for almost two years now and in May 2017 we found out we were heading for the next exciting chapter in our lives when we discovered we are expecting our first child. Eleanor arrived via natural delivery in January and she is perfect.

People often ask me what I would say to parents who discover their baby has a disability like CP. I would tell them not to be afraid, sometimes the diagnosis sounds worse than it is as many children who have a condition like CP go on to lead happy and healthy lives.

Also, do your research, read up about the condition and what the child and you as parents are entitled to with regards to physical and financial support. Try not to get too caught up in the medical jargon as every child is different and no one knows what that child can do better than them and you.

Another thing I would advise is not to wrap the child up in cotton wool - I know that’s easier said than done - because by doing this you could be unintentionally preventing your child from discovering their own independence. Independence comes in all shapes and sizes and just the slightest thing is a big step, so if your child does have the more severe form of CP things like holding a cloth - which can also be done with support - and wiping the table after breakfast or holding the washing basket while you take the clothes in the washing machine is a great way of involving them and teaching them new life skills.

When all is said and done there is no right or wrong way when it comes to disability, often the child just needs to discover their own way and if you love them and support them you will see them achieve huge milestones of their own. Yes it will be scary and sometimes difficult but, like me, we all find our way in life in the end.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages