Growing Up with Cerebral Palsy reflections at 38

Young I did not really understand my Diplegia Cerebral Palsy diagnosis. Between the ages of 5 and 19 I had an educational statement of special needs and while this helped me with practical issues in the classroom as it gave me in class adult support. The presence of learning support always sitting and working with me including when others were working in groups with each other isolated me as much as I was often fond of my support and upset when they would leave. I understood my Cerebral Palsy made my muscles stiff and heavy, that my balance and coordination was poor and I had frequent falls. I found navigating a large school with a heavy school bag because I could not use a padlock and was to embarrassed or stubborn to explain exhausting and coming home to homework and physio was a battle as were night splints  when I had trouble  sleeping.I had serve Hyperhidrosis that meant I looked like I was having a constant anxiety attack when I was not. I could get through whole days not talking to my peers I had a few issues with bullying but the students did not really know me.

My confused self perception lead to low self esteem and negative emotions that were more exhausting than the Cerebral Palsy. I hated the limited perception of my abilities some had. I recall a careers advisor coming to the school and talking to me about ‘special qualifications’. It brought back memories of years earlier at primary school myself and my parents being told not to worry as I would get a job in Tesco’s stacking the shelf’s and the teacher felt she had given us a complement. I recall telling her I wanted to be a teacher or a writer but she told me to rethink, I was only about 7!

I had always been resistant to the idea of ‘disability only’ options but when I was open to them I learnt I did have some great opportunities due to my disability, the Riding for the Disabled meant I got to ride in Windsor Great Park, also got to do a musical ride and met royalty! I got to do some carriage driving I enjoyed.

I did have a few friends, the one I spent most my time with was older than me in a different year group. But spent a lot of time with adult support or alone. I hated being stared at, hated some of the bizarre questions I got and did not always no who to direct questions to and often not sure of their answers being reliable. I did not always do the same lessons, like I did not do languages which I regret. I did do sport which I did not enjoy, some activities like cross country were difficult and left me exhausted! I did not want to be different though.I still do not understand why I did not do languages but still did cross country!! I found it hard to explain my disability when asked if you use terms like brain damage people get the wrong idea if you say it’s similar to a stroke but when your young people often understand better. I was very reliant on learning support and family. My Mum especially has always been my biggest support with any issue and would speak up for me, something I needed as I got older to do for myself. If I did have any issues and speak up I would be told ‘I’m sure you got the wrong idea’ so it would play on my mind more as I would question myself and blame myself. One thing I also did not understand is if I was ever having problems people always assumed it related to my disability!

I had a few stand out teachers that helped improve my self image and self esteem a colourful  English teacher at GCSE that asked for my learning support to be removed and got me working more with the class. I felt more accepted, made a friend and got an A despite Dyslexia. She actually used to pick essays that she would read to the class to show them a good example claiming they were from past students and then she would anonymously read mine occasionally trying to give me a confidence boost. Also a ex Navy American bold Biology teacher who also stressed I did not have issues learning and his encouragement also meant I also got an A. I do look back with frustration that there were times in exams dictating answers to my learning support that embarrassed I could be wrong I left questions blank or gave limited answers (crazy).

I used to get so frustrated with my handwriting I struggled to read not helped by the Hyperhidrosis. I would complete work and at times I would accidentally put wholes in the paper or it would rip. If I could not read my efforts I would get upset and cross through essays with a ruler,  wanting the work to be correct and reflect my understanding. I recall this being a real problem in history as I enjoyed the subject but the Hyperhidrosis made computer work difficult. I did not develop any IT skills until I was over 16 almost 17. Marking my work must of been a nightmare!    Like with many things like opening packages it was frustrating and sometimes finding solutions you had to be creative! 

I did apply to college for a change of environment but the course I wanted to do childcare education basically because I wanted to teach special needs but had been encouraged by some to lower my aspirations. The course  was very practical and I got turned down due to my disability also I was scared of the change so the rejection from the course I wanted meant I opted for A levels back at familiar school upset at the rejection and worried for my future career prospects. At A level I only took Biology and English Literature but the school made sure I had in class support again and I did not mix. I do not quit but can not say I enjoyed A level. I also missed my old English teacher and found being quiet and Dyslexic , as well as from a previously low set the prospect of reading Jane Austin, Chaucer or Shakespeare to the class as they went round or acting out play scenes unbearable! I recall my young new learning support explaining to me how they had made allowances for me to study at A level I was very upset. I had the grades 6x A-C including 3 As I know others had better grades but I met the entry requirements same as everyone else.Given my shyness, self esteem and reluctance at times to answer the questions my results were fine, I did not fail anything! .

I was determined to go to university but some were not sure it was right for me and I was told to look at HNDs these were in limited subjects for 1 A level pass but I had much better grades than this but followed advice. I opted for tourism out of a love for holidays and a fascination for different cultures but no long term work aim, still wanting teaching and seeing lower options as impractical following rejection from college. I went back to school shortly after leaving the science department had awarded me the Governors award for Biology I was pleased to get some recognition for my efforts from a department I felt had worked well with me but moments before my award the headteacher gave a speech explaining that lower than anticipated results were due to the number of SEND students. I was angry as I was the only student in my year group with an educational statement (others had dyslexia etc but no statements which is like an EHCP)  and my results were fine. I had my A levels and went to university, it was so different.

At university I thrived. I found the work easy, did not use learning support assistance instead applying for Disabled Students Allowance got assisted technology and a dictaphone, used wonderful extra time. I actually answered the questions!!, dictating answers in exams only to people I did not know. I had to learn to be organised and manage myself for the first time which I loved, I could not really read my handwriting so had to make use of other strategies. I made friends, had trips like to Toronto and got straight A’s/distinctions. I started to develop understanding of IT and really appreciate it!

I was finding my Mobility was however deteriorating and I could not get around easily. I was too stubborn to use aids.  I had some bad public transport experiences and was not really safe getting myself/my clothing  caught in tube train doors. I was not prepared for the change in my Mobility, or the pain in my hips. I had always thought CP was not going to change as it is not progressive but as you age things do change. You need to be committed to efforts like physiotherapy and stretching and at this time I was not. I had had no intervention/physiotherapy since 15 despite much physio young, many doctors appointments and surgery. Things had been left.  My sisters were off to Borneo to work in an orangutan orphanage and I was stuck at home on a long university holiday seeing this as impractical for me despite my interest in travel I did little day in and out.  

I had tried earlier to learn to drive even getting a car but my eye sight caused issues and I did not feel safe, I do not think my half sister would ever take me out in a car again!

Then we had to do a university industrial placement, my placement was in a hotel working shifts 48 hours a week for 12 weeks but I had Access to Work taxi. I was on the hotel reception working a switchboard and for someone who hated the telephone it was a nightmare and I was so bored.I could not see how my essays were relevant or how my degree would lead to work I wanted. Working long hours and horrid shifts was near impossible especially as I had sleep issues. My walking was also deteriorating and I was putting on weight. My mind may of wanted to do something but I was getting painful spasms, not wanting to use frames and struggling to walk. During my time at university I did get some mental health issues with depression type issues. I was pleased to discover about Access to work having struggled to see how I would get any work if I could not use public transport and could not drive but I really did not want to work in tourism. When I finished the HND I topped up to a degree as I wanted a degree. The depression I experienced I feel in part because I struggled seeing my future meant I got a 2.1 . After the degree, I tried to get work but interview after interview failed and the university were running a masters so I enrolled. I got high marks again and came top of my year, but again after failed to get work. I started a PhD but it is really hard and isolating studying a subject at this level that did not interest me.

I started doing paid mentoring for university disability services and wanted to learn and understand my experience and my mental health so I gave up my PhD and went to study graduate psychology. I found it interesting and challenging, I really enjoyed it. I then started to look at me and changes I wanted. I started working for myself organising events and had a little retail business, I need to be busy.

Then I started researching Cerebral Palsy I wanted to try Baclofen a doctor in my past had discouraged me from trying but my GP I had now was very willing for me to try, always supportive, despite my difficulties open to my ideas and well informed. I recall the first night I tried the medication, the smallest of dose put my feet flat, my legs felt light and pain I did not know I had was gone.I realised I had been in pain.  But it changed how I walked, the muscles I had to use were very weak and I could not manage tasks like curbs my walking looked good and with practice, inside it really was but outside I struggled it was so much much harder! I am very lucky  I got to use hydrotherapy and swim also a I researched other options, got the chance to use FES for my walking that I learnt of and FES cycling and things were going well. The Baclofen took away strangely the Hyperhidrosis, this was LIFE changing! I tried orthotic clothes and found them hard to tolerate personally. With Baclofen there are I found side effects when the dose is high it is harder to be as sharp and concentrate so think about the amount you take. When off it after 6 years my feet are still basically on the floor having been stretched.  I learnt to feel much more comfortable with myself and started working with special needs, teaching students to do more for themselves finding this rewarding and they taught me a lot about myself, life felt more on track. I had had interview success with someone who did not know me before! My Cerebral Palsy has to some extent made me who I am, it’s made me determined and empathetic.

My young nephew calls CP ‘Terrible  Palsy’ but I’m not sure it’s terrible it has made me a resourceful person now able to help others and promote the importance of developing skills for themselves and use assisted technology.I also get how easy it is not to do as much as you should.. As for me now I use an I pad at work, I use Mobility equipment when needed, I use the FES and I have a scooter but being able to use hydrotherapy keeps me more mobile and more positive! I am sensitive but also stronger from many of my experiences. I have had problems and set backs at different times including more recently but I cope better when I do in that I can bounce back and try to see everything as a learning experience and part of the story! I have also learnt if there are goals you want to achieve and don’t try trying to accept others wishes against your own you are not living your life and are likely to experience problems you need to learn strategies to prove you can live the way you want to, somehow You need to try!

Other advice would be do not define your self by your disability if it helps make a list of your life roles and qualities. At times you may feel it is better to acknowledge your disability and be direct about it, this may help put others at ease.If you need help like in the workplace speak up and if it helps do a profile like Clear Talents as it will help your employer as well.Get as involved in activities as you can. Do not let others cause you to limit your opinions or put yourself down, this would just leave me frustrated with myself and cross with myself which was definitely  not good for me.Do not let others set or limit your goals and stand in the way of your life. Learn to research your options, be creative, adaptive and do not give up. Focus on what you can do, not what you can’t, take as much control as you can, this can be hard. Take responsibility, be as independent as you can but also open to support. Do not be over dependent. Look after your happiness and health, which means exercise, stretching, I like swimming. Learn from others with CP, read blogs, talk to others.

If if you have Cerebral Palsy or a physical disability how similar was your experience or have things changed?