Growing Up with Cerebral Palsy Reflections at 38

When I was 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 whilst 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 as much as I was, 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 too 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 severe 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 led 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 stacking the shelves 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.  I also got to do a musical ride and met royalty!  I got to do some carriage driving that I really enjoyed..

Though school I did have a few friends.  The one I spent most my time with was older than me  and in a different year group.  But I 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 know 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 you are 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 colourfulEnglish teacher at GCSE, that asked for my learning support to be removed and got me working more with the class.  I felt more accepted.  I 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, an 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 me because 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 holes 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 years of age, almost 17.  Marking my work must of been a nightmare!  Like, with many things, 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 I was 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 6 x 'A'-'C', including 3 'A's.  I know others had better grades but I met the entry requirements the 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. I think I started to realise I needed to change my perception. Reality is disability is often seen as something the individual has to overcome...But is this right? How does someone ‘overcome’ something that is much as strong part of who they are?? You can find strategies that may at times be very different to other people’s way of doing things. You need to be creative but I’m not sure it’s correct to say you learn to overcome disability. You need to learn self acceptance that may be at odds sometimes with overcoming. You also need to fight harder possibly against society pressures for perfection and can be a lot happier than many if you manage this. Also everyone’s experiences of Cerebral Palsy and issues like pain is different.

At university I thrived.  I found the work easy, did not use learning support assistance, instead applying for Disabled Students Allowance.  I got assisted technology and a dictaphone and 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 the age of 15, despite much physio when I was 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 an 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 have 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 what 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 when it 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 needed to be busy.

Then I started researching Cerebral Palsy.  I wanted to try Baclofen.  A doctor in my past had discouraged me from trying it, but my GP I had now was very willing for me to try, always supportive, despite my difficulties of being 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 any 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 kerbs.  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, I researched other options, got the chance to use FES for my walking that I learnt 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 and 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. I did find it more complicated to navigate the transition to being ‘an adult’ I think because I had to work out at different points what I wanted and then handle other perceptions on what was possible. You have to learn to believe in yourself and work out for yourself what is possible. You have to learn to be self aware, know your limitations and abilities and challenge yourself while being realistic. Don’t limit yourself by others concerns. You can learn from others with CP but know there will be differences. Learn to be practical but also open minded. Research your options more is probably possible than you realise.

There is often pressure to keep up with others be that socially or academically and that can lead to determination but it’s important to realise it does not really matter what others achieve. We each have a life to live disabled or not and will be happier for finding our own way in life and more original for it. Sometimes we have to accept we need support others do not. Our difficulties however also give us strengths and can make us not just self aware and practical but empathetic. As you gain independence you will also grow in self acceptance but part of this journey may also be accepting help. While acceptance is needed so is the strength to work out your dreams and try to make these happen, this is vital for good mental health. The worst thing is not to try but you may need to be creative!

As for me now, I use an iPad 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 yourself 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 cannot do.  Take as much control as you can.  This can be hard.  Take responsibility.  Be as independent as you can but also be open to support.  Do not be over-dependent.  Look after your happiness and health, which means exercise and stretching.  I like swimming.  Learn from others with CP, read blogs, talk to others.

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