Christopher Day is an Education Consultant for Axcis in our Manchester office. In this personal guest blog, he tells us what it’s like to grow up with Cerebral Palsy as well as sharing some advice he’d give those who are new to working with others who have the condition.
Cerebral Palsy, in my case, was caused by two separate things. I was born prematurely (28 weeks 2lbs 1oz, given a 10% chance of survival) and through a lack of oxygen to the brain during the birthing process, my cerebellum was damaged (the bit of the brain that carries signals to muscles).
It affects me in many different ways. My most visible physical issue is that I walk with a gait and (when tired) carry my left arm (as in walk with my left arm at a 90 degree angle). These are not the things that actually cause me any real issue though. Yes, walking for long periods hurts my legs as my muscles are under developed (but everyone’s legs hurt when walking for a long time) and yes, walking about with your arm at 90 degrees looks a little…eermm odd. The biggest effect is on my co-ordination, balance and general speed (as in speed of both thought and movement). I am unable to do things that your average person would not even consider, such as, ride a bike, use a screwdriver, drive a manual car or climb etc… anything that requires you to do two things at once. (Think changing gear and turning a steering wheel). It also affects my thinking process, especially when I am tired.
I also have Graphic Dyslexia which is caused by my CP. This affects my ability to take in peripheral understanding, for instance, I lack the ability to remember directional information, meaning I get lost when I am not in familiar surroundings and I am unable remember directions from one place to another (unless very familiar).
School was strange. I had a statement as a child (later to become an EHC plan) meaning I was afforded my own teaching assistant (Mrs Symes, God rest her soul!) It was automatically assumed that I had special needs – and therefore, I was going to struggle academically. As it happened I often got in trouble for being too opinionated and I was pretty much top of my class in most subjects (apart from PE!!) My needs were physical (at that age) but rather than letting me run around and fall over, like the other kids, I was taken inside every dinnertime to read or “help clean the classroom”. In those days, it was determined that a boy with SEND should be kept separate so I “didn’t get hurt” I was segregated rather than integrated with my peers. I say to this day that it was that segregation that made me as determined as I became. I was socially accepted, I wanted to play football, rugby and cricket and just be normal. In my head I could do all those things as I had never known any different than walking and running a bit funny. Yes there was a bully or two during my time at school but again, lots of people go through stuff like that, it wasn’t nice and my parents helped me through as all parents would with there child. High school was very much the same It was only when I went to college and did Performing Arts that things changed…
If you are working with a child or adult with CP, my advice would be to make no assumptions! Ask questions instead. Of course there are children who are severely handicapped who must receive a level of care. CP is a barrier to what you let it be a barrier to! I would say ‘attempt to do what people say you can’t’. I love helping children, seeing the sense of achievement is amazing.
Nothing I have ever done has come easy to me and I have had to pick my battles in life. I would say the greatest challenge was not giving up. It took me 4 years to pass my driving test, 3 years to walk, 2 years to lose 5 stone in weight. I have had dislocated knees, broken bones, numerous operations and surgeries, I have bench pressed 120kg, leg pressed half a ton, swum a mile, sung and danced in stage shows. I am happily married and I have a beautiful little boy of my own. All of this took me a long time, but these were all goals of mine and I didn’t consider my disability a barrier – I just got on with it.
I would like to add, my parents told me to do whatever I wanted to and all the thanks I have in the world goes to them. Without their belief that I could do anything who knows where I might have ended up!
Huge thanks go to Chris for sharing his story. If you’d like to work with Chris, or if you have a passion for SEND in general and would like to find out more about working in specialist schools or provisions, why not get in touch with your local Axcis office today?