Monday, 4 March 2013

Cerebral Palsy Awareness Month: My Experiences with Education (Part 1)

March marks Cerebral Palsy awareness month. I think this is a great initiative. Cerebral palsy is one of the most common disabilties affecting children and it's effects on affected individuals varies greatly. As it's such a prevalent condition, yet is not so well understood amongst the public, I think it's great to try and raise awareness about this condition.

 As a person with cerebral palsy I feel that it is my duty to make a contribution to this campaign. I decided that one area I would like to talk about was education. I know from participating in the Hemihelp and Scope forums that education is one area that causes angst and worry for parents with kids with CP. Education is so important for any child and it's not straightforward for parents of kids with CP to decide what is best for their child. Should they go mainstream? Should they attend special school? Should they be statemented? What extra needs will they have during their school career? The list of questions really is endless. My experience with education as a child with a disability was really mixed. It was a tale of two halves. In this first post I want to talk about primary and secondary school and then I will do another post detailing my experiences with further education and higher education. 

Primary School.

My parents felt that mainstream school was the most appropriate for me to attend. So I ended up going to my local primary school, where there was roughly 25-30 kids to a class. At this point, I was not in reciept of a statement. For those that don't know, A statement of special education needs is a statement documenting that a child has extra needs due to a disability, or health condition, that affect their ability to learn. This means that the school recieve extra money for that child to provide the appropriate support. This money could be used to provide extra staff to help the child, or to provide exrta materials. Not surprisingly, these are difficult to obtain, and often require attendance at a tribunal to recieve the statement. If won, the statement is usually reviewed annually, to ensure the child's needs are met. I'm not entirely sure why I did not receive a statement. I think maybe as I was so young, the full extent of my disability was not yet known. In hindsight, I think it was wrong that I wasn't statemented, as the lack of support during primary school made life more difficult that it probably should have been. 

I'll be honest, I hated primary school. I was treated as a 'normal' child, in that I didn't have any additional needs. I'll give you one such example. My cerebral palsy means that I have difficulty holding the paper still when writing, and I find it difficult to keep my writing tidy. I remember being told off by my teacher for having messy writing. I also had difficulty drawing lines as using a ruler and drawing a line is not easy to do one handed. I always felt under pressure to do this as well as my classmates. You're probably thinking why didn't I just ask for help. Well, when you're a child aged between 6-10. It's not always that easy. I felt that as the class was so big, I'd be a nuisance asking for help. When I was in primary school, I didn't even realise I had a disability. Yeah I wore splints, and couldn't do skipping, handstands etc, but I didn't realise I was different. Or if I did, I didn't realise that not being able to write neatly was related to my cerebral palsy. For me, at that age, the extent of my disability was 'I can't use my left hand, and I wear purple splints'. I never told my parents about how unsupported I felt, not until I was an adult. I think it could have left with me low self esteem. But, I excelled at other areas such as reading and spelling, so I guess that helped keep my confidence at a good level. 

The other thing that made me hate primary school was Maths. I am really really bad at maths. Now, this is related to hemiplegia. I only realised this as an adult, but boy, was maths hard. Only certain aspects though. Algebra and shapework I cannot do. You could explain it to me a million times and I won't be able to do it. My parents were so concerned about my maths ability that they paid for me to have extra maths tuition through Kumon maths. It was a limited sucess because no amount of tuition could make up ammends for my very specific maths difficulties. Luckily, I was excellent at mental arithmetic and other areas of maths, so I was able to compensate. None of the teachers ever picked up that I struggled so badly in a few areas, but I think because my SATS were results were average, I guess it never caught their attention. 

 I can't really remember much else of primary school, other than that it was a miserable time. Luckily, secondary school was a complete contrast. 

Secondary School

My local comprehensive was a large school, circa 2000 students. It's the largest school in Shropshire so my parents had strong reservations about sending me there. My Mum's concerns were justified when we went for a visit and she noted that it was all stairs (not good with my weak leg, poor balance) and limited disabled access. What really convinced her that I would not be attending was the fact that as soon as they heard my CP diagnosis, they automatically assumed I would be going in the SEN unit away from my classmates. Basically, they assumed that because I had CP, I was intellectully disabled when I was not. 

Anyway, we went to look around a much smaller school (total 500 pupils) and it was perfect. They were so supportive of my disability, encouraging my Mum to apply for a SEN statement so they could offer me tailor made support. Unfortunately, as we lived 8 miles away, we weren't in the catchment area, so my parents had a hard fight to get me enrolled. Luckily we won, and in hindsight, getting statemented and getting accepted at that school was one of the best things to ever happen to me. 

Secondary school was a happy time for me. I was becoming more aware of my disability, and my limitations, but my school were amazing at meeting my needs. Some of the specific things my statement allowed me to have access to was : one to one support in practical subjects such as science, technology and maths. This was brilliant because while having that extra person there might have marked me out as different, it enabled me to participate more fully and be equal to my peers. I was also given one handed friendly maths equipment (magnetic ruler and protractor) so I could do these bits of maths without extra assistance. I had a ground floor locker and a box in my form room so I didn't have to carry all my books around. I was allowed to leave lessons 5 minutes early to avoid busy corridors and rushing about. When I was in year 9, I had to have 8 weeks off school for surgery, but work was sent home, and I didn't fall behind. 

Naturally my parents worried about how I would cope as I approached my GCSEs but I was well supported. It was decided I would be allowed 25% extra time for exams, which was fabulous. To help me cope with the fatigue I get from CP, I was allowed to do one less GCSE and I used the free lesson time to do coursework and home work. This was great because as people with CP use so much more energy, I often got home from school and slept most of the evenings and weekend so it was difficult to do all my extra school work.

During PE, I was allowed complete control over whether I wanted to participate in activities. Some team games such as netball and hockey I sat out as I felt unsafe with my poor balance and worried about getting knocked over. However I happily participated in badminton and fitness. 

The only problem that remained throughout my school days was maths. My parents and I didn't realise that my specific maths learning difficulties were connected to hemiplegia, so no support was sought. When I was a child, all medical interventions were based on the physical aspects of cerebral palsy. So the invisible aspects were neglected due to ignorance. Luckily I achieved a C in maths and since learning that maths issues are related to hemiplegia, I've put my frustrations to bed. 

Trying to decide what support is appropriate for a child with cerebral palsy is difficult. Not eveyone is affected the same, so a 'one size fits all approach' won't work. Some parents worried that statementing a kid might lead to them feeling different, or being labelled. However, my experience with statementing was incredibly positive. It didn't mark me out as different, but it allowed me to reach my potential. I truly believe that without it, I wouldn't have got my great GCSEs or ended up as university. It allowed me to be equal to my peers and minimised the challenges cerebral palsy presented. I think parents just have to make sure that they are aware of all aspects of cerebral palsy and to be flexible in what they are prepared to do. It's often just a case of dealing with challenges as  they happen.

Thanks for reading, and happy Cerebral Palsy Awareness month!


  1. wow amy, thanks for your concise school history. it honestly does help calm my nerves, ozzie starts school fulltime in september. i know he's ready and as his mom, his advocate, you know we'll be fighting for anything he'll need. thanks again! great write up!

  2. Really fascinating , Amy. In retrospect I have happier memories of primary than seconndary school, but nonetheless am incredibly grateful to have been in mainstream education.

  3. Thanks for writing this. I am mum to a 4 yr old who has quad cp and due to start mainstream school in sept. We are in process of getting a statement and i have flagged up how fatigued she gets and concern about how she will cope with full school week. Sounds like she may be sleeping more at home! Great info about magnetic ruler, simple solution but if you don't know it exists . . .
    Have bookmarked your blog and will visit again. Thanks for sharing your knowledge and experiences with cp.

  4. Hi Amy,

    Once again another superb article. Thank you so much. My son (with LHP) is in mainstream juniors at the moment and every school year so far we have climbed the same mountain to get some understanding of his needs which is then inadequately handled in transition to the next year, and it's an outstanding school by any other measure. He is very bright, this is recognised at least, but he is hugely held back by difficulties with hand-writing. He will get a laptop but this is still very hard for him so scribe support is essential. Getting that appropriate support in place is still enormously difficult and statementing is tabled to be scrapped by 2014 (we're told) and there seems to be enormous resistance to it. I home school one day a week now to help with his exhaustion. It's great - actually, it's really great - but really only helps with one of the many additional challenges he faces. Fortunately we gave the school all of the Hemihelp information and they are arranging a school training visit for all staff - we remain hopeful but it's hard not to worry all the time nonetheless. Thank you again Amy. You always help and I love your style. Fiona