Saturday, 9 March 2013

Cerebral Palsy Awareness Month: My Experiences with Education (Part 2.)

Hi All! 

Firstly thanks to everyone who read my first instalment in this duo I have decided to write as part of my contribution for cerebral palsy awareness month, I had a great response, it's really appreciated. 

So today I'm going to share my experiences with you about my time in further education and higher education. After completing my GCSES, I enrolled at college to do A levels in Psychology, Sociology and English language and literature. I knew from a young age that I wanted to go to university, initially I wanted to  obtain a degree in law, but I decided to pursue a degree within the realms of the social sciences as I find human behaviour endlessly fascinating, and I want a career where I can help people. 

For me, I was really lucky with my further education college. It was literally at the end of my road, so I only had a short walk each day. This enabled me to pop back home frequently during the day to swap over books and folders so I wasn't carrying stuff around unnecessarily. I was also incredibly lucky in that I had a very good friendship group and one of my friends, Calum would carry my folders around for me, I didn't even have to ask, he just took them off me. I'll never forget such a lovely, simple gesture. In terms of disability support, my college provided me with a ground floor locker to store things. They also allowed me to have 25% extra time for exams, with regular rest breaks. This really helped me do very well in exams as I it allowed me to take my time, so that my writing could be legible. I was also offered the opportunity to do my exams on a laptop, but I declined as I thought my typing would go haywire with exam nerves, however it might help others. The rest breaks were great too. I have kyphosis and scoliosis because of my cerebral palsy and I find it really affects my posture, sitting down for long periods triggers really bad pain, so getting up to walk about was a great thing. That's all I've got to say about further education, to be honest, the level of support was much the same as secondary school. It was tough doing subjects which were very wordy and quite labour intensive; however, I was focussed on going to university as well as being incredibly interested in the subjects so I didn't mind the challenge. 

Now, onto university. I have so much to say about this. Deciding to go to university was a huge decision, equally terrifying and exciting. I decided I wanted to move away for university. For me, it was a great opportunity to grow up, get some independence, as well as obtaining a great qualification. Now, my parents and I realised that to achieve this ambition would require a lot of planning, researching and thinking to meet the challenges my cerebral palsy presented. There was limits in my ability to do everyday domestic tasks, and in terms of self care. I was really keen on going to Liverpool, as it wasn't too far from home, and seemed a lovely city. I loved the look of Liverpool Hope University, so I went to meet the disability officer there and she was honestly so positive and supportive, that it put mine and my my parent's minds at rest that I'd be happy if I went there. The campus itself was lovely and small, so it'd be easy to get around. The residential halls were on campus, so I wouldn't have a lot of walking, or have to travel on public transport to get to lectures. So it was very disabled friendly. 

I was initially very overwhelmed after my first meeting with the disability officer. I hadn't realised quite how many obstacles and challenges my cerebral presented on a daily basis. I mean, I was 17 years old at the time, and in the difficult transitional period of going from a child with a disability to an adult with a disability. I was used to my Mum doing everything that was difficult, without a second thought. If I went to university, I'd be standing on my own two feet for the first time ever. We were informed that we could apply for help from social services to provide financial support, so I could buy my own care. This took a lot of fighting, and writing to my MP to agree for them to fund my move to university. Very stressful! In hindsight, I couldn't have done without it though. Going to university really made me realise how much cerebral palsy impacted on my life, and in some senses it was a bitter pill to swallow. Luckily the fact that sharp shock was needed to achieve an ambition helped. 

In terms of assistance to cope with the challenges the actual studying of the degree presented. I was advised to apply for Disabled Students Allowance (DSA). This was a grant to allow me to meet the extra financial costs my cerebral palsy imposed on me whilst studying. I used it to buy note taking support, (could not have coped without it!), I used it to fund ink/paper so that I could use my time better and not waste precious energy copying things from the computer. It also paid for me to have a height adjustable desk and a bespoke chair to cope with the poor posture associated with my CP. If I'm honest, this did not help alleviate any back pain. It also funded Dragon Naturally Speaking software and a computer. As I'm one-handed, I am very prone to repetitive strain injury in my good hand, so anything to minimise the amount of typing I had to do was welcomed. The DSA was very flexible in allowing me to purchase things if an unforeseen issue crept up related to my CP. 

The university itself were very supportive of my disability. They gave me a ground floor flat, to save me having to go up and down stairs. Every Tuesday one of the lovely domestic staff would come in and hoover my bedroom, whilst I was at uni. All this extra help really helped me do well at university, by minimising the effects of my disability. I also continued to have extra exam time and rest breaks. However, it was tough. I wasn't your typical student, I'd go to bed early every night, and spent every spare minute doing uni work. I did my degree full time, so the workload was heavy. My CP makes me so tired that I simply had no spare energy after lectures and studying to go out and party. Luckily, I'm am introvert anyway, so to me I didn't feel I was missing out. 

So anyway, In July 2010 I graduated with a degree in Psychology and Criminology, and was sure that I wanted to do a Masters degree. I decided to do it in Health Psychology, as I was keen to work with disabled people afterwards. It became apparent to me that it would be a good idea to do my MSc part time, because the course itself looked demanding, and I wanted to do it to the best of my ability, and I couldn't do that if I was tired all the time. This meant it would be a two year course instead of one, but getting a good grade was my priority.  I would say that the support I received for my post graduate degree was much the same, as obviously my needs were the same. In the end, my decision to go part-time was vindicated, as I had just been re-referred back to an orthopaedic consultant for increasing pain and deformity with my CP. As a result, I needed lots of botox, serial casting, and eventually three operations in the space of 18 months. This was tough to fit in around studying, but the uni were supportive, and gave me extensions as and when I needed them. On top of this, I ended up getting diagnosed with depression in April 2012, just as I was finishing my degree. I had to pause my studying, and focus on recovering from depression. That was the unbelievably tough, I was scared to go back to university, for fearing that I couldn't cope with the pressure. Luckily, I did, uni were very patient with me, telling me to focus on myself. My dissertation took months longer than I anticipated to finish, but I did it. I'm now awaiting my grade, and hope to graduate this summer. 

This turned into a bit of a rambling post didn't it? Anyway, I guess I just wanted to share my experiences with how cerebral palsy and university fit together. I think it was probably scarier for my parents, the thought of me moving 50 miles away from home, and not knowing how I'd cope on my own. I think it's one of those cases where you have to feel the fear and do it anyway! 

My best advice for anyone with cerebral palsy planning to go to university is to RESEARCH, RESEARCH, RESEARCH! You have to think of you care needs as well as the any additional education needs. Really quiz the university on their disability support. And trust your instincts, if you don't feel they'll take your disability seriously, then don't go there. Forward planning is key, it's not something you can rush into. Applying for disabled students allowance, support from social services, can take a long time, plus any appeals! So try and apply way ahead of time. Try and speak to others with the same condition as you, see how they coped with the challenges of university. Chances are they have words of wisdom to share. (The HemiHelp Facebook page will always have young people on hand). I found it helpful to research possible careers related to my degree beforehand. I didn't want to fork out thousands of pounds for a degree to find out that the possible careers would be off limits to me! Finally, be honest with your university about your disability. If you feel you need extra help, like an extension, ask  for it. You don't want to suffer in silence, at the expense of your degree mark. It's best to ask for extensions early on, in case they think you've just left the work at last minute! 

Happy Cerebral Palsy Awareness Month! As ever, any questions, just ask. You can also catch me on twitter (@thisisamy_)


Me and Adam, Graduation day!

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!