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!

1 comment:

  1. Great articles Amy, it's always great to hear from a fellow hemi. I often look forward to reading what you have to post about Hemiplegia or CP as often i have experienced very similar things. I wish I had had support at university as I had none :(

    I'm currently doing my MSc in Comp Sci and finding that I often get tired or cant concentrate for long periods of time. The lecturers have given me a couple of extensions but the new course director doesn't seem to like me very much and I get the impression he thinks I'm 'milking it' because I look normal which naturally annoys me a fair bit.

    Anyway, hope all is well. Did your operation sort out ok re-the nerve damage?

    Take it easy