Tuesday, 22 October 2013
Spina Bifida and Hydrocephalus Awaremess Week 2013: day 4- How My Hydrocephalus Affected Me When I Was In Education
It's day 4 of Spina Bifida And Hydrocephalus Awareness Week , and today I want to write about how my hydrocephalus affected me when I was in education,
As I've written in other posts, it took awhile for my parents and doctors to discuss the feasible possibilities open to me in the educational world and where, and how, I'd study. I started my education at a special school called Chailey Heritage for children with severe disabilities and complex medical needs, which was in Sussex. While there I had one to one care and support as well as therapy, and there were doctors and nurses on-site. My parents made sure to prepare them as well as they could regarding my needs and when I ask them about it, they say the school did a very good job of meeting my needs. I think I would have stayed there if it wasn't for the fact my parents decided to move from Framfield, a small village in the Lewes/ Uckfield área of East Sussex, to Wallingford , a Saxon Market town in Oxfordshire. They decided to try me at a private school for about a term before we left the area.
Once in Oxfordshire, I attended St Nicholas CE Nursery and Primary School. When I was 11 I went on to Fir Tree Junior School , also in Wallingford. It was during my time at both these schools when I had most problems with my shunt , and therefore had to be operated on the most, at times spending up to 6 weeks in hospital at a time.
I missed a lot of school due to headaches, sickness and not feeling right, Quite often when I did go to school, I got sent home as I felt unwell and couldn't concentrate on my schoolwork despite the fact I had a permenant carer in my classes with me due to the intensity of my headaches which were also accompanied by dizziness and visual disturbances, like blurred vision, black spots in my visual field and feeling like I was going to pass out. I remember also experiencing my vision going completely black despite the fact I was awake and my eyes were open. That was very scary.
During these years, my permanent carer Avis Rance, who was with me at Nursery and Primary School , and Joy Shelton, who was with me at Secondary School, were invaluable to me .
They also did what they could to educate the teachers and my classmates, regarding my needs arising from both my Cerebral Palsy and Hydrocephalus , but quite often their efforts proved futile , instead falling on deaf ears. This was the late 1980s to early 90s , and I was the only disabled child in that mainstream school. Often, the teachers would call me lazy and unwilling to cooperate and / or learn, and always doubted my ability to learn. I was a very enthusiastic student and discovered my love of reading and poetry, which have stayed with me to this day. I remember the lessons taught by a supply teacher , Mrs Wainwright, which were particularly enjoyable for me, as I felt then (as I do now) that it was easy to lose myself in a book and forget about bad experiences I had) .
The following is from a Shine Charity Factsheet about behavior in children with hydrocephalus
Children with hydrocephalus typically have problems with understanding language, concentration, short term memory and processing information. All of these, potentially, can have an impact on behaviour. If you can ‘t remember instructions then you won’t be able to carry them out. If you have trouble transferring knowledge to new situations it may be that you can do something in one place but not another. If you don’t understand jokes your friends may think you‘re a bit ‘odd’.