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’.

The impact that hydrocephalus can have on learning and behaviour varies with each individual. Some people may have very few problems, where as in others the consequences can be much more serious. It is important to remember that children with hydrocephalus often have a number of specific learning difficulties, which may mean that they learn in a different way, and need different strategies to help them. Additionally, if children are struggling at school, either academically or with their social relationships this can have a detrimental effect on self- esteem, which in itself can cause behavioural difficulties. If you think this may be an issue it is important to talk to your child’s school.

In my case, I had problems with spatial awareness, and still do. This is a consequence of my  CP as well as hydrocephalus . Subjects like Maths , technology, Science and Art were difficult for me due to hydrocephalus , but also due to my Cerebral Palsy.  This is because I'm unable to " think in 3D" as my OT once put it.  I am unable to judge where my body is in relation to the space it's in, and that makes movement and coordination difficult, 

I was deemed to be quite intelligent academically, as I passed all the tests for intellectual reasoning and ability , but I really struggled on the social side of things. In fact, when I was almost 5 and the doctors and educational psychologist were discussing where I'd be best at school with my parents, they thought overall that Special Education would be better to cater for my complex and severe needs, but could see I was intelligent and had the potential to be able to learn with the right assistance from an early age , so they were in agreement with me trying Mainstream education. This was their final decision but they were very aware I was vulnerable .  I was incredibly shy and insecure as well as unsure of myself , and doubted myself a lot and was reluctant to accept, or recognize, a compliment, as I didn't know if the person was genuinely giving me a compliment or not , or if they were pitying me. I also couldn't recognize if people were joking , or sarcastic or not , based on their tone  of voice, and due to my eyesight , couldn't interpret their facial expressions. 

This further affected my ability to make friends and I felt alienated and left out. 

  The doctors talked to my teachers and support workers often, making sure I was settling into school ok . I was very sensitive , and got bullied a lot. I wasn't a "problem child " but there were some teachers who treated me like one . 

Once I got to secondary school, I felt more confident in myself, but was still sensitive to people's comments and would get openly upset. I felt there was a lot of competition , being in an all- girls school, to be the "prettiest" "most fashionable" "most popular" , and often felt I wasn't good enough due to my disabilities, but decided I'd have to ignore those feelings if it were to do me any good and make me have even more confidence in myself for the future. This tactic worked, and people started looking up to me. I was teased and asked about my scars when people saw them (for example when my carer changed me when we were going swimming) .  Throughout my life educational career, I have had regular CT scans to check my shunt was draining the cerebrospinal fluid ok , and had to miss quite a few hours of school for hospital appointments, so sometimes my days were a bit broken up, between school and home. I secretly welcomed these absences from school though, as for me, not being there was better than facing all the bullying, insults and misunderstanding I associated with school . For me, it was a hostile place. Getting through the school day was hard work too , due to the effort my muscles had to go through due to my cerebral palsy and hydrocephalus .  Despite this, I loved learning. Looking back, I'm proud of my accomplishments at school as they meant I was able to enter University. I struggled making friends there too, but also had some great ones. I had carers and note takers there , and was so proud when I graduated. I often look back and remember the people who teased and mocked me throughout my educational career , ask myself what they'd think of all my accomplishments, and wonder if they'd be embarrassed or sorry about how they treated me. 

 I'm proud I made it through mainstream education , and that my shunt didn't let me down after age 11 .