My Journey through the education system
Brain tumour survivor Catherine Sutton shares her experiences journeying through the education system.
Born 6lb 5oz a healthy, happy baby. I started walking before 9 months, meeting all standard milestones on or before the norm. I clearly had a determined, independent streak, a trait still evident today! I remember my first day at school and the confidence that stepped into the classroom. I had started to read and could write my name. Maths became my favourite subject.
A few years later, we moved house and I started at a new school. The work was easy, but things were soon to change. I made lots of silly mistakes, but my teacher didn’t seem to notice. I did and was confused. I started to have headaches which became progressively worse. When school staff were dismissive, I never mentioned it again. My mum, a paediatric nurse, however recognised these, and later symptoms, as signs of intracranial pressure but my GP and an emergency doctor disagreed.
It was only through Mum’s contacts and insistence, that I was referred for a CT scan. The result was a posterior fossa tumour. The eventual diagnosis: medulloblastoma.
Whilst recovering from brain surgery, I received the results of my grade 1 piano and clarinet exams, (taken about a month before my diagnosis). I had passed both!
Meanwhile, a new educational pathway was being paved. Little did anyone know it would be more like crazy paving…
My parents arranged a home tutor during chemo and radiotherapy who liaised with my school. I had gone up a year and had a different teacher. However, when time came for my return to school, it became apparent that discussions with my tutor had been strained and the head teacher didn’t think there was need to worry because I would catch up.
I started at a different, ‘all through’ school enabling smoother transition to secondary…
People were kind and I kept up with the work. Being essentially bald was embarrassing because, although I could wear a hat, I was aware that everyone knew, and I had a scar down the back of my neck. Again, I kept up with work valiantly in my final year, but it certainly wasn’t as easy as it used to be. My parents had started an application for a statement of special educational needs (precursor to EHCP).
Secondary school was difficult. I knew about a third of my year from primary but dealing with new responsibilities was tough. I fell behind with work, sometimes got lost and failed some end of year exams. I still hadn’t got a statement, so no support. Those months out of school meant I’d missed age related social issues and it showed. I stumbled on…
My statement came through after 4 ½ years. The support helped but why did it take so long? What had I lost in those intervening years? I sat 8 GCSES and passed all: A-C.
My LEA (Local Educational Authority) wanted me transferred to another school and was nearly taken to tribunal by my parents. They (LEA) backed down with 24 hours to spare but it had been a huge upheaval!
Despite some raised eyebrows, I continued with music lessons outside school and passed Grade 5 music theory a year before GCSEs. I also passed grade 5 piano and grade 7 clarinet. Support with music was a key component of my statement but wasn’t addressed.
Having all required GCSEs, I started 6th form. I felt painfully self-conscious, and my ‘helper’ had left. Week after week I was the only person in the class without a partner for biology practicals. Little interest, it seemed, was paid to my development beyond school and several teachers questioned whether I could cope at university. I quit biology (my favourite subject) then soon after, I left school.
I started college the following year, still withdrawn, with low self-esteem and spent break times ‘hiding’ in the library. One day, I was persuaded to sit with a group of students. I was reluctant, but once I realized it wasn’t a prank, began to open up and that started the best 18 months of my life, socially. People liked me, I made friends and gained in confidence in a way I could never have expected. This translated to my work and belief in myself. I was scoring A-B in biology assignments, the subject I’d given up at school.
The difficulty was exams. I could have 25% extra time but that wasn’t always enough. Exam styles for sciences did not suit my acquired brain injury and support arranged in chemistry never materialized. As a result, my grades were significantly lower than predicted. Psychology, a new subject, however proved a triumph. I achieved A for my research project and A overall. Despite this, I was rejected from all universities I had applied to. Reference to my brain tumour, I was told, was an excuse.
Via ‘clearing’, I enrolled on a degree in psychology with human biology. There were multiple challenges in getting relevant support. However, with my newfound confidence and that innate determination, I proved to myself and all those who had cast doubt on my ability, that I could achieve. My final result was 2:1.
I received a distinction for my dissertation and had an academic publication.
The next step was my Master’s degree in clinical neuroscience. I was promoted for distinction for my thesis but, due to lack of understanding of my needs, (ironic considering the subject!) this wasn’t achieved. Again, I showed ability in research skills and had a publication as co-author but the difficulty is progressing beyond this level.
My distorted neuro-cognitive profile limits my choices. Paid work has played to my weaknesses whereas areas where my strengths are valued are highly competitive. Over time, I’ve applied for many PhD positions but could never outcompete others.
Some years later, I thought I’d ‘try again’ and studied research methods in psychiatry. I gained a merit overall and a distinction for my dissertation, but it looks like that was the end of the road…
I’m writing this at the age of 40 knowing I will never reach my full potential. Barriers were present at every stage, impacting the next. I could have achieved so much more than just a few bits of paper and a photo wearing a funny hat.
The bigger picture, however, is that I’m not the only one. I’ve been astounded to hear from survivors and parents that they are having the same difficulties that I and my parents did: from return to school 30 years ago and throughout later education. Surely, this can’t be considered acceptable!
I absolutely believe that survivors of childhood brain tumours can reach their potential given the right environment, resources and encouragement. This, however, requires an education system that not only understands but is willing to learn and adapt. Recognition that brain tumours in children affect brain development is key. Easier access to relevant professionals and a change in assumptions found in certain educational establishments and professions are needed.
Catherine Sutton
BSc. Psychology with Human Biology, 2:1,
MSc. Clinical Neuroscience,
MSc Psychiatric Research.
