Jonathan’s Story – Eye Can Talk

Jonathan’s perspex spelling board which helps him to communicate.

Jonathan Bryan tells us his remarkable story and how he’s doing all he can to make a difference for other children in his situation.

“At last I am able to tell my own story in my own words.  When I was born in 2006, my parents were told I had Cerebral Palsy and renal failure; the MRI scan of my brain was one of the worst the technician had seen.  My early years are a blur of hospital stays, sickness and prayer combined with strong love from my family; which carried me through those long days of pain and uncertainty.

Growing up in a small rural town enabled me to be part of the community, joining my peers at the local pre-school (despite being in a wheelchair with no speech).  Questions about my ability to participate in activities were never raised, fond memories of fun flood back.  Like all children, when I was 4 I started school, although I attended a special school.  At first I enjoyed my time, making new friends and having fun with my lovely teacher – who made lessons engaging, varied and entertaining.  Once a week, I attended my local primary school where I joined in with my able bodied peers for the afternoon.  That first academic year set a foundation of friendship, forming the basis for my self-esteem; and belief that I can meaningfully join in with peers, despite my physical disabilities.

Can you imagine being stuck in a reception class but without the teaching?  Aged 5, aged 6, aged 7…  Learning squeezed in to only one afternoon at my primary school, whilst the rest of my time my brain was slowly shutting down at special school. On top of this, the sensory curriculum I was subjected to became increasingly degrading – nursery rhymes, baby toys, and the icing on the cake – teachers talking to us like we are deaf toddlers.

On and on this ‘education’ continued, with mind numbing persistence, shutting off my reasoning thought and forcing me to retreat in on myself. Outwardly I looked vacantly stupid (giving credence to the idea that academically there was very little going on for me); inwardly I was amusing myself lost in my own thoughts.

When my peers were starting year 3, I was taken out of my special school for an hour a day to be taught, by my mother, to read, write and do basic maths. During the previous summer I had done some work on basic phonics at home using an eye gaze computer.  It was frustrating because the computer couldn’t read my eyes very well, but my mother and carers could – my access to learning was found!  Initially, the progress was slow, and during the third week of term having been taught two letters in the same way as the previous weeks, I was getting bored and beginning to switch off. Thankfully, the advice my mother was given, resulted in her making the lessons more challenging and I haven’t looked back since.

Weeks turned into months, and we moved through the early curriculum, and ended in the summer doing year one work. September brought a renewed pace – with my home education filling every morning, and by February I was using a spelling board for all my communication and writing. By year 5, two years after I started literacy and numeracy lessons, I had caught up with my peers and went on the roll of my local primary school.

Being able to communicate has totally transformed my life. This epiphanic moment has renewed my relationships, as I can hold conversations with family and friends, and brought new life to my free time! Reading and being read to bring me great pleasure, and it is with great excitement I look forward to meeting my favourite author, Michael Morpurgo. By far the most important and enjoyable part of my life, that I can now, share is my faith.  Finally, I can tell people about my time spent in Jesus’ garden when I was very unwell in hospital, and my excitement at returning to live with Jesus forever.

Before I leave, my purpose is to make a difference for children like me in education. To this end, I have started a campaign for non-verbal children to be taught literacy. Never judge a book by its cover, and never look at a child like me and assume we are not worth the teaching effort”.

You can read Jonathan’s blog here.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.