Review of ‘Eye Can Write’ by Jonathan Bryan
I recently read ‘Eye Can Write: A Memoir of a Child’s Silent Soul Emerging’ by Jonathan Bryan. It is the fascinating memoir of a twelve year old boy with cerebral palsy, written using only his eyes (hence the title).
As a paralegal in the Child Brain injury department, Jonathan’s story, the challenges that he has faced as a result of his injuries and his accomplishments echo the journey of many of the severely injured children that we represent.
Jonathan’s mother begins the book and takes over the story at points. She was involved in a car accident while pregnant and it caused the placenta to detach. Jonathan was born via emergency Caesarean Section. He was diagnosed with severe cerebral palsy and ‘locked in’ syndrome.
Locked in syndrome is a rare neurological disorder characterised by complete paralysis of voluntary muscles, except for those that control the eyes. People with locked-in syndrome are conscious and can think and reason, but are unable to speak or move.
For Jonathan, this means that although he is fully aware of his surroundings, his only method of communication, and the only part of his body that he can move, are his eyes.
The legal action resulting from the car accident is briefly referenced. Jonathan prefers to focus on how he and his family have used the compensation to improve his quality of life. He particularly details the importance of his care team. He describes the nurses and carers with love and deep gratitude. They are clearly indispensable to the smooth running of the Bryan family life.
At Bolt Burdon Kemp, we work with a number of the families we represent to set up a tailored care package. Jonathan’s memoirs are a wonderful example of how a well-crafted care program, working with the child and their family at the centre, can make a huge difference.
The moments shared by Jonathan’s mother when she realised exactly how much her son was capable of and would be able to do with the eye pointer boards are profoundly emotional and full of pride. Those are the kind of moments that we strive to achieve for our clients and their families.
The bulk of the book relates to Jonathan’s struggles to access appropriate education.
For some time he was placed in a school for children with special educational needs, which did not provide the kind of mental stimulation that Jonathan needed and wanted. He spent one afternoon a week in the local mainstream primary school, which he recalls as the ‘one afternoon a week’ where he actually learnt anything. After a time, and due to his mother’s determination and advocacy, Jonathan was taught partially at home, where he soon surprised his family with his special talents for arithmetic and prose.
Within only two years, Jonathan had covered all the content he needed to join his peers in mainstream education in year 5. These two years included his mother’s battle with the local authority to establish that Jonathan was not receiving education at the level he deserved in the school for children with special educational needs and that it was proportionate and appropriate for him to enrol fully in mainstream education.
Unfortunately, so many of our client’s face the same uphill struggle when trying to access appropriate educational provision.
The experience of Jonathan and his mother was strikingly similar to the experience of our wonderful client Sophie. My colleague, Claudia Hillemand, worked with Sophie’s family to secure an adequate educational plan. Claudia has outlined Sophie’s journey here.
The experiences of Sophie and Jonathan only serve to highlight the need to reform our special education needs system and emphasis the growing urgency of the situation.
This is why we are committed to supporting charities that are fighting to raise awareness of a child’s education rights. Claudia had the privilege to deliver special education needs training to the fantastic Child Brain Injury Trust and the parents that they represent. The informative session can be found here. It really is a must watch for any parents who find themselves in a similar situation to Sophie and Jonathan.
The book is rich with Jonathan’s friendships, his family, his delight in life and his Christian faith. It is eye-opening and joyful. Jonathan is wiser than his years; his voice is courageous, determined and deeply kind. In part, the book is a testament also to his mother’s patience and steady convictions in her son’s abilities.
Jonathan’s story also highlights how incredibly valuable and life changing the right support at the right time can be for children with severe and life changing disabilities. I hope that, like Jonathan, with the right support the children that we represent will also be able to achieve their life long ambitions.