Eye Can Write: A memoir of a child's silent soul emerging

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Jonathan Bryan has broken free from his trapped world and shares with us his journey. He is an incredible young man of twelve years old. Along with his mother, they fight for Jonathan’s right to be heard, to be taught reading, writing, spelling and maths. Outwardly his body looks too damaged to be educated in a mainstream school. Inwardly Jonathon has an incredible mind. Unlike Stephen Hawkins who already had access to regular schooling before his illness took hold of his body and had shown his intelligence, Jonathon has no such claim to fame. In a more humorous scenario, you might write, “A roll of her eyes spoke louder than words, a whole paragraph on why the joke was painfully unfunny.”

His strong imagination and gift for using words, especially through poetry, clearly give him a release, a freedom that he cannot experience physically. I read Eye Can Write over one or two of those “Just popping up for my shower, dear” moments over Christmas. The long introduction was written by Chantal Bryan, Jonathan’s mother, and it begins with the harrowing sentence: “Before Jonathan was born, Christopher and I had a feeling that something was wrong. The heaviness of that feeling deepened as the feeling became stronger and more solid.” 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. What words to use to describe this book? How do you begin, knowing that each word was painstakingly written letter by letter using the blinking of a boys eyes? Each word in this review seems somehow more important to take care over, to choose wisely, as a result.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. For example, “She blinked rapidly, as if trying to ward off the tears that threatened to spill,” succinctly captures a moment of emotional vulnerability. Painstakingly slow progress in communicating with the outside world was dotted with little victories, with little joys that made carrying on worthwhile. Then there came the amazing breakthrough at counting and the huge impact that made upon the family as they discovered that Jonathan had abilities that had previously been hidden from view. This is a powerful book from an incredible young writer whose writing ability defies age or physical disability - a truly inspirational figure. Enveloped in the love of my family, home is my sanctuary and my joy, my two younger sisters are my world and I delight in them.

Even having found out I am 12 some people still talk to me in what I call ‘special’ – a slow, loud, exaggerated, high-pitched voice, which I find excruciatingly patronising.I am so glad Jonathan and his family have put pen to paper. Yes, it was a painstakingly slow process using a spelling board, but we need to know and see that disability does not stop the brain from wanting to learn. And we should not see the broken body as an excuse to refuse proper education to creative minds that are trapped within. I was passed this book by a PA/Carer of my son's who knew of Jonathan Bryan from a teacher who knew him. Jonathan is loving, funny, clever, passionate and determined young boy, who also happens to have cerebral palsey and is unable to speak or communicate, or in fact do much for himself. But he hasn't let that get in his way! Movement: This includes blinking, winking, or any other eye movements. Rapid blinking might indicate stress, while slow blinking could indicate thoughtfulness or calm. Movement can also be slow and calculated: “His eyes slowly scanned the crowd until they landed on her. It was as though he had found what he was unconsciously searching for all evening.”

And what about his relationship with his sisters, Susannah and Jemima, to whom the book is dedicated? Acutely aware that the phrasing of the questions was important, I knew it was crucial not to lead him to certain answers. After essentially being restricted to yes or no answers all his life, I now wanted to encourage as broad an answer as I could. Luminosity/Brightness: How bright or dull the eyes appear can reflect the character’s emotional state or overall personality. Luminous eyes might signify vitality or a strong spirit. It took Mummy one more day to realise that now I could spell everything I wanted to write, I could also spell everything I wanted to say. When I have been very ill, members of this family have prayed for me; people I have never met and who have just heard my name. But also through church on Sundays I have been included in a family that has meant I have gained lots of relations through our common heavenly father.”The Archbishop Justin Welby said a prayer and Sir Michael - who wrote the foreword to the book - read extracts. Another inspiration to me was the close-knit family life Jonathan clearly shares with his parents, Chantal and Christopher, and younger sisters. I asked Jonathan about the importance of family in his story. Born after a car accident, Jonathan was discovered to have quadriplegic cerebral palsy and kidney failure. He spent a lot of time in hospital, including for a kidney transplant, and has nearly died several times. Jonathan's description emerged after he had been taught to read and write, via his perspex spelling board from which he chooses letters and words using his eye movements. His experience took place in Intensive Care while he was in an induced coma during ventilation, which he was highly unlikely to survive. 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.

Alternatively, “His eyes burned with a fire that could ignite even the most dampened spirits,” suggests passion. As the duet continued I spelt out an ‘m’then a ‘y’. Because the process was so exacting and tiring, and because I wanted to draw out the suspense, I closed my eyes. After the usual cajoling to open them, I started to enjoy the ensuing conversation: Not only is this a captivating account of how Jonathan came to be born with severe cerebral palsy and an inspirational story of his finding ways to enrich his life, but also, during the story, he recalls his early childhood impressions during an apparent near-death experience, and over the course of time, relates the details to the adults in his life. The opportunity to enter into the life of a family with a severely disabled child who has renal impairment in addition to cerebral palsy and needed a kidney transplant at the age of three, makes this book obligatory reading for those who work with complex children and families.

Jonathan loves Christmas. He loves Christmas because he is part of his family that nourishes him, but he also loves Christmas because he is part of a worldwide family that transcends age, gender, ability and disability. I devoured the book and it’s one of my favourites from last year – I recommend it to everyone as a unique and important story, beautifully written. Buy it immediately. Teach Us Too – Jonathan’s charity Born with severe cerebral palsy, incapable of controlling his movements, it was assumed that Jonathan had very little brain activity. However, his mother, Chantal, always believed that he was more alert than the doctors told her, and she persevered with teaching him the alphabet and basic words until they hit upon a system where he could learn to 'write' using an alphabet board and eye movements.