Before children I was never really a worrier. The glass was nearly always half full and I didn't constantly think about worse case scenario situations. Having children changes you in so many ways. There are so many things to worry about, and if you're not careful the worries can be overwhelming. In the early days it's 'are they getting enough milk? How long should they nap for? How do you establish good sleep habits? Then it changes to 'how can I shape a decent human being?' The massive responsibility of bringing up a child is consuming. The love you have for your own child is overwhelming. You fight for your child because who else would or could do it with all of the energy and determination and love of a parent.
Our book this month was 'Eye Can Write' and it was written by the twelve year old Jonathan Bryan. This would be an amazing achievement in its own right, but what makes this story even more incredible, is that he has severe cerebral palsy and he is incapable of involuntary movement or speech. We learn how, unable to communicate, Jonathan was locked inside his own mind. He attended a special school, where he was placed in front of the same pre- school type television and sensory lights year after year. There was no progression or recognition that he could be capable of more. It was his mother who used eye recognition to teach him to read and write and unlock the brilliant mind we meet in this memoir. Jonathan's voice is thoughtful, resilient and funny. He has a love for life despite the pain and discomfort he must go through daily.
The introduction to Jonathan's story is written by Chantal Bryan, his mother. Their stories are intertwined. As I read Jonathan's words I could sense her pain, frustration, joy, fears and determination. She fought for her child when he was born and she was told he would die, she fought for him when he was let down by the education system and she will go on fighting for him. Without her, this book simply would not exist.
It struck me that fighting for a child, especially one with physical or mental disabilities is a lonely place to be when you're fighting a system that seems to be set up against you. The government's funding cuts are heavily hitting children with special educational needs. This is a choice not to invest in our children, not a necessity. What parent would make this choice for their own child?
Jonathan Bryan is the founder of the charity Teach Us Too, which campaigns for all children to be taught to read and write, regardless of their perceived disability. www.teachustoo.org.uk