This is a book my mother sent me after seeing twelve-year-old Jonathan interviewed on TV and looking up his story.
Can you imagine not being able to speak or communicate? The silence, the loneliness, the pain. But, inside you disappear to magical places, and even meet your best friend there. However, most of the time you remain imprisoned within the isolation. Waiting, longing, hoping. Until someone realises your potential and discovers your key, so your unlocking can begin. Now you are free, flying like a wild bird in the open sky. A voice for the voiceless.
Jonathan Bryan has severe cerebral palsy, a condition that makes him incapable of speech or voluntary movement. He was locked inside his own mind, aware of the outside world but unable to fully communicate with it until he found a way by using his eyes to laboriously choose individual letters, and through this make his thoughts known.
I knew this was a special book, but was unprepared for the emotional impact. It is a book of two halves – the first part is written by Jonathan’s mother and charts the events leading up to the accident that caused Jonathan’s problems. The list of life-threatening difficulties he has endured is shockingly long, as is the number of medical interventions and trips to hospital he had needed. His gritted courage and determination were evident in the fact that he simply hung on in there and refused to die when the odds were stacked against him, time and time again.
But what for me was a source of heartbreak and intense frustration was his treatment at the special school where he was simply being warehoused. It brought back far too many unhappy memories of another bright boy whose education was severely compromised because expectations about his ability were set far too low. This book is a testament to Jonathan’s own intelligence and passion, as well as a tribute to a mother who refused to listen to the experts and was guided instead by her own instincts about her son. She taught him to read and over time, they found a way to allow him to express himself, even though it is laborious.
Jonathan’s own feelings about being trapped within his body without any way to express himself, while forced to watch the same TV programme designed for developing infants should be a wake-up call for everyone in Special Needs education. I very much hope the politicians he has met will take note of what he is saying and realise that while he is remarkable, there are probably many other children and adults with active, creative minds also trapped by their bodies. I’d like to think as a country we will take on board Jonathan’s plea that everyone should be taught to read and write, using all the technology available, unless it becomes apparent that it isn’t appropriate, which is not the case now.
In the meantime, go and track this book down. It is an emotional read, but also very uplifting. Jonathan’s poetry will stay with me for a long time…
10/10
That’s a lovely review for what was clearly an emotional read. I will pick up a copy of this but I think I’ll wait until I’m in the right frame of mind to pick it up.
Lynn 😀
Oh yes – do wait until you feel able to plunge into this one. It’s worth the wait…
Wow, this sounds like such a heart-wrenching read. I’m glad to hear that it’s uplifting as well.
It really is…
What a horrifying situation and yet a hopeful one as well. This sounds like a must read for 2019. I just have to get a copy. Arrr!
x The Captain
It is an amazing book, Cap.
This sounds like an emotional and important read, Sarah, and I’m definitely interested in it. My brother had a difficult time learning to read, and it’s something I’m passionate about- that all children should be taught to read easily. We have a moral obligation.
I couldn’t agree more! And it is horrifying to think how children in such a desperate situation are being short-changed and let down because everyone has such low expectations of their abilties.
What a special book about a special young man. I have known some individuals/students in his situation and found if I took the time it took to work with them (even just to have a “conversation” takes concentration and patience, not to mention time) the results were amazing and a blessing to me.
It is an amazing book, isn’t it? I can imagine you taking that time and having the appropriate expectations to get the best out of students in his situation.
I am still friends with an autistic young man who was my student back around 2010. We have been through loves, losses, and loves lost since then. I choose the semester I had him in class of one of the best in the thirty years I taught at the university. We are getting together over the holidays.
That’s great – there are always outstanding classes, aren’t there? The last class I taught – I’d had them twice and stepped in when their class teacher needed compassionate leave to nurse a seriously ill husband – was my favourite class I’d ever had. I’m very blessed to still be able to teach, which I love – but far more on my own terms and a subject which is particularly dear to my heart:)
Thank you so much for sharing this book with us Sarah. I definitely want to read this one, but agree, I need to be in the mood for such an emotional story. Being a retired educator, stories like this break my heart. You pray that you can see beyond the disability, but I know I made many mistakes along the road in my career. Wonderful review.
You’re welcome, Carla – it’s a hard one, isn’t it? As a teacher, that’s what hit home to me, too. What frustrates me is that his mother went to the school and tried to make them aware of what he could do – but they wouldn’t listen to her. And like you, there are a couple of children who were compromised who I certainly didn’t give sufficient attention to – especially my first couple of years as a teacher. I still worry about them and wonder what happened to them…
This sounds like a wonderful book, Sarah. We have friends who have a son with cerebral palsy as well as other problems. He’s grown now and his parents definitely made a big difference to what he can do now. He uses sign language and a special computer to communicate. His mom also spent hours working to make sure insurance paid what they should and that insurance covers the treatment he continues to need. I think special needs kids need very proactive parents. So glad Jonathan is able to find expression for his creativity and to live a happier life.
Yes… you’re right about parents. The boy I teach is autistic and his parents have had to fight very hard to get an appopriate education for him. This book underlines that fact.
A lovely review, and such a great testament to the power of words for strength and expression.
Which is why it’s so disturbing that the professionals who are in charge of his education didn’t pick up what he was capable of…
It seems like it’s a very valuable and touching book, and I’m sad to admit, but I’ll likely skip it for the latter reason. If feel like I’m at the stage of my life where I should keep away from emotionally-wrenching books. And having friends who worked with special needs, I totally agree with your plea to change things – some of the stories they told were equally shocking.
I completely understand, Joanna. As an educator who specialises now in teaching in this area, I felt it was important that I should read it. And sadly, although it was shocking, it wasn’t a surprise.