The Eye of the Storm

We feel honoured to be supported by Amy Mayo who is selling her first ever book ‘The Eye of the Storm’ to raise funds for Bamboozle during our 30th year.

Amy has been attending Bamboozle events since she was 5 years old.

This book was written word by word alongside Amy’s English tutor using her spelling book and EyeCommander.

You can buy ‘Eye of the Storm’ here.

Christopher Davies has written a blog post below where you can find out more about this incredible story!

Children whatever their abilities or disabilities can do more than we realise.

Guests were arriving at Winstanley House for Bamboozle’s annual Gala Dinner when Iona came up to me saying she had something to tell me and began rummaging round in her bag. I have known Iona for 17 years since she first brought her profoundly disabled daughter Amy to a Bamboozle family residency. Amy was four then and not expected to live beyond her 10th birthday. She is now 21. She has cerebral palsy, and her father Neil says that if the spectrum of CP is one to ten then Amy is eleven. Amy is very difficult to read, even for those who know her well. Her facial expression remains almost the same whether she is experiencing pleasure or pain, excitement or boredom. This makes it difficult for the rest of us to understand her and communicate with her. But if you are patient, keenly observant and wait long enough then, as we will see, many things are possible.

When she was about six Amy was part of a three-day residency with five other children with similarly complex needs. They had come with their non-disabled siblings, parents and carers to take part in an exploration of the Michael Rosen delightful multi-sensory story We’re Going on a Bear Hunt. Over the first two days we had explored the swishy swashy grass and the squelchy squerchy mud and stumble tripped through the forest until on the third day we arrived close to the bear’s cave.

We could hear growling and rumbling coming from the distant end of the theatre studio.

The Bear?

Must be, mustn’t it?

The group were gathered together – some in their wheelchairs, others on bean bags and Amy in Iona’s arms on her lap. What should we do? Keeping my voice in a whisper so as not to be heard by the bear, I asked:

“Is anyone willing to go down there, see what they can find out and come back and tell us what’s going on?”

I have to admit that, not knowing then what I do now, I was addressing this question mostly to the non-disabled siblings. How dumb was I? It was Amy who reacted; she lurched forward in her mother’s arms. Now many people with Cerebral Palsy have frequent uncontrolled movements but Amy does not – so the lurch forwards seemed to indicate something purposeful.

“Amy, would you like to go down there and have a look to see what is going on and come and report back?”

She lurched again.

Now, none of us know exactly what Amy was trying to communicate in that moment but it certainly seemed to be intentional. So, if it was intentional what did that mean? Was she reading the anticipation in the room and motioning that she wanted to be part of it? Did she read the tone and inflection in my voice and decide that something significant was about to happen? Or had she followed every bit of the story over the past two days and knew that the dénouement was approaching and wanted to be there? Did she understand every word of my question? Had she understood every word spoken over the last three days. Who knows? But her lurch seemed to be saying “Yes I’ll go and find out.” We don’t know for sure, but we do know that in that moment we all realised that Amy understood more than we thought she did up until that time.

Another breakthrough followed when Neil, her dad, thought that he noticed that Amy was blinking back at him. Painstaking hours of trial and error followed until breakthrough. He discovered that when Amy blinked once she meant “No”, and twice was “Yes.” And Amy’s world was changed for ever. Now the adults around her could ask yes and no questions and she could for the first time make meaningful choices.

Over the ensuing years progress was slow but moved forward until Jonathan Bryan appeared in the consciousness. Jonathan Bryan also has cerebral palsy and had spent the first few years of his school life very frustrated in special school classrooms with no means of communicating his needs and understandings until his mother and a teacher realised that he knew more than they thought he did. He wrote Eye Can Write by choosing one letter at a time on a low-tech wooden frame device with the letters of the alphabet arranged and eloquently expressed the journey of his life so far.

After Iona and Amy watched the video of Jonathan’s book launch, with the Archbishop of Canterbury and Michael Morpurgo in attendance, Iona asked her if she would like to learn to read. She blinked faster than anyone had ever seen. “Yes, Yes, Yes!!”

Back to Iona rummaging in her bag amongst the arriving guests at the Bamboozle Gala Dinner. She brought out the first proof copy of “Eye of the Storm” by Amy Mayo. A short story she has written with the help of her teacher. Using her blinks as Yes and No she had chosen every word with great precision and the result is a richly described short story. Hard back, beautifully designed cover and a Foreword by Bella Ramsey.

Amy decided to write the book as a response to Bamboozle’s invitation for people to make a pledge to raise money to celebrate our 30th year.

How many children like Amy do we misjudge? Many is the answer. It’s so easy to do. If someone had told any of us when we were trying to find ways to communicate with the five-year-old little girl with no expression on her face, no words, no purposeful movement, no ability to eat or swallow that age 21 she would publish her first book we would have thought them deluded.

We were the deluded ones. Amy has shown that she can do more, much more, than we thought she could. She has taught us all another critical lesson.

You can buy ‘Eye of the Storm’ here.