A guest blog from Emma, author of Haylee’s friends, a new story book for young disabled children.
About a year ago my daughter, Molly, became aware her left hand didn’t always do the things she wanted it to do. Sometimes she got quite cross with it when it was uncooperative. It has a habit of going off at an unhelpful angle which is awkward for her and gets in the way.
Molly’s frustration prompted me to look for some books to help explain in simple terms what cerebral palsy is. Unfortunately, there wasn’t anything that was child friendly or presented cerebral palsy in a positive way.
After some encouragement from friends, and of course motivated by Molly’s questions, I contacted Scope to see if they had any story books to help Molly understand. As our conversations went on I asked if they would help me write a book to answer these questions, they agreed.
I arranged to meet one of the Scope team at the Kidz up North exhibition 2012 to discuss our ideas. Whilst at the exhibition I bumped into Molly’s occupational therapist Michelle and we got chatting about what I was doing at the exhibition.
A couple of days later Michelle emailed me offering to write the book with us, and so the project started. Michelle had never written a children’s story before but it was on her “one day I would like to do” list, all she needed was some inspiration! After a few luxury hot chocolate meetings, the story started to take shape.
Michelle spoke with speech and language and physiotherapy colleagues to hear what they would like to have included in the story. She also met up with a family that she has been involved with for a number of years and asked both the parents and the older child with cerebral palsy, “if this book had been around when you/your child started school, what would you have wanted it to say?”
The answers were to provide the central theme of the story.
“Never say it is all going to be okay, because it isn’t. But if you do your exercises and wear your splints, it can make things a lot easier”. And “however hard it is and however much you don’t want to, always answer your child’s questions truthfully”.
Throughout the process of developing the story, Molly insisted on being part of it, giving us lots of inspirational ideas and letting us know if she didn’t like something. She vetoed some of the illustrations, like the original pictures of Lilly, the walker, which were met with a very disapproving face from Molly! She also gave us suggestions of what to include, like using her fork and knife and helping to name the characters. Most importantly, she wanted our family dog to be the model for Toby in the illustrations.
Now Haylee’s Friends is published Molly is our best advocate for it. She loves sharing it with anybody willing to sit down with her. Visitors to the family home this summer have all benefitted from Molly sharing “her” book with them and her school friends have commented that “it tells you the things that help Haylee” and “I like the bit when the lead gets tangled up.”
The story has really helped Molly to understand why her body behaves like it does and it has helped her to share this new understanding with the people she meets. Now we hope that Haylee’s Friends helps other children, their families and friends in the way it has helped Molly. Already it is making its way into primary schools in the Harrogate District, it has been shared at Portage training sessions and is appearing in Children’s Centres, Child Development Centres and libraries.
We are all so excited and we hope to have a celebration and launch somewhere local to where it was written and where the hot chocolate was drunk very soon.