THe glory of a story
Thoughts and threads of passion and experience that have woven the fabric I call my life. Sharing experiences, memories and ideas so that they are out in the world for you to find when the time is right.
THe glory of a story
When Shane came along, my musical creativity took a back seat and was set aside for years, as I focused on trying to figure out what was needed to make his life as full and rich as it could be. As a child who lived his life with spastic quadra-paraplegic Cerebral Palsy, lots of things had to be amended and adjusted to make sure he was always seen as just another kid that did things a little differently. It could be challenging, but it could also be so rewarding, in how I had to stretch my experience and talents in different ways. Learning to adjust my own sails to go with the wind that the day presented became an art form in itself.
One of the things that I did from very early on, was to try and find ways that Shane could tell his own story. Keep in mind, Shane was never able to communicate verbally, nor was he able to make use of his hands. What I began to do was to create books for him.
The first book was a very simple “All About Me” book that was a quick overview of who he was, how he communicated, how he used the wheelchair to get around and what his life at home looked like. It worked beautifully, as the other kids in Nursery School and then Kindergarten were able to look through it with him at the pictures that shared the many activities his life was made up with. They were able to learn about his family, his pets, his jobs around the farm feeding the calves, helping in the garden and an assortment of other activities that filled our hours at home. It gave the other children a glimpse of his life as a normal kid, who just had to do most things in a different way. I also used the Mayer Johnson Communication symbols throughout, so Shane was also learning what would be his future communication style.
With the first book working so well for him, I began to make it a practice to create books that told his story whenever we did something different. “Shane’s Big Adventure 1” and “Shane’s Big Adventure 2” are two of those books. They are made up of rhymes and pictures that helped to tell the other children about his travels to visit family in British Columbia. First when he was five years old, then once again when he was nine.
I always loved the reactions that he received from the other kids, who were able to read those stories with him and share the places and things he did. The greatest part of it all for me was that it didn’t matter that Shane couldn’t talk to tell his story, he could share through their voices and reading with him, and he didn’t need a hovering mother or EA around to do that. It could just be him sharing his adventure with one of his peers.
All these years later, as part of my quest to get the things that I’ve found beneficial out into the world, I’ve finally made time to put those little binder books into a published format. My hope is that they will be a starting point for children to begin to learn a little more about other children who live life differently, and begin some discussion about not only differences, but commonalities. I have found that they are a great conversation starter, and once conversations begin, real communication and learning can unfold.
I also hope that maybe another parent who is looking for a way to help smooth the educational road for their own child might find it a beneficial idea that they too could try. Or, maybe they can use Shane as an example of another little boy who had to live life differently, but none the less, lived life fully!
I’m not sure where either will go, but what was important to me was that I got them out into the world! There is now a tangible offering that Trem and I can share when we do our presentations, as we talk about the books I created during those events. If people are inspired to buy them then maybe the proceeds will fund more opportunities to present, and share and keep spreading the message that we all belong, we all contribute, and we all matter.
“Shane’s Big Adventure” books are now available on Amazon in both Kindle and paperback. Please feel free to share the information about them with anyone that you think my be interested or might benefit.
Myself, I’m just so grateful that we live in a world where I get to continue to share Shane’s story, his message and his teachings in hopes that by doing so this world of our will continue to move forward into the inclusive, diverse place that I believe is possible!
Welcome to My Passionate Life!
The Passion Test supports you to live your life more passionately, creating the life you dream of, doing the things you love!