The idea for the children’s book Fight Like A Zebra was born as a result of an assignment for a university class on educational psychology and special education. The task was to create a children’s book that could be used to educate children (and/or parents and teachers) about an exceptionality that would present in an educational setting.
In this context, an exceptionality refers to a situation or circumstance experienced by the student that would differentiate them educationally, psychosocially, or medically from their peers (e.g., dyslexia, autism, epilepsy, etc.). Since I had been clinically diagnosed with Ehlers-Danlos Syndrome (EDS), a relatively unknown connective tissue disorder, earlier that year, the topic for this story came to me easily. I also knew that I wanted to do more than just complete the assignment; I wanted to create something that could raise awareness about the struggles that students with EDS face on a daily basis.
Fight Like A Zebra is about an elementary school girl, Charlotte, who has been diagnosed with a genetic condition, Ehlers-Danlos Syndrome. Being relatively new to the school, she hasn’t yet found her place and made friends in her class and she is nervous that her diagnosis is what is keeping her classmates from reaching out to her. A secondary plot line is weaved throughout the story in the character of Josh. He is Charlotte’s friend from the neighbourhood and both seem to click on the grounds that they are the “misfits” of their respective classes. Throughout the story, the pair support and encourage each other to overcome their obstacles and stand up to those who bully them. The final message of the story is that everybody has a story to tell if only you take the time to listen. A positive and heartwarming story, I wrote this for children with the secondary purpose of being a tool that can educate parents and teachers about the realities of daily life for students with complex chronic conditions like EDS.
It would be easy to say that the character of Charlotte was based on me. After all, writers write about what they know, right? Actually, my diagnosis is very different than the one Charlotte’s character portrays. That is pretty typical for connective tissue disorders; they can exist on a spectrum of severity and symptoms. I have a personal connection with vascular connective tissue disorders since my family has a history of aneurysms. I also know that there is an underwhelming focus on aneurysm and genetic research. This is why I’m incredibly grateful that Fight Like A Zebra can help to raise modest funds for research and further awareness, even in a small way.
As a teacher myself, I understand the difficulties inherent in accommodating a wide variety of student needs in a classroom environment. As a Graduate Student studying the psychosocial and academic effects of chronic illnesses on students, I realize that there is currently little attention paid to medical issues as a form of exceptionality in the special education field or school systems more generally. It is my hope that this book can serve as a valuable tool that allows for understanding and communication between parents and teachers regarding students facing the educational challenges associated with EDS. I hope that it can help start to fill some of the current gaps.
I hope that Fight Like A Zebra is well received by those in the EDS community. I hope that it can be taken as the story that it is: as one example of day-to-day life for one student with EDS. As mentioned previously, EDS exists on a spectrum. Every experience is different. There are many different levels of severity. Charlotte represents but one example. I’ve heard a quote before and I’m afraid I do not know who to attribute it to but it goes like this, “If you’ve seen a person with EDS, that’s just it. You’ve seen A person with EDS”. Everybody is unique. All of this is to say that my book is fairly generalized but it has to be that way to represent a population. My aim is to raise awareness and I sincerely hope that I have achieved that goal.
Thank you everybody for your interest and support.
You Are Not Alone: stories of hope, by Lisa Browning