Last spring, I joined my daughter Journey's fifth grade class as a volunteer on her field trip. I had the pleasure of watching a classmate approach Journey who was taking photos of a museum exhibit. The classmate suggested she turn off the camera flash; he was concerned that it could trigger one of her seizures. I was overcome with pride and appreciation for the caring, supportive community we have created in partnership with the school administration.
Journey was diagnosed with epilepsy as an infant. As she gets older, her seizures are increasingly more pronounced and difficult to manage. Two years ago, Journey's classmates became much more aware of and impacted by her seizures. It was important to our family that Journey's peers not fear Journey or her seizures. We approached the school about educating her classmates to increase their understanding of Journey's experience and provide them with the tools to help if they saw her have a seizure.
We enlisted Susan Harrison, Executive Director of The Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario to teach all students in Journey's grade about epilepsy and different types of seizures. Susan discussed how it might feel to have a seizure and how to be a friend to someone with epilepsy. She covered a number of topics, including how only some people with epilepsy, like Journey, are triggered by flashing lights. The kids learned that they could each play a role in helping someone having a seizure by getting an adult, removing furniture or other hazards from around the person, timing the seizure to ensure it doesn't last more than five minutes, staying close and reassuring the person as their seizure finishes.
Susan's presentation inspired a school-wide epilepsy awareness initiative; Journey and four friends formed the school's first 'Purple Crew.' This team of students was responsible for running an annual Purple Day campaign, joining an international grass roots effort to raise epilepsy awareness on March 26. The first campaign included a presentation at a school assembly where the Purple Crew shared some of the information they learned about epilepsy and challenged each class to join the campaign, wear purple, and collect donations for epilepsy education efforts in our community.
Last year, Susan returned to the school to provide epilepsy education and seizure first aid training to the entire staff. On Purple Day, the students wore purple and collected donations. For the second annual assembly on March 26, the Purple Crew enacted a skit to demonstrate what it might look like when someone has a seizure and how to respond.
Shortly after the Purple Crew completed the skit, Journey suddenly had a real drop seizure; she fell backward, smashed her head on the gym floor, and sustained her most serious head injury to date. With a concussion and significant bleeding, Journey needed an urgent response. In front of the entire student body and several members of the media, the staff and her friends managed the situation effectively. They followed the seizure first aid steps they had just presented in the assembly, ensuring that Journey was cared for until I arrived and could take her to the hospital.
Students from across the school expressed their concern for Journey during her absence over the following few days. They made a giant get-well card for her, signed by every student in the school; her friends called and texted me to check in on her; students from her class even went to the office with their concern that the flashing cameras from the media covering the event may have triggered Journey's seizure. One student went so far as to suggest to the principal that there should be a rule prohibiting flash photography at the school due to the potential risk of triggering seizures. The administration acted on the suggestion and there is now a sign advising guests of this rule in the office where they sign in.
Empowering Journey's classmates and friends with epilepsy education was an effective strategy; they are far better equipped and comfortable in responding to her seizures. Several students regularly jump in to assist Journey when she has a seizure and advocate on her behalf. Recently, after Journey had a seizure and fell face-first onto the stones below the swings, one of her friends complained that there should be sand or a softer surface there instead of the gravel.
The incredible impact of this experience on Journey's classmates and friends will be lifelong! These students will become adults who are well-informed and equipped to respond to and support friends, family members, and colleagues living with epilepsy. Having the right tools and the opportunity to learn has empowered them to create a caring and safe environment for individuals with epilepsy.
By Kimberley Wright, a passionate Epilepsy Mom who advocates with a clear vision of a fully inclusive, vibrant life beyond seizures for her daughter.