Starting school is always an emotional experience. As the mother of a child with epilepsy, it is terrifying!
My daughter Journey is a clever, beautiful, 11 year old girl who loves life and all it has to offer. She loves to make people laugh and lives to dance and sing. She loves to swim, climb, swing, and ride her bike.
Journey was diagnosed with epilepsy at five months old. We were fortunate that her seizures became well controlled shortly after her diagnosis. When she was four years old, her seizures changed. They became unpredictable, but relatively mild and infrequent until the age of nine. When Journey entered pre-pubescence, she began to have seizures that caused her to suddenly drop to the ground, creating significant risk to her safety and sometimes resulting in injuries. The seizures became difficult to control. As she got older, with changes to her hormones and continued brain development, the seizures became increasingly unpredictable, changing in their presentation and their triggers, and growing more frequent and intense.
Each new school year, I remember preparing for Journey's very first year of school. I can't help thinking about the dread that her dad and I felt as we contemplated kindergarten. Like other parents, we were excited and proud to watch our baby girl reach this milestone. Behind Journey's crisp new backpack and the pretty new outfit, we were sick with worry about sending our precious little one off into a community that generally doesn't understand the world our family lives in - the world of uncontrolled seizures.
Ours is a world in which the threats are unpredictable, triggers are inconsistent, and Journey's personal safety is challenged daily. Average activities like being outside in the sun, engaging in physical games, or even walking down the hall can result in an injury, maybe even an ER visit.
It doesn't seem to matter how many 'first days' of school we have; we continue to worry about Journey's social and educational experiences. Will there be playdates and birthday parties or will the other kids and their parents be too afraid of the seizures? What will learning look like? Will she be included with her classmates or will she be left out in the name of keeping her safe? Will we be able to find ways to keep her as safe as possible while still allowing her the dignity of reasonable risks and choices?
With so many fears, my husband and I often find ourselves questioning how we're supposed to send our sweet girl off to an environment that, for her and other children with epilepsy, is filled with danger and risk. Sometimes it feels like it would be much simpler to just keep her at home where we can protect her; place her upon a shelf, like a porcelain doll, safely away from things that could hurt her. But what kind of life is that?
I'm proud to say that we've survived six years in the education system, advocating and supporting our school in creating a welcoming, safe, and inclusive learning environment for Journey and other students with epilepsy. This has been a learning experience for all, involving patience, open minds, trust, a strong vision, and effective communication.
Safety and supervision are priorities with the staff and administration. Our principal is one of our best allies; she's committed to making the accommodations required to fully include Journey in social and academic activities. During periods when seizures are less controlled, the principal secures increased classroom support with an Educational Assistant from the Board to ensure adequate supervision and the ability to respond to Journey's seizure management needs. The education team tracks potential triggers. The school provides a quiet space for Journey to rest following seizures that require her to sleep afterward.
When Journey's classmates became more aware of her seizures, we wanted to equip the kids so they could cope with what they witnessed. The school met us with absolute enthusiasm when we suggested having the Epilepsy Resource Centre of Southeastern Ontario educate students and staff. The school also organized an epilepsy awareness campaign involving the entire school. I'll share the astounding impact of these activities in next month's column.
Journey enters grade six this year and she is the bravest girl I know. She's my warrior princess! Journey expects to participate in all parts of student life at school; she doesn't allow the seizures to keep her from trying anything. With the support of the school administration and staff, Journey is becoming a leader and champion at school. She helps her classmates and educators better understand the world of epilepsy and how they can support her success at school.
Journey will not live on a shelf. We may not be able to protect her from every seizure risk and she may incur some injuries now and then, but she will live life fully and share diverse experiences as a result of the collaborative efforts of her family, friends, educational team, and community. She will learn, play, laugh, love, and dance with her friends at school and beyond!
By Kimberley Wright, a passionate Epilepsy Mom who advocates with a clear vision of a fully inclusive, vibrant life beyond seizures for her daughter.