One thing Kelly Cvijanovich has discovered about having two sons who have epilepsy is that when it comes to obtaining supports and resources it’s important to be proactive and become an advocate for your children.
This is exactly what she has done for her sons Dylan, 7, and Cameron, 3.
Doctors don’t know what has caused her sons’ seizure disorders. Cvijanovich says discovering that her children had epilepsy was “completely scary and devastating” initially, but the greater question was what she should do when it came time for them to attend day care and primary school.
“You don’t know where to turn,” says Cvijanovich. “There were no resources offered by the neurologist or doctors, and I thought I needed to take a proactive approach to this.”
What she did was take action herself.
“Literally, I just went on the computer and searched epilepsy organizations, and Epilepsy Ontario and Epilepsy Toronto were the first to come up, and I sent them an e-mail, offering to volunteer,” says Cvijanovich.
Epilepsy Ontario accepted her offer to volunteer, which proved to be a turning point in Cvijanovich’s mission to advocate for her children.
Through her volunteer work at Epilepsy Ontario, Cvijanovich garnered important connections through the organization. One of those connections came when Epilepsy Ontario executive director Rozalyn Werner-Arcé introduced Cvijanovich to epilepsy information specialist Suzanne Nurse, who had developed webinars to train teachers how to identify and respond to seizures in the classroom.
The webinar also introduces information related to the impact that epilepsy can have on the social, emotional and academic development of children. Having this information is important, given that between 10,000 and 20,000 Ontario students have epilepsy, and approximately 1,000 will be diagnosed with epilepsy each year.
Armed with the training information, Cvijanovich was able to approach her children’s school and day care to instruct teachers on what to do if her children ever had a seizure. She explained everything step by step.
“Basically, it was, ‘Here’s the protocol to follow if there’s a seizure that happens at school and this is what you need to do,’ ” she says.
Having her children’s teachers trained in identifying and responding to seizures has given Cvijanovich a measure of comfort, which is largely why Nurse developed the training.
In an interview in November, Nurse said the webinars were not only valuable for keeping children safe in the classroom, they also provide comfort to parents.
“The benefits are enormous for children who have epilepsy,” she said. “If they’re going to a school where all of the staff are trained and knowledgeable about epilepsy, it makes the students and the families feel much more comfortable about the environment.”
Click here for more information on the epilepsy training webinars.
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Writer: Deron Hamel
* If you wish to reprint this story, please include following notice: “This story originally appeared on the Epilepsy Ontario website.”
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