Keeping my daughter with Dravet syndrome safe at school

When my daughter Avery was a toddler and we found ourselves in the thick of regular seizure activity due to her Dravet syndrome, I remember someone asking, “Will Avery be able to attend school?” The question sat unanswered in my heart and mind for some time as I asked myself the same thing.

At the time, I had no idea about the ins and outs of special education, individualized education programs, and 504 plans, or the legalities of what is required from a school district in order to ensure that every child has access to an education. Now, nearly 10 years later, I can confidently say yes, despite the challenges of Dravet syndrome, Avery has been able to attend through our public school system quite successfully.

The journey has certainly not been without struggles, and I still wouldn’t consider myself an expert, but over the years, I’ve learned a lot.

My greatest concern for Avery in school was her safety. Seizures can be incredibly dangerous and even life-threatening, especially if the proper safety protocols are not in place. Trusting someone else to ensure her safety was incredibly difficult for me. While I can’t be by her side every day at school, I’ve found a few things I can control that have helped to keep her safe while giving me some peace of mind.

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The first thing I did was advocate for Avery to have a 1:1 medical paraprofessional with her at all times. Once I showed the school district the severity of her medical history, I was able to help them understand that it wasn’t what was best only for Avery, but from a liability perspective, it was also best for the school district. Avery’s paraprofessional has a medical background and is knowledgeable about her seizure rescue protocol and seizure triggers.

Having someone whose primary role is to ensure Avery’s safety and well-being has positively affected her school experience overall.

The second thing I did was set up a time with the special education director to hold annual training with all of the teachers who may be working with Avery during the school year. This training covers what Avery’s seizures may look like, how they may affect her abilities in the classroom, her seizure triggers, and how to respond to seizures.

While her paraprofessional is the primary person who will likely detect and intervene when it comes to Avery’s seizures, there are many other people she interacts with, and in the event of a status seizure at school, it is often a team effort to quickly and appropriately carry out her seizure rescue plan. Having multiple staff members who are trained in this protocol has been extremely helpful when Avery has had seizures at school.

The third thing — which may be controversial, but which I feel has been extremely beneficial — is being open and honest with Avery’s peers about her seizures. Many of her peers have witnessed one or more of Avery’s seizures throughout the years. This can be scary and somewhat traumatizing for kids, but educating them not only helps to protect Avery, it also helps to prepare them for what they may witness so they can process it in a healthy way.

I have gone to her classroom and given presentations for Dravet Syndrome Awareness Day, where I talked a bit about Avery and Dravet syndrome and offered age-appropriate answers to the kids’ questions. I found a children’s book written by a fellow Dravet mom that became a great resource and has been read to Avery’s class nearly every year.

There is always a possibility that this will backfire and the information will be intentionally used to be cruel toward Avery and her differences, but I’ve found that it’s rarely the case. In my experience, the information empowers Avery’s peers to feel knowledgeable about Avery and her circumstances. This leads to classmates who are more empathetic and better friends.

I realize that every school district is different, but for us, these three things have really impacted Avery’s experience and safety while she attends school. There are a lot of hard things about sending our kids with Dravet syndrome to school, but one thing I know for certain is the value of a parent or caregiver who will advocate and speak up on behalf of their child.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.