How to Tell Your Students About Your Epilepsy

So, you’ve told your management team and you might have even gotten up the courage to tell your colleagues. But what about the bunch of tiny humans that you’ve been blessed to stand in front of every day and teach? What do you tell them? And how?

Well, it’s a question I’ve had to wrestle with over the years- my entire teaching career in fact! So here are some strategies I’ve picked up over the years to educate my students on my condition.

The Little Loves

Let’s start with the littlies. A few years ago, I taught a class of 5 and 6 year old a few years ago in a single cell class room, and just as much as any other class they needed to know about epilepsy. The school I was in got a local nurse to come in and help me explain the condition, which really helped.

But the best resource I’ve found to get students to connect with the idea of epilepsy is a book called “Ben’s Buddies”, which can be found on the Epilepsy Waikato Charitable Trust website. If you’re not in New Zealand, you can access it online but if you are in NZ it should already be in your school library! It goes through what a seizure is like and how to help someone going through it, in a nice non-threatening way. Usually, after reading it, they all want to be your seizure buddy!

The Marvellous Middles

With the middlies, which is what I teach now, I first used “Ben’s Buddies” to introduce epilepsy. Then went on to explain that I had read it to them because I have epilepsy. It was a great way to get onto the topic without just jumping in! Now, because so many of my kids currently have heard the speech, I simply go through my action plan with them again and then read the book as a follow up.

In previous years, when I worked in a single cell classroom, I have also sent a letter home to whānau explaining the condition them, linking resources for them to find information about epilepsy, and offering an open door policy in regards to any questions they may have for me.

The Big Fellas

With the older students, who I taught in my very first class, I made an entire lesson out of explaining my epilepsy which included showing them a couple of first aid and informative videos. The reason for this was two-fold. Firstly, I was in a classroom that was way down the back of a very large intermediate school, and so getting help when I needed it would take a little bit of time. Consequently, the students would likely need to know some basic first aid if I did have a seizure. Secondly, these students were old enough and mature enough to handle some of the more technical aspects of the condition.

I used the book as a way in, but the process of my action plan was more detailed. I actually used some of my kids as my seizure buddies. This took some planning, and I chose them ahead of time, contacted their parents to make sure they were ok with it, and then approached the kids. After hearing about my condition, most of them wanted a job anyway so it wasn’t a big deal.

Actually, the first class I ever taught on placement was a senior class. They were actually disappointed by the end that they hadn’t seen me have a seizure because they knew so much about how to help me!

Curly Questions and How to Handle Them

Be open to questions. You will get some curly ones, some crazy ones, and some thoughtful ones that adults wouldn’t dare to ask. Only answer what they ask and resist the urge to elaborate too much. Just answer what they need to know in the most honest way possible. Usually once I get to the second or third “what if” question, I shut down the session and say they can come to me any time with their questions (which they do). I’ve had questions ranging from “is it contagious?” to “what happens if there’s a fire and you have a seizure?” to “does it make you feel alone?” So be prepared for some incredible questions- kids are not shy about not knowing about something!

Be Open

Kids respond best when you’re open. I’ve had kids and parents come up to me and say how much they appreciate my openness, because it makes them feel like they don’t need to be ashamed of their disability. Obviously, tailor it to their age group. Like the questions, just tell them what they need to know. This is where Ben’s Buddies, and the follow up book Ariana and Jack are really helpful!

So there you go, that’s how I tell my kids. If you have any questions or want any more information on resources I use, I’d love to hear from you. Telling your students and being open about your epilepsy can be a really valuable teaching opportunity, so I encourage you take them leap.

Telling your kids may seem daunting but remember,

You’ve got this!