… to teach the people nearest and dearest to us! We’re so busy advocating and trying to get rid of stigma’s that we forget to educate and empower our own family with the same knowledge we want so feverishly for everyone else to accept. Today my guest blogger is my sister-in-law Denise from Run DMT, you may also know her as @Denisermt on twitter. I have to say I was touched when I read her guest post for the first time. I didn’t realize I’d made such an impact on her at a recent family gathering we’d had at their home and I’m glad she shared it with me and also decided she’d like to share it with you. Thanks Denise, for helping us talk about it! xx
A few weeks ago, I realized for the first time that I had never talked about it. I had never explained epilepsy or my niece’s seizures to my children. I had never explained to them why something as innocent as flashing house lights quickly on and off to create a disco tech isn’t so innocent to an epileptic child.
During a family get together at my house, our home was with filled with laughter and good food, but in a few moments we were about to be served an important lesson.
Using several blankets and a princess pop-up castle, the children created a tent. Of course, all good campers need a flashlight, so Allana found a flashlight to share with her cousins. At first the flashlight was used to scare away the spooky woodland creatures but soon the flashlight created another scare when Allana found the strobe light setting and began waving the beam from her flashlight about the living room.
When my sister-in-law spotted the dancing beam of light, she began to panic. Instinctively, Kirsten immediately jumped up and grabbed the flashlight from Allana.
In my teaching days, I had students with epilepsy and a few even had photosensitive epilepsy. On field trips to amusement parks, these students were not permitted to ride rides with strobe lights and they could not be photographed with flash photography.
Like many of the lessons I taught my students in my former life as a teacher, I had forgotten this one too. I had forgotten how harmful a flashing light could be to a child with epilepsy. Most importantly, I had forgotten to teach this important lesson to my own children.
Fortunately (and sadly unfortunately), Kirsten has years of experience explaining epilepsy and seizures to children due to raising her own epileptic child. “It’s like when you are watching TV and the picture gets all blurry and fuzzy for a minute and then goes back on again. That’s what it’s like for Meghan.”
I was amazed by Kirsten’s simple explanation for a sensitive and complex subject matter. Most of all, I was amazed with Allana’s ability to accept the information, her compassion and her understanding for the level of seriousness a simple dancing beam of light could impact her cousin.
And at that moment, I realized epilepsy is something I should have talked about sooner with my children.