Let's Discuss Epilepsy with Kids

All month I've been blabbing my head off about epilepsy, and what it means to go beyond seizure first aid.- I should put that on a shirt! Today I went beyond seizure first aid and I was an advocate for epilepsy! 

A month ago I spoke to my daughters teacher about what to do in an emergency for a seizure. After making her aware of seizure first aid I told her about Purple Day which was an idea 💡 I was given from the epilepsy foundation, but everyone wore purple at Gideons. It began as a simple class focused project and became a school wide thing. 

I was minding my own business a few days ago, and I got an email from Parent Square saying to remember to wear Purple for Epilepsy Awareness Day!

I was so excited that this effort was made on the part of Gideons Elementary which is a Kindezi school! This went from a small conversation on the phone with her nurse and her teacher about a small presentation to a school wide event. They have been incredibly instrumental in making sure Anya has everything she needs from 504 Plans to our up and coming IEP. The staff and teachers are so kind, and they are very proactive about helping Anya as much as they can. This all couldn't have happened without Anya's teachers and the school nurse Ms. Noble. 

Unfortunately I forgot to take pictures of our Zoom while we were on the panel but I was not the only one present for this panel. Another man named Christopher Hilliard was also on the panel. He was a fellow Epilepsy Warrior who wrote his own book called "Seize The Day" where he talks about how epilepsy impacted his life. He said this was the first time he opened up about epilepsy with others in a major way outside of his book and I'm so glad that Ms. Ford's class and Gideons Elementary allowed us to have that opportunity to discuss this with her 3rd grade class! 

Ms. Ford spelled my name wrong but it's okay because that's actually the correct spelling that my mom meant to give me LOL. My name is Shakana!

The children were amazing, and I wish I saw how incredible they looked for epilepsy awareness day! They all had some outstanding questions! Like how do you get epilepsy? And what type of seizures do you have? These are 8 year olds mind you! Chris pointed out that the very first question was something that most doctors don't even know. We both answered these questions respectively according to our own experiences. 

Personally I've had a variety of different seizures which I said were tonic clonic, and focal. I described my experience as one where I might black out, but most of the time I probably have a focal seizure where I'm not quite aware of what's going on. I might start losing my words, and I may not be able to respond. I might have confusion and not know where I am. To me no matter what type of seizures you have the clearest sign of an epilepsy episode is the eyes. The seizure stare is one of those absolute ways you can tell if a person is having a seizure.  I posted a video of my son having an absence seizure this year on my Instagram page to share in the hashtag #sharemyseizure. There are some other brave epilepsy warriors who have made it their business to bring awareness by videotaping themselves or someone else close to them having a seizure. Since there are different types of seizures and everyone who has seizures is posting you can catch a variety of different videos of all the different types of seizures out there. It's an incredible movement and I'm proud that Gideons helped to make this mission possible of spreading awareness to both teachers and students. I am hoping it becomes a table discussion in most homes because it's absolutely necessary in todays day in age!

I hope that we not only made these kids aware of epilepsy, but I hope that they want to become a part of the action in the future. We don't know who we are speaking to right now. To someone else they're just typical children with questions, but their curiosity could lead them to being doctors or scientists and now with exposure to a critical topic maybe they'll also be open to learning more about the brain. One of them may be inspired to find a cure because of our honesty about how doctors don't know what causes epilepsy. They may want to research that and find out the cause or the cure, and then share it with the World. 

I can't express how pleased I am with this experience! The only thing is I totally forgot to take screen shots since I was balancing being taken to the doctor and being there on time and everything. It was not a recorded experience either, so I can't ask that the teacher send snap shots of what was recorded on Zoom. 

Well until next time, Happy Thanksgiving! I hope you all enjoy your holiday break off whether you'll be celebrating or not. I know we all gonna eat either way! So have a blessed one!