Epilepsy Talk

“Epilepsy Smart” Schools | September 2, 2013

Being “Epilepsy Smart” is important and relevant for all schools.

An “Epilepsy Smart” school is one that understands epilepsy.

It puts in place inclusive practices to support a student with epilepsy achieve their academic potential and develop positive social relationships.

After all, a large proportion of every child’s life consists of the time they spend at school.

Along with academic learning, children also learn how to communicate, interact, and socialize with their peers.

Children with epilepsy must sometimes cope with more than the usual challenges associated with school.

They may struggle with learning difficulties, behavior problems, or social and emotional difficulties.

It takes a whole school approach working with the student with epilepsy, other students, teachers, staff, parents and the school community.

In order to set up a positive classroom environment and work towards making school as rewarding as possible for your child, it is important to promote a partnership between your family and key individuals from the school.

It’s important to develop an ongoing relationship with your child’s teacher to monitor his academic progress as well as his social relationships with peers.

How much participation you should expect from teachers will depend on your child’s age and stage of development, their epilepsy severity, and how much extra attention they requires.

By understanding the important aspects of epilepsy management, your child’s teacher can help with your child’s healthy adjustment to the classroom, including healthy peer interactions.

Teachers also play an important part in ensuring your child’s safety, not only in the classroom but in the playground, on school trips, and during sporting activities.

A knowledgeable and supportive teacher will potentially reduce your anxiety and hopefully prevent minor crises from getting out of hand.

A poorly informed or misinformed teacher who is very anxious about having a student with epilepsy in the classroom can add to the adjustment and management difficulties you and your child encounter.

Keep the lines of communication open between you and your child’s school.

And don’t forget about peers.

Some ideas that have helped others are:

Having a “safe friend”…

Find a responsible child a few years older than your child, perhaps a neighbor or another student, to be your child’s buddy

This friend can watch out for your child, lend an ear if your child is having problems, and provide a sense of security…

Having a peer tutor: A student in your child’s class, or in a higher grade, may take on the role of “tutor”… (The details of the role could be discussed with the teacher.)

Success and self-esteem are what will determine your child’s future.

Remember, every child with epilepsy is unique. 

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    Liked by 1 person

    Comment by Moncler 2013 Nouveau — September 20, 2013 @ 10:37 AM

  2. Thanks phylis for this article, Im going to pass it along to some of my teacher friends. I too grew up in the dark ages. In elementary school I used to call my petit mal seizures “funny feelings” . The teacher would dispatch me to the nurses office. By the time I got there the seizure would be over and I’d have to come up with a reason why I was there. “Stomach ache” used to be my excuse.

    Liked by 1 person

    Comment by charlie — September 23, 2013 @ 8:20 AM

    • The nurse at one of my schools had dutch doors. (Top opens, and if you wish, the bottom stays closed or open.)

      I keeled right over the top of the dutch door and when I regained conciousness, she didn’t have a clue what to do.

      I know the EFA is on an aggresive campaign to educate eveyone.

      An all out campaign which they’d like to expand to all sectors.

      But there’s only so much they can do.

      The rest is up to us.

      I remember (not so tactfully) asking you why you didn’t grow your hair.

      You explained it was your “badge of honor” which brought attention to you and a small window of time to explain why it was there and a bit about epilepsy itself.

      Curiosity goes a long way. And you”ve taken the iniative to inform and explain, boldly and beautifully!


      Comment by Phylis Feiner Johnson — September 23, 2013 @ 11:14 AM

  3. This is “Excellent Information.” I am beginning to work more and more with the schools in my area to educate them about epilepsy. The “Side Affects” a person who has epilepsy are coming from “Society”, not epilepsy itself. These side affects can range from discrimination, peer pressure, bullying, and much, much more! It will take a “Village” of people coming together to help the individual say, “I have epilepsy, but epilepsy does not have me!” This is why “Epilepsy Education” needs to be taught in our schools for the “Safety” of everyone involved!

    Liked by 1 person

    Comment by Lowell G.Evans — June 8, 2014 @ 1:17 PM

    • I couldn’t agree more. And that’s why I respect you so much for your mission.

      It’s a brave and loving way to educate people and save them from the ignorance that gives epilepsy such a stigma.


      Comment by Phylis Feiner Johnson — June 8, 2014 @ 11:41 PM

  4. Great article! When my daughter was diagnose with epilepsy! I felt lost . Because of all your information you have given me I learned so much! I had the 504 start right away ! Now she is off to college it’s been a year and three no the seizure with the help of meds and diet ! We are getting the 504 for her just in case! Thank you for all you do!

    Liked by 1 person

    Comment by Mona — June 11, 2016 @ 10:23 AM

  5. Excellent information,I’ve always felt that society has a big affect and the more information that’s given the more they’ll understand

    Liked by 1 person

    Comment by Kathy — June 11, 2016 @ 10:34 AM

  6. Love this article!
    I remember when I first started teaching and Autism was lumped in with Learning Disabilities. Those of us brand new to the Special Ed. field were learning about Autism and instinctively knew there was much more to Autism then just it being a “Learning Disability”. It took a long time to bring about the awareness it deserved and yes, seizures are often found within this Spectrum Disorder. I see the same blank stares on the faces of teachers and other professionals when I try to mention the behavioral characteristics of a child possibly displaying Epilepsy or a seizure disorder worthy of having it checked out. That being said, I think we may have a long way to go but I’m praying we don’t in that maybe we have learned from the past and will let history teach us a thing or too….

    Perhaps we can use all these references get the funding we need? Never know!

    Liked by 1 person

    Comment by Janet — October 16, 2016 @ 12:31 PM

  7. I only hope you are right…

    P.S. I think you’ll enjoy this article:

    Epilepsy and Autism



    Comment by Phylis Feiner Johnson — October 16, 2016 @ 2:32 PM

  8. I might be late on reading this article, but IT IS WONDERFUL TO HEAR THAT THEY ARE FINALLY MAKING TEACHERS SIT DOWN AND LEARN ABOUT EPILEPSY!🎼🎶🎹🕺🎉. When I started having Epilepsy, there was only 1 teacher who understood it. The rest of the school was terrified of me. But the most important part to me, is having a Real Friend. I didn’t have one until I was in high school. She saw me having a seizure, wanted to help, wanted to learn about it, and wasn’t afraid. After that, when she could, she would walk with me like Velcro. She and I became friends during our high school years, but I lost touch with her afterwards. But I decided it was all for the best, and just remember the times when she was there as my First Real Friend.

    Liked by 1 person

    Comment by David Jensen — August 26, 2018 @ 2:34 PM

    • I didn’t meet anyone WITH epilepsy, but I had friends who stuck by me.

      The problem was I went to 12 schools, so I was always the “new” girl and, if that wasn’t weird enough, I had epilepsy.

      Teachers didn’t really know what to do with me. Even school nurses.

      One time, I keeled over right in the nurse’s office. I thought she was going to faint on top of me.

      It was the late 60s. I called it “the golden age of ignorance.”

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 26, 2018 @ 4:14 PM

  9. I didn’t know of anyone else, “Back In The Day” with this *condition. And there were a couple of “chosen boys” who always made sure to harass me.
    Now that technology has much improved, every person should have a video to see and hear what they do or *say, while in a seizure. If I’m going to be made fun of, I want to know, “why.” Besides, mine were called “blackouts.” Known back then as, *Temporal Lobe Seizures. Now called *Partial Complex Seizures. I wish the medical could make up their mind and stick to just one name.

    Liked by 1 person

    Comment by Effie Erhardt — March 16, 2019 @ 6:02 PM

    • I agree Effie. I find the new names confusing at best.

      Mainly because they don’t describe what’s happening.

      I didn’t know anyone else with epilepsy, but I was was aware of the people who ignored my seizures (eg. walking over my prone body) or teased me.

      Not in a “mean” way, but rather in a “joking” way. (Is that better?)

      As far as everyone watching their own seizure video, some have said that they just don’t have the stomach for it.

      I think it’s too mentally painful and they don’t want to see themselves graphically in the throes of a seizure.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 16, 2019 @ 8:39 PM

  10. Very helpful information, it is very sad that children with epilepsy are not treated adequately in our schools. My granddaughter has epilepsy and her teacher doesn’t know or understand how to work with her. She has not received any orientation on how to deal with her in case of a seizure in school. My daughter has explained her behavior before a seizure, but that’s all she knows. The department of education should do something about this urgently. Thank you.

    Liked by 1 person

    Comment by Maria Alamo — April 6, 2019 @ 3:52 PM

    • Went I went to school, the nurse literally didn’t know what to do.

      Students stepped over me in the hall, passing by to change classes.

      My teacher had me sitting on a high stool in lab and watched me melt to the ground one day. (With a quiet “thud”.)

      Now, granted, that was in the 60s and 70s, but you’d think they’d know better by now.


      Comment by Phylis Feiner Johnson — April 6, 2019 @ 4:34 PM

      • Phylis,

        Doesn’t matter what year it was. How others treated you was beyond inhumane! Wish I had the boldness in me *then that I have NOW. I wouldn’t have let anyone “down me” without taking up for myself. Nobody else ever did. “Walking on you?!” I can’t imagine seeing and just leaving another human being on the floor, like that! And watching you ‘melt’ from a stool, while having a seizure?! What was wrong with that “teacher?” She does not even classify as a “teacher,” to me. Humans are *supposed to be better than this.
        You are Precious, Phylis. And better than any of the “normal people.” We are normal, too, in our own way. Others just need to see us this way.

        If any of my writing offends someone, I apologize. I’ve had epilepsy for 68 years, now. Will be 69 in April, Lord Willing. Anti-seizure drugs have been part of my diet since 4 years old. BIG Pharma has done good making money off of me. Everyone have a Good, Seizure Free Day.

        Liked by 1 person

        Comment by Effie Erhardt — January 15, 2020 @ 3:28 PM

      • That means a lot to me, especially coming from you Effie.

        I thank you for your support and comfort.

        It really wasn’t until once I was older and came out of the closet that I was willing to share my “dirty little secret”.

        And now look where I am.

        I’ve just been featured with my own chapter about my epilepsy life and advocacy in Steven Schachter’s new book Visions: The Inspirational Journey of Epilepsy Advocate.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — January 15, 2020 @ 5:42 PM

  11. “Congratulations,” My Friend! Steven Schachter definitely knows A Winner, for sure. I will definitely look into buying this book. With your writing inside, the ratings will definitely go up. Next, *Your Book!

    Liked by 1 person

    Comment by Effie Erhardt — January 16, 2020 @ 9:01 PM

  12. Effie, I think you have more confidence in me than I do.

    It’s just a measly chapter in the book about my trials and tribulations and how they led to advocacy.

    Nothing that others haven’t accomplished with better and more renowned success.

    Yes, of course I wish I could or would have done more.

    But I know my limitations, and I think this is as far as I go.

    Thank you for your vote of confidence though.

    It touches my heart and soul.

    Return from the Edge…



    Comment by Phylis Feiner Johnson — January 16, 2020 @ 10:40 PM

  13. “The Edge of Night” LOL! Yeah. I remember.
    Now to look at the link you provided.
    Stay Blessed, My Friend.

    Liked by 1 person

    Comment by Effie Erhardt — January 16, 2020 @ 11:28 PM

  14. Phyllis, you are amazing. I wish I could place this specific article into the hands of every single Board Member, Educator, Faculty, and every person that works in the Education system, as they are all important in the lives of our children. Being an adult that worked in the Education system that was terminated because they became tired of my Epilepsy, I want to protect every child out there. Keep doing what you are doing. I have learned so much from you!

    Liked by 1 person

    Comment by Jeri Lynn Palmer — June 7, 2021 @ 10:41 AM

  15. Thanks for the compliment, Jeri. But it’s through advocates like you that we learn the most and live the best we can.


    Comment by Phylis Feiner Johnson — June 7, 2021 @ 11:59 AM

  16. When I was in grade school (eary 2000s) I started having seizures that I was unaware of. These events started at least by fifth grade, and I had been bullied since first grade. The only difference I had noticed was my grades were dropping – even after spending hours each day after school completing my homework and studying.

    When my parents noticed that I would stare at the wall or would end up on the floor at home, I was still attending the Catholic brick and mortar grade school. None of the teachers at my school ever mentioned to my parents that they thought something might be going on/wrong. Many of them would do anything for my previous classmates when they had a concussion, but they surely were not educated (and may still not be educated) about epilepsy/seizures and first aid.

    I wasn’t officially diagnosed with epilepsy a brain tumor until 2012, after my father returned from his third deployment with the military. By this time, I had already completed one year of Cyber School.

    Liked by 1 person

    Comment by Gwen — September 5, 2022 @ 6:04 PM

  17. I feel for you. I was bullied and my parents were in denial. (To this day my mother won’t say the “E” word!)

    And I went to 12 schools. Always the weird new girl in school. You know, the crazy one who kept on falling down on the floor and falling down the stairs.

    I was diagnosed at the age of 14, but that didn’t stop people from treating me like a pariah.

    But eventually my will and persistence won the battle. And eventually the war.


    Comment by Phylis Feiner Johnson — September 5, 2022 @ 6:26 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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