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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Resources:

http://www.epilepsysmartschools.org.au/

http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/your-child-at-school.cfm

http://my.epilepsy.com/info/family_kids_education

http://www.epilepsysociety.org.uk/aboutepilepsy/epilepsyandyou/childrenandeducation-1

http://www.aboutkidshealth.ca/En/ResourceCentres/Epilepsy/AtHomeandAtSchool/EpilepsyandSchool/Pages/At-School.aspx

http://www.epilepsymatters.com/english/lwelearning.html

http://www2.massgeneral.org/childhoodepilepsy/child/


16 Comments »

  1. Really affecting and commendable low-down,it is good material to decipher this mail increases my knowledge.Thank you…
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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!

      Like

      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.

      Like

      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

    https://epilepsytalk.com/2013/10/06/epilepsy-and-autism/

    Like

    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.

      Like

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