explaining epilepsy 

Last night, I was on a mission. I wrote to a couple of local listserves asking for their help.

All,

I’m looking for anything that may help me explain seizures to my daughter. She’s in seventh grade, but text geared toward 1st – 4th grade is probably most accessible.

Thanks in advance.

Jess

I was grateful when suggestions began to pour in. There were links to books and videos – heck, there was even a coloring book. I was delighted to have so much material from which to choose.

One of the first recommendations was for a book called The Great Katie Kate Explains Epilepsy. Billed as part of a series “designed specifically to help in explaining epilepsy to children so they can overcome their fears,” it sounded like exactly what I was looking for. I went online and found that it comes in an e-book format, which was even better since I really wanted something I could read with Brooke before bed last night. It had been a rough day and I knew that she had questions swirling in her head. I wanted to make sure that we were doing everything we could to allay her anxiety. So I downloaded the free sample from the e-book. And that’s pretty much where my optimism went to die.

The sample was one page – just one. It was the very first page of the book. And on that very first page were the following:

“Jimmy, what’s happening?” his mother CRIED. (Emphasis mine, but did we really need it?)

“Then she saw why the dog was worried.” (Because scaring the family dog isn’t scary at all?)

The word “wrong” three times. (Not once. Not twice. Three times. On the FIRST page of the book.)

But that wasn’t all. Truthfully, it wasn’t even the tip of the iceberg. In case our young reader isn’t reassured (sarcasm) by all of this soothing (not), calming (not) text, the picture that accompanies all of that delightful text — ON PAGE ONE — is this …

img_9794

{image is a drawing of an extremely anxious looking mom on the phone while holding her son who is sweating and visibly distressed. Her face is a caricature of “afraid.”}

I .. um ..

The whole point of the exercise is to mitigate her anxiety, not to force feed her mine. All I could think was, if I were a kid experiencing this, what would I need to feel okay about it? And the answer was pretty much diametrically opposed to a picture of my mom scared to death, the word wrong three times, and the fact that I was worrying my dog.

I’ll give the authors of the book the benefit of the doubt and assume that it goes on to talk about why seizures don’t have to be scary. But I also know that if I say to my kid, “You scared me! And the dog! And I cried out! And something was wrong, wrong, wrong!” it doesn’t really how many times thereafter I say, “But not really, honey; everything’s fine.” That train has left the station.

There is nothing more anxiety-producing for my kid than feeling like she is causing other people to feel scared. In fact, I think it’s pretty safe to say that that’s a fairly universal phenomenon. There’s no better was to freak out your kids than to freak out and there’s no better way to help them find their calm than to maintain your own, especially when stuff is hitting the fan. So yeah, terrified mom and the worried dog weren’t happening.

I moved on to the next recommendation, a book called Becky the Brave: A Story about Epilepsy. This one, according to the School Library Journal’s review, would “help to explain the misconceptions” about epilepsy. That sounded good.

Originally published in 2002, it’s apparently no longer in print, but I did find a teaser of it on YouTube (proving, I suppose, that you really can find anything on YouTube).

The first page reads as follows:

“To Sarah, Becky is her brave older sister. She is even brave when encountering a dangerous dog.” For good measure, there’s a picture of Becky going toe to toe with a dog.

Screen shot 2016-03-18 at 6.51.24 AM

{image is a screenshot of Sarah cowering behind Becky, who is defiantly staring down what I presume to be a dangerous dog.}

And then there’s page two …

img_9799

{image is blue lettering on a purple background reading, “Becky is brave to hide her epilepsy from others.”}

Uncle.

Again, I will assume that the author at some point later in the story explains that there is no shame in having epilepsy. That there’s nothing to HIDE. That trying to hide a serious medical condition like epilepsy isn’t really, oh, what’s the word … safe. Or possible. I’m sure that happens in this book. It must, right? Let’s just say right. But again, my kid would have already processed this very simple sentence: It is brave to hide epilepsy. Anything thereafter, no matter how explicit it may be in contradicting that sentence is going to come too late.

Because, well, this ..

you’re welcome.

I tried one more. It was a coloring book and Brooke loves to color, so I thought, hey, how can you go wrong with a coloring book, right? Apparently you can go a metric crap ton of wrong with a coloring book.

From screaming moms …

img_9797

{image is a page from the coloring book showing a boy and his dad, both visibly upset. The text reads, “My mom screamed, “Sondi’s having a seizure!”

To this ..

img_9796

{image is a page from the coloring book showing a child on the ground. The text reads, “When we got there, Sondi was kind of twitching. We were SCARED.” To be clear, I didn’t capitalize the word scared. They did. Because apparently it’s not enough to be scared of seizures. You need to be SCARED. Got it.}

And then, finally, it ended where we started this mess, with mom. Because really, when you want to ease your child’s anxiety about something that’s happening to them, it’s really important to make sure they know that it’s having a really negative impact on YOU, no? (No. No, no, no, no.)

img_9798

{image is a page from the coloring book showing Sondi looking dazed and sad as her brother says, “Sondi, what’s going on? You scared the heck out of mom!”}

I decided to take a different tack.

I had found one thing that I really liked –> here.  The explanation of what a seizure feels like was simple, concrete, and, wonder of wonders, from the perspective of a child who experiences them.

I was, however, desperate to make sure that any information that I gave Brooke was helpful and not inadvertently hurtful or damaging. Since I don’t know what it feels like to have a seizure, I knew I wasn’t the one to discern the difference. Thankfully, I knew who was.

Kassiane’s help was invaluable. She explained a few things, corrected a few things (i.e. it’s not “too much electricity,” it’s more like some electricity goin’ rogue), and offered a hugely helpful dancing metaphor that you’ll see below, adapted so as to make sense to Brooke.

 Before bed last night, I read the story I’d written to my girl. She was riveted, and even giggled a couple of times. I later “caught” her reading it again on her own.

While it’s far from perfect, I feel like I can say that it’s a pretty good start. Because it makes the point that I wanted to make: That this isn’t about anyone else. It’s about her. About her feeling safe and knowing that no matter what happens, she’s going to be okay. And honestly, even if she just skips to the very last line, she’ll have all that she really needs to know.

Some people have seizures.

I have friends who have them sometimes – like my friend ** at school.

My mom has friends who have them too. Like her friends A and K. I see pictures of them online.

Every once in a while, I might have a seizure too.

I don’t have to be afraid when I have a seizure. My parents, teachers, and friends will help to keep me safe.

When I have a seizure, I might fall down. That’s okay. Hey, we all fall down sometimes. Even my mom!

So if I wake up and I’m on the floor, I don’t need to worry. I can just hang out there for a minute until I feel okay to get up.

Seizures are caused by something called epilepsy. Epilepsy can make my brain act kind of funny sometimes.

It might feel like when I’m watching TV and the picture gets all blurry and fuzzy and then goes back on again a minute later.

Or maybe it’s like part of my brain decided to do jumping jacks when it was time to do ballet and the jumping jacks made the ballerinas trip!

That’s a pretty silly way to think about it, isn’t it?

After a seizure, I may be pretty tired. I also might not feel so great. Sometimes I’ll have a headache or my stomach might hurt a little. Those things will almost always go away after I take a nap though, so I don’t have to worry.

When I wake up from my nap, I can even have some ice cream if that’s what I want. Because, hey, why not? I guess I could even have pickle soup, but that would be gross, so I won’t.

No matter what happens, I know that I will be safe, and that I am very, very loved.

Huge thanks to Kassiane along with everyone who sent resources, ideas, links and love yesterday. You rock.

24 thoughts on “explaining epilepsy 

  1. Time to illustrate, publish, and help the thousands of kids all over the world understand their brains in this gentle and accessible way for all ages and abilities.

  2. When my son was diagnosed with epilepsy, the book recommended was “Lee, the Rabbit with Epilepsy” – it dealt more with absence seizures than anything else, and it’s been forever since I’ve read it, but I don’t recall it being a scary book – worth a look see at least.

  3. Hi Jess.
    I’m a special education curriculum writer. I work for the company that makes Boardmaker. Are you familiar with Boardmaker?
    I wondered if you wanted me to post your text (as a book) in our Boardmaker Share Community. This way it can reach tens of thousands of teachers, clinicians, and families around the country and around the world. Let me know if you’d either like to do it yourself or I can do it for you.
    It’s a good book and evidently, greatly in need!
    Maureen Donnelly

    • Maureen, I’m very familiar with Boardmaker – we have relied heavily on PECS and other visuals at various points over the years. I’d be happy to have you post it as long as it is dated, credited and links back to the blog. Thanks very much.

  4. Jess, can I just say, YOU rock! I have learned so much from you. My kids are 21 and 19. I wish I would have found you earlier than I did. I wish, I wish that we had the resources and smarts to LISTEN to all children like you are learning and teaching those around you to listen to your kids. Kids are individuals with hearts and souls and brains. We all are. I wish we could learn to listen with our hearts, see with our souls, put those together and learn with our brains. Your example of what works for you and your family is incredible. More of us can learn from you. Thank you for inviting us and letting us learn from you.

  5. Wow.. what a difference the right words and right approach make to so many things in life. Thank you for sharing. We deal with a few health related issues and I love the perspective you put to this which is lesson for so many.
    Thank you for sharing this. Please tell Brooke as well how helpful all this is to so many people across the world.

  6. Oh, for the love of pretzels. That is all kinds of awful.
    On the good side, I’m betting a bunch of facebook followers are going to be writing their own non-freak-out-oriented educational booklets and hopefully will self publish or do a youtube video!

    I found a couple for you just in case you still need something:


    Very short, simple cartoon.


    Short, to the point, a bit sciency, being explained by a neuro guy

    Both are NOT freak-outy

  7. Jess, just an idea on how to help your sweet girl recognize what’s about to happen. See if she can remember and talk about how her face felt or what she smelt or tasted these clues can help her to get to a place where she is secluded. Once I was able to recognize when it was going to happen I was able to get to a private area and wasn’t so embarrassed at that age. Not that its anything to hide but other kids don’t understand and its also safer.I hope this helps you.

  8. Your story is great!

    I would say that if I were a SIBLING of someone with epilepsy, though, I would have appreciated a story where people were scared — because I would have been!! As the (aspergers) autistic in the family, a book where the characters were scared of the epilepsy (and learned what was going on and why fear was okay but not necessary, hopefully) might have helped me feel better about my reaction to someone ELSE having seizures. So maybe the books you saw were more geared towards family and friends. I like your story FAR better for someone experiencing epilepsy, though. 🙂 And I agree with the other poster — time to get a book published!

  9. Thank you so much for finally putting to words what so many kiddos have to deal with. Having my own daughter with epilepsy and being a teacher of many students who are also affected, your story could help so many!

    On a completely unrelated note, dill pickle soup is one of my favorites! A local restaurant makes it every Thursday and it is delicious! It’s like a creamy potato soup with dill pickles!

    • Lol!! I was going to write what we usually say to be silly, which is poop pie, but I thought that might be misconstrued. Lol

  10. Eisai pharmaceuticals partnered with Medikidz to create a series of comic books to help educate children and adults about epilepsy. Log on to this website to take a look and order free copies if you would like. They are in the process of making a 4th comic book right now. They have been well received and have helped so many:

    http://www.advancingepilepsycare.com/medikidz/medikidz-stars.aspx

    You can even download an app on to your phone, too. Best of luck!

  11. I’m new to seizures too. We still don’t know why I developed them but they have hit me very hard. I’m 33. I am college educated. I enjoy “doing.”

    I’m not working now. I’m not driving. I am fighting some difficult feelings of powerlessness, debilitating vulnerability, and the medications aren’t serving me well, either. I just had an appointment today with my doctor to put me on another med because I am losing weight fast on my seizure med.

    And the common social conversation about epilepsy doesn’t make make me feel any less powerless, vulnerable, or sick. They make me feel worse. They make it all worse.

    It would be nice if more of us were told that it’s about us, too, what we need to feel better and not what we need to be less of a burden. And that curly straws and pickle soups are always in season. I could use some pickle soup right now.

  12. I have followed you on Facebook for about a year or so. I admire your honesty while being so careful to protect your children’s privacy. I wonder most days how I manage to get out of bed, get my kids ready and off to school and make It to work all on time. Not to mention the everyday trials.
    I know you don’t share all the bad stuff but you seem like
    You have it way more together than I probably ever will. I admire you and your family. You have broadened my thoughts and ideas of parenthood.

  13. Jess, I have followed you for years, and I love you and your family. I am sorry you are dealing with seizures too. So hard, so scary! My daughter has autism, and started having seizures about a year ago. I would like to share that after all the initial testing, with no real cause identified, we have found some relief with adding prometrium (progesterone to counter estrogen) to her seizure med 5 days before her cycle and 3 days in. It has helped immensely (4 months seizure free). We did this after we tracked her seizures to discover a pattern indicating catamenial seizures (actually quite rare). Just tuck this away for future. I LOVE your story. You are brilliant!!!

  14. Because I know Brooke is a fan of connectedness and humor, I will add an addendum to your masterful story:

    There are also some Diary readers who have seizures. One is named Jenny and she lives in Maine. For Jenny, seizures feel kind of like pressing “restart” on the computer: Everything goes dark and quiet and then turns back on again. Once her brain is all done restarting it works just fine, so she doesn’t have to worry.

    One time, Jenny was shopping at Target when her brain acted kind of funny. She fell down and hung out on the floor for a while. When Jenny’s seizure was over, she realized she was lying on something soft. She opened her eyes in a giant pile……….of…………….underwear! Hey, at least she was shopping for underwear and not spaghetti. That would have been a mess.

    Jenny was very tired after her seizure, so she took a long nap and woke up feeling better. She did not eat pickle soup, because she thinks that sounds disgusting. She did snuggle with her dogs, because they help Jenny remember she is safe and loved no matter what — just like Brooke.

  15. Hi! I just found your blog a few days ago and have been reading so much. My son was diagnosed with Autism last October at not quite 4.5 years old. I was a member of a sorority that supports autism speaks but as an adult and a mother of an autistic child I needed to do some research into what I supported and that research lead me to your blog which I have been reading almost non-stop for 3 days. Gosh, I wish I could have seen this 6 months ago to find the comfort I needed at that time. I don’t have any epilepsy resources for you but I wanted to post a huge thank you for providing the resources you have through your experiences and the links on your blog.

  16. There are so many sucky books out there that are supposed to help kids that do anything but. I’d love for Jess to write a series on “being different” in general as well as this one on Epilepsy.

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