Teaching and Informing the Very Young…when They are the Ones with Epilepsy
I’ve mentioned this before, but I’m not ashamed to say it again…I love prime time TV! Seriously, fall is not only my favorite time of year because of the gorgeous colors, the cider and donuts, the pumpkins and Halloween. It’s also the start of the new TV season, and I am an addict! Maybe it’s because of my former TV life?! I strategically plan my day to make sure I can catch my select shows on the nights they air. (You’re probably thinking right now…what a terrible example she sets for her daughter!!)
Anyhow, one of my favorite shows is “Parenthood”, which airs on Tuesday nights on NBC. The characters are diverse, the stories are impeccable and I’m so fond of how they tackle some pretty tough issues. If you watch, you are probably familiar with Christina and Adam’s son, Max. He lives with Asperger Syndrome, which is described by some doctors as “high-functioning autism.” It is a very real condition that can have a significant impact on affected families, like the fictional Bravermans of “Parenthood.”
In Tuesday’s episode, Adam came to the realization that Max doesn’t know he has Asperger’s, and as he said to a group of parents gathered in a circle for a support group meeting, he dreads the day he must tell Max about his condition. How will he explain it? What will he call it…A condition? A disease? A disorder?
I began to think…does the same hold true for children who are diagnosed with Epilepsy at a very, very young age? When exactly do you tell a child about his or her condition and everything that comes along with it? Granted he knows when he’s not feeling well, but as a young child, can he understand what it is that’s making him sick? I know all of you who are parents of children with Epilepsy can pass along many stories of how you eased your child into this life of understanding his or her Epilepsy.
As a parent with Epilepsy, who has a healthy child, I didn’t hesitate. My thought was, she was ‘born into’ this life, so to speak. It won’t do me any good to hide any of this from her. I’m sure there are some who would disagree with my approach, but for us…it has worked.
When I was diagnosed, it was devastating, at least at first. I had NO idea what Epilepsy was, nor did I understand anything about seizures. It was a total learning experience for me, my then-fiance/now husband and my Mom, not to mention the friends that stuck with me. It seemed that with every seizure came knowledge.
Lots and lots of resources are available from the Epilepsy Foundation of America. Also, you can contact your local affiliate for help and guidance in talking to your kids about their Epilepsy. There are some very good books that over the years, I’ve had doctors recommend to me. “Mommy, I Feel Funny, A Child’s Experience with Epilepsy” is one of my favorites. It’s even helped me explain to my 5-year-old daughter who doesn’t have Epilepsy, what exactly it feels like to have a seizure and how it affects her Mom.
"Mommy, I Feel Funny" by Danielle M. Rocheford
It’s a very tough subject, and I know we all have different methods of tackling it when it comes to our family. Watching a program like “Parenthood”, although fictional, is eye-opening and somewhat helpful. I respect and admire NBC for tackling Asperger’s. And I know I’ll keep watching!
For information on Asperger Syndrome, click here: http://www.aspergersyndrome.org/Home.aspx
One Response to “Teaching and Informing the Very Young…when They are the Ones with Epilepsy”
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spooky
December 11th, 2011 at 9:11 pm
Boy, this is a hard one. When I had epilepsy as a kid, my grandparents were raising me. They were born in the eighteen eighties and did not have an inkling of a thought about what was happening to me. When I got my new mom, she reconized epilepsy and started to get treatment for me. All I knew was that three times a day I had to take medicine and sometimes I would wake up and feel horible from having a seizure in the night or early morning. I kind of stumbled around with it in school. I wish that somebody could of sat down and told me that my life would be alittle different than other kids. I don’t know if I could of understood all the things but some of them and maybe some tips about how to deal with other kids in school since that was the one place I had to deal so much with epilepsy and me. My vote would go to giving the kid a little more credit and give them some information that would help them understand the hows and the whys. Thank you for letting me get that off.