One in 26 may develop epilepsy in their lifetime. My work from home day, complete with hot coffee and a yummy croissant stuffed with an acre of cream cheese....heavenly. I had Morning Joe on as I usually do. And then I heard them talking about epilepsy, which of course had me turn around to pay attention.
Susan Axelrod was on talking about the latest news dealing with this disorder. A parent can't help but cry when another parent opens their heart about their epileptic child. In this case, that would be Mike Barnicle who is also on Morning Joe. It is amazing how many people have this disorder and it seems that there is a giant hush over it. I suppose it isn't something we exactly wear on our wrists (Oh wait! We do! Humanling has a fabulous epilepsy bracelet!). But in general it feels to me to be a more quiet affliction. One that people don't always want to admit to dealing with.
I worked with a man recently who was temporarily stationed with us at work. I was training him and therefore sat with him all day long. You get to know a lot about a person in this way. I mentioned my daughter's epilepsy and he said to me, "Only because you mentioned it, I will share with you that I also have epilepsy. But I don't want anyone else to know." His seizures were more petit-mal in nature and he said that he could control them in such a way as to induce pleasurable euphoric effects - especially when listening to music. We would trade music back and forth daily for awhile - a Song of the Day to introduce each other to new things.
But it was obvious that there was something 'different' about him. And everyone else noticed. It would be mentioned that he didn't seem to be "all there". Only I knew about his disorder, and I felt bad for him. How people viewed him really haunts me. This is how people may view my child someday....or now even. She isn't stellar in school. In fact, when I see people post their kids getting awards for honors or sports or whatever activity, I realize that if they had an award for the child who tried really hard to not do any work, Humanling would have a wall dedicated to them. I have and am still learning to accept what is....and her perfection in who she is, not her perfection in standardized tests.
She doesn't understand schoolwork quite as easily as her teacher this year would like her to. She feels that her teacher actually doesn't like her, and to be honest from what I've seen, I can't say that I think much differently. She is in special ed....but will be integrated into the mainstream...the faster pace....next year.
She learns things but sometimes she has unlearned them within a day. Especially with math. Sometimes I wonder if it has anything to do with the brain's memory due to her condition. She used to have petit-mals herself, and still gets them in the sunlight. Her teacher wasn't very sympathetic.
And so it's a constant guessing game. Is it the meds? The disorder? The teacher? My child? Yet she will learn something if she is obsessed with it. The things it seems she has learned the most may really just be the things she learns from me. We share a sense of humour, although hers will blossom into the R versions later on. I try to grab every teaching moment that I can.
Case in point: She says things about walking around outside alone. My solution: To bring up Etan Patz. So I have a dramatic flair when I'm making a point!
She may not always be great in school but she always manages to make me laugh on a daily basis. I hear some pretty zany things from that mouth of hers and while other people may be grasping for the punch line, I am beaming with pride, that she is perfecting the trait of specialized humour, that my dad passed to me.
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