Mamas Don't Let Your Babies Grow Up to Watch Pokemon

Before I started this post, I merely pulled up a blank box, waiting for my words to crowd it nicely. Before I had a chance to do so, I was struck with the idea to take a walk with my girl to pick up a couple of things at the store.  We spent about an hour out, stopping in the library to peruse, then stopping all along the way to browse through the local craft show downtown.  Humanling even took a photo in what I would call closer to my style of photography and I thought to myself...awesome.  If she can get away from linear perspective at this age, she'll be incredible by mine.

We had a brief chat on the way home regarding the School's Current Common Cold.  I mentioned that perhaps she could just not touch her face at school or wash her hands before she eats.  Suddenly she had this urge to shower as soon as we got home.  I don't mind if she gets a cold here and there.  She needs a few germs.  However, I'd hate for her defenses to be down and seizures to take the offense because of it.  Sneaky things.  They pounce on any weakness.  

We had a visit with her neuro the other week to go over the test results of her EEG.  It has been determined that she has Juvenille Myclonic Epilepsy (JME), so pull up another chair to the table, it's not going anywhere.  It was thought from the onset when she was around five years old that perhaps she may grow out of it.  It looks like this is not going to be the assumed path, but I refuse to stop believing for now.  Her meds (Lamictal) have been increased in increments for now.  So far I don't see too many side effects of that, thankfully.  Maybe more moodiness here and there but then again, what's a teenager without a side of moodiness?

In case you don't feel like hitting the link at the moment, straight off the website is a little info:

Juvenile myoclonic epilepsy (JME) is one of the most common epilepsy syndromes. It accounts for 7% of all cases of epilepsy. The seizures of JME may begin between late childhood and early adulthood, usually around the time of puberty. Fifteen percent of children with childhood absence epilepsy later develop JME. It also is more likely in people who have family members with generalized epilepsy. The intellectual ability of people with JME is the same as that of people in general.

Some people with JME experience seizures that are triggered by flickering light, such as strobe lights at dances, TV, video games, or light shining through trees or reflecting off ocean waves or snow. These are called photosensitive seizures. Occasionally, myoclonic seizures are also provoked by factors such as decision-making or calculations.

So, Great!  7%!  Yes, it's good to be rare.  

The strange part is that no one on either side of the family presents seizures or epilepsy.  It is possible that her father did have some neurological issues but that information is like going through a game of Telephone.  I don't think I'm going to hit the absolute truth on that, and if I did, would it change anything?

The part that really hits home is the photosensitive piece.  Riding in a car with Humanling when the sun is out and flickering through the trees is like texting and driving.  Although she may remember to wear her sunglasses and brim hat, sometimes she doesn't, and neither do I remember to remind her.  She enjoys looking in the rear view mirror and singing to herself, watching her reflection on many drives.  Murphy's law has it that whatever direction I am going in, it's the one where the sun is on her side and in her face.  Therefore, I am constantly looking over at her to be sure that she is not making an offer of her face to the sun.  Which she usually is.  I don't know why this is, I know it isn't possible that she's just being a rebellious teenager.  I think it is more like the charm of those damn Anne Rice vampires.  The sun just has its Come Hither junk going on.  If she gets "trapped" in the glare, she's pretty powerless over it.  If I bark out a "HEY!" she may jolt out of it, mad at me for shouting.  But with hands on the wheel, sometimes that's all I can do.  This is due to the Photosensitive sector of her epilepsy.  More on that Here.  

It turns out that this Photosensitive seizure activity can happen to people in which no epilepsy has ever presented.  Let's remember the Pokemon movie in Japan from 1997.  Check out my awesome copy & paste skillz from Wikipedia on the subject:

The episode is infamous for using visual effects that caused seizures in a substantial number of Japanese viewers, an incident referred to as the "Pokémon Shock" (ポケモンショック Pokémon Shokku^?) by the Japanese press. Six hundred and eighty-five viewers were taken to hospitals; two people remained hospitalized for more than two weeks. Due to this, the episode has not been rebroadcast worldwide. After the shock, the Pokémonanime went into a four month hiatus, and it returned on TV Tokyo in April 1998. Since then, the episode has been parodied and referenced in cultural media, including episodes of South Park and The Simpsons.

Freaky huh?  Imagine being in the theatre with THAT.  Never being exposed to epilepsy before, I know in 1997 if I was in that theater I would have thought terrorists were gassing the place.

Due to my own experience with Humanling's photosensitivity, I now view driving with the sun filtering through the trees in such a reactionary way now that even when she isn't in the car, I am skittish about it.  

So did the new diagnosis help?  It certainly doesn't change what Is.  But it does help to know what is in store, On Paper.  

Reflecting on Projecting Limitations

I'll admit there are plenty of times that I become annoyed with little acts of clumsiness.  I can't tell sometimes if my Humanling is being deliberately careless, if epilepsy is playing some role or (as if!) it's simply an accident.

Her Highest Spill Rates (HSR) are generally whenever I am in a hurry.  Such as before getting her on the school bus.  It's already a challenging job with her in the mornings since that is also her most susceptible time for a seizure.  If she's up for ten minutes without one then we should be set for the day.   Right before writing this post, I myself doused my chin and the stove with coffee.  I thought I'd be swift and finish what was left in the cup.  Since there is a cover on it, I can't really tell.  Swilled and spilled.  It pulls my awareness toward Patience, Danielson.  Indeed, I need to stop assuming there was a worldwide dastardly reason for spills.  

There is an awareness par-TAY going on up in here on a constant basis.  What I'm super aware of is that I probably don't have even one millionth of the capacity of eye opening that I am capable of.  

Humanling is in the 8th grade (ah, good times. My favorite year to be a total eff up and then pull it all together by the end of the year to pass with good grades.  As the guidance counselor said to me back then, "I like you, but I don't trust you."  Wonder what effect that had on my psyche!)
She is into all sorts of things that I wasn't, and I'm my gratefulness is mingling with a bus full of awe.  She came home saying she wanted to run for Class President.  I don't know about folks who are dealing with their own special needs kids, or even epilepsy for that matter, but I can tell you that my first impression is that I thought it was way over her head.  Class President?  PRESIDENT?  You can't keep your binder organized but you want to do this? You can't even stand in sunlight without it immobilizing you if it's in your eyes.   I certainly did not say these things.   Instead, I asked her, "What's your *thing*?  Your cause?  What are you bringing to the table?"  She replied that they should vote for her because she's cute.  

"That's what a beauty contest is for.  You'll have to think of something else."

She spoke with her dad on the phone, and then he talked to me for a bit.  A good course would be for her to be open to polling, and then moving forward with what the Good People of Eighth Grade wanted.  She made her posters and hung them up.  

Meantime, I was doing some weighing of my thoughts and what was right or fair.  It seems that I had already doubted her from the moment that she mentioned she wanted to run.  It seems that with her epilepsy, my instincts, whether I say anything or not, is to think about what she Can't do, which is hardly fair.  I thought to myself that she needs this experience.  If anyone handed my current list of job responsibilities to me and I hadn't done the job, I'd probably shy away from it and go be a waitress.  I had to jump in and learn.  I don't have a college degree within a corporation where you usually won't get hired without one.  I was lucky to scoot through back in 1997 and prove myself as a temp before being hired in 1999.  

So it is possible here, to just let her follow her own path.  Sure, run for Class President.  She has gotten now the experience of oral presentation by writing and delivering a speech (something at the age of 13 would have just sent me for a shovel in which to dig a grave for myself).  She has gotten to think up a just 'cause' for her classmates.  She's gotten to design and hang posters, being immersed in the experience of it all.  I have zero experience in this.  She has superseded me on this one and I am really proud of her. 

Putting limitations on her creates the elephant with the rope syndrome.  When elephants are young and being trained, a rope is tied to their foot with the other end being tied to something immovable so that they are securely tethered.  Eventually they associate this rope with being immobilized so that all you need do, is tie a rope to their foot and leave the other end loose.  They believe they can't go anywhere, and so they won't. 

I have no idea yet of the outcome, but am amazed that she tried.  Instilling a sense of motivation and nurturing it will do wonders for her, as will dealing with disappointment and failure, as will becoming Class President.