Tell mommy to turn the Today Show on right now
Was the relayed message. Jonathan had called from the hospital (he always does the overnights for me) and passed that message through Toby. I was busy dancing the morning shuffle and couldn't make it to the phone.
But at his prodding, I paused mid-lunch packing and sat to watch the Nancy Stevens segment. Because it hit close to home. See, Nancy Stevens is not a movie or rock star. She's a mom. And her son has a seizure disorder very similar to Trevor's. A seizure disorder which Trevor's EEG was beginning to remarkably resemble. Lennox Gastaut Syndrome.
All this bruhaha over a little boy with catastrophic epilepsy requesting his highly trained Seizure Alert dog be allowed to stay by his side throughout his school day. '
A couple phrases (which are not going to be verbatim but feel free to watch the linked in clip to make sure I'm keeping the context accurate) boiled my Italian blood and sent my imagination station into overdrive with images of me vaulting through the television screen right into the studio. Where Lauer's mug was glowing with a bullseye. And my fist was itching to leave a mark.
He had what looked like a "mild" seizure...
SAY WHAT?!?!?!?! I'm pretty sure that's when I spewed java. If I could've wished a seizure on anyone's kid in that moment... Let's watch your kid have a seizure and see if you're still defining it as mild! I'm not always Miss. Gracie Pants. Good thing I'm not God, huh...
This one was a goodie...
He's twelve but let's face it ::pause:: he functions MUCH beneath that...
And you base this assessment on what? The handful of minutes you spent with him? Clearly from a distance since you're such a germ-a-phobic pansy. I'm no FBI profiler but your disgust was quite obvious. And until you have a Neuro-Psyche degree I suggest you keep your freaking judgments on my child's (or anyone else's) intellect to your self!
And the clincher...
Can't the teachers preform the same function as the dog?
No. (I may have been tempted to mentally insert some colorful language here) They can't. For a multitude of reasons. And not just because most of the classes I'm familiar with are understaffed. But that is one of them.
I have with my own eyes watched teaching staff entirely miss not just a seizure, but clusters of very obvious seizures. I remember sitting in Parent-Child groups and debating in my heart between "should I tell them he's not responding to their request because he's clustering" or do I stand up and scream "how can you be MISSING this"?!?!?! This was my personal observation over the course of a year. The same teachers. The same child. The same seizures. More missed than seen. I would never have trusted him in their care without my eyes in the other room. And this was a large part of my passionate request for his 1:1 aide. Miss. May May is kinda like our version of a Seizure Alert Dog.
Trevor has been subject to every seizure type that is known. Some of them appear very mild (to the ignorant eye, which should not be confused with the very un-mild damage being done inside his head) it is true. Yet, the thing with catastrophic epilepsy is that you never know. It is progressive. The seizures will evolve. I have spent every day of the past three years wondering if today is the day. Is today the day that I'm going to have to call rescue because my son's body is terrifyingly convulsing and won't stop despite rescue measures. Are those sirens heading to his school? The school's number on my cell phone always makes my heart drop. Is today the day that his brain is in the midst of a catastrophic electrical storm but the only evidence is he seems tired. And yawns himself into a sleep from which he'll never wake up. It has happened.
And despite Mr. Lauer's skepticism, there is science backing the idea that the body releases a pre-seizure odor up to 30 minutes before onset. Which alerts the dog. Who will then alert those around the child.
I find it ironic that no one questions animals ability to predict the onset of severe weather and yet raise an eyebrow to the idea that a dog can sense a seizure looming.
It has crossed my mind more than once to investigate a Seizure Alert dog for Trevor.
And if I ever do...you can bet your last penny that they'll be heading to school together!
Click here to read about a little girl's life with her Seizure Alert Dog and to find more information regarding Service Dogs in general.