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. '
Seriously?
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.
::haha::
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.
Comments
My.
Gawd.
In today's world...those insensitive, stupid comments just blow my mind.
I would love a seizure dog for Rhett. Love, love, love! He has these moments when he stops and looks at me...with panic in his eye...I ask if he's ok and he says I'm fine, like he's in a trance....if I ask again he says it a little more forcefully and grouchily...and then says he feels funny in his heart. Aura? Seizure? Not sure. But I bet that wouldn't be enough for a that reporter....and I highly doubt any teacher would catch it.
Hope Trevy is doing okay and gets out of the hospital soon....with results that are better than you are expecting.
Hang in there Sweetie!
Fortunately, the law is on the parent's side. The school district apparently has lawyers who are more interested in racking up legal fees than doing what the law requires. All this at taxpayers expense!
Good luck with the EEG results.
Erin
There is a funny spoof on the Stupidity about Type 1 D and I am going to put it on my blog. Ignorance is not limited to Epilepsy, so we it does not discriminate.
...d
Not to mention that not allowing the dog to go to school with him is against the American Disabilities Act....... *sigh* Stupidity runs amok in this country I'm afraid.
But...something did jump out at me in this post. Where you mentioned that his teachers and therapists don't always see the clusters. I can so identify with that. I've always had the EXACT same battle with myself. Should I be angry that they're totally oblivious, or just inform them Austin's probably not interacting with them because his brain is seizing. UGH. Problem is, we've seen doctors that have completely missed them while they're happening. I've never known how to handle that.
I may just have to google this interview...
Sadly, Matt the Chimp is like many of the other people in the country...they just don't know jack or [CENSORED BY AUTHOR] about the condition or what it involves and it sucks that the only real financial powerhouse we have in our corner is one that forces us to take their expensive drug that works, of you're lucky, less than half the time.
Hell...even the Axelrod's can't seem to draw much national attention to the real issues surrounding Epilepsy as a whole, and they are in the [CENSORED BY AUTHOR] White House.
Sucks.
But it isn't just Italian blood. It's Italian blood mixed with Maternal, mixed with Special Needs mixed with Fed the [CENSORED BY AUTHOR] Up blood.
See? I can control myself.
I mean I know there are lot of people out there uneducated about so many things epilepsy related, and heck, just special needs related. But for it to be on television and to make it seem like the mother, son, and dog are the issue is saddening.
The boy is beautiful, and all Matt could do was look like he was diseased and bothered by him, and then to say how he obviously functions beneath his age....that would have got him knocked to his knees.
It just makes me worry what things will be like when Kylie goes to school...just because something is new to people (ie..having a seizure alert dog) doesn't mean that it isn't necessary. It just proves the height on ignorance regarding these catastrophic forms of epilepsy.
And there is no way that the teacher can do what the dog can do...for so many reasons. I just spoke with a woman yesterday and she watched Kylie's IS videos, and said she couldn't notice them....how do you expect a teacher to when they have a classroom full of kids.
Yep, you got us fired up. But even though it is frustrating, it gives us fuel for fighting for our kids in the future.
Sending hugs, and bench presses to warm up for Matt Lauer.
Were it me, I would investigate getting Trevy a dog sooner than later. There are waiting lists and training takes time. There are benefits to development for children who have dogs, so it might be more subtly beneficial than just alerting others to seizures. Plus the sooner you get involved, the sooner you will know what you will need to do in your home and at school to make a good transition into life with an assistance dog.