Monday, May 24, 2010
ASD & Seizure's our Reality - Part I, Let the Journey Begin
I've written about Nicky's grand mal-siezure; how his body shook, his eyes rolled into his head, he gagged and then when limp. I've shared that in the second he was limp, I thought he was dying, really dying, as in gone, and autism was the furthest thing from my mind.
When I knew Nicky was okay, I sobbed like a baby and within 24 hours I was back in sync. I picked us up, dusted us off and life quickly returned to what I knew; the day to day routine of living with autism - not seizures.
I wanted to believe that his seizure was a one time event brought on by Nicky's simultaneous bout with pneumonia. So I learned just what I had too, and no more.
Earlier this year, Nicky seized again and I was reliving the past. I was jolted out of my denial around Nicky's autism and now I'm being slapped in the face with a new diagnosis of seizure disorder. A new thing, a big thing, another life long thing. DAMMIT! Here I am face to face with the grief that keeps on giving and there is nothing to do but take it on. So I will. I am still a student of autism, and now I get to become a student of seizure disorder. Whoohoo...not!.
Okay, let the journey begin. A large percentage of children diagnosed with ASD have abnormals EEG's, even if they have never had a recognizable seizure. There is a seizure called an absent seizure that is detected with an EEG. We need to get the word out to help families learn more about abnormal EEG's and seizures. Nicky is being treated by a great physician Dr. Michael Chez (he has a book out if you want to read more) who has helped us learn along the way. In keeping with my motto "Information is Power" and focusing on the good to keep me sane I'm gonna dive in and share what I learn, when I learn it.
In the next few days I will begin posting a series called "ASD & Seizures our Reality" which will follow this journey. Please pass it along to anyone you think it might help.