Chicago, May 23, 2008
Okay, so it wasn't actually canoodling, but it was an extremely cool chance to meet Jenny McCarthy, have her sign my copy of her book Louder Than Words, and beg her to tell Jim Carrey that my autistic son is his biggest fan. Very cool indeed.
Being the busy mom that I am, I didn't actually get a chance to read Jenny's book until I got to Chicago. But I couldn't put it down. And once I read it, I had a newfound respect for this woman who is still working diligently to recover her son, Evan.
No matter what you think of Jenny, you owe it to yourself to read her book. I don't usually get too worked up over seeing celebrities because they are just goofballs like me that happens to have a job in front of the camera. But I was honored to have my picture taken with Jenny because of the attention she has brought to autism, and I respect the way she's using her status to bring attention to this epidemic for us all.
When Jenny was on Larry King, I was, literally, standing in my living room, screaming at the tv for them to "Let Jenny talk!" because she was speaking for my child and the one child diagnosed with autism every 20 minutes.
If you've never been to an autism conference, you must find a way to go. My first autism conference was the DAN! conference in Virginia in April of 2007. I was so green. But my angels were watching over me and I volunteered through an autism listserv to room with a mom from Illinois, whom I had never met. I was nervous but something told me I was supposed to go. Karen and I hit it off right away and she knew ABSOLUTELY everyone. She introduced me to Dr. Phillip DeMio, from Columbus, who has been my son's DAN! doctor ever since. And thanks to Karen, I had dinner at that conference seated next to Dr. Jon Pangborn, who worked with the late Bernie Rimland, and to whom we owe so much of the awareness and treatments of autism.
I was overwhelmed at that first autism conference, but learned enough to get started on the GF/CF diet, ABA therapy, and biomedical intervention for my son. And also gained confidence in my own ability to research and understand autism because it's the mothers who are leading this charge against autism, unsafe vaccines, and an unweilding system.
It's not easy to fly across the country, leave your children, and spend 24/7 living, eating, and sleeping autism. It's mentally exhausting. But you learn so much. My MRDD money helps pay the cost of the conference. The rest, I write off on my taxes. The experience is priceless. I happened to be standing in line to get coffee yesterday morning and struck up a conversation with a lady. We started talking about my son. Turns out, she's Kim Stagliano, Editor of the Age of Autism, and she pulled out a business card and started writing information on the back about a doctor at the Cleveland Clinic that I should take my son to see. I mean, really, what are the odds?
I spent an entire day learning IEP law, then the next 4 hours planning how to use my newfound knowledge to fight for the educational services my son is being denied. This morning, I ran into my son's DAN! doctor, who happens to be speaking tomorrow morning and he took me to breakfast! Over eggs and sausage we discussed HBOT treatments, the Cleveland Clinic, and chit-chatted about how our sons were doing. Then he picked up the check. It's opportunities like that that you don't find anywhere else but autism conferences.
By the way, Karen, the same mom I roomed with a year ago, is here at this conference. We picked up right where we left off. Plus I've met some new moms from across the country. Leslie, who came from California and has a 19 year-old son with autism, looked absolutely hillarious at our little spa night last night. We took a break from the stress of the conference to treat ourselves to hors d'oeuvres and a facial. Seeing her with green goo all over her face and white lip masque on was too much to take and I completely lost it. Nevermind that I had the very same goo on my face. I do hope she wasn't offended. There's a lot of emotion here. Tonight at the dinner, it was announced that one of our own, a little girl with autism, drowned in a neighbor's pool just this week. Absolutely devastating. But there's also a great warmth when you look into the eyes of another parent and you both know why you're here.
There's a certain comfort in being among people who get it. These people certainly do. It's been standing room only for many of the talks. Though it's disheartening to realize why we're all here, there's power in knowing we're together in this fight. I no longer feel like one little mom in Ohio fighting all alone for what I feel my son needs. I have this entire army of parents fighting right along side me, lead by the most unlikely of people; Jenny McCarthy. And I'm so damned grateful that she's here!
Please take a moment to check out Autism One at http://www.autismone.org to download segments of this year's conference, and years past. And mark your calendar to attend an autism conference or two. It's well worth it!
- Submitted by Nancy Bernotaitis, DAS President
