A Mommy Blog About Raising Men, Not Boys.

Wednesday, April 03, 2013

I Didn't Light It Up Blue

Autism Awareness Day came and went. I was somewhat medicated on this day, as I broke a toe (more about that later). But, I struggled with the day, with the month, for the weeks leading up to it.

My best friend summed it up on Facebook last night. She said "That's because every day is Autism awareness day for you."

That kind of nails it.

I used to know this blogger - well in a cursory way from her blog, we didn't hang out or anything), but she had cancer. And she would RAGE at all the pink. Screw you and your pink, she'd say on her blog. It puzzled me a little. After all, if I pinned on a pink ribbon, I felt like I was being supportive of her. I felt like, I was saying CANCER IS IMPORTANT AND WE SHOULD FIX IT. But, where she sat, it was just this never ending reminder of CANCER CANCER CANCER CANCER CANCER and as her hair fell out, and her body betrayed her by getting sicker and sicker, it was the last thing she wanted to see.

I get it, kind of, now. It's a weird sensation, having a "day" to recognize something completely WRONG in your life. And no, not one of you gets it. Unless you have a severely autistic child, or two, you don't get it. You don't get what it's like to spend most of your baby's first birthday kneeling in bathroom stalls to change your twins diapers. Your twins who are six. You don't get what it's like to have 8 year olds still in those diapers. You don't know what it's like to have to put on your makeup and work clothes and smile and pretend like everything is awesome and that you're hitting on all cylinders when one child insisted on singing until 3am in his room, for no reason. Perhaps a child has screamed until your nerves are fraught. That child is screaming about nothing. Or something you cannot divine.

Like all the wear pink events, having this awareness event is probably not doing anything about autism except make you think about it more than you are comfortable with. I'm here today to tell you why this is ok.

Because of the MACHINE that is Susan G Komen, we are AWARE of breast cancer. Yeah it's kind of mind numbing. But, I promise you - you weren't this aware 20 years ago. They made it a mission. I don't know anything about their finances but I'd be stunned if they were non-profit - but maybe they are. But what does this awareness do? It makes us SCARED if our mammograms come back bad. It makes us more aggressive about seeking screenings. It reminds us AD NAUSEUM that breast cancer is NO JOKE. Look, if it can kill Linda McCartney who had all the money in the world, it can and kill the rest of us if we aren't diligent.
And so we are diligent.

What will lighting it up blue do for any of us?

It's my hope that this become a machine - a FORCE. I don't care if it scares the shit out of people. Why? Because maybe you WILL get early intervention then. Maybe you won't deny it and deny it and deny it, only to have a doctor tell you one day what you already knew. Maybe it will cause parents to INSIST on better therapies at schools. Maybe if we simply THINK about it more - it will seem like something we must not only find a way to help our children with, but something we must learn to accept and create lives for them despite it.

Every year, I have two or three people come to me and tell me about symptoms their children have, wanting me to tell them it's not autism. Well I'm not a doctor, but guess what - it's ALWAYS autism. If everyone knew, like that lump in your breast, what they were looking for, how much BETTER of a life could their children have? If your child had access to services, and was simply treated for their needs and helped along their journey - wouldn't it be better?

We didn't know what we were looking for. We had an aching, heart stopping feeling something was wrong. It breaks my heart every single day to this day. But my Miles and Charlie are simply who they are. They are little boys with severe autism, and I am their mom.

And Autism Awareness is important. Not just for them. But for you, and for everyone you know.