Stigma or Stigmata?

During the last year since I've become a blogger, I've come to look at the whole endeavor as a journey.

On the road you gain new insights by reading the thoughts of others and maybe change some of your thinking.

You make new friends, you care about them and their lives, and hopefully you can share some what you've learned from them and let them know how their views have affected you. I hope you all know how much I value you and the alternative windows you've shown me when inviting me into your worlds!

It's not all giggles or rants or grins. You find new bloggers---other bloggers suddenly find you---and usually you find each other in the middle of these journeys. And sometimes when that other blogger writes something they feel is personal and important, you don't get it and you wonder, "what did I miss?"

So---for those lovely readers who haven't been reading long-term, I'm going to provide a little linky back story to explain my next thoughts. Those of my older blogging buddies can skip down, because you've all been there, done that with me already.

This post is going to be long and a bit emotional. It was triggered by a post I read earlier this week on the blog of a young woman who I've come to admire very much. I've been working it and re-working it while wondering if I should just throw it out or not.

So grab a cuppa for the ride, or back out. I promise I won't be offended. You can feel safe walking down a dark alley. A slipper of doom won't come flying out of nowhere and bounce off the back of your head. ;-)

Recently a blogging buddy in Europe who has become dear to me received a diagnosis after an evaluation that both of her sons have Asperger's Syndrome. AS is a form of high-functioning autism. There's been a lot in the U.S. news lately about the "epidemic" of children who have been diagnosed with autism, but better bloggers than I have addressed this, and it's not really what I want to talk about.

For those don't know what autism is, google is your friend. ;-) There's a spectrum from low-functioning to high-functioning.

I hate to say it, but it seems that when some of the general public hear about autism, they think about the movie Rainman, and believe that those who have autism are for the most part "retards" who can perform amazing parlor tricks.

Yes, that's unbelievably crude. But that's been our experience.

It's not other peoples' fault. If you don't live with it or have to learn about it, Rainman is simply a reference.

Over the years we've been asked quite a few times--"well what does he DO?"--as if our Little Guy, who has autism, can guess the number of pennies in a jar in a locked room two blocks away just by hearing somebody thump on the lid over the phone. Blindfolded and with his arms tied behind his back, no less.

[sigh]

So essentially, this post is mainly about Stigma. But not in the way you think.

Before you go on, here is what I've written about our Little Guy, just so you can get a better picture of our life.

When he was first diagnosed by a team at a disability center connected to a University Hospital, we were told that Little Guy was "profoundly mentally retarded and would probably never be able to communicate meaningfully". Their prognosis was that his development would probably "top out" at the age of 12 or so. But of course that was speculative. Nobody but Miss Cleo can predict the future.

I refused to believe it.

He was echolalic (only repeating words and phrases over and over again), and physically average. He was 3, and we placed him into an early pilot special-needs preschool program in our school district.

Within a few weeks, the class speech therapist called me.
"Do you have any deaf people in your family?", she asked.

Well---uh no. Why?

"Because we've observed Little Guy using limited but appropriate American Sign Language to try to communicate with the other students."

That's when we knew that he was fighting to be heard.

We never figured out where he learned it---the best guess is that it was likely from Sesame Street. When he was reevaluated later, his diagnosis was changed to autism.

But the tale of how he learned to talk and how we almost sued our school district to get him out of their horrible self-contained-so-called-"inclusion" program is one that deserves its own post and cuppa some other day.

I felt really really devastated for a while after the diagnosis. When my older son was diagnosed with his disabilities a year earlier, I kept telling myself, "I can deal with this. We can deal with this. Thank God Little Guy is perfect."

Hey, I was like 24 at the time. I was young and more than a little stupid.

I just had to learn that Little Guy IS "perfect". What needed to be changed was MY idea of "perfect".

So I got educated. I got involved. Another parent gave me an essay that put everything into perspective for me. Yes, other people might find it sappy. People who have disabilities might find it diabetic-coma-inducing.

But it changed my life. I got off my pity-pot and got motivated.

I signed up to be trained as a professional advocate. I worked as a family connector---helping families with new disability diagnoses find circles of support within their communities. Hubby and I got involved with Little Guy in everything we could--to help prepare him to live the best life possible. Brain gym (Kinesiology), swimming lessons, choir, cooking instruction, Barbies, art lessons----anything he showed an interest in, we tried to go with it.

Above I talked about a fabulous young woman whose blog I read regularly. I've learned so much from her (and from the people who comment on her blog) in the last year. We might disagree with some semantics, but I'm just a parent raising a son who has autism. She lives with it, it's part of her. She's an amazing and articulate advocate. So she wins.

Anyway, last week, she wrote a post about Stigma. About how a national organization wants to raise Autism Awareness to help erase the Stigma of Autism.

Hey, I was with her! Sign me up! Maybe if we raise awareness, people might stop expecting Little Guy to balance a plate on his nose, and juggle a bunch of turnips while playing Handel's Messiah with his toes on an accordion as he barks like a dog in harmony when they hear the word "autism".

But no. This organization apparently isn't actually interested in erasing the stigma for those who have autism. They want to make parents feel less stigmatized for being the PARENT of a kid who has autism.

So the very point of my long and rambling post is...WTF? I'm completely flabbergasted by this.

Yes, things might be harder in some ways, but I'M THE PARENT! I signed on to this for good or for worse when I decided to start a family. I'm entitled to have my moments of despair, but who the f*ck is kidding who?

Worry about the "Stigma" of having a child who has a disability? What kind of self-indulgent bullshit is that? Yeah, as parents we can wallow and waste a hell of a lot of time trying to find an environmental cause (God FORBID it could be genetic!) instead of focusing on what's already here and what really matters. Or who really matters.

My child.

How is he going to live his life? How is his life going to be? What will be the quality of his life---not what I think will be best for him---but what he wants for himself? What does he want to be when he grows up? Who does he want to be? How does he envision his life in the future? What are his hopes and dreams? How can we help him achieve this? What kinds of helps or skills or training will he need? What safeguards do we have in place in case something happens to us?

I don't give two shits about what my friends, neighbors or strangers might speculate is swimming around in my gene pool.

Because it's not about ME. It's about my kid. And that's the way it's supposed to be. I'm not going to hide him away in shame, or parade him around as a cross around my neck so people can pat ME on the back and say, "Oh you poor courageous Mommy, you."

I decided to bring a life into this world. I stepped up to the plate, and dammit, I better swing. And swing. And swing.

I better swing my heart out.

It's my job. I'm his mom.