Friday, April 20, 2007

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.

42 comments:

golfwidow said...

Go, you.

Kate said...

Aaw, your Little Guy was such a cutie! Don't tell him I said that, at 16 he'll think it sucks - I know my 16yo would, which is why I tell him LOL

Anyhow, you go! I can fully understand where you are coming from. So, he can be a bit weird, can't we all? Too be honest, weird people I like, it's the 'normal' buggers who scare me.

The son of the family who live 5 doors away from us has autism (he's 17), and he's a nice kid. I really mean that. His parents are like you - there, come hell or high-water - and he's a credit to them. I bet people could say the same about your Little Guy.

Flamenco Mom said...

You go, girl. I'm totally floored by this post. I'm with you; yes, life is more challenging in some ways when you have a child with autism--or any disability for that matter. And yes, some days do truly suck. But I signed up to be this child's mother; and I don't really give a rat's ass about people's opinion of my child and her quirks. Stigmatized? I don't have the time to notice or care. Thank you for sharing this. Just want you to know I really like Holland too.

Philip said...

Great post!

So interesting and well written!

Keep em coming :-)

Beth said...

Read your post, wiped away the tears and now I'm saying this:
The "job" (or privilege) of being a mother is to raise our kids the best bloody way we know how. It takes love, commitment and determination. You're doing it. It can (at times) be a rough ride but the reward is unlike anything else in the world.
Keep swinging, mom.

Brenda said...

"Swing away" ATM, you've sure got some purdy babies there to go to bat for too!

Manda said...

You are awsome, ATM! More and more so every time I read your posts. I pray that if I ever have to face anything like this with any of my three, that I will have your strength.
Thats what it's all about. Doing the best job of being a parent to your kids no matter what your faced with....and like I said, Your Awsome!
It sounds like little guy has a bright future ahead of him thanks to his parents love and support.

Marymurtz said...

I've admired you for years, from the AOL boards to blogland--and this post cements the deal forever. I love the essay--I had read it when we were going through the adoption process.

I'm so proud of you it's almost embarrassing.

Miss Litzi said...

Hi Attila,
This is a marvelous post. It’s thought provoking, humorous, informative, and provides anyone who reads it an insight of exactly what a wonderful Mother and human being you are. I admire your strength, courage, wit, and your ability to face a situation head on and come out batting 400+ all season.

Chaos Control said...

Just found your blog today - and WOW, am I glad I did! Very honest, very passionate post. Thanks for sharing.

carmachu said...

Incredible post dear. You hit the head on the nail: You the mom, its your job.

Proud to know you.

mcewen said...

Perfect posting for Autism Awareness Month Huh! But everyone knows that right?
Best wishes

Em said...

I very recently discovered your blog and have been lurking. Had no idea you had kids with various special needs. And reading what you have to say here is quite moving. We have our own kids with needs - including one with aspergers. And I don't feel the least bit stigmatized as his parent! Geez...I can't believe that is their focus. That seems very sad. Very self-absorbed. Thank you for speaking up!

Annie Drogynous said...

You're a wonderful mom! Thanks for sharing!

Christi said...

You are absolutely my hero, ATM! I hope I can be 1/1000th the mom you are. You've definitely set the bar WAY high! :)

Jennifer McK said...

AWESOME!!!!!!!! I just discovered your blog recently and I love it. I should have known.

Kevin Charnas said...

"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."

Yes, yes, yes....I'm proud of you.

Special K said...

Well said, Attila. I've always wondered about support groups designed to help people cope with whatever stigma is associated with behaviours, choices, affictions, etc. All this time, I thought coping with what are essentially other people's erroneous assumptions, parochial attitudes, or simple misinformation and shitheaded ignorance was to ignore them and carry on with your life.

I applaud your realism and level-headed sense of accountability, and I admire your ability to approach what is a very challenging life with equanimity, humour, compassion, and love.

You're seriously a star.

elizabeth said...

Also proud to know you.

You rock!

quinn said...

Exactly!!!! you are his mom!!! And you and he will grow and triumph.

kim said...

You are awesome :) *biggest hugs ever*

yerdoingitwrong said...

What a beautiful post. So glad I 'met' you in the blogosphere. You impress me, darlin.
xoxoxo

Queen of the Mayhem said...

Amazingly insightful post....it is one of the best demonstrations of a parent's responsibility that I have read.

It is so easy to get caught up in how everything affects you.....it's nice to see that you really understand what is important!

Your son is lucky to have you as a mom!

imfunnytoo said...

Thank you for writing this

Rootietoot said...

Wow! Can I be your kid, too?

Oh, The Joys said...

What a wonderful post. I'm so glad you wrote it and shared it. I think he is lucky to have you for his mom.

abfh said...

Hi Attila, thanks for the kind words! Actually I'm not that young. I recently had to surrender to the overwhelming force of gravity and buy summer tops with built-in shelf bras. Sadly, I have outgrown the braless look. Or outdrooped it. Whatever. Anyway, I'm not going to pay anyone to implant water balloons on my chest for the sake of fashion.

On the Holland essay: Yes, it does a good job of getting parents off the pity pot and making the point that social expectations aren't everything. I'd say that the author was too passive in accepting the social constraints she describes, but then again, the essay probably wouldn't have reached as many people if it had taken a more radical tone.

Here's a link to a response to that essay, Farewell to Holland, written from the neurodiversity point of view.

I hope your brother's eye is getting better. (Too bad your brother's girlfriend didn't beat up the punk AND his worthless mama!)

krishanna said...

Hey ATM- Great post. And thanks for letting us know about yet another icky org that shames everyone involved. Yes,I am here.. just quiet.- Krishanna

Deb said...

I love your story and your attitude. I was lucky enough when I was married before to be a step mother to an amazing little guy with autism. He was mute for the most part, he only said hello and good bye. I had no idea your son was autistic, I know it is challenging, but it is also beautiful and I love your outlook on it.

Thank you for the lovely gifts, you are truly a lovely woman!

Kim Ayres said...

Well that one caught me off guard! When you wrote of Stigma, I thought I knew exactly where you were coming from. Having children with special needs means we become hyper aware of how people will try and put our child in a box and limit their growth and sense of identity.

Maybe this is odd to say after 9 years, but it has never occured to me that there would be a stigma about being a parent. This is as bizarre to me a saying there's a stigma attached to liking the colour blue.

WTF indeed!

The only thing I've ever felt I needed to combat as a parent was the attitude of other people to my daughter.

Wow.

I have discovered a whole new world of shallowness I didn't realise existed.

Sven said...

Atilla-

I intended to respond in the typical fashion but my reply quickly became too long for the comment section. You can read it here if you wish.

Sven

RC said...

i really appreciate your post, and have enjoyed reading about your journeys, sometimes serious, sometimes a ton of fun over the past year.

this is a fantastic post and i appreciate your heart.

Jod{i} said...

Absolutely wonderful post! May I use it in my training?
I facilitate a training for staff...
To make them understand behavior and individuals with diagnosis...To get them to let that guard down of all they were taught and leave it at the door, before they come in and work for individuals with disablities.
We, here at my work, have developed many support groups and we just recently had our first for Parents with CHildren dx with Autism and all the spectrums thereof.

I have been searching for parents and their stories, their take on the issue to include in my training.

This is for real..Let me know!
Peace
Jodi

mia said...

I love you.
I mean it, I really really REALLY love you.

sarala said...

Attila, keep on beating that breastplate of yours. You are generally right on.

Gonzo said...

I'm speechless... Thanks for writing all this...

Terri said...

Wow...
what a powerful post.....

powerful!

Ruth Dynamite said...

Yes, Attila. Beat that breast-plate.

Parents have their own needs when dealing with a child with special needs, but ultimately, it's not about them, the relatives, the neighbors, or anyone else. It's about the child. Hooray for you!

Ambulance Driver said...

Amen, Ma'am. You said it perfectly.

Sharon said...

I find myself defending my son's right to be autistic fairly often, even to someone who really should know better. Today my son, Duncan, was playing in our back garden and he was shouting out, a bit screechy. Sometimes he was screechy and happy and sometimes he was a bit frustrated for a moment or two, before he sorted himself out. He also sang loads of Disney songs and recited loads of lines from films as he scooted up and down. I was told (by he who should know better) that I need to teach Duncan not be so loud, that his shouting was wrong. He was a bit embarassed and worried about the neighbours. Well, I'd just been reading the BADD posts before this and went off about how it was Duncan's RIGHT to shout in his own garden, it's one of the ways he vocalises, since he is AUTISTIC!

I'm going to swing my bat too!
And I think ABFH is terrific too.

heartinsanfrancisco said...

I've never been here before, but you can bet I'll be back.

I love the way you cut through all the bs to what really matters, your child. I wish that all parents would realize that, both those with and without special needs kids.

When people stop believing that their children's job is to represent them to the world, and that public opinion matters, they will actually start to become the parents their kids deserve.

Kim said...

Thank you for bringing such nice posts. Your blog is always fascinating to read