Thursday, September 17, 2009

Pride, in the name of love

Do you ever wish you could live your life over and erase all of the mistakes you’ve ever made? You don’t? Neither do I. My mistakes have made me who I am, quite possibly more than the “good choices” I’ve made.

No one’s perfect.

Today I read something that literally broke my heart. It’s a nasty ~albeit possibly true~ at least in part~ article about Autism Speaks. Specifically where they put the money we all work so hard to raise.

Want to read it?

Are you sure?

Click here.

In a nutshell, it says that Autism Speaks pays their executives too much and doesn’t give enough back to the families. I mean, of course it does. It’s true.

But this broke my heart for many many reasons.

Reason number one: I have spent 2 years of my life dedicated to the Walk Now for Autism. When I say, “dedicated,” you have no idea. Let me give you a clue. Luke hasn’t had clean pajamas in 3 days because I simply cannot catch up with laundry. I could fill the rest of the internet with how much I do, and I’m not saying that to toot my own horn I’m saying it because, it’s just true.

Reason number two: every moment, every single moment I spend on this walk is time I am NOT spending with my children. And so, this is the question I have been asking myself for quite some time: I know I’m doing a lot to help with autism, “out there,” but how am I helping autism in my own home if I’m plopping Luke in front of the TV so I can take a 2 hour conference call? *Sigh* Don’t have that answer. Well I do, but if I say it out loud I have to own it.

Reason number three: in an effort to maintain my deniability I tell myself on a daily, sometimes hourly basis, “it’s for the greater good.” I think what the article showed me today is that maybe it’s really not. And if it’s not, truly, if it’s not for the greater good, then it would seem like I’m just flat out robbing my family and myself for no good reason. Again, not quite ready to own that.

Reason number four: My gut told me all of this a long time ago. I just didn’t listen. Circling back here to the mistake bit.

Four reasons is enough so let’s move on.

Why did I get involved with the walk in the first place? Because I was desperate to meet other families, find other people who were in this sometimes seemingly sinking boat right alongside me. Because I want to be “at home” with these people. Because for one day, just one day out of the year I want to walk alongside thousands of others and have them look at me and think, “I am not alone.” And as we grew and Luke changed and overcame so much, I wanted people to look over at him and say, quite simply… “It can be done.” I wanted people to look at me and look at Jeff and say, “If they can do it, we can do it too. They’ve been to the dark side and are crawling their way back but…. .they’re ok.”

Guess what? I’ve done all of those things. I really have. Gosh I have met some utterly amazing people. People who have touched my life, and inspired me and changed me. Pat Galland I am talking to you. Emily Frimel I am talking to you. Evan Farmer, I am talking to you. Kathy Streng I am talking to you. Michelle Begley I am talking to you. Steve Abernathy, I am talking to you. There’s so many, so so so many more.

So why do I give a shit that the head of all things science research at Autism Speaks makes almost $700,000? Oh yeah, because it would take Tennessee almost THREE YEARS of walks to raise that much money.

It’s OK, I”ll wait while you clean the puke off your keyboard.

But for me, that’s just not the point. Never has been.

I’ve read other smack articles about Autism Speaks before. Lots of them in fact. I mean there’s always people out there wanting to complain and smear a good name. All along I’ve said that other organizations are upset because AS is the biggest and the most powerfulest and CAN’T WE ALL JUST GET ALONG? There’s enough autism out there for EVERYONE to try to fix, really!

In all fairness, I have to say, there is NO other organization in the WORLD that does more for autism awareness. Period. You can’t find anyone to argue with that. May not like HOW it’s done, but it’s done. NO other organization does more for the scientific research behind and inside autism. Don’t think anyone will really argue with that either. I’ve seen it right here in our backyard. Autism Speaks gives millions of dollars in grants to Vanderbilt. And Vanderbilt does studies that, if you qualify, can get you a lot of services FOR FREE. And THAT is helping families. (and helping Autism Speaks………..geeze I need to just stop)

And back to me. What am I going to do? My heart is broken here……. Somehow I feel personally betrayed by all of this. I feel duped. I feel like Autism Speaks broke my trust. Where do I stand? Do I see this walk through? It’s only 29 days away after all. I’m the chair of it all. If I walk away now… I mean I’m truly jumping off of a sinking ship. What kind of captain would I be? Or should I say.. “forget it!” I’m not giving Autism Speaks another moment of my time?

Oh yeah.

I’m not doing this for Autism Speaks. I never was.

Pat Galland, I’m doing this for you. Emily Frimel, I am doing this for you. Michelle Begley, I am doing this for you. Steve Abernathy, I am doing this for you.

Luke Schmidt, I am doing this for you.

Because if nothing else, if nothing else in the whole wide world, on October 17 I will walk alongside you as the proudest mama ever in the history of proud mamas. Because I want all 3,000+ people to look at you and be as inspired by you as I am.

That’s what I’m in it for. Autism Speaks……….what are YOU in it for?


Mary Lindsey / Marissa Clarke said...

My son has Aspgergers. This breaks my heart. Good for you for hanging in there and sticking to your commitment for the right reasons. This kind of thing makes me sick. Sorry you gave so much of yourself while others abused the system. At least you give for the right reasons. They certainly can't say they take for the right reasons. God bless you. Your boys and blog are beautiful.

Alicia Walker said...

Oh, I wish I didn't know about the head of all things in autism research made that much money off people's struggles. Yes, that makes me sick.

I have 14 year old with Autism and learned a while ago that there is already awareness. Everyone knows there is a problem. Everyone knows someone with Autism. And so much talk on it turns it into white noise. More money into awareness isn't an answer. More talk isn't the answer, and money into administrator's pockets isn't the answer. I hate the idea that everyone is walking and raising money thinking it's going into studies, trials, and working with the kids and is instead funding someone's vacation home in Hawaii.

You are a bigger person than I. You still see the good. I won't participate in talks or walks. I will work with my child and those close to him to get him the care he needs. He is the only one I am responsible for (and my other three kids). I guess I am getting tired of waiting for some organization to find answers. They just seem to be shuffling the money around.

Myra McEntire said...

Thanks again, for being authentic and real and all the other things I love you for being. (((((HUGS)))))

Francesca said...

Here via twitter -- I too have a son with Aspergers and your passion is very inspiring, and sort of humbling too because I feel happy to make it through each day with both our sanities intact. (Relatively.)

I am sort of lost for words about the greater issue. Part of me is never surprised at the greed and selfishness around me. Another part is completely idealistic and wants to scream -- but how can you do that? HOW?

Thank you for writing about this.

Michelle Begley said...

What can I say? You changed my life. I was falling apart. You encouraged me, inspired me and helped me begin a new passion.If you helped me I can't imagine how many others along the way..probably many you have no clue about.
I remember seeing your article in the autism support group you started here. I couldnt wait to get there..I felt like somebody was finally catching me and understanding. you are a breath of fresh air...the greater issue..not good..I hate it but not uncommon for non profits sadly..I love ya girl and we will figure out another way to get the awareness out..even if its little by little without the big name. THANK YOU!!!! for everything you do.

C.J. Redwine said...

1. *hugs*

2. Can't wait to see where your passion takes you next.

April said...

thank you all for the hugs and the comments and the support and the...everthing. love to you all, even those i have yet to meet.

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