Wednesday, September 23, 2009

The whole truth and nothing but....

Guess who I talked to today? No really, you'll never guess. Oh alright, I'll tell you.

The CFO of Autism Speaks.

Yep, the little blog that could made it's way to the eyes and ears of some people here and there and Mr. Thomas Hetzel gave me a call on Friday. I'm glad I missed the call though, because the weekend gave me some time to really pour over the 990. (Click here if you want to see it yourself.) I'll be honest, it's a lot of accounting stuff that's wayyyyyyyyyyyyy over my head. But from reading the document, there's a few things I know.

$3.9 million in office expenses is unacceptable.

$2.4 million in printing services? Not ok.

Geri Dawson, the Chief Science Officer referenced in The Examiner article as making in excess of $600,000/ year? Good news! It's not true. What is true is that she makes four hundred and something and she got $270,00o in moving expenses.

Nope, not a typo.


And yes, my dear readers and supporters. I *DID* ask the question, "Did you put every article of clothing in it's own limousine to get it from one side of the country to another?"

Mr. Heltzel was very nice. He listened patiently while I asked my questions and at most times, I think was at a loss for words. What I can tell you is this: I got a lot of canned answers. When I questioned Autism Speaks' office on PARK AVENUE (not just downtown Manhattan, but Park Avenue) I was given the standard answer. "We need to have a presence, we need to establish relationships with people in the city of New York, this gives us great visibility, blah blah blah blah blah."

Office expenses? Well, you know that encompasses a lot more than just paper clips and staples. And yes, dear friends... I was sure to make the point that on this level, as a volunteer we have to SOLICIT DONATIONS to get things like paper clips and tape so who in God's name is spending $3.9 million dollars a year, because it's NOT us out here in the field. And to be honest, if I were making a 6 figure salary, it probably wouldn't bother me nearly as much to be soliciting for paper clips!

I asked a lot of questions and he answered in the best way he could, being careful I'm sure not to end up in this very blog you are reading.

So let's cut to the chase.

Here's what I know. Autism Speaks needs to trim the fat. A LOT. Autism Speaks needs to re-think the 4 fold, high gloss, full color , premium cardstock invitation to the kickoff. I'm not sure if the full color graphics in the 100 day kit make the information more important, but I'm guessing if we started printing that in black and white the parents would be just as happy with the information and less frustrated that their fundraising efforts go to such an excessive luxury as color printing.

Here's what else I know. The Examiner article referenced the fact that, "by contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures."

And that's true.

Sort of.

True: Autism Speaks wrote $66,670 in individual grants.

Also true: Autism speaks wrote $865,000 in community grants. And Mr. Hetzel was nice enough to explain to me that for tax purposes, they must be listed separately, but things under community grants include a summer camp in Colorado for autistic children, and community education and awareness projects. And lets' not forget the $162,000 to adult services which aids adults with autism who are, for lack of a better word, misplaced in the world.

My point is, I'm pretty sure families are benefitting from those grants, too.

One more thing: Autism Speaks ALSO paid out $68,000 in "relief" grants for autistic families and adults who needed clothing, shelter, hurricane relief, etc.

Oh wait, I almost forgot: the $30 million + to science research in the United States alone. (seriously I was adding it up line by line and stopped at $20 million).

So can Autism Speaks do a better job doing the very best with the money we work so hard to raise? Absolutely.

But can any of us NOT say the same thing? I'm pretty sure my husband wishes I would stop going to Hobby Lobby so often or lay off the pedicures for awhile so we can get ahead on bills.

Hey, nobody's perfect.

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?