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.
$270,000.
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.
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?
Sometimes I think that the hardest thing in life is letting go.
When you are a child you have a favorite toy/doll/blanket and at some point, your parents force you to let it go. When we’re kids we have no idea why, and truthfully our parents can’t even really reason with us why it’s necessary. But the good thing is, that toy/doll/blanket is just tucked away somewhere. We can still peek at it once in awhile, even hold it up to our nose and inhale that deep sweet smell of sweat and tears and grime and love. Sure we have to put it back again, but the security of knowing it’s there is sometimes good enough. So even though we’ve let it go what we’ve REALLY done, is just learn to live without it.
This is why death is so difficult. You are forced, usually unexpectedly, to let go of someone that is very dear to you. And there’s no looking back. You just….. let go. And it’s over.
I’ve been married for 11 years but once upon a time I dated a boy that I loved with every fiber of my being. We spent 3 years of our lives together and one day he decided that he just didn’t see himself having children. I had to let him go. It was one of the hardest things I have ever had to do. I loved this man desperately as much the day I left him as the day I met him. I felt like my life would never repair. Little did I know, it was the best thing I would ever do. I let him go and…..started over.
When my now 8 year old son Jared was born he had a congenital heart defect and at 8 days old was taken into open heart surgery. When I look back on that time of my life, what is odd to me is that the hardest moment was NOT when they came and told me, “something’s wrong.” Not even when they told me, “Oh my God this is serious, something is REALLY wrong and here’s what it’s called.” It wasn’t even when they took his fragile little 3 day old body in for the first round of surgery. And even though a sea of tears poured out of my eyes as they wheeled him to open heart surgery, the hardest part for me was the day they put him on the helicopter to take him to the University of Michigan hospital. Why? Because at that moment, I had to let him go. I had to trust someone else and put my faith in him that Jared was going to be ok without me. I was only his mother for 5 days at the time, but one thing I knew for sure is that my child needed me at all times. Letting go is not easy, but sometimes the best thing we can do. Clearly this was the best thing I could do for Jared. I let him go and watched that helicopter fly away with my newborn and fell apart. But I had no choice. It was let him go or let him die. I let him go, and his life began. Again.
Today I took Luke to kindergarten. Why this was such a monumental step compared to preschool I don’t know. But it was. We tried really hard to prepare him, we talked about it for weeks, made him social stories, worked really hard at therapy all summer long to get him ready. But he wasn’t ready. And guess what?
Neither was I.
Luke has made amazing strides, and as I’ve said before ~many people who meet Luke ask me, “Where’s the autism?” “He seems pretty ‘normal’ to me.” But today, standing there in a sea of 200 other kindergartners, I couldn’t help but notice mine was the ONLY one screaming. Not the only one clutching his mother, but the only one clutching his mother with such an intense fear in his eyes it makes you want to scoop him up and shelter him for the rest of his life. Mine was the only child who refused, absolutely refused to get in line with the other children. Mine was also the only child whose mother got to walk him to his classroom, with an entourage of 4 other assistants.
We got to Luke’s classroom (he did walk by himself, by the way) and when we got there, I got down on my knees to get to his level. “Look at me, Bubbah.” No looking. He knows. He knows if he looks at me he’s got to own it. And there was no way Luke was going to own this one. Luke was not about to let go. So how could I?
3 members of the entourage stood there, as if to say, “well, what are you going to do now?” And honestly I had no idea. My son, my precious baby, was having such anxiety, such fear that the terror in his eyes was causing me to falter.
I could almost hear the propellers of the helicopter starting to spin.
But today I had a choice, right? I could have told his entourage to screw off, that I was going in with him today. And damnit I could have held his hand, held him all day long if that’s what it took to make him feel better. Better yet (and this thought crossed my mind) maybe I should just home school him? Maybe I should take him back to his preschool for one more year? Maybe he’s not ready?
The propellers are getting louder, I’m starting to feel the wind kick up.
The moment of truth.
The entourage is waiting for me to make a decision.
And I let him go.
And just like Jared, today Luke started a new life. A life without me. A life of independence from me. When his team literally pried him away from me (and it took two adults to do so) they may as well have ripped my heart right out of my beating chest, because that’s what it felt like.
Letting go is one of the hardest things in life. But most of the time, it ends up being the best thing we can do.
After he left my arms, I ran to the stairwell around the corner and didn’t look back. I just sat there and cried. I cried while I listened to his screams.
Because autism is when you can’t communicate why you are so bloody scared of a classroom.
Autism is when the transition from summer to school is so painful all you can think to do is scream.
Autism is when things that are new cause you so much anxiety, it actually hurts.
Autism is when you don’t want to let go of things that are precious to you, like your routine. Or your mom.
Overcoming autism is learning to let go and being ok with it.
Wait a minute, being a parent is learning to let go and being ok with it.
Let the helicopter come. I’m ready. Luke’s ready. I let him go. He let me go. A new journey begins.
When I picked Luke up, he was smiling. His entourage gave me a good report and were extremely encouraging about his day. His screaming lasted about 30 minutes, as did my tears.
And Luke got not one, but TWO new transformers today!
