Autism Doesn't Just Speak - It Yells...

When I started this blog (a whopping 2 days ago), I intended to wow you all with my comedic talents to lure you into being a fan of my work...I wanted to show you the humorous side of autism and how my family gets by with a little help from our jokes...but then I headed into my first Autism Speaks National Volunteer Leadership Conference here in Chicago...well, as my friend Sharon said - it's not really Chicago - it's a 2-day layover since we are at an airport motel at O'Hare - nevertheless, here I am at the end of the first full day of the conference and struggling to find the hilarity in it.

It's very hard to describe the emotional impact of being in a room with over 300 people that are fighting your fight.  We sit and talk to each other, and within 5 minutes, I relate to a person that I know nothing else about other than that she is living with an autistic child.  We have struggled with the same fears, cried the same tears, been angry at the same world that has put us in this position.  There is an instant, unspoken bond that we share, though both of us would have been happier to have never met before...it is autism that brings us together.  There is a silent understanding that we GET each other.

I don't want my blog to become an Autism Speaks commercial, but I have to say that sitting in a ballroom all day SEEING and HEARING where the fundraising dollars are spent is fascinating, reassuring, powerful and impactful.  Since becoming a part of the Autism Speaks community, I have heard negative remarks from several autism parents - in fact, I recently read a few articles that were anti-AS because I wanted to know what their beef was.  The top three specific complaints that were listed included:

1) They don't have any autistic Board members.
2) They act like autism is a disease instead of accepting it as a lifestyle.
3) They spend too much money on research instead of giving it to families.
  
Go back and read those three things again.

Are these people out of their fucking minds?

I can only speak about my son Luke, but suffice it to say that he would not be a positive addition to any Board Of Directors...and he doesn't have much of a lifestyle to speak of unless jumping on a trampoline and breaking shit is now considered a "lifestyle choice"...and too much money on research? For real? I will always support the organization that spends the MOST money on research - I refuse to accept that this will be my son's life and I will spend the rest of my living days raising money and advocating for research, progress and a cure. Period. End of story.

OK - off the soapbox...

I have had the pleasure to get to know some pretty amazing chicks on this journey...not something I was open to in the beginning...but something that I have now come to appreciate as one of the few bright spots in this unchosen life.  A recurring theme of today's conference was the terminology of the people volunteering and raising money for Autism Speaks - the parents of autistic children are DRAFTED - we didn't get a choice (and damn I would have made a hot run for the border if I knew the draft slip was coming!).  People that do not have an autistic child of their own (or close to them) are the CIVILIANS - they read and watch stories about the war, but they are not on the front lines.  There is a whole other group of heroes and heroines we will call the ENLISTED - people that do not have autistic children of their own or even in their extended family - yet volunteer out of the goodness of their heart and their general understanding that autism really does affect us all - if you don't believe that it affects you, go and Google "Autism Costs Of Care" and then shield your eyes from the staggering numbers - all the walks in the world won't pay that bill!


I have had many people tell me that I am "amazing" and "incredible" for raising money and advocating the way that I do on behalf of my son...but please understand that I am his mother - it's my job and I do not have a choice.  But these enlisted soldiers are CHOOSING to be an active part of this fight - they are volunteering to stand next to us on the front lines...what is more amazing than that?


Well, it's my last night here in semi-Chicago - so I am off to savor the large, fluffy bed ALL BY MYSELF and dream happy dreams of beakers, bunsen burners and scientific breakthroughs...back to reality tomorrow as the Cinderella Business Trip Glass Slipper and Royal Coach turns back into flip-flops and a pumpkin...