Monday, April 29, 2013

The Talk

Decisions, decisions.

For two solid weeks I went back and forth…Autism Walk or baseball game?  Autism Walk?  Baseball game?  For the second year in a row we had another commitment the same day as our local county Autism Walk.  Dammit.

This year the conflict was a little league baseball game.  A game in which I knew Ben would shut down by the 3rd inning.  A game in which Ben would need a firecracker lit beneath his rear to get him moving from outfield to dugout and back.  A game in which Ben would walk away feeling like a failure.  Again.  While I want Ben so badly to become an engaged member of that team, it wasn’t entirely difficult to make the executive decision the day before…we’re ALL doing the Autism walk.  The whole damn family. 
Lib and Timmy weren’t sold on the idea.  Of course they had no clue what to expect.  Another day of Ben being the center of attention, maybe?  Probably what they pictured.  But I needed them to understand how important it is that Ben sees that this entire family is on his side.  That we all support him.  Just as he has been cheering from the sidelines for years at Lib and Timmy’s basketball and football games.  It is their turn to cheer. 

We arrived fairly early, got registered and our t-shirts.  It was pretty chilly but Ben was thrilled to don his immediately.  The walk was scheduled at an elementary school…complete with a walking track and a nice big playground.  Perfect setting!   As more kids arrived the playground began to fill.  The gentleman and I stood to the side and watched many of the kids meander in and around the yard…many of them navigating the playground much like Ben.  Keeping to themselves.  Captivated each in their own world.  And for the first time….well…ever…Ben wasn’t alone in this.   And he loved it!  Before we knew it our NBA mascot, Boomer, arrived and Ben was elated.   Seeking pictures and a high five…smiles were abound.  And you know what…Timmy and Libby were actually having fun too!  (Brief glance to the heavens and a silent “thank you”.)

Just before the walk began, the kids decided it was time to grab a hot dog and sit down for a quick bite.  We found an open table next to a van broadcasting for a radio station.  While the kids were eating, the local DJ was interviewing one of the participants about her involvement with our county’s Autism Foundation.   And that’s when it happened…

“Mom…what’s Autism?”

NBC's 'Parenthood' - Max Braverman

Holy shit.  Immediately the gentleman and I locked eyes and we realized…we probably should have had this talk at the very least that MORNING.  Why hadn't we thought of this??  Of course we're taking him to a walk that has "AUTISM" blaring on a hundred different signs.  He CAN read.  I immediately flashed back to the episode of 'Parenthood' where Max stands up at the Autism Walk declaring his support for all of those kids out there with Autism...clearly not aware he was his family's participant of honor.   Did I really think Ben would assume we were walking to support a cause I randomly picked out of a hat?  I never claimed to be brilliant, folks.
Who’s gonna…what do I…how do’s he gonna…crap.  

Dad took the first stab…”Okay Ben, Autism is when your brain is wired a little… see…” I could see the look in Ben’s face and immediately interjected that there are not in fact any actual wires in your brain.  (I saw that one coming a mile away.)  After stumbling through a few attempted technical explanations, I took a turn.

“Ben…buddy, you know how a lot of times in school you get really frustrated because you feel like people don’t understand what you’re trying to do or say?”


“And you know how sometimes you get upset because you really want to take your time on your school work and get it done completely right instead of moving on to the next activity?”


“And you know how when people approach you and want to talk to you but you have a hard time answering with words and you don’t really look at them and…”

Holding up his chubby little hand to halt me… “Mommy.”

“What buddy?”

“I have Autism.”

It was all I could do to nod, get past the monstrous throat lump, squeak out a “yep…yep, buddy you do have Autism and that’s why we’re here” and pull the sunglasses back down over my eyes.  His very serious face was satisfied.  He didn’t ask anything else.  At that moment he didn’t need anything else.  As I attempted to continue our talk, he made it clear that he was done talking, done eating and ready to play again.  As he scurried away the gentleman and I exchanged glances…he knew where I was.  And I knew that my oversized shades were not hiding the tears streaming down my face.  We cleaned up our mess, followed the kids back to the playground, completed our walk, got some great pictures in the meantime and then headed home.  The gentleman and I determined we would revisit the conversation later…after taking some time to research how best to have such a talk with your ASD child. 
While I wasn’t prepared to have that discussion right then and there, I naturally thought of all the things I wanted to tell him after the fact.  But what I took away from that day…is that, as big and overwhelming as Autism feels to me…as frustrated as I get…as much as it is an everyday topic, a never-ending part of our world now…it is NOT everything to him.  Our talk didn’t make him cry.  Or scared.  It doesn’t stop him from playing, from laughing, from living his life.  It doesn’t keep him from fighting with his siblings or giggling about fart sounds with other kids in the carpool line.  He's not fretting about his IEP or what day he has speech therapy.  It doesn’t change HIM.  Those worries...they're mine.  And they should be.  And I'll take 'em. 
Ben can just be...Ben.