Wednesday, March 21, 2012

Lighting up more than blue

April 2 is Light It Up Blue for World Autism Day.

Last year, I took Sam to the Light It Up Blue event for World Autism Day at UMass Medical. I wasn’t sure what to expect or if he’d even care.

Still, I felt compelled to go; to see it live. As dusk appeared, people began to gather, soon numbering a few dozen. Outside in the dark, Sam looked around, both perplexed and anxious.  

The group was addressed with a couple of quick speeches, followed by a countdown. As it ended, I quickly turned to Sam:  “Look up, look up!” I directed. Suddenly the building was dramatically aglow, bathed entirely in blue; a very impressive visual. Instantly Sam’s face lit as brightly as the building he watched. Breaking into his characteristic broad smile, he read in a loud voice for all to hear:

“Autism Speaks. Is time to listen.”

Hearing Sam, a few people wandered over to chat. Do you like it they asked? “Yes! Is blue!” Sam responded, still looking up. We lingered a while after they wandered off. To see the building light up for something that so profoundly affects us was unexpectedly moving.

Later, as we were about to drive off, Sam pointed back and exclaimed, “Autism!” “Do you want to see it again?” I asked.  “Yes!” he said. As I made another loop around the now desolate, but still beautifully lit building I asked, “Sammy, what is autism?” He responded, “Sam is autism.”

Since the inception of World Autism Day I’ve heard varying perspectives: I've got my blue on. I'm not wearing blue. It's amazing! It’s just a bunch of blue lights. What does it mean? It makes a big impact. Why would I celebrate autism? It's everywhere. What a show of unity. 

There is no right or wrong. I respect every viewpoint and can only comment on how I feel.

It is difficult for me to separate autism from Sam. It is so intertwined with what makes Sam, well, Sam. On World Autism Day, I don’t celebrate autism. I celebrate every child, parent, teacher and friend who has been part of our journey. If it weren’t for autism, I would have never known most of you. 

Come April 2 we will wear our blue and honor all the folks we know and those we’ve yet to meet. And we will celebrate our Sam.  

Leaving the last words to Sam on this topic seems appropriate since he knows more about autism than me. I don’t think he will mind I’ve taken the following comments from his facebook page:

i tonight autism speaks light blue
Do you like the blue? yes i like blue. everybody be blue. Autism speaks light it up blue. Good. Because it's happy. Thank you.

Look for us April 2. We’ll be the ones in blue. 

Follow us on Facebook at