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Thursday, April 12, 2012

Our "Exclusive" Club

exclusive [ɪkˈskluːsɪv] adj
3. belonging to or catering for a privileged minority, esp a fashionable clique an exclusive restaurant
Collins English Dictionary – Complete and Unabridged © HarperCollins Publishers 1991, 1994, 1998, 2000, 2003

It was March 16 and I sat in a crowded, humid and stuffy conference room. As usual, I'd been running late and ended up in the very last row, which the attendants had added by bringing in extra folding chairs to accommodate the unexpectedly large crowd. The air was thick with tension, no one dared to whisper a word as we clung from every letter, sound and syllable coming from this beautiful elderly muse sharing her pain and wisdom.

I glanced around and saw them: an endless sea of familiar faces overlapping so many parts of my life it felt utterly surreal. To my left was the Occupational Therapist whom I'd mentored in her first years of practice. A few rows ahead was the Speech Therapist who first evaluated my little man, way back before we could ever imagine we'd end up with a diagnosis of ASD. To my right was my little man's former Early Intervention coordinator who'd stepped in when our former one left, and who also held our hands through the transition into preschool when the little man turned 3 years old. Next to her was our former entire EI team, those professionals who first shared their concerns which led up to a diagnosis. 

All around me were familiar faces from the autism walk. Scattered among them were faces of my former students who'd come for encouragement from a veteran from the front lines. There was the social worker I knew as a parent and the parent I knew as a social worker. There was the woman at the book table who recognized my autism awareness/puzzle piece jewelry from The Puzzling Piece. She knew Melissa and Brett from her hometown in Florida. There was even a woman who'd been introduced to me by a sister in our church family. I felt like I was in a time warp, like everyone I'd ever met in my life has been passed through a sifter and only that crowded conference room remained, all from different walks of life yet all with a common purpose.

We were all there for the same reason. Across generations and through time and space we were bound by one common thread: autism. Yet,  even among this group, a special subgroup remained: those of us whose PERSONAL lives have been touched by autism.  This was the "exclusive" club (see definition above) for which NONE of us volunteered. We not only shared a common bond, but also similar scars (both physical and emotional) from the journey through seemingly uncharted territory. This journey was filled with steep embankments, sharp rocks, muddy and sloppy paths, yet it also granted us breathtaking views of beautiful and one-of-a-kind peaks and valleys. In nature the most beautiful and rare flora and fauna can only be found in the most unreachable places where only the bravest and strongest dare venture. It is the same with our loved ones with ASD! Just this week I found myself saying to a couple of parents of a child with ASD, "Parents of kids on the autism spectrum have a higher calling...it's our path to work harder than most parents, but we have to step up!"

Well, there she was: a beautiful, strong fountain of encouragement and hope for our future. At 85 years of age, most of us in the crowd envied her physical beauty, strength and energy! She stood behind the podium on the small stage as if waving a white flag at the end of this puzzling journey, crying out to the rest of us, "Come on! Keep it up! You can do it! Follow my tracks if you can see them!" She paved the way! She took the gamble and won! Against ALL odds and with every soul around her pushing her back down into the mud the minute she'd caught her footing... HOW did she do it??? WHERE did she get her strength? How DARE we even begin to falter or complain in comparison to the rejection and blame she lived with, all while deep inside she believed in her daughter and just wouldn't give up!

Given the opportunity to ask questions, a relatively "new member" to this "club" stood and asked out loud what we were all thinking: HOW did she do it? Where did she get her strength and energy? So many of us just got started on this journey and we are exhausted. We give and give every day and seldom, if ever do we get anything back in return, not even a hug! What was her secret for longevity? We all feel lost in being parents/caregivers of our loved ones with ASD and have nothing left for our own selves...

"I had a great shrink!" she answered. Through the laughter in the crowd, she continued to explain how even in the hardest of times she continued to take even a sliver of time each week to do something just for her. She continued on, explaining her coalesced concept of "identity," of which I will elaborate in another post... and as she spoke, only a few of us noticed a young man stand from his seat all the way across the conference room. The signs of his diagnosis were visible: he was clumsy as he walked, clearly seemed uncomfortable in the large crowd, he barreled over some folks who were seated, yet he moved with such great determination that soon every eye in the crowd was fixed on his every move.

This young man walked as if on a mission then stopped abruptly, and began pacing a bit right in the middle of the room between all the rows of seated guests. NO ONE could miss him now! As he paced, he searched around by turning in circles in that same spot. He'd reached his destination: he'd found that brave mom who'd just stood up to ask the question we were all too shy to verbalize. "STAND UP!" he commanded loudly and sternly, taking the woman by the arm. Her discomfort was palpable and visible even from my viewpoint way in the back row. Everyone was riveted to this interaction. We all knew all too well how quickly this could get ugly... "Please," he mumbled. Then as loudly as he'd asked her to stand he awkwardly embraced her and followed by saying, "I just wanted to say thank you...for your son, like me."

In an instant, even through the tears in our eyes it became crystal clear: autism is messy, complicated, unpredictable and challenging... but each and every individual is worth our every effort. Be it a parent, family member or professional working with this population, every grain of sand helps to develop and create that person's "paradise,": feeling accepted, valued and, most of all, loved.

The speaker, that angel of hope, was Eustacia Cutler and the subject of her lecture was: "Raising My Daughter, Temple Grandin." There will be plenty of other posts on this experience, trust me! Truly a life-changing event. More to come!


Hear words about Eustacia Cutler from the very person who played her role in the HBO movie Temple Grandin. Get your tissues, because this is AMAZING and you WILL CRY!

Meeting Eustacia that blessed day!

1 comment:

  1. Once I settled into my children's diagnosis, her's was the first book I read.

    So amazing that you got to see her speak and meet her!

    Great blog.