March 7, 2013
Don’t Stop Thinking About Tomorrow
When your children are babies, the idea of them becoming teenagers and running around town on their own seems crazy. With less instinct than a household pet, infants are totally dependent on the grown-ups around them for everything—food, shelter, love. And yet, somehow they move ahead through the developmental milestones laid out so neatly in all those “What to Expect the First Three Years” books and start walking around, communicating, and becoming someone who hates anything cooked with onions.
For parents of children with special needs, that trajectory starts moving off course, at first just a few degrees, but then takes you to a whole different state of being, until you are so focused on trying out a new therapy, a different medication and getting through the annual IEP (Individual Education Plan) meeting with the public school district that you can’t possibly think ahead more than just a few months ahead.
But kids, no matter what, don’t stay young forever.
I had the opportunity this week to hang out with adults with special needs who are participants with JFS/Chaverim, a non-sectarian social friendship program. First was the 6th Annual Karaoke Competition at Temple Judea, loosely based on the American Idol format of having the audience choose a winner. Eight brave adults, 6 guys and 2 women, ranging in age from mid-20s to almost 60, took to the stage solo and gamely sang as the lyrics flashed up on a screen. Some used props, others went for the bold gestures while others focused on keeping their balance. They had practiced for weeks ahead with Gerry Dicker, the Program Coordinator who doubled as the KJ (Karaoke Jockey).
Family and friends were in the audience, and we voted for the top three--the winners received Target gift cards, All 8 participants received trophies with their names engraved on them. On a sadder note, two Chaverim members who had passed away, Lisa Pritikin and Lori Ravitz, were remembered by their favorite songs, including David Cassidy’s “I Think I Love You” which I counted among my personal favorites as a pre-teen in 1970.
Then tonight, as part of my work with Bet Tzedek Legal Services, I helped lead a self-advocacy focus group of Chaverim members, asking them about their daily lives, and in what areas they might need additional help. There were a dozen adults with developmental disabilities from age 24 to 66, with a wide range of abilities and diagnoses. Three parents and an adult sibling also participated. What was impressive about this group was the high degree of independence most had achieved, and how their families had helped them get to that goal. A few families had received high-level support and services from their service coordinators at the state-funded regional centers, but most were left largely on their own.
Some worked part-time and others had volunteer placements, often due to government programs that place caps on how much people can earn if they want to keep their monthly disability checks. There were frustrations with the Access bus system for people with disabilities that doesn’t always show up on time. But there were older adults who were learning how to use a computer, younger women who loved to go to the mall, and young men who had the travel bug.
They were all grown-ups, in every sense of the word.
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