I have a new hero. Someone who I look up to, venerate, and applaud. Someone who inspired and inspires me. I met this hero in New Orleans, while away at a CCAR rabbinical convention.
Sitting in a club listening to some great jazz, I heard my hero’s story. There were tears while it was told. My heart both sanked and soared while I listened. I vowed to always remember the story and shine light on the heroicism.
It’s a story about Aspergers, a condition on the autism scale, which – among other things – leaves those with it, without the crucial ability to read social cues. Unable to tell if you are bored, irritated, or busy, the person with Aspergers just drones on, seemingly acts out, or worse. He sometimes say things that are out of context, not funny, or are offensive. It’s hard for her to maintain friendships because people just don’t get her or can’t handle the challenge.
Worse yet, like a person in early stages of Alzheimer’s or Huntington’s Disease, many people with Aspergers know they are different. They know their life will never be normal. In my hero’s life, the dream was to have one day (just one day!) to be normal, without the Aspergers. A far cry from the new car, new jewelry or an iPad 2 that most of us covet.
It wasn’t working for both mom and dad to work. Aspergers Boy (call him “Abbie”) was not thriving; friendships were not abiding. Mom and Dad were dividing, a load of pressures and responsibilities that threatened to bring them all down. ‘Twas difficult to focus other siblings when Abbie needed such help, guidance and advocacy. Everyone suffered.
Oh, did I mention that mom was a highly successful professional, targeted by many to become the next CEO in her company, while Dad was a well paid craftsman, sought after for the quality of his work. They happily lived near family, surrounded by dear friends.
But life was getting oppressive. They couldn’t keep going. No one was thriving. Something had to change.
So they took a radical step. They searched the country – yes, all over America – for a town that provided real resources for children with Aspergers, in an organic way. They found a place where Abbie could thrive, where mom and dad’s stress would subside, where the needs of the other kids would not collide with the sacred responsibility of raising an Aspergers Boy.
So dad transferred to a new job a half a country away. They bought a house out there. They registered the kids in new schools.
Abbie won’t quite get his wish to be without Aspergers for a day, but he is going to a community where being an Aspergers boy might just be … normal.
Who is my hero, you wonder? Why it’s mom!
Mom is giving up her high profile, highly successful job and career, moving away from her family, leaving her friends, and plopping herself down in the middle of nowhere (well, relatively nowhere) because the family realized that Abbie and family needed full-time attention and guidance.
What’s a hero? Someone who, without thinking about her own needs, acts in a way to nobly put the wellbeing of others first. Think MLKing’s march through Selma. Think rescue workers in the remaining World Trade Center tower on 9/11.
And think of Abbie’s mom, who selflessly is giving it all up for Abbie, for her family and for the sacred gift of nurturing a child with Aspergers.
Abbie’s mom goes nameless, unless she wants to out herself in cyberspace. May she, and the others who have made similar choices, know that they inspire so many of us to strive to be heroes too.
