I have a picture of my twin brother on my desk. It’s from a school photo day. Sitting in front of a navy blue backdrop, Scott is wearing a navy New York Yankees T-shirt and a calm, easy smile.
To the untrained eye, it’s an unremarkable photo, one bound for family members’ wallets and walls. It stands on the ledge above my desktop computer, next to a photo of Scott and my parents.
In that image, Scott is squeezed between my parents, his gaze fixed down and to the right, looking equal parts disturbed and annoyed. And there is my mom and dad, smiling straight ahead, smiling through the daily heartbreak of raising an autistic child.
Living with Scott is hard. It’s a reality familiar to friends and extended family but only authentically grasped by me, my mother and my father. (I have no other siblings). Scott often spends hours yelling and screaming. He pees his pants and watches old Barney clips on a loop. He is nonverbal. He exists in his own universe, governed by a set of rules known only by him. That photo day shot is a miracle; prompting Scott to follow directions and smile on command is almost as rare as a day without a fear-inducing presidential tweet. Bigly.
But Scott also brings us simple joys. He’s exceptionally affectionate, capable of dissipating the headache he gave you with an unprompted hug or kiss. He has an uncanny sense of direction. He likes running and is unapologetic in his love of spaghetti.
He has a contagious smile and an even more contagious laugh. He drops into our day and gifts us precious moments, moments that become memories, memories that become earnest stories: “Hey, remember that time Scott did that thing?”
He gave my family one of those experiences on Sept. 8, 2007, the day of our B’nai Mitzvah. I wasn’t super stoked for my “big day.” Battling social anxiety, among other pubescent delights, I was nervous about how many of my friends would show up. And if they did show up, would they have fun? (Spoiler: They did. Of course they did. The party was on a cruise ship.) For my parents, though, the B’nai Mitzvah was a crowning moment. A pair of Jews from Brooklyn, this was the day their boys would shine, in front of grandparents and cousins, aunts and uncles, friends and co-workers. The spotlight was on.
“Two beautiful boychiks,” my father joyously shouted to a hospital waiting room full of family on July 28, 1994. That was the day we were born, but on Sept. 8, 2007, we would become men.
I had been preparing for this day, whether I liked it or not, the past four years at Hebrew school. I could read Hebrew, write Hebrew and speak Hebrew. On the bimah I would have to sing my Torah portion, and that prospect gave me even more jitters. (Remember: social anxiety!)
Scott, of course, didn’t have that same dread. Some people with autism learn to speak later in life, even if it’s just a handful of words or phrases. Scott is not one of those people. My parents felt strongly that Scott should participate in the service, though, so a plan was hatched.
Back then, Scott carried around a DynaVox, a communication device with a grid of pictures corresponding to recorded phrases. In theory, Scott could tell us ‘I am hungry’ or ‘I am sleepy’ with the push of a button.
So, on the day of our B’nai Mitzvah, after I read my Torah portion, Scott was called to the bimah. He pressed a button on the DynaVox and again my voice filled the synagogue, reciting his portion. But it was Scott who pressed the button, who completed the action to generate the audio. This was Scott’s moment, too.
I called my mother recently to ask what she remembers about Scott pressing that button.
“Everyone heard you and started crying,” she told me.
“Everyone?” I asked.
“Everyone. Just picture it. I have tears in my eyes just thinking about it,” she replied. “It’s very emotional to see a disabled child, and you see his disability and you see we wanted to include him in that old coming-of-age routine: a Bar Mitzvah.”
And then our lives went on. Scott grew taller and his voice got deeper, not manifesting in words but in random, unsynchronized verbal mumblings. His mannerisms and moods and behaviors stayed the same. He is the epitome of the saying, ‘Ignorance is bliss.’ It has always been my thinking that he is wholly unaware of his condition, and as such he lives in an alternate dimension, unknown to all but him.
So it’s hard to say what the B’nai Mitzvah meant to him. He had to wake up early and put an unfamiliar cap on his head. Later, at our party, he kept fiddling with his tie and putting it in his mouth. What is this funny piece of cloth? In pictures, he looks mostly unamused, bored or indifferent.
In flipping through the album, one photo sticks out. It’s of me and Scott, standing in front of our cake with the candles lit. I’m looking down, wearing an awkward half-smile, with my right arm around Scott’s shoulder. He’s blowing out the candles, wholly in control of the moment, tie out of his mouth. He is a man. ❤
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