Home   January 2017: THE SIBLINK | Sibling Scribblings

January 2017: THE SIBLINK | Sibling Scribblings

There Should Be A Secret Sign
By: Jill Zuckman, sister of JFGH resident Beth

Beth, Jill and Michael Zuckman

Everywhere I go, I see families like mine.

Browsing for Hanukkah presents at Sullivan’s Toy Store recently, I heard a loud voice talking with the cashier. She sounded just a little too exuberant, her words slightly slurred. As I approached, I saw a young adult woman with an ID around her neck buying a toy. Watching the scene from a few steps away was her was her father, elegantly dressed in a camel-colored cashmere dress coat. He looked at me, smiled, and said something about age appropriate toys.

I smiled back, and I thought to myself that there should be a sign.

I have this vivid memory. I was in an aisle of a Giant grocery store. My sister, Beth, wanted something on one of the shelves. She was pointing and trying to grab for it. My parents said no. She began to shriek and cry, and soon she was on the floor, refusing to get up.

It was a full-blown temper tantrum. Of course, people were looking. Kids were staring. It was embarrassing. That scene played out many times in many places during our childhood. For Beth, who was born with profound intellectual and physical disabilities, the frustration of not being able to speak or to clearly communicate what she wanted, often resulted in tears.

She was born with a cleft palate, signs of cerebral palsy and seizures. She didn’t learn to walk until she was four-years-old. She never learned to talk, though she picked up a little sign language and has the best laugh ever. At the hospital where she was born, the doctor told my mother not to worry, that Beth would grow out of all this.

Not so much.

Michael, Beth and Jill Zuckman

For me, having a little sister who couldn’t talk and often lurched when she walked, regularly resulted in stares. As a kid, it was uncomfortable.

Today, Beth is 49 years old. She’s calmer and cooler in situations when we are out and about. But everywhere I go, I see families like mine. I see a little girl with Down Syndrome at the new Mexican joint near Logan Circle, eating fajitas with her mom and dad. I see an adult woman on the Acela, headed to Union Station from Baltimore, trying to explain to the conductor that she’s just trying to get home, even though she doesn’t have a ticket.

And I think to myself that there should be a secret sign. A look, a smile, a nod that says, I get it. I get you. Forget about the stares from people who don’t know or understand.

If you have a sibling story you’d like to share, please email BShapiro@jfgh.org.
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