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‘I feel mad at my brother, but I know I’m not supposed to’: Nonprofit supports siblings of people with disabilities

Chicago Tribune - 12/25/2020

Highland Park native Jessica Leving, author of “Billy’s Sister: Life When Your Sibling Has a Disability” and founder of The Center for Siblings of People With Disabilities, says she remembers the night she learned that her younger brother, Bill Steinberg, had been diagnosed with autism.

It was a little over 20 years ago. She was 8 years old and had been at ballet class earlier that evening. She’d thought it was strange that her grandfather had picked her up instead of her mother.

“My mom was in her bedroom with the door closed,” Leving says. “I can hear her crying. And then my stepdad told me we found some news about your brother. Your mom will talk to you later. ... And my mom did come out later (and) explained to me that he had been diagnosed with autism.”

To Leving, Steinberg was her baby brother, and she says she didn’t start to see the effects of his autism until she was older.

“Even before I could understand what autism really was, and notice those differences, it still affected our lives completely, because (Steinberg) was going to like five different therapies a day,” she says.

Her book is based on her childhood experiences growing up with Steinberg, and although the book was published in August 2019, Leving says she actually wrote the first draft when she was a sophomore in high school.

Steinberg was regularly going to a therapy clinic in Northbrook, where her mother mentioned to one of the therapists that she had an older daughter who loved to write. This therapist said many parents had asked for resources for the siblings of their disabled children because the siblings were having anxiety troubles or acting out, or the parents didn’t know how to explain their child’s disability to other kids in the house.

A growing number of studies suggest siblings of children with disabilities experience higher rates of anxiety and depression.

“It makes sense because when you grow up feeling like I’m not allowed to experience anger,” she says, “or I feel mad at my brother, but I know I’m not supposed to, and now I feel guilty. It’s not like the parents are teaching you to do this on purpose. You just kind of teach yourself, like, I need to shove (these feelings) down. I need to be the perfect child because my mom’s hands are full, or it’s really annoying when my brother screams, but I know he can’t help it, so I’m not allowed to be mad. You can’t sustain that for the rest of your life because eventually it comes out as some kind of emotional issue, and it’s going to be difficult if you don’t kind of catch it early.”

Leving, of Roscoe Village, says the book she wrote in high school was always on her mind, and last year she looked into self-publishing. Before she began, she wanted to know if books like hers were already out there.

“I did a Google search to try and find other picture books about having a brother or having a sibling with a disability,” she says. “And there’s really still very little.”

The books she found were told from the perspective of the sibling, but they’d actually be about the kid with the disability, Leving says. Not ideal for siblings because they didn’t capture the siblings’ actual experiences.

“And I totally think, you know, those are also great books for families to have,” she says. “But I really couldn’t find ... (a) kids book that talks about it. Sometimes it’s hard, sometimes it’s confusing, sometimes you don’t understand what’s going on, sometimes you might be mad that your sibling is treated differently than you ... or (you’re) jealous.”

After publishing “Billy’s Sister: Life When Your Sibling Has a Disability” on Amazon, Leving said, she got an overwhelming response from parents and teachers inquiring about more resources. She says she also heard from adults who have siblings with disabilities who thanked her for telling their shared experience so honestly.

From there, Leving created a podcast called “The Special Siblings Podcast,” on which she’s interviewed siblings, parents, teachers, therapists and executive directors of organizations in the U.S. that serve siblings. Soon, listeners of the podcast asked how they could provide support. With Leving’s background in journalism and nonprofit marketing, the next logical step was starting a nonprofit. The Center for Siblings of People With Disabilities received its 501(c)(3) status in May.

The center is based in Chicago, and in addition to “The Special Siblings Podcast,” offers a workbook and virtual programs for families with children of all ages beyond Chicago. But the center focuses on providing support early on for younger siblings.

“Because parents are so overwhelmed, when you have a young child, especially when you have multiple young children, and one of them has a disability, you’re probably still learning about the disability and trying to put together your resources. And you’re running back and forth from place to place,” Leving says, “not necessarily thinking, ‘Oh, I wonder what resources are out there for the other kids.’”

As for Steinberg, Leving says she was nervous he would be offended when he read the newly published version of the book.

“I don’t really know if he didn’t totally understand, or if he does understand, it didn’t bother him,” she says. “But he was really excited to have a book about him. And before the pandemic, we did a couple of, like, book signings together. And he sat next to me, and he was really excited to tell everyone, ‘Yeah this is my book.’”

hgreenspan@chicagotribune.com

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