Revealing her ‘invisible world’
Young author seeks to raise awareness of Fetal Alcohol diseases with new book
Eleven-year-old Iyal Winokur suffers from Fetal Alcohol Spectrum Disorder, a group of conditions, including physical and behavioral problems, that come as a result of a mother consuming alcohol while pregnant. While he’s at his public school, he’s able to manage with the help of an aide. At the end of the day, Chancer, a four-year-old golden retriever who has been trained as a service dog specifically to work with Iyal, is waiting at the door to greet him.
Iyal’s sister, Morasha, also 11, wanted to let the world know about this special relationship as well as the disease in general, so she wrote My Invisible World: Life with a Brother, His Disability and His Service Dog (Better Endings/New Beginnings).
The Winokurs spend their summers in New Jersey, where they attend Temple Sinai in Summit. The family — including Chancer — attended a book-signing at Borders in Watchung Square Mall in November.
“It’s about my brother and someone with disabilities and how challenging it is,” Morasha told NJ Jewish News in a telephone interview. “It’s also about how we got Chancer and how Chancer helps him.”
Their parents, Donnie and Rabbi Harvey Winokur — who founded Temple Kehillat Chaim, a Reform congregation in Atlanta, where the family lives — sent a video of Iyal’s behavior to 4Paws for Ability in Ohio, the first service dog agency to work with clients suffering from autism and psychiatric disorders. Chancer received more than 500 hours of training before he came to live with the family. “I don’t even have to give him the commands anymore,” Donnie Winokur said. “No matter where he is in the house, if he hears Iyal getting upset, he finds him.”
Morasha started working on the book when she was eight, then took a break before returning to it last year after her mother spoke to a publisher. “I thought, we can make this happen,” Morasha said. Once she got down to business, the book took about 18 months to complete.
“A lot of people really like it,” she said of the early response. “I think Iyal thinks it’s cool”
Iyal and Morasha were both adopted from Russia when they were 14 months old; they are from different biological mothers. Iyal was four years old when he was diagnosed with FASD.
Donnie Winokur, who was the founding executive director for the Body and Soul National Institute in 2000 and has facilitated programs for numerous Jewish and health organizations, described Fetal Alcohol Syndrome, a component of FASD, as “an invisible disability for a long time.”
FAS “is estimated to be more prevalent than autism, but hardly anyone is aware of it,” she said. “We believe a lot of the reason for that is there’s a stigma associated with alcohol. The victims are getting blamed and people kind of assume that women are drinking on purpose and they don’t care. We don’t think that’s the case….
“Unfortunately, there’s a zero percent cure for this disability, but it’s 100 percent preventable if people know that there’s no safe time or safe amount to drink when they’re pregnant.”
While Morasha said the book is for everyone, her mother pointed out, “It’s written from an 11-year-old’s perspective, so it’s designed for middle-school readers. We really kept it in her voice because we didn’t want it to sound like an adult was writing through her. She had the last right of refusal for all the editing to make sure it would sound like something she would say.”
Donnie Winokur’s father taught at South Orange Junior High School when Rabbi Stuart Gershon, the religious leader at Temple Sinai, was a student.