In 1999, my husband and I created a family when we adopted two unrelated babies, just 16 months old, from Russia. Like all parents, we had dreams for our son, Iyal, and daughter, Morasha, to grow up happy and healthy. The future held such promise! Later, we came to find out that our son’s nightmare began before he was even born.
When Iyal was 4 years old, we learned that his birth mother had consumed alcohol during her pregnancy. He was born with a life-long birth defect, fetal alcohol syndrome, the most severe form of fetal alcohol spectrum disorders (FASDs). As in the case of most women who drink while pregnant, she probably did not know the devastating legacy she was leaving her son. FASD is the leading cause of intellectual disability in the western world. This umbrella term is used to describe the range of effects that can occur to an individual who was prenatally exposed to the toxin alcohol. Besides cognitive impairment, it can include social, emotional, behavioral, and physical challenges with a predisposition to a host of developmental conditions and psychiatric illness. FASD is often accompanied by ADHD, autism, OCD, seizure and attachment disorders.
We realized that Iyal would always need “an external brain” to compensate for the organic brain damage that left him vulnerable and unable to make choices for a “happy and healthy life” on his own. We reluctantly comprehended that while Iyal would grow up like his peers on the outside, on the inside his development would remain stunted, creating a phenomena called dysmaturity. The gap would widen as his neurotypical sister, Morasha, soared through her life, unburdened by extreme impulsivity and a lack of understanding between cause and effect.
Perhaps what is most agonizing about this disability is that it remains hidden or invisible until those who experience FASDs find themselves at the center of a tornado that has wreaked havoc for those around them. The Center for Disease Control and Prevention estimates that nearly one in 100 live births are fetal alcohol exposed. Half of these individuals will experience trouble with the law and difficulty completing school, while 97% will develop psychiatric disorders and remain unable to live independently. And yet they look just like you and me.
Research suggests that building a circle of support or community for those living with disabilities strengthens the outcome for the individual. How could we do this when the disorder rendered Iyal unable to interact with others in a meaningful way?
We struggled, as traditional therapies were not helping Iyal to function in his world. The decision to obtain a service dog for Iyal rose out of frustration, heartache and the desire to find a way that he could feel more grounded, but it became evident that we had to “think outside the kennel.” Were any dogs being trained to support children living with FASDs? Not until Chancer, Iyal’s impeccably trained 90-pound golden retriever. Since 2008, when Iyal obtained the first certified FASD Assistance Dog in the world, so much has changed!
As a service dog, Chancer’s presence legitimizes Iyal’s invisible disability. He validates Iyal’s experience – even if it appears like willful disobedience to others. He provides sensory support when Iyal feels overstimulated or hyper. Difficult emotions and behaviors are mitigated through Chancer’s training through behavior disruption. He functions as Iyal’s ambassador to the world, paving a path for communication and acceptance while lowering anxieties. Their mutual love is profound.
We are grateful for the gift of our children, the understanding of disabilities we have gained, and the opportunity to help others. Mitzvah became a default, as our family learned to advocate for those who are differently-abled. Morasha’s award-wining book, My Invisible World: Life With My Brother, His Disability and His Service Dog,offers support internationally to siblings of those with special needs. Our children’s book, Nuzzle: Love Between a Boy and His Service Dog, told through Chancer’s voice, eyes, ears, and nose, offers a narrative that allows children of all ages to better understand invisible disabilities.
Without our synagogue, Temple Kehillat Chaim, a gaping hole would be left in Iyal’s safety net. Our village would not have the strength of individuals or the communal environment to help keep Iyal safe and our family nourished. So in the end, a divine intervention from a canine companion creates an anchor for Iyal that grounds him in spirituality only the two can really appreciate.
The Winokur family’s story is being developed into a movie to offer hope to other families who struggle with similar challenges. Find out more about Chancer, Iyal, and the movie at The Chancer Chronicles and FASDempowered.com.
Donnie Winokur is an international speaker, author, and advocate for individuals who experience developmental disabilities, primarily Fetal Alcohol Spectrum Disorders (FASD). Donnie's son, Iyal, obtained the first certified Assistance Dog for FASD in the world.