Love at First Sight: My First Shehecheyanu
by Donnie Kanter Winokur
This post is to entice you to read this feature article in the New York Times Magazine of February 5, 2012. Atlanta author and journalist Melissa Fay Greene spent almost a year in the trenches with our family to create a compelling piece for The Times entitled, “Wonder Dog,” in which she eloquently introduced to the world the profound impact our son’s service dog, Chancer has had not only on our son’s existence, but also on that of our entire family. We believe that this article has helped to expose a hidden public health crisis, the birth defect of fetal alcohol spectrum disorders (FASD), which impacts nearly one out of 100 live births in the United States and Europe. FASD is an umbrella term that describes the range of effects that can occur to an individual when a pregnant woman consumes alcohol. FASD is 100% preventable and 0% curable.
Our story is just a glimpse onto a landscape that is far more prevalent than most would imagine. By sharing our story we hope that others will feel the courage to share theirs. As a community, Jewish or otherwise, building circles of support around our loved ones with special needs is the only way to insure that disability has no place in spirituality.
So our story goes like this…
Our adoption referral video of 12-month old Iyal in 1999 was barely more than 90 seconds in length, just long enough to fall heart-over-head in love with this little boy. I remember thinking that the orphanage worker was trying to show him off in the video much like the way you see a dog-show person holding the dog’s head just so, to reveal the best profile of the dog. In the background, we heard someone calling his given Russian name “Andre! Andre!” to get his attention. Foreshadowing. Andre, whom we renamed Iyal, had his own ideas and agenda. He kept trying to crawl to the left and they kept redirecting him to the right.
In the video, his body had very low muscle tone (hypotonicity), not that I had any idea that this concept even existed at the time. All that I connected to was this adorable little toddler, who had very thin hair, translucent-looking skin and deep soulful brown eyes. My husband, being the rabbi that he is, softly whispered, “I think we should say a Shehecheyanu,” a prayer offered to thank God for arriving at a special occasion, a special season—often the beginning of a new chapter in life. I, being the newly married very Reform rebbetzin (rabbi’s wife) could not fully comprehend the intensity of taking something liturgical (usually only said in a worship service) into the context of our living room…in our real life. At the time, I sensed the spirituality of the moment…but could never have known the infinite number of prayers that would follow our acceptance of this little baby in the referral video from Astrakhan, Russia.
Both Iyal and his newly adopted sister, Morasha, were 14½ months when we arrived home in Atlanta on August 28, 1999. Morasha, having been born of a different birth mom was two days younger than Iyal and lived in a different children’s home, also in Astrakhan. Upon our return from Russia, we immediately had both children retested, revaccinated and evaluated for developmental delays per the recommendation of our pediatrician
At 18 months, both kids and I participated in a “Mommy and Me” program followed by pre-K at our synagogue. A few afternoons a week they were enrolled in another pre-K program at one of the Jewish community centers. When Iyal turned three, we began receiving reports from the JCC preschool that Iyal appeared to be reckless on his tricycle, bumping into other children on the playground. I still don’t know if this was done deliberately for attention or whether it was a precursor to some of the later emerging sensory issues Iyal would possess. Visual-spatial challenges and poor motor planning became apparent within the next year.
In those early years, I can remember experiencing anxiety attacks while lying in bed as I heard his footsteps getting closer to our bedroom. A feeling of impending dread engulfed me as I lay wrestling with the acknowledgement that I was feeling impotent against this little tornado that twisted my world inside out during the day and destroyed my peaceful spirit in the middle of the night.
Being new parents at an older age, without a frame of reference for parenting typical children, I could only imagine it was my fault. I was not a good enough mother. There must be something wrong in the way I was taking care of my little boy. It just shouldn’t be this hard and this exhausting. The elephant had quietly crept into the room.
October of 2002 brought the overwhelming and incomprehensible diagnosis of fetal alcohol syndrome (FAS) the most severe expression of FASD. The succeeding years of hit-or-miss medication, therapies in and outside the home and frustrations on a daily basis led me to research the possibility of obtaining a service dog for Iyal. During 2006, I discovered 4 Paws for Ability in Xenia, Ohio, and a compass through an increasingly difficult terrain was designed just for our son. A generous and furry compass on four paws that had a heart that would reach around the world.
In January of 2008, we obtained Iyal’s Behavioral Assistance Dog, Chancer. Chancer was the first certified service dog in the world to be trained for an individual experiencing FASD. Two weeks after we returned from obtaining Chancer, Iyal began to use words we didn’t even know he had learned. He began speaking a whole new vocabulary in appropriate context that exhibited self-reflecting thinking. Any of these things alone would have been cause for celebration. At nine years old, Iyal was functioning more like a five year old and never spoke about his having a disability, although we spoke about it in our family, in an effort to promote self-advocacy.
It appeared that neural networks that we thought had been blocked or never developed began to fire, bridging the gap between receptive and expressive language. Iyal would offer comments about Chancer to complete strangers, unsolicited, in a way that sounded like a fabulous Disney movie script. He would talk about how Chancer helped him feel better if he was sad and Chancer would help him to stop crying. Chancer was “his best brother.”
Perhaps the biggest difference is that now when Iyal goes into a limbic rage, Chancer will help to de-escalate Iyal by “nuzzling” him, offering licks and kisses until Iyal pushes him away, content with feeling loved and cared for. Iyal will now ask for Chancer to nuzzle him when he is upset. And we are profoundly blessed to have Chancer to lead the way toward peace-on-demand!