A guitar and a contrabass are the first things you see when you walk into the Jerusalem home of Debby and Zohar Elnatan. You also notice the adaptive equipment for 19-year-old Rotem, who has cerebral palsy.
Those two elements – music and a child with special needs – are dominant threads in the tapestry of the five Elnatans’ lives.
When ISRAEL21c came to visit, Debby Elnatan was still the center of global media attention following the April 7 launch of the Firefly Upsee (https://www.israel21c.org/social-action-2/israeli-moms-invention-gets-cerebral-palsy-kids-walking/), a novel co-walking harness based on a contraption she invented when Rotem was two years old.
“So many orders – thousands — came in over the first few days, that the website crashed,” she says. “Parents all over the world are putting up videos on Facebook showing them walking or dancing with their kids for the first time. Some show siblings hugging for the first time. Parents write to me about their Upsee before they even take the price tag off. It’s just incredible how virally this spread; within one week it was in China, Bosnia, Iran, South America, Japan – the four corners of the earth.”
CNN Turkey and a Brazilian television crew interviewed her, as well as an Italian radio station after a piece they did on the Upsee got 4.5 million hits.
A fiddler of music and tools
Elnatan, 56, was born in Syracuse, New York, and moved to Israel in 1983. She’s a lifelong music lover. “I’m a fiddler, and I have a country band called Habandanot [the Bandanas]. We do Wild West events all over Israel.”
Her father taught her to work with tools, a skill that came in handy when she became the parent of a child with CP.
“If I saw something Rotem needed, I would build a prototype,” she says.
“Since he was one year old I’ve designed crawling, seating, standing and walking equipment refined through trial and error. I have one patent and another patent application pending, and a lot of products to get into the market. I hope all my inventions will be commercialized, because I have a lot to offer and I want to give other families the advantages I had.”
She is adamant that her inventions be sold online to remain affordable. The Irish company Leckey created a retail website for the Firefly Upsee and another product, after refining its design and testing it extensively throughout the UK.
Towards a whole family
Each of Elnatan’s items is designed to leave the parent’s hands free and give therapeutic benefits while allowing the child to participate in family activities.
“Having a child with special needs can bring great stress to a family and all the relationships in it,” Elnatan tells ISRAEL21c. “There is a danger of investing too many resources in the child with special needs at the expense of the health of the family.”
Rotem’s older brother, Shachar, is a professional jazz guitarist, while 12-year-old Inbar is the one who plays the guitar and contrabass. Zohar is a guitarist and music teacher. Rotem, an aspiring DJ, entertained at a Passover party at Ilanot, his special school in Jerusalem. His mom lent some help. “We do what he can’t and he does the rest, and feels great about it,” she says.
Before Rotem was born, Debby and Zohar started an evening music group through the Shekel Association, which provides community services for people with special needs with the support of JDC Israel, the Ministry of Social Affairs, the Jerusalem municipality and other agencies. This remains a weekly commitment.
“We perform with our drumming group around the country at regular schools as a way of introducing people who have special needs in a fun environment,” she explains. “The group includes young adults with a variety of special needs, who all like music and have good rhythm.”
About 12 years ago, Elnatan conceived of a program with Miri Weiss, another mother of a special-needs child, to counter what they term “the broken child syndrome.”
“If you break an arm it does heal, but children with a chronic disease or impairments may never become like a typical child,” she explains. “If you always see your child as broken and needing to be fixed, it will cause an imbalance in your family.”
After 11 years of seeking a sponsor and sitting in board meetings, the Shemesh (Full Family Rehabilitation) pilot program was born to help restore family balance through play and leisure, family participation, sibling togetherness, parenting, and learning how to ask for help. Parents of older children with special needs are trained to accompany families with younger children with special needs.
JDC Israel developed the program and sought governmental funding partners. A three-year pilot of Shemesh is now wrapping up in communities including Ashkelon, Rosh Ha’ayin, Baqa al-Gharbiyye and Rehovot.
“We had to get the government to understand that family is the main influence and mover behind the quality of life of the child, and they need to help the entire family,” says Elnatan.
Play builds special-needs children’s confidence and personality, she says. “The best advice I got was from [Israeli clinical psychologist] Aliza Vig, who recommends parents find what brings a spark to their child’s eye and follow that lead.” She was also advised to favor activities that the parent enjoys as much as the child.
The same goes for siblings. Inbar tells ISRAEL21c that he and Rotem play Wii and card games, bake cookies and prepare salads together. “Maybe it’s because he was in the Upsee [when he was younger] and could stand and do things with his hands,” the preteen observes.
For more information, see http://www.fireflyfriends.com/upsee.