November 12, 2019

Going along hand in hand

Twenty-three years ago, Lisa Szilagyi gave birth to her first child, Emily, who was diagnosed with tuberous sclerosis, a genetic disease that causes tumors to grow on vital organs. It resulted in severe epilepsy and essentially made Emily nonverbal.

And yet none of this seems to matter when Emily is at Hand in Hand, a program for children and young adults with special needs at Malibu Jewish Center & Synagogue. She loves cooking with her peers, eating meals with them and listening to music. 

“She enjoys being around people even though she can’t verbally communicate,” her mother said. “She loves the noise and activity.”

Founded in 2010, Hand in Hand has activities every Thursday afternoon during the school year, when about 14 child and teen participants show up, along with upward of 30 teenage and adult volunteers.

Hand in Hand — which focuses on hands-on activities, music therapy and community service — was started by Szilagyi, Janet Hirsch-Ettenger and the synagogue’s Cantor Marcelo Gindlin. Each brought a different background to the program.

Szilagyi came as a mother and a professional in the field. Formerly employed in film distribution, she quit her job to see to her daughter’s medical needs. That led her to become a special-education teacher at Malibu High School, where she realized how social interaction for children with special needs was lacking.

“These opportunities are so rare for them,” she said. “They spend a lot of time with adults and in therapy, and they don’t get a lot of social time with peers without disabilities. We’re doing activities that all the kids like.”

Hand in Hand participants cook and  eat together, as well as create arts and crafts and sing with the cantor. They go on field trips to parks and ranches in Malibu, and once a month they volunteer at Jewish Family Service’s SOVA Community Food and Resource Program or at Shane’s Inspiration, accessible playgrounds for handicapped children throughout the area. 

“We feel it’s really important that [the kids] aren’t always the recipients of other people’s generosity and kindness, but that they find ways to give back to their community, too,” Szilagyi said.

Gindlin, who is trained as a music therapist, conceived the program, having run similar ones in Argentina, his native country. He reached out to Szilagyi because of her background and to Hirsch-Ettenger because she helped organize tikkun olam projects for teens at the shul. 

“It helps the kids socialize and make friends, and builds confidence and their self-esteem,” Gindlin said. 

Although the program, which Gindlin said has received support from The Jewish Federation of Greater Los Angeles and Windsong Trust, is held at the Malibu Jewish Center, it is nondenominational. For the two-thirds of participants who are Jewish, holiday activities are held. For  the past three years, for example, they’ve put together a latke community party during Chanukah and sold homemade bath salts at the Purim carnival. 

Linda Ellrod of Malibu, vice president of the Malibu Special Education Foundation, whose daughter Kristina, 19, goes to Hand in Hand, said that the program has helped her daughter’s speech and motor skills. But that’s only part of the benefit. 

“I think it’s been good for my daughter because it is a way that she can socialize with her peers. It’s also good for the peers to socialize with people with disabilities,” she said.

Ellrod said that it’s given her the chance to make friends with other parents, too. 

“It’s been really nice for me to socialize with them,” she said. 

Hirsch-Ettenger, a Malibu doula who also works as a childbirth educator, said Hand in Hand has the power to improve the lives of the peer volunteers as well. 

One of those teens, 14-year-old Cubbie Kile, said volunteering with Hand in Hand has been fun and thoroughly enriching. 

“I feel that it has opened my eyes more to what is outside my bubble,” she said. “These kids are just like us.”

The connections that occur between volunteers and participants are priceless, Szilagyi said. 

“The fact that my daughter and my students with development disabilities get the chance to hang out with their buddies and do fun activities is such a revelation for them,” she said. “You have to really see it to experience how much fun the kids have.”