This guest post is by Sarah, mom to Ruby, age 11; they live in Brooklyn, NY. Ruby was born with a rare brain malformation on the right side of her brain, polymicrogyria, that has caused left-side hemiplegia, learning disabilities and sleep and seizure disorders. “While on paper the diagnosis sounds terrible, her loving and sweet spirit pushes her through so many challenges,” says Sarah. “Her love for animals, drawing Anime cartoons, fashion and her sense of humor make her shine.”
Ruby loves dancing, too. This is her second year at Dancing Dreams, a nonprofit that offers dance classes and performances for children and young adults ages 3 to 21 with medical or physical challenges in New York City, Queens and Long Island. Here, Sarah shares the impact that the program has had on her daughter’s life.
When Ruby was small, she loved music and dance, as many little girls do. We searched and searched for a program that could accommodate her needs and couldn't find anything. We finally signed her up for a class when she was 8—we thought it could work for her because the class size was small.
Even though I’d explained to the teacher that Ruby's body was different, during the first class she was adamant about teaching Ruby as if she didn't have challenges. Because Ruby’s left hand barely functions, and her left side is weak, she was unable to accurately hold her arms over her head, or follow the basic ballet stages. Her mind and body could not coordinate with the routines that all the other girls were doing.
I watched through a viewing window as Ruby kept doing things wrong but kept trying to keep up. A few times, she couldn’t keep her balance and fell over. I never once saw the teacher try to help. It wasn't an environment of compassion and acceptance. In short, it was a total disaster. Ruby left the class crying and I was heartbroken.
We found Dancing Dreams after her rehabilitation doctor and OT mentioned it to me. From the start, it was a completely different experience. Everyone was kind, supportive and encouraging, and Ruby had so much fun. She danced alongside girls in wheelchairs and walkers. All students had a mainstream teenager by their side to help.
Joann Ferrara, the founder of Dancing Dreams, also ran the class and she was so encouraging and positive. The general vibe of the room was happy and upbeat. Everyone was engaged. From the back of the room where I waited with the other parents, I could tell that it was pure pleasure for all the girls to have this space. It wasn't about specific abilities or technique, but about giving your all for the love of dancing.
When I asked Ruby afterward what she thought, she said, "Dancing Dreams made me feel comfortable with my body."
As a parent of a child with a disability, that is the greatest gift. It is a confidence that Ruby takes with her every day in her life. She had a moment around age 10 when she realized she has a disability, and being part of Dancing Dreams has helped her embrace it and understand that different people have different abilities.
Last spring, Ruby spoke to her entire school when a visiting author, Sharon Robinson (Jackie Robinson’s mother), was there to talk about overcoming racism. She gave a short speech that she'd written about how she overcame having a disability to dance. To hear her speak about this without any prompting from us or her teachers showed to me what a deep impact Dancing Dreams has had on her. It is being surrounded by other children that may have different disabilities, but who share a world where things don’t come easy.
Ruby has been in two performances since she joined Dancing Dreams. Both experiences have been exhilarating for her, especially since there are makeup artists and costume changes! They offer students the opportunity that they otherwise would not have: to perform on stage in front of family and friends. They get to feel the nerves, pride, joy and exhilaration that comes with that. They are surrounded by encouragement without judgement.
At the dress rehearsal for the Dancing Dreams 2018 Spring Peformance
Besides Ruby enjoying her dancing, what also makes me feel so fortunate is the teens who help. They better understand our children's lives, and become messengers on their behalf to spread kindness, empathy and knowledge about disabilities. They break stigma among their peers and family members, who may have never interacted with a disabled person. Each helper has changed the life of the child they help; they create a bond and support that is special. That’s what I call a win-win.
We're so grateful for being part of this community. Joann is a visionary who is helping the disabled community in multiple ways. The good that comes out of Dancing Dreams is not only for the children, but for us parents and knowing we have found a fit. I hope the program expands so that more children can experience how special Dancing Dreams is.
Ruby's helper graduated this past year. While she was sad to see her leave, she looks forward to meeting her new one this fall. She also has requested to help with the younger class! Ruby is drawn to being a helper, and models herself after the teenagers. She feels at home in class—and free to express her truest self.
Find out more about Dancing Dreams here.