HELPING CHILDREN FIND A VOICE
Assistive communication technology allowed Elli Bennett to find her voice. Her parents, Scott and Joy, established the Find a Voice Fund in Elli's memory.
by Carol Lee '96
March 21, 2011
Parents long to hear their child's first words, interact with them in play, and hear them say, "I love you."
Elli Bennett was 5 years old before her parents, Scott '96 and Joy (Wickholm) '98, heard their daughter's voice. Elli was born in 2000 with a rare heart defect that went undiscovered for several days. At four days old, while in the newborn intensive care unit, her heart stopped beating for several minutes, resulting in permanent brain damage, a lifelong battle with seizures, and severe cerebral palsy. While her cognitive ability was not compromised, and she could laugh and cry, Elli was unable to develop the motor skills to speak.
It was difficult for Scott and Joy to know how much she understood. They could tell she was frustrated and unhappy because she could not verbally communicate.
When Elli was 3 years old, she was identified as a candidate for an assistive communication device called DynaVox. When she got her own at the age of 5, "she became a different girl," Joy said. "She could show us what she wanted or needed, participate in what was going on around her, and tell us jokes. I was getting our preschool-aged kids ready for a trip to the zoo, and Elli went to the zoo page on her screen to tell us she also wanted to go to the zoo."
The DynaVox is a special computer with simple navigation between multiple screens. "It looks like an oversized iPad," Scott said, "The buttons you push on one screen take you to another screen with more choices." The buttons can be words or, for a child, pictures. Some clip art images use stick figures to convey action. Scott and Joy scanned and uploaded images of Elli’s favorite movies and CD album covers so she could choose what she wanted to watch or hear.
Elli's life touched many people. When she passed away in 2008, Scott and Joy knew people would want to do something as a lasting tribute to her life. They asked family and friends to consider a memorial gift in lieu of flowers, and they began to make plans for how to use these gifts in a meaningful way.
Scott and Joy were both professional writing majors at Cedarville, and they both do an extensive amount of writing in their careers — Scott is in corporate communications at Procter & Gamble, and Joy is an avid blogger and is starting a freelance writing business. "Words are very important to us," she said. "We knew we wanted this fund to be about giving children their voices."
The Bennetts worked with the Aaron W. Perlman Center at Cincinnati Children's Hospital to establish Find a Voice: The Elli Bennett Memorial Fund. Elli's memorial gifts and ongoing donations provide assistive communication technology for other families with children who cannot speak.
Devices like Elli's DynaVox can range from $7000 to $12,000, and they are not always covered by insurance. "Communication devices are often lumped in with speech therapy," Joy said. "Some companies would cover it if you had speech ability and lost it — through a stroke, for example — but would not cover it if you never had speech ability. Our insurance provider ruled that it was 'not medically necessary' for Elli. When we considered how difficult it was to get this technology and how dramatically it changed Elli's life, the idea for the Find a Voice Fund came naturally."
The Perlman Center stewards the fund, and Scott and Joy partner on decisions about how the fund is used. "They work with children with this need every day," said Scott. "They send us a list of potential candidates, and we try to find the perfect fit."
Last October, the Bennetts presented the first DynaVox — fully provided by the fund — to a 12-year-old boy from Mason, Ohio. Scott wrote a letter to the family and read it aloud during the presentation. "The moment was so emotional," Scott said. "The boy's smile was incredible. I looked at Joy and said, 'I'd like to do this every week.'"
Scott designed the fund's website and administers its Facebook page. Joy is actively setting up event opportunities to raise awareness and financial support. Last fall, more than 100 Find a Voice Fund volunteers raised over $20,000 through Cincinnati Walks for Kids, an annual fundraising event that supports Cincinnati Children's Hospital. Mason Elementary donated a school year's worth of vending machine proceeds. A local Culver's restaurant donated a portion of one evening's sales every time a patron mentioned the fund. Scott's sister helped organize a Shawnee State University Community Choir tour across southern Ohio, and on March 18, the Mason High School Choir performed a concert to benefit the fund.
The Bennetts hope to see the Find a Voice Fund expand beyond Cincinnati to support a network of children's hospitals across the country. Their immediate goal is to increase the fund so it can be endowed, which Scott acknowledges is a challenge. "We’d like to use the funds we have now to help children now," he said. Once endowed, the fund will generate a perpetual source of revenue for technology that helps children find their voices.
"Elli completely changed the way I see a person with cerebral palsy," Scott said. “Where I grew up, children at school with special needs were taught separately, and I assumed it was because they were not smart. Brain injuries don't always impair someone's cognitive ability. The thinking process is the same; information goes in the same way. In Elli's case, it could not come out. The DynaVox helped her tell us what she was thinking, and we were able to see life through her eyes."
This is a gift Scott and Joy are thrilled to give other parents.
Scott '96 and Joy (Wickholm) Bennett '98 live in Mason, Ohio, with their children, Samuel, Anna, and Luke. Scott works in corporate communications for Procter & Gamble, and Joy serves on the Family Advisory Council at Cincinnati Children's Hospital and blogs at joyinthisjourney.com and deeperstory.com. Learn more about Find a Voice: The Elli Bennett Memorial Fund at findavoicefund.org.