When asked for her most important parenting advice, Lisa C. of Killen, Alabama, the mother of three daughters, says, “Stay a step ahead. Try to predict the next skill they’ll need. Know the special education laws. And develop continuous communication with the people who can help.”
Lisa and Ryan are the parents of three children born with hearing loss as a result of a genetic event called Connexin 26. This type of hearing loss is pre-lingual, occurring before the age of speech development. Today, Ella Marie age 9, and twin sisters Isabella and Sophia age 7, are all bilateral cochlear implant recipients. They are active in school, tennis, church and church choir, and all three are competitive gymnasts. Lisa is an elementary education professor at the University of North Alabama, and, for all intents and purposes, a resident expert across the state for parents who discover their children have hearing loss. Ryan is a senior account executive for a national software company.
“When Ella Marie was born, I studied the IDEA law, especially parts B and C about early intervention and school aged-children—to understand special education law and free, appropriate services to help and accommodate my child. Until she was born, the only experience I had with cochlear implants, was with a first grader I taught early in my career,” she said.
Lisa turned to parents who had children with hearing loss. “They tend to find each other—often through social media,” said Lisa. “A member in a Yahoo chatroom put me in touch with a family in Huntsville with three children with hearing loss.” said Lisa. “Her children are older than mine, and very successful in school. She helped me advocate for Ella Marie at school. Over the years, I’ve learned a lot from other parents, as well as therapists and audiologists, such as what to ask the manufacturer of cochlear implant technology—because the implant and sound processor are just one piece of the puzzle.”
The critical link to listening and spoken language
Like many hearing parents of children with hearing loss, Lisa and Ryan have chosen spoken language as the primary mode of communication for their children. As such, Ella Marie receives auditory verbal therapy twice a month while the twins still have weekly sessions. This therapy teaches children how to listen—not by reading lips or other visual cues—but by learning to process verbal language and speak. It uses a parent-centered approach that encourages the use of naturalistic conversation (not simplistic language) and the use of spoken language to communicate. One of the goals of auditory verbal therapy is mainstreaming children with normal-hearing peers, which makes effective sound processing technology a ‘way of life’ for Lisa’s children and family.
In the past nine years, Lisa and Ryan’s children have worn Cochlear™ Nucleus® 5 Sound Processors—except for Ella Marie, who wore the Cochlear™ Nucleus® 6 when one of her Nucleus 5 Sound Processors was replaced. When the Nucleus 5 Sound Processors neared obsolescence, they began the replacement process for all the sound processors. “I reached out to Cochlear on June 22nd and the Nucleus 7 Sound Processors were activated and mapped for the girls in September,” said Lisa. “I was shocked at how quickly we got insurance approval.” Cochlear is in-network under Lisa and Ryan’s insurance plan; and their insurance considered the replacement sound processors as medically necessary.
“Still, I was very nervous about how difficult it would be and whether insurance coverage would make it affordable for my family. I feared a lot of paperwork dealing with three children, but Cochlear’s Reimbursement and Insurance Services made it smooth sailing. When there was a coding error related to siblings, it was quickly remedied.”
New and improved sound processors signal new victories
Then came the Cochlear™ Nucleus® 7 Sound Processors: “The change from the Nucleus 5 to the Nucleus 7 was huge. Before they were all listening to their iPads with volume and telling each other to turn them down. With three kids it was difficult getting them all hooked up with cords, they just want to turn them on and listen. It’s a huge victory to be wireless.”
The girls’ teachers wear FM microphones that pair with their bilateral sound processors. In addition, Lisa and Ryan have taught their girls to advocate for themselves in school and at the gymnasium—and to participate fully in social gatherings. At a recent school field trip to Montgomery, where Ella Marie went to see the capitol and the museums, there was a pool party in the evening. “She used the Aqua+ 1covers and seemed to do great. She heard her friends in the pool and was in constant conversation with them,” Lisa laughed.
When asked to name her biggest victory, Lisa said it was hard to name one. “Every day is a victory. As you watch your child grow, their brain makes sense of it by turning those little electrode signals into wonderful sound for them. But if I had to name something specific, I’d say getting insurance coverage and wireless listening are big victories.”
Today, Lisa is a frequent speaker at events for hearing professionals. Recently, she took Isabella and Sophia’s first grade teacher (who also taught Ella Marie) to speak to a group of professionals about emergent literacy skills for children with hearing loss. “My key message is to stay ahead of the children’s needs, stay focused on things to come, and be ready for them.”
Find out how a Cochlear Customer Relationship Specialist could help you step into a next generation sound processor.
- Nucleus 7 with Aqua+ is water resistant to level IP68 of the International Standard IEC60529. This water protection rating means that the sound processor with the Aqua+ can be continuously submerged under water to a depth of 3 meters (9 feet and 9 inches) for up to 2 hours. This water protection only applies when you use the Aqua+ and rechargeable batteries.
- The Nucleus 7 Sound Processor is compatible with the Nucleus Profile Series, CI500 Series, CI24RE (Freedom) Series, CI24R and CI24M implants. The timeframe for Nucleus 7 Sound Processor compatibility for other implants depends on research and development timelines, manufacturing processes and regulatory approvals.