Sound support: program helps families navigate new world of hearing

Receiving a cochlear implant as a baby was only the beginning of 10-year-old Rhys Craker's hearing journey. Learning to live in a world full of sounds, with a cochlear implant, takes adjustment—for the patient and everyone in their life.

It's the mission of Michigan Medicine's Sound Support program, an arm of the Cochlear Implant Program, which is also available through CS Mott Children's Hospital, to help all involved manage the changes and thrive.

Rhys' family has received that support starting from when he was diagnosed with hearing loss to his cochlear implant surgery, and into his schools and home, where Sound Support offers services and training to the people in his life.

"U-M had it set up for us. It was wonderful," said Rhys' mother, Jaymie Hatt of Traverse City. "They kind of said, 'Here are the steps we take. This is how often you'll have to come down. These are the things that we're going to do."

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Established in 1984, U-M's Cochlear Implant Program is one of the oldest in the country and has restored hearing to more than 3,500 children and adults. Sound Support started as an outreach program in 2004. It is funded by a matching grant between the U-M Department of Otolaryngology, Head and Neck Surgery and Michigan Medicaid.

The mission of this outreach program is twofold: 1) Improve the quality and timeliness of care for children who are deaf and hard of hearing, including diagnosis, treatment and rehabilitation of hearing loss; 2) Reduce the costs associated with medical, social and educational management of hearing-impaired individuals as they become adults.

Sound Support's outreach is available to any child with hearing loss in the state of Michigan. Its unique approach combines medical treatment and rehabilitative treatment on campus and through connections in communities around the state.

The program's diverse team comprises audiologists, speech-language pathologists, auditory-verbal therapists and pediatric otolaryngologists. Together, they work to improve the timeliness of early diagnosis of and intervention for hearing loss.

After diagnosis and intervention, the relationship is really just beginning.

"We couldn't just put an implant in a child and then send them off to their school or back to their home community without any training or assistance," said Sound Support director Teresa Zwolan. "So, we make sure that our program provides outreach to all related professionals in Michigan to maximize the outcomes that our children with implants have."

Sound Support provides onsite training to teachers, therapists and others who work with children who are deaf or hard of hearing on a variety of topics, including cochlear implants, hearing aids, auditory-verbal therapy and assistive devices.

"We know that our work can't end at our clinic door," Zwolan said. "And not everyone can travel to Ann Arbor, so a lot of our outreach is to educational professionals that work directly with children. This is to teach them about how best to work with hearing devices, and to help children listen and talk the best they possibly can."

Kelly Starr, M.A., a speech-language pathologist and auditory-verbal therapist with the program, has been working with Rhys since he was a baby. Her work happens on campus, and she also travels to communities to help the people in the patients' lives understand their needs.

"Rhys is a patient that I've been working with since the start of his journey at the University of Michigan," Starr said. "In my role, I work with children who are deaf and hard of hearing, teaching them to listen and talk."

Kelly Kochanny, a teacher consultant for the deaf and hard of hearing who works with Rhys at his school in northern Michigan, said Starr and Sound Support are critical to Rhys' success.

"I think kids with hearing loss, it's not a one-and-done type of disability," Kochanny said. "Every year brings lots of challenges and it takes a team approach to help keep the student at the center and Kelly came (from U-M) when Rhys transferred to this school and educated his staff. His parents came, and that's really the ideal model."

Research has shown that children with hearing loss are best served by a community of professionals, as each one plays an important role in helping kids reach their full potential.

Traditionally, Sound Support leads school visits that provide educators with information regarding a specific child, and once an observation of the child is made in the educational setting by Sound Support staff, it is followed by consultations with school employees to discuss the child's progress and specific needs.

Through its many legs, Sound Support works to increase awareness regarding hearing loss and the importance of early referrals among the medical community through presentations at local, regional and state professional meetings.

The program also offers lectures regarding advances in hearing technology, as well as intervention techniques, for undergraduate, graduate and medical students throughout the state of Michigan.

In addition, audiologists, speech pathologists and teacher consultants are allowed an opportunity to network, collaborate and share information through the Sound Support Mentorship Program. This component primarily aims to promote understanding around the impact of hearing loss on early childhood development.

"Through our mentorship program, there is an opportunity for individualized training for professionals who provide diagnostic and rehabilitative services for children with hearing loss throughout Michigan," Zwolan said. "This is really important."

And as for Rhys, he is now flourishing and dreaming of what's to come. He says maybe he'll be an engineer or builder when he grows up.

"There's a lot of stuff that I want to be," he said.

Starr said Rhys is thriving.

"Rhys is in his school functioning with other children his age," she said. "He's doing activities that other kids his age are doing—just being a typical young boy. It's really wonderful to see."