In Shelby County, one in four infants who fail their newborn hearing screening do not complete their follow-up testing. “We could’ve very easily been one of those statistics,” says Lauren Hays, executive director of Memphis Oral School for the Deaf (MOSD). “It was just one of those mama intuitions, so we went back and are glad we did. A lot of parents share similar stories.”
Hays gave birth to twin boys August and Landon in 2014, and Landon failed his newborn hearing screening. “My biggest fear as a parent was that they would not be able to communicate with each other,” Hays says. “For my family, our choice was listening and spoken language, so he could talk to his brother.” So at 3 months, Landon was fitted for hearing aids and enrolled in Sound Beginnings at MOSD for weekly sessions with Katie McLeod, an auditory-verbal therapist with certification as a listening and spoken-language specialist. Hays would bring both brothers in, pulling them in a wagon since she couldn’t carry them both. Hays and McLeod now smile at the memory as Landon is about to start first grade having completed the programs at MOSD.
MOSD offers three programs for each stage in a child’s development of listening and spoken-language skills — Sound Beginnings, Sound Transitions, and Preschool — all of which implement evidence-based practices and research. Hays says, “Our goal is that by the time they leave us when they go to kindergarten, they can go to their local district kindergarten programs in a typical classroom, talking like their hearing peers.”
MOSD’s Sound Beginnings is the only program in the area that serves children with hearing loss under the age of 2. The youngest infants they’ve seen have been 6 weeks old. “A child’s brain can really only accept and learn spoken language until they are 6,” Hays says. “We have such a small window before that auditory nerve starts to not be as reliable to learn spoken language. We want to make sure we get them in as soon as possible.”
While their Sound Transitions and preschool are focused on listening and spoken language and do not teach sign language, Sound Beginnings welcomes families who are still learning about different communication options and might be exploring manual options. “We want to make sure that they have a smooth transition into whatever communication method they choose,” says McLeod.
“There’s no right or wrong [choice],” Hays adds. “It really comes down to what the family is most proficient at in the home setting because a child is only as successful as what they’re exposed to with their families, friendships, and communities.” As such, MOSD collaborates with other Tennessee Early Intervention System (TEIS) programs, as well as professionals with different educational philosophies, so parents can know and understand all their options and resources. “It’s a journey,” says Hays, “so we want to make sure we provide them with all the resources they may need.”
“And sometimes that path can change,” McLeod continues. “Parents may have one goal in mind, and we begin working with a family, and they decide as a family to make a different decision. We are there to support them fully with that decision. It’s not like you make this decision at 6 weeks, and it’s not flexible. We are here to support that entire process.”
What’s more important to McLeod and Hays is early identification and intervention, especially through the newborn hearing screening. Still, even if a newborn passes their hearing screening, they can develop progressive hearing loss. One of the causes for this can be congenital cytomegalovirus (CMV), which impacts about one in every 200 babies. Not all newborns with CMV will have hearing loss, but CMV is the number-one non-genetic cause of hearing loss. “It may be the greatest reason for hearing loss at our school,” says McLeod. McLeod also says that Methodist hospitals are now screening all newborns for CMV.
Other factors that might lead to progressive hearing loss include a family history of hearing loss, a NICU stay, and chemotherapy. “Trust your intuition,” McLeod says. “If your child’s listening and language are not progressing as you’d expect, bring it up to your pediatrician.” Parents can also reach out to MOSD for help with getting a referral.
In addition to its programs, the school offers a clinic for outside therapy clients and adult patients. (Children in the outside clinic do not need a diagnosis of hearing loss.) This coming school year, the school will also offer PEP (Parents Empowering Preschoolers) Talk, a monthly support group for parents to discuss different topics and mingle. “Ultimately, parents are the teachers,” Hays says. “We try to empower them before they leave us, so they can continue advocating for their child.”
Alyssa Washofer, one of MOSD’s 2-year-old teachers, will lead the new support group and offer her own insights as someone who has overcome hearing loss and developed impeccable spoken-language skills. “It’s important for us to have our professionals step up and share their own experiences and knowledge,” Hays says. “Our staff members understand that struggle during the hearing loss journey.”
The cost to educate each child is $50,000 a year per child, so MOSD, as a small nonprofit, relies on community support to continue providing the quality of care and education for these infants and toddlers. “People in the community may say, ‘I don’t have any personal experience with hearing loss. Why does it impact me? Why should I become invested in this organization?’” Hays says. “The truth is that our students are coming back [to Memphis] as alumni, as adults, as teachers, as doctors. There are long-term investments to be made in the lives of these kids.”
Once COVID-restrictions allow, the school will be giving tours and will be open to volunteers. For more information or to donate, visit mosdkids.org or follow the school on Instagram and Facebook.