According to the Gallaudet Research Institute’s annual survey of deaf and hard-of-hearing children and youth in the United States, 90% of children who are deaf or hard of hearing are born to hearing parents. This shows there is a gap in a parents’ ability to communicate with and understand their own children. Such confusion undoubtedly can lead to emotional stress and loneliness for parents. Audiologist Johnnie Sexton has recognized problems these families face by having no emotional support, no outlet for their feelings and no sense of community. In an effort to educate others about the issues and provide a support system, Sexton started The CARE Project in Wilmington in 2010. Although now located in Raleigh, Sexton still has deep roots in our coastal region. “That is why we are coming back for our 10th anniversary,” he says. “Wilmington is home.”
Cameras will be flashing as attendees arrive at CARE Project’s Roaring ‘20s Gala, held this weekend at Cape Fear Country Club. The annual fundraiser provides CARE a chunk of funding for the year (2018’s gala brought in $65,000). Yet, Sexton and his team seek financial support through several other small-scale fundraisers a year (Wrightsville Beach Family Fun Day and PPC Conference). In addition, Sexton works behind the scenes, writing grants and proposals, to provide the means necessary to travel across the nation and internationally, to reach as many people as possible. His goal is to work with and educate professionals—doctors, nurses, audiologists, speech pathologists, teachers, and members of state departments—so they can better communicate with patients, clients, and pupils and improve care. Sexton’s primary contacts in every state are based on individuals who work in healthcare and conduct state testing on newborn’s hearing. “All states now have laws that require babies to be tested for hearing loss before they are sent home,” Sexton informs.
In some states, it is a recently passed law (North Carolina passed it 20 years ago). CARE is now named by the Department of Health and Human Services in North Carolina as the official family-based support organization for the state. They also rank in the top two in America.
Sexton—who graduated from ECU with a master’s in audiology and was named the number-one audiologist in the U.S. in 2018—lectures and hosts retreats for families across the country. He has traveled from Vermont to Idaho, New Jersey to New Mexico and even to Israel to fulfill CARE’s mission. Part of this mission focuses on one-on-one counseling for families to express their raw feelings, free of judgment, and help improve their day-to-day lives.
“We are not a culture really known for expressing emotions appropriately,” he says. “We bottle it up, we deflect, so the first step is to get parents to open up about what is happening within their family.”
His goal is to eradicate boundaries, by having families share their stories, to mitigate feelings of shame, loneliness, fear, grief, and myriad emotions that come with facing hearing loss in a family. His outreach tactic started on Bald Head Island when Sexton’s husband, CARE cofounder and media director Xris Kesler, began making videos for families to discuss their various journeys.
“For families, it is a way to express emotions in a different way, and it allows for reflection as the family moves forward—therapy in a sense,” Sexton says, “For professionals, the filmed stories give a true, rare insight into family dynamics outside of a professional setting. It brings greater sensitivity to a family’s emotional journey.”
The success of this method is exemplified by the Wilharm family, who met Sexton when their daughter was 3 years old. Through CARE, the Wilharms felt supported to become parent leaders, helping other parents on their family’s hearing-loss journey. The Whilharms’ daughter, now 11 years old, faces new challenges—school, socialization, peers—so they recently attended The CARE Project Teens/Tweens Family Retreat for more support and information.
Sexton publishes all of CARE’s videos for free on the project’s YouTube channel. Videos focus on their goals, and even include sensitivity training sessions.
The retreats and workshops CARE families partake in are also free of cost. They consist of three-day experiences throughout the year, including children’s activities for all ages; opportunities for parents to join in camaraderie; and separate seminars for mothers and fathers. Professional adults with hearing disabilities volunteer to be a member of the panel at the retreats and answer questions from parents.
“Families arrive pretty raw emotionally,” Sexton admits. “They are taken through a day of sharing, then a lot of fun, then [are shown] what their future can be like.” Sexton begins every retreat the same, by stating: “Look around the room: You just created a new family—your CARE Project family—and we will forever be here for you.”
To keep CARE’s output improving and growing, grants and fundraisers support their mission financially. The funds don’t go to administrative salaries, either; besides Sexton’s administrative assistant, Lara Pike, CARE is completely a volunteer-based organization. Sexton praises the volunteers for going the extra mile. Many even attend leadership trainings.
“We have a lot of people who are so passionate about what we do that they want to do it,” he tells. “So CARE lives beyond me. I won’t be here forever, and I don’t want it to go away. Parents today are doing what I do for others. It’s happening across the country now; it’s this big ripple effect.”
The CARE Project already has reached thousands of people across America in its short decade of existence. Its success is based on an ability to form life-long relationships. The next step in the organization’s evolution, according to Sexton, will be realizing a CARE Project National Center to host the family retreats. He envisions the center working with lots of nonprofits that help children with disabilities as well.
To help get there, CARE will host its 10-year anniversary in Roaring ‘20s fashion—flapper dresses and zoot suits included. The CARE Project’s annual gala will take place February 8, and invites guests to walk the red carpet, enjoy mimosas, mix and mingle, eat heavy hors d’ouevres, and participate in a live auction to win prizes like a vacation getaway at Bald Head Island, diamond and topaz earrings designed by Star Sosa of Wilmington, tickets to “The Sound of Music,” and even a kids package featuring American Girl’s brand new doll with hearing loss, complete with hearing aids. Local director Ray Kennedy has put together a Broadway-style floor show, and folks will enjoy dancing as well. Tickets are $125 and all monies go to help CARE’s goal of raising $125,000 in 2020.
Folks who wish to volunteer for CARE can download and submit the volunteer application on the organization’s website, thecareproject.com.