The Care Project and Family Hearing Loss

How the Care Project Supports Emotional Family Hearing Loss Journeys

Parenting a child with hearing loss is an emotional journey.

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Johnnie Sexton, Au.D, calls it “the most rewarding work I’ve been blessed to do.” (J Sexton, personal communication, July 29, 2015). An audiologist with 40 years of experience, Dr. Sexton has led the non-profit organization The Care Project for the past six years. The Care Project has evolved into a two department organization. One department has a strong focus on direct intervention with families; The Care Project provides sponsored family retreats to allow families to connect with each other, explore their emotional journeys, and interact with professionals who volunteer their time to educate caregivers how to advocate effectively for their child who is deaf or hard of hearing. The second department focuses on training professionals in sensitivity and adjustment counseling to better equip them to work with families with children who are deaf or hard of hearing from diagnosis forward. 

The idea for The Care Project started seven years ago when Dr. Sexton was asked to chair a panel at a national conference on state-of-the-art counseling in audiology. After assembling a variety of professionals, the consensus was that while audiologists are good information counselors they did not receive training for adjustment counseling. As a result, most were not comfortable with the emotional component of counseling families with a child diagnosed with hearing loss. Over the next year, Dr. Sexton began connecting with professionals, families, and the film industry in the Wilmington, NC area. They started filming families sharing the story of their emotional journeys. “These film segments bring a sense of comfort to parents with the realization that they are not alone, not broken, not isolated, that their child is not unique and that there is support to be found amongst those families who share in these experiences.” These films evolved into workshops and became The Care Project.

The Care Project has partnered with state-level agencies in 20 states and has received grant funding to expand to 10 additional states this year. In addition to early intervention and newborn hearing screening programs, The Care Project has partnered with universities and hospitals in these states to provide a toolkit for professionals working with deaf or hard of hearing children. This toolkit is a set of resources regarding the sensitivity issues related to the journey and grief process families experience when their child is diagnosed with hearing loss. 

For families who want to become a part of The Care Project, Dr. Sexton encourages them to reach out to him via The Care Project Website to be connected with area resources, attend a retreat, or discuss providing local training workshops. Training workshops are open to anyone who will potentially touch families going through this experience – including audiologists, nurses, newborn nursery workers, teachers, social workers, psychologists, physicians, and other parents. The diversity of the audience often makes for a powerful learning experience.

Dr. Sexton remarked, “The ideal journey for a family is never going to be 100% pleasant and happy. We try to prepare families for that. When they face a new hurdle, decision, or environment for their child (such as transitioning from early intervention to preschool), we would hope we would equip them [the children] and their caregivers with the emotional strength to move forward and advocate for their child. We want their lives to be focused on hope and happiness, success for their child; it really is about life. We talk about the group experience because grief is common to all people. Whatever you would want for any child is what we want you to keep in mind for a child who is deaf or hard of hearing.”

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Article Sources

  • The Care Project (2015).
  • Luterman, D (ed). (2011). Children and Hearing Loss: A Family Guide. Sedona, AZ. Aurical Ink Publishers.