A Family Celebrates Disability and Possibility

By Ashley Jones, California H&V with Sara Kennedy, Editor

People in this world often struggle to understand and accept differences. The Jones family is on a mission to change that in their circle of influence. “When one child is hard of hearing, I think it is important to become a “hard of hearing family”, says Ashley. This busy mom and her husband Ayinde have five children, with four kids ranging from 8 months to 7 years old, and recently added their 17-year-old nephew for whom they are guardians. Two of their five kids have hearing differences.

This family is breaking barriers and working to inspire others to embrace differences.

That journey began when Alijah, an active five-year-old, was identified with hearing loss two years after his birth in 2018. “Like most parents in our position, we thought it was fluid,” Ashley said. She notes that her pregnancy and birth were typical in every way; there was no history of hearing loss in the family. The screenings were difficult; Alijah was an active baby. His follow up to diagnosis was also impacted by the pandemic and scheduling backlogs at the audiology center. Once Alijah was identified, the family quickly agreed to a full evaluation of his needs, noting that he had some unusual responses to sensory tasks like getting his face washed. Around the same time, his little sister was born. Ayla (now two years old) was identified very early and started wearing hearing aids by six weeks, which has made a huge difference in her development. Ashley took this revelation in stride. The family was determined to embark on a mission to ensure that all of her children felt loved, supported, and celebrated for who they are, hearing or not hearing.

Ashley drew from her experience using baby sign language with her oldest son (seven) and continued that with Alijah. She dove in with resolve to learn ASL as a family once Alijah was identified with a hearing difference. Six months later, the team and parents have been getting a handle on his sensory profile. Alijah has responded well to hearing aids and spoken language with lots of visual supports. This emphasis on listening and spoken language with ASL and extra visual supports has served the family well. Ayinde, Alijah’s father, also had some experience to draw upon. Before becoming an attorney, he worked for an organization that supported people with disabilities. “You never know until it happens why you might be drawn to learn or experience certain things, says Ayinde. When the couple learned that Alijah’s hearing difference was likely genetic, something clicked for Ashley. “Maybe this wasn’t something to mourn or to worry over… maybe this means we were to learn more about how Alijah (and others) are uniquely wired.” Their approach is paying off with better inclusion; Alijah enjoys school and learning new things. Last year, he was voted best dancer by his teachers and classmates. He also takes great pride in caring for his younger siblings (sister Ayla and a new baby sister).

Ashley has a message for other parents. “Learning everything you can about your children and how they experience the world is crucial.” Instead of dwelling on challenges, Ashley envisions creating family celebrations of disability and inclusion, fostering an environment where everyone is accepted, regardless of how their ears, brains, and bodies might operate. When her oldest son, Ayinde Jr. expressed his discomfort at looking at body differences in one of many books in the family book collection about disabilities, she responded with empathy for his feelings. While she was glad he was honest with her, she reminded him, “You don’t have to like it or feel comfortable around these differences, but you do need to treat everyone with respect and kindness.”

Reflecting on their journey, Ashley notes that she does wish they had been more assertive in pursuing testing for Alijah early on. However, she embraces looking ahead, echoing a sentiment from one of Alijah’s teachers: “Let’s not have a looking backward approach. What can we do now, with Alijah’s skills, our support, his equipment, and what we know to do, to make tomorrow the best it can be?” While people in her community sometimes react with a stereotypical “sad face” when the parents introduce their kids (some react to seeing hearing aids or seeing sign language), we make sure everyone knows that all of our kids are awesome and that we are grateful to have them and are greatly blessed. We are modeling that response for our kids, she says.

Ashley is already seeking opportunities to volunteer, to get involved, and to share what she knows with families and the deaf/hard of hearing community. “The more educated you are on what it means to be Deaf/hard of hearing, understand the Deaf community, or whatever difference your child might have, the better it is for you and your relationship with your child.” She thinks a lot about their future, thinking aloud. “Our job is to equip our children to enter the hearing world… but also ask society to adapt to them and to welcome our kids fully.”