When Jonna Cooper searched for a community of parents on a shared journey, she came up short. But rather than giving up, she was determined to make a way for her family and others.

Cooper’s daughter, Maggie, is almost 2. She was born without an ear and an ear canal, leaving her completely deaf on one side.

Maggie is Cooper’s third child. After an uneventful, full term pregnancy, she struggled with guilt about whether she had done something wrong.

“For the first 24 hours, I was devastated,” she said. “I had sushi a couple of times, so in my brain it was ‘Was it the sushi? Was it lunch meat?’ It’s just one of those things.”

From the start, Cooper didn’t know what she didn’t know – she felt that she was reinventing the wheel at every turn.

“No one had told me about Baby Net (South Carolina’s early intervention program for infants and toddlers with developmental delays),” she said. “I didn’t know that existed.”

Once Cooper plugged into care, Maggie was set up with an early intervention specialist at the South Carolina School for the Deaf and Blind and she works with a speech therapist. Though Maggie doesn’t speak, she can use sign language to communicate about 30 words. And the list is growing.

“Most babies have that cognition before they can communicate,” Cooper said. “If I had known what I know now, I would have taught my older children to sign. What’s the worst-case scenario? She will be bilingual. I get some raised eyebrows when I say her first language is sign language.”

After a couple of bad of experiences with hurtful comments from moms who did not understand Maggie’s needs, Cooper sought a group of parents of other deaf and hard of hearing children. She started with Upstate Parent, but did not find a group that fit the bill. Even Google left her without the right fit. Undeterred, Cooper decided to start from scratch.

“I got so tired of being looked at like the oddball,” she said. “A lot of it is ignorance. Even if I could find her one other friend – I couldn’t find it and I decided to make my own.”

The group, The Ear-Resistibles, meets weekly at various parks. Cooper lives in Anderson, but she wants to include parents from Greenville and other parts of the Upstate, rotating meeting locations to make it convenient for anyone who wants to participate. The first week, only one other family showed up, but that was enough.

“I feel like I had clawed my way and fought to get her the help she needed, so something like this – every child needs socialization,” she said. “Even if not for your children, parents benefit from having someone to share your experiences with. Other parents can be sympathetic but they won’t understand.”

The Ear-Resistibles, a play group for deaf and hard of hearing babies, meets from 10 – 11 a.m. every Wednesday at different parks throughout the Upstate. For details, call 864-559-2632 or like the Facebook page, which announces meeting updates.

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