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Deaf culture versus the cochlear implant

Aaron says he wasn't sure because he was also deaf. He had been a part of a deaf culture that didn't necessarily trust the idea of an implant that gives hearing. 

ST. JOHNS, Fla. -- We've all seen the stories on TV or viral videos online of people, often babies, getting their cochlear implants turned on. And in those moments we usually get to see and hear the reaction of those babies hearing their mother's or father's voice for the first time. For many, those are eye watering, beautiful moments. But for some in the deaf community, those moments are anything but beautiful.

This issue came up after meeting the Tweet family. Jillian and Aaron Tweet have two sons, a nine-year-old named Ryder and a five-year-old, Beckett. Ryder has hearing loss in one ear but doesn't have any apparatus to enhance his hearing right now. Beckett, however, was born profoundly deaf.

PREVIOUS COVERAGE: Click here to see original story with Beckett Tweet and his use of cochlear implants

"He was about 24 hours old when they took him to have his hearing screening," Jillian remembered. "When they came back the nurses let me know he failed."

She says it was a shock to her system, but not a total surprise. Her husband, Aaron, is also profoundly deaf.

"We had a hard time going through that," Aaron said. "And then doctors suggested cochlear implants, at first I was standing back, not sure."

Aaron says he wasn't sure because he was also deaf. He had been a part of a deaf culture that didn't necessarily trust the idea of an implant that gives hearing.

But Jillian talked Aaron into researching the implants, and finally, when Beckett was 13-months old, they decided to go ahead with the procedure.

Doctors implant a receiver inside the head, which attaches an electrode array through the cochlear of the inner ear and into the brain. On the outside of the head, the patient wears an electronic sound processor, which attaches by a magnet to the receiver. This is that part of the CI we all see. It allows the wearer to hear electronically.

And after doing his research, Aaron even decided to get the implants as well. "With CIs [cochlear implants] I hear all the sounds," Aaron said. "Sounds I never heard before, like the birds, the crinkling of paper, all the small sounds I was missing out on."

Aaron says he made his decision with his wife to get the devices for his son came down to a basic idea.

"I wanted what was best for my boy," he said. "I'm going to get CIs and change my whole life and be right there for him."

But his hesitation to have the procedure done is common in the deaf community. In fact, many in the deaf culture don't approve of the implants at all.

For instance, Judi Hills is a profoundly deaf mother of a four-year-old hard of hearing daughter, Hannah, as well as a profoundly deaf one-year-old named Eva.

Judi, through an American Sign Language interpreter, said she actually celebrating when she found out Eva was born profoundly deaf.

"Yes!" she said. "I'm very proud of that, I wanted to have a totally deaf child."

Which may be hard for someone in the hearing world to understand. But Judi explains it's about having something deeper with her child, a bond they share.

"Total deaf power," she said with a laugh. "Eva and I are both deaf and we are fine with that. We communicate with ASL and that's just a normal part of everyday life."

As for parents who decide to get their children cochlear implants, Judi says she can't understand it.

"That's their decision, but as for me and my children, absolutely not," she said.

She says she respects the decision of the Tweets, though, and that each parent has the right to make that decision on their own.

Which is a mild opinion, Jillian says, compared to what she and Aaron hear all the time on social media about their decision to implant Beckett.

"People call us ignorant parents," Jillian said. "They are angry we would take away from their community."

"They call us bad parents," Aaron said. But the Tweets, seeing what their son has accomplished, have started to ignore the talk.

"We don't let it get to us anymore, we worry about us," Aaron said.

Beckett can now hear just fine. Through therapy, he's able to speak and even goes to a mainstream elementary school in St. Johns County.

"He's just one of the guys," said his kindergarten teacher Jennifer Carlton.

Judi says her daughter doesn't need all of that to live a normal life, and to have every opportunity though.

"Deafness doesn't limit you," she said. "Deaf people can find a good paying job just like a hearing person can."

She says she participates in the hearing world all the time as well.

"I go to festivals, we all go as a family. I have hearing friends. If they don't know ASL then we'll get messages across by writing, it works out fine."

And as for Eva, if she ever made the decision on her own to get cochlear implants: "I would say no," Judi said. "I wouldn't give her permission to do that. When she's 18 she can do that, then it's her decision, not mine."

Although Judi says if Eva did make that decision at 18, she would be disappointed.

There are much stronger opinions than what Judi is sharing though. Some in the deaf culture have written that cochlear implants are a form of "war on deafness."

One article by a professor from prominent deaf university Gallaudet said that cochlear implants are a form of "genocide against deaf culture."

Jillian says she tries her best each day to cut through the comments and messages she gets, to focus on raising her two boys the way she and Aaron saw best.

"At the end of the day, we each get a choice for our family and children. This was right for us."

And where the paths between the ideas of the Hills family and the Tweet family seem most divergent, is also the place where it seems they've found the most common ground.

At the end of the day, both their youngest children are still deaf.

"Beckett is deaf," Jillian said. "At night Beckett still turns his cochlear implant off, he's still a deaf child. But he can accomplish anything."

"Deaf people can," Judi insists. "They can do anything hearing people can do."

There are just different tools to do the job, with very different opinions on the same matter.