Having a deaf child: “It’s fun”

When Jon failed his newborn hearing test, his parents may have imagined a life of isolation, disability and sadness for him.

They could have imagined this, but they didn’t.

“We were upset for about 10 minutes,” said Nicole Thompson, Jon’s mother. “Once [my husband and I] looked at each other, we had a quiet understanding that whether he was deaf, or hearing or something else, he is our son.”

The thought of what a child cannot do is what parents usually dwell on when their baby is diagnosed as deaf. For Nicole and David Thompson, this was not the case.

The day Jon failed his hearing test at three weeks old, his family began using American Sign Language with him. That was also the day that they began looking at other opportunities for Jon, such as cochlear implants, which involve surgically inserting an electronic device to aide hearing. His family is unusual in the hearing world, as they have given him some hearing with cochlear implants, yet are well-educated about deaf culture and still want him to sign.

Their quick acceptance of Jon’s deafness wasn’t by chance. Nicole had ties to the deaf community previously. While in college, Nicole met a friend who was hard of hearing. She provided Nicole with a base of sign language.

“I had a matter of fate,” Nicole said. “I think that relationship was what helped us be okay with him being deaf.”

Throughout the entire journey, the Thompsons have stayed upbeat and optimistic. They attribute their uncommonly proactive approach throughout raising Jon to their personalities, as well as a supportive family.

Jon’s grandparents took an introductory class in ASL after the family found out he was deaf. They sign and speak with him, and don’t view his deafness as a problem.

“We have disabilities in our family,” said Evie Thompson, David’s mother. “I have a brother that’s disabled, I have a niece who’s disabled. His disability is like nothing compared to physical disabilities [such as] cerebral palsy [or] strokes. He’ll be fine.”

After the failed hearing test at Easter Seals on that crisp autumn day in 2008, they went to Giordano’s for lunch and then began making phone calls, Nicole said.

Nicole, a young and hip librarian, talks a mile a minute about her son’s diagnosis. David, while sometimes overshadowed by his wife, has just as much to say. He is quick to make small talk and to relate to whomever he is talking to. Jon is lucky to have a family that is quick to get a second opinion, and doesn’t blindly accept what they are told.

When the original surgeon at another hospital told them that teaching Jon sign on top of English was not a good option, they consulted another surgeon.

“I have a lot of respect for her but she has a very strong stance against signing with an implanted child,” Nicole said. “She was like, ‘that’s really not a very successful way to go.’ We ended up walking out of there with more questions than we had answers.”

Jon Thompson, a deaf infant with parents who want him to speak in addition to sign language.

Jon, now an energetic 15-month-old infant, has some of both the hearing and deaf worlds. At eight months, he underwent surgery to be fitted with cochlear implants at the University of Chicago Comer Children’s Hospital. He was the youngest child to be implanted bilaterally at the hospital. Typically when someone is implanted, they will only get one implant. In Jon’s case, he has two, making hearing more natural.

Jon wore a modified breathing mask to fit his tiny face while he was put under. His mother held his hand until he fell asleep.

“He’s a very trusting little boy, which probably made it even more heartbreaking,” Nicole said. “I laid him on the table, and they put this itty-bitty mask over his mouth and nose. I watched him fall asleep. He just kind of looked at me, his eyes got really happy. It was leaving the room that I really felt it. I was like, whoa.”

The surgery involved making relatively small incisions behind each ear, then drilling small holes into the skull and inserting the internal components into the inner ear.

The biggest concern in Nicole and David’s minds was if they were doing the right thing. The surgery was not medically necessary, and did carry some risk, Nicole said. They both agreed that the entire process was the longest nine hours of their lives.

“We are willingly putting our child in to have a procedure done, and it’s really not necessary,” David said. “We could have basically done nothing [and] raised him in deaf culture. We looked into it, trying to determine what was best for him. It’s not what’s best for us. It’s his life that we’re playing with.”

After surgery was when the true struggle began. They are in the first of many years of audio therapy to give Jon the best chance of talking like his hearing peers.

Cochlear implants provide hope for many families that their child will be able to perfectly assimilate into the hearing world, the Thompsons said. They have a path that is less primrose and more practical, David said.

“A lot of parents seem to think that if they do the implants that their kid is fixed and that he’s hearing, which is ridiculous,” David said. “He’s deaf, he can’t hear a thing right now [Jon had his implants off at the time]. We don’t have any illusions. We understand that when he has them off he has to be able to communicate.”

The Thompsons had several reasons behind their choice to implant Jon so young, one of which was the delicate timeframe in which humans learn language.

“Between zero and three [years] is your real opportunity,” said Dana Suskind, the surgeon who did Jon’s implants. “Oral language is so important for you to be able to read. If you’ve never heard the word dog, it’s much harder to read it. If you don’t get it early, those brain connections that help you with spoken language [do not develop.] The older you are, the more difficult it becomes to develop oral language.”

Another reason was more personally focused, as Nicole noted. They want to be able to hear Jon talk.

“We’re hearing parents, we want our child to say ‘mommy’ and ‘daddy,’” Nicole said. “Let’s be honest. It’s kind of a selfish choice too. I want my son to be able to look at me and say, ‘Mommy I love you.’ That’s just as much of a part of the motivation as it is to give him every opportunity. I don’t think a lot of parents admit that.”

Jon decided to nap while his parents spoke about his surgery

A scenario David explained was if an implanted child had a nightmare and came to his parents for comfort in the middle of the night, speaking is not an option, as the child does not have his or her implants on at night.

“[If] our kid comes in our bedroom at night, scared, he’s had a nightmare, and wants to be in our bed, he can’t hear me,” David said. “I can’t tell them to go into bed, all they see is a moving face and hands, and they don’t understand what that means.”

While they have tried to provide him with every opportunity, every path possible, they openly acknowledge and embrace the fact that the final choice is his.

“Looking into the future, if at some point in time he decides that he does not want to have the implants on anymore for the rest of his life, that’s fine too,” David said. “We want to build a base where he will be able to float between the world of deaf culture and the world of the hearing.”

From their long-term plan for Jon to the cavalier way they handled a potentially earth-shattering bit of news, the Thompsons are unique in the best way.

David summed up this quirkiness well. When discussing the entire process, he just smiled and said, completely honestly, “It’s fun.”

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