Auditory Verbal Parents
 

 
 
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Catching Up– Quickly!

When Elliot was about 4 or 5 months old, Kevin and I went to a week long session to learn S.E.E., which is Signing Exact English. It was overwhelming. I remember that I was lost most of the time, barely able to recall a few words and parts of songs. I was trying to take care of my baby at the same time, and that was a full-time job. Kevin did a little better than me, but in the end when we would catch Elliot’s attention (because babies at that age do not have the visual acuity and awareness to watch moving hands much) we never could remember the signs were for what we wanted to say. At the same time I was learning more about Auditory Verbal Therapy. I distinctly remember riding to Indianapolis with Kevin saying “so why did we take that class, then?!?” when I explained the tenets of AVT and why I thought it made the most sense. At the time I could only say that I was trying to figure out what we were doing and how to proceed. We had lunch with a parent at the workshop whose son had a common cavity rather than a cochlea and was getting a tiny benefit from cochlear implants… what if that happened to us? We also met a teen who had been implanted as an older child, and we could see the struggle to communicate. It became immediately evident that, while the world assumed that we would learn sign language to communicate with our son, it would not be a way for us to truly communicate WELL with him.

In early October, the Fort Wayne newspaper covered our story:

Hearing ability will develop as boy grows

A 9-month-old is the state’s youngest to receive a cochlear implant.

By Nancy Nall
of The News-Sentinel

In her “crying in the shower moments,” Amy Kwilinski thinks of the beach.

The beach, where one of the rituals is taking off your watch, your jewelry, and any other valuables that might be harmed by exposure to sand and grit and water.

“But how do you tell a child to take off a $5,000 device that allows him to hear?” she wonders. It’s not the device she worries about; it’s her son Elliot’s ability to experience the beach the way everyone else does.

Those moments pass pretty quickly, though. Kwilinski and her husband, Kevin, know that $5,000 device – a cochlear implant – will give their son an excellent chance at experiencing life the way everyone else does.

Next week, if all goes as scheduled, Elliot will travel to Riley Children’s Hospital in Indianapolis and there become the youngest Indiana resident to receive one of the electronic devices, which help the profoundly deaf to hear in a manner approaching natural hearing. He’s only 9 months old, still nursing, not yet crawling. But his young age will allow him to adapt to the implant in a way older recipients might not – and get the maximum benefit from it.

“We wanted to take advantage of the brain’s plasticity,” said Amy, 33, who has been researching deafness, deaf culture, hearing aids and cochlear implants since Elliot’s disability turned up in a newborn screening. In infancy, the brain is wired to learn, and learn quickly; they want Elliot experiencing the world of sound before his personal learning window narrows or closes.

A cochlear implant works through its three main parts – an external microphone, which picks up sound; a microprocessor, which codes the sound into a series of electrical impulses; and a wire that carries those impulses into the human cochlea, where they are sent to the brain and understood as sound. It is an imperfect way to hear, but an enormous improvement over conventional hearing aids.

And for an infant, whose brain is especially open to learning about sound and what sounds mean, it’s a golden opportunity, Amy believes.

“Who really knows if the way I hear is the way you hear,” she said. “The important thing is, we understand one another. . . . (People who’ve lost their hearing and then received cochlear implants) say that the voices sound like Darth Vader and Minnie Mouse at first, but you get used to them. And you recognize the voices as speech and know what they’re saying.”

Cochlear implant technology is advancing in huge strides, as well, Amy said. The latest implants represent enormous improvements over the earliest ones, and the technology itself is only a few years old. By Elliot’s adulthood, she hopes, the devices may be so small and so sophisticated that know one else need know a person is wearing one.

Many in the deaf community are opposed to the implants, particularly in children. Deafness, they believe, is not a condition to be cured but a trait of human diversity. Adults might choose CIs, but children should not have the choice imposed upon them. The Kwilinskis reject that argument.

“It’s much more difficult for a person to learn to process sound the older they are,” Amy said. “And for Elliot to talk until then, he’d have to use sign language. I want him to be able to communicate with everybody, and to choose any career he wants. What if he wants to be a surgeon? How can he work with his hands if he has to talk with them, too?”

The surgery is only the first step for Elliot. It’ll be a month before the device is activated, after which he will spend time with audiologists and speech therapists to calibrate and adjust it, effectively turning on an entirely new sense in a person who lacks any framework to understand it. After that, “it’ll be pretty noisy around here,” Amy said. She expects lots of crying, followed by sounds of delight.

“People who’ve done this with their toddlers say within a few days, the kids don’t want to take them off,” she said.

“We went to a convention (of cochlear implant recipients), and I sat there with tears in my eyes, watching these teen-agers talk to one another,” she said. “I know this is the right thing to do.”"

We completed all of the candidacy requirements for the surgery, and Elliot’s first surgery was at 9 months of age. It would have been a month or so sooner had we been able to get the combination of insurance in order and the special exception for the MEd-el, which was only FDA approved immediately prior to his surgery. But we were pleased with his age at implantation.

On October 9th, I reported the surgery news to my friends and family:

“Everything went well! We’re happy to be home. The worst part was before surgery, when he couldn’t have anything to eat for 4 hours prior we were admitted, due to the anesthesia he was to have. He awoke at 3 AM and got very upset…we walked with him for an hour and a half…then got in the car and drove for an hour and a half (fortunately, he fell asleep). Part of that time we circled a Starbucks parking lot, waiting for it to open. Then we went to Riley Hospital at 6 AM. There is a lot of waiting, but he was administered a sedative (?) med. for part of that…we got regular reports from the staff and the actual surgery began at 8:50, about an hour after they took him to anesthesia.

It lasted a little over 2 hours, after which Dr. Miyamoto came and spoke to us. He was beaming, and obviously loves his work! Things went very well. Elliot is the youngest recipient of a Med-El in the U.S. and the youngest IN resident to receive an implant.

Elliot was sleepy most of the day after surgery. He nursed immediately when we woke up, and never cried during the day except when I would turn him around to the other side, and only momentarily. He slept Monday night, too…we left the hospital at 8 PM, after the Doctor’s approval, so that we could all get a good night’s sleep. We returned in the morning to have the bandage removed, and everything looks great. His scar is smaller than many I’ve seen, running from behind his ear and up for about 3 inches. The implant is not directly under the scar, but rather up further. No hair was shaved, and the stitches are dissolvable. Elliot is perky today and, except for a bit of swelling, looks back to normal.”

The day after surgery

The day after surgery

Back at home, we enjoyed the fun of a newly hearing baby. I wrote to a friend:

“Oh it’s just hilarious around here. The big boys are in bed and Elliot sneezed for the first time with his CI and just chuckled about that and again when I imitated it. He keeps staring at my face while nursing, something he didn’t do as much, and I keep talking to him…it falls off when he nurses on the left so I’ll probably end up lopsided after awhile…”

In early November, the newspaper did a follow-up story about Elliot:

Family grateful for gift of technology

A cochlear implant is allowing their 10-month-old son to hear.

Kevin Kwilinski catches his infant son’s eye and croons, “Ah ah ah ah ah.”

“Ah ah ah ah ah,” Elliot, the baby, croons back. In any other house with a 10-month-old, this would be commonplace, pleasing to parent and child, eliciting smiles all around.

In the Kwilinski house, it is something of a miracle.

A month ago, Elliot’s reply might have been silence, or a random growl or vocalization. Born profoundly deaf, Elliot had no way of interpreting his father’s open mouth as imparting anything of significance. His own baby babbling, incessant in hearing children, was starting to quiet, as his ears failed to carry the message of his own voice back to his brain.

But today, three weeks after his cochlear implant was activated, his brain is getting the message.

“Mm mm mm mm mm,” Kevin prompts.

“Mm mm mm mm mm,” Elliot replies. Another miracle.

On this Thanksgiving weekend, the Kwilinskis have much to be thankful for. Elliot, one of the youngest children to receive a cochlear implant, is responding beautifully to it, the delights of his new sense evident on his face.

“At his two-week check, they turned it up a little bit,” said Amy, his mother. Because Elliot can’t tell them what volume is most comfortable for him, such adjustments will be a regular part of his therapy until he can. Audiologists at Riley Children’s Hospital in Indianapolis look for cues as they tune the device – crying, or a blink.

The cochlear implant does not replace natural hearing, but it is by far the most sophisticated device for deaf people who want to hear. Working through three parts – an external microphone, a microprocessor that codes sound into a series of electrical impulses and a wire implanted into the cochlea – it serves as a sort of mechanical ear, bypassing the faulty one and sending signals directly to the brain.

What an implant wearer hears isn’t natural sound, but it is close enough that it can enable a deaf person to speak normally and interact with the hearing world. And for an infant like Elliot, whose growing brain is wired to learn language rapidly, it offers the next best thing to a cure.

Of course Elliot doesn’t understand what is happening to him. He wears a knit cap, tied under his chin, to protect the wire from his exploring hands. The microphone and processor – $6,000 in equipment about the size of a small cigarette lighter – hangs from it by a safety pin. So far, so good, but both parents keep a sharp eye on him as he scoots around on his hands and knees.

“Children can learn pretty early to leave it alone,” said Amy, who relies heavily on Internet mailing lists to communicate with other parents whose children have cochlear implants. “But we have a few spare parts.”

In just a few months, the Kwilinskis, who also have a 7-year-old and a 4-year-old, have gone through enough changes to unnerve any family. In the new year comes another – they’re moving to Denver. But this change is welcome, taking them to an urban area large enough to support the highly trained therapists Elliot will need.

“He needs an auditory-verbal therapist,” said Amy. “Indianapolis has three. Fort Wayne has none. We won’t have to drive so far to get him to one.”

The Kwilinskis are well aware of how fortunate they are. Elliot’s deafness was diagnosed during a newborn screening at Parkview Hospital, giving them an immediate start on how best to treat it. Kevin and Amy are both college-educated and capable researchers on-line and in libraries. Kevin has a good job with excellent health insurance that covered Elliot’s surgery and cochlear implant, and Amy is able to stay home to work with Elliot – all advantages other children born deaf might not have.

“We know we’re lucky,” she said. “The average age for this sort of deafness to be diagnosed is around 2, 2«.” By the time Elliot is that age, it’s entirely possible his speech and language development will be on a par with hearing children his age; only the device behind his right ear will indicate he’s different.

For now, Amy is Elliot’s primary therapist, playing games to teach him to associate sound with speech and speech with communication. But he’s doing much of the learning on his own, as he processes the sounds of life around him.

“It’s been incredible,” said Amy. At a musical performance last weekend, he was “clapping and dancing” on Amy’s lap. “I was walking around the mall yesterday, and for the first time it was clear to me that he was acting like a hearing child. He was turning his head toward the sound of a little girl talking, looking for the music in the stores.

“It really works,” she said. “Elliot hears.”"

Christmas, 2001 (Elliot was 11 months old)

Christmas, 2001 (Elliot was 11 months old)

During the candidacy process for the cochlear implant, we had met Elizabeth, a wonderful speech therapist on Dr. Miyamoto’s team who specialized in oral methodologies and we asked her to be our speech therapist. The problem was that the drive was impossible to do weekly (and take and pickup a 1st grader and preschooler to and from school). She would not do anything less than weekly sessions. Distraught, we finally found that there was an AVT near Indianapolis who would see us on a less regular basis. We saw her two times before we found out that we were going to be moving to Colorado. She referred us to a therapist who had trained her, and we contacted Nancy immediately. She agreed to work with us as soon as we arrived in Colorado! We had begun to be convinced that we really believed in the tenets of Auditory Verbal Therapy, anyway. As an La Leche League Leader, I was amazed at how the philosophies matched up in one particularly important area– that the parent is of crucial importance to a child. Even the teaching of my religion agrees: the parent is the child’s most important teacher. We know our child best and can best meet his needs.

We began official, weekly AVT right about at Elliot’s first birthday. He was already showing great signs of hearing well, and things took off. About 1 out of every 4 sessions was difficult because of behavioral issues. Retrospectively, I think that this is common– toddlers are this way!– but at the time I was nervous and worried and did cry a few times on the drive home. Would it work? Were we wasting time and money? What if we never communicate easily with him? There were always exciting words being learned, though, and before long, phrases. Every month we saw more and more progress. Mappings went well, therapy progressed. Nancy reported that his progress was very quick.

By the time Elliot was 2 we knew that he was nearly on-par with his hearing peers. We found out that summer that we would be moving to Georgia. When we told Nancy, she let us know that we were almost “finished” anyway! I was excited and pleased. Although I knew he was doing well, the thought of being finished with AVT already was a bit surprising and even frightening. So, when we moved to Georgia, I met with the team at the Auditory Verbal Center in Atlanta. They watched and listened… and finally, they basically asked me why I was wanting more therapy for him! It was clear from their reactions that they did not feel that he needed any more. I realized that I had no interest in making the long drive to the city if it wasn’t needed. We were in the process of requesting insurance coverage for a 2nd cochlear implant, and that battle would end up taking a lot of time.

Colorado baseball fans

Colorado baseball fans

When Elliot was first implanted, there were not children being bilaterally implanted in the United States. Before long, though, a few kids began getting 2nd sides implanted. We knew that we wanted this for Elliot for many reasons– in case of failure on the other side, for better hearing in noise, for localization of sound, and hearing during battery changes. We knew that the longer we waited, the worse his outcome could be on the unimplanted side. We spent about 18 months battling with Blue Cross and Blue Shield. They denied three times, and then we took it to the State Insurance Commissioner’s office, with the help of the Let Them Hear Foundation. The denials were overturned and we scheduled his 2nd surgery!

(Note: Melissa and I had become fast friends on CI circle, but we also shared another link at this point. Her daughter’s beloved therapist, Mary Ann, had been trained by our therapist, Nancy. So we both had very similar styles… and clearly it was a GOOD style! When I figure out how to do it, I will be posting video examples of Elliot’s AVT.)

Filed under: Amy — Amy Kwilinski @ 4:27 pm

4 Comments

  1. Well, the things you find when you Google your name! I’m thrilled to hear this update on Elliot’s, and your family’s, story. Best of luck in the future as you walk this road.

    BTW, I’ve moved since we talked, too, and did a story on a group called D-PAN (Google ‘em) here in Detroit a couple years ago. Really interesting guy who runs it, profoundly deaf, no CI, but the child of two musicians and the BEST lip-reader/deaf speaker I’ve ever heard. We talked about infant CIs and lots of other stuff; he had some interesting things to say about deaf culture and the like. He struck me as someone who really walks that very thin line between two worlds.

    Anyway, congratulations, Amy, and Elliot, too. I’m so glad to hear things are going well.

    Comment by Nancy Nall — May 14, 2009 @ 4:15 pm

  2. Nancy– it’s good to “hear” from you again! If you want to read more about the boys’ stories, you can read their personal website at cochlearimplant.net. We get interesting messages almost daily from Deaf Culture activists who oppose us; most of it is downright nasty. I know that not all deaf adults share their sentiment, but with the volume of comments on my boys’ youtube videos and website, I can tell you that there is some deep-seated resentment! I’d love to catch up with you more, some time. We are in Georgia, now, but will be soon moving to the Illinois area, and I still have friends in Ft. Wayne that I plant to visit! I was actually on YOUR site a few months ago when you discovered plagiarism by a politician… I can’t recall all the details but I do remember that I was surprised to recognize your name in the national news, and followed the links. Congrats on all of the traffic to your blog!

    Comment by Amy K. — May 27, 2009 @ 9:42 pm

  3. Hi Amy,

    I have read your other blog but am so thrilled to have found this one as well!

    :) Melanie

    Comment by Melanie — May 25, 2010 @ 8:32 pm

  4. Hi Amy, Thank you for the sharing article. Do you live in Fort Wayne? I live in Fort Wayne. :-) I took a CI surgery at Lutheran Hospital in Fort Wayne. Did you know in Fort Wayne have a new ENT and CI surgery? I didn’t get CI from Riley’s. Because I live in Fort Wayne and not have to drive back and fourth. I’m happy to have a CI. I enjoyed read your blog about your sons’ cochlear implants. That is amazing story!

    Comment by JessicaB — November 7, 2011 @ 8:09 am

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