Archive for the ‘Amy’ Category

Why Choose the Auditory-Verbal Approach?

Tuesday, March 24th, 2009

So much of medicine is based on “best practices.” What works best for the largest number of typical cases, what have studies shown, etc. Why is AV a great first option for parents when they find out that their baby or child is deaf?

Amy: I think it’s because we know that learning to speak and hear is an integral way of being a part of the ENTIRE community. This is the first reason. If we didn’t care about that, then it wouldn’t matter what language, right?!?

Melissa: I also think that it is the language of our families. Even if Elliot and I had learned sign language, would it have been realistic to have expected both sets of grandparents, aunts, uncles and cousins to also have become fluent in sign? We live far from family, and so the cousins did not grow up being a significant part of each other’s lives, but, when they did get together they connected immediately as if they got together more frequently, and my girls were always an integral part of this interaction, something that would not have been possible if they couldn’t communicate with their cousins.

I often hear older deaf adults talk about how they felt isolated from their families and never felt a part of it. I didn’t want this for my children.

Amy: So, even if we lived many years ago and could not do AV, we may have chosen lipreading and oral methods because it was that important to us. Would we have signed, also? I have wondered that. I know that ASL is hard to learn, as hard as learning any foreign language as an adult. Would I have learned it fast enough to speak and teach in complex language to my children? I have often heard the stories of families who DID learn to sign, but only at a rudimentary level. Their kids were still isolated, and outside the immediate family it was rare to hear of people becoming fluent for the sake of a grandchild or buddy.

But today, we have extremely high functioning cochlear implants. I don’t think those who began the acoupedic methods ever envisioned how far we would have come– and how fast. No doubt they would be amazed at how quickly a child can learn to listen and speak. And how easily! If parents choose cochlear implants, the most commonsense approach is to use the new auditory skills. Why get one, otherwise? The goals of parents who get cochlear implants for young children are hoping that their child will hear and speak, and Auditory Verbal Therapy is the most likely way that this can be accomplished.

Melissa: I agree. Given today’s technologies and the successes widely experienced with these technologies, AV should be the first option for most parents if their goal is for their deaf child to learn to hear and speak. Provided the parents are committed to the time commitment and hard work early on, their children will reap the rewards.

What Is the Auditory-Verbal Approach?

Tuesday, March 3rd, 2009

Auditory-Verbal does not simply mean auditory and verbal.  Rather, it is the name of a well- defined approach that focuses on optimizing children’s hearing so that they can learn language auditorally rather than visually.  It is also a parent-centered approach because parents are their children’s primary language role models during the critical early language learning years.

 

From: http://www.agbellacademy.org/principal-auditory.htm

Principles of LSLS Auditory-Verbal Therapy

1.    Promote early diagnosis of hearing loss in newborns, infants, toddlers, and young children, followed by immediate audiologic management and Auditory-Verbal therapy. 

2. Recommend immediate assessment and use of appropriate, state-of-the-art hearing technology to obtain maximum benefits of auditory stimulation.

3. Guide and coach parents¹ to help their child use hearing as the primary sensory modality in developing spoken language without the use of sign language or emphasis on lipreading.

4. Guide and coach parents¹ to become the primary facilitators of their child’s listening and spoken language development through active consistent participation in individualized Auditory-Verbal therapy. 

5. Guide and coach parents¹ to create environments that support listening for the acquisition of spoken language throughout the child’s daily activities.

6. Guide and coach parents¹ to help their child integrate listening and spoken language into all aspects of the child’s life.

7. Guide and coach parents¹ to use natural developmental patterns of audition, speech, language, cognition, and communication.

8. Guide and coach parents¹ to help their child self-monitor spoken language through listening.

9. Administer ongoing formal and informal diagnostic assessments to develop individualized Auditory-Verbal treatment plans, to monitor progress and to evaluate the effectiveness of the plans for the child and family.

10. Promote education in regular schools with peers who have typical hearing and with appropriate services from early childhood onwards.

*An Auditory-Verbal Practice requires all 10 principles.

¹The term “parents” also includes grandparents, relatives, guardians, and any caregivers who interact with the child.

(Adapted from the Principles originally developed by Doreen Pollack, 1970)
Adopted by the AG Bell Academy for Listening and Spoken Language®, July 26, 2007.

 

Amy: I think most people have an idea of “oral education of the deaf” that comes from things like movies, books or TV.  We have all seen various shows with people teaching lip-reading, using hands on throats and lips, etc.  We hear laborious stories of parents spending hours teaching the production of one single sound.   For many years, without good amplification, oral education required things which were not primarily auditory in nature.  One of the biggest difference I see between oral education and Auditory Verbal therapy, specifically, is the fact that it is based on the child’s audition (not their mouth).  Contrary to what people might think, it was not utilizing cochlear implants in the early days, but hearing aid technology and residual hearing.  Even today, it continues to be based on the auditory access present in any particular child.   When audition is present, the spoken language will naturally follow.

The other main difference which I believe is of utmost importance is the fact that parents or primary caregiver are the key players of this game.  They are recognized as the person most often with the child, the person who is the most involved, and who can make the most language difference for the child.  I don’t ascribe to the “more is better” philosophy when it comes to actual time in a therapist’s office.  I DO ascribe to the “more is better” philosophy of quality time with one’s parent!  For my kids, this meant talking all the time, reading all the time, spending every possible moment communicating about our daily lives.  I hear about orally educated kids who go every day to therapy!  But what happens in the hours when they are with their parent?  To me, that is the most important question.  I don’t enjoy the driving, the waiting rooms, the scheduling… if I can do it at home– that’s the best place to be.  My Auditory Verbal therapists taught me how to do the work at home.  The weekly sessions (for a brief couple of years) were parent training for me!

Mainstreaming is the 3rd major difference.  While I homeschool, it IS mainstreaming for my child because I homeschooled his brothers before him, and have no doubt that he will re-enter a brick & mortar school (as regular schools are called) when the time is right.  He mainstreamed for preschool without an ounce of difficulty.  Being in a typical listening environment, whether it’s in the classroom, in a sport, in the arts or any facet of education… is part of real life!  It prepares kids for living in a world which is based on listening and talking.  When we go to religious education or track practice, I want to know that my child can hear the teacher and coach, knows how to speak clearly, and can advocate for whatever he needs.  Mainstreaming gives that experience.


Melissa: One of the greatest benefits of mainstreaming that I have seen my girls experience firsthand is the ease with which they learn language naturally from their peers, both through conversations and overhearing, including idiomatic expressions and expressions that are current to their generation.  I remember Rachel learning, “Sure!” in preschool, saying it with the same intonation as her normally hearing peers, and Jessica coming out with, “Awesome!” and “Whatever!”  Because they learned to hear, they have been able to pick up spoken language naturally from their peers. 

Then, there are those moments of overhearing that we wish they didn’t have!  Anyone who has driven in Atlanta traffic knows that it can be a frustrating experience.  Between carpooling her older siblings and driving to oral motor therapy in a heavily trafficked area, Jessica, who was always sitting right behind me in the car, heard my too frequently expressed complaints.  One day, when she was four years old, she reached up onto the counter only to find an empty plate, which led her to exclaim, “There are no more blueberries, dammit!”

The other advantage to mainstreaming is that I knew my girls were learning grade level material alongside their peers.  When Rachel was a baby, and we visited a high school class at an oral school, I became concerned because the material was clearly at a lower level than a regular tenth grade.  By attending our neighborhood high school, I knew that she was learning at grade level and even above in honors and AP courses.

 

Amy: Oh, the easy acquisition of phrases we wish to avoid.  Sigh!  We know that well.  Currently one phrase is “Oh my God.”  We discourage that phrase in our family but Oliver heard someone say it… whether it was other kids in the neighborhood or TV or his brothers, I can’t say!  But we have tried to replace it with “Oh my goodness.”  So now he frequently discusses this, saying “you don’t say Oh my God, you say Oh my goodness.”    In November I sent Melissa the following email: “Ollie just said to Alex: “Get your butt down here!”  UH OH…”

Elliot took the CRCT last spring with his peers from across the state, as part of the Georgia Virtual Academy (a public school).  The state testing was administered in a large room by a teacher who spoke much of the details of the information, since first graders need instructions read to them.  We could have requested accommodations, but we knew they weren’t necessary.  He sat in the front row, but he told me when I picked him up that he could hear everything.  Test results confirmed that he not only did, but that he could easily exceed all standards for 1st grade curriculum.  Historically, the non-mainstreamed kids in deaf education in our state have had difficulty with the state testing, even when it is administered with accommodations.

Catching Up– Quickly!

Monday, February 23rd, 2009

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.)

“Yep, nothing.”

Thursday, February 19th, 2009

When I got home I immediately researched and read that fluid is uncommon after a few hours after birth; Elliot was more than 24 hours old when they had administered the test. We spent all week going back and forth between hope and concern. One person we were thinking about was my mother-in-law, Sharon, who had become deaf in her late teens. Why had we never thought about that? She had been told that it was caused by loud rock music at dances. Now, of course, Otolaryngologists laugh at that idea– when one has damage from loud sounds, especially music, it is usually a gradual loss over a lifetime, not a dramatic thing taking a year or two. Was it hereditary?

I remember that the ABR test took a long time and that we didn’t know what was going on until the first ear was completed. The audiologist said something like “yep, nothing.” Was it his experience with hearing loss that made him so flippant? Who knows. But when he did the 2nd ear, I was hoping against hope that it would come out OK. It did not, of course.

I remember sobbing through the parking lot as Kevin carried the car seat. I don’t remember much for a few days after that. Kevin had to call my parents to tell them… I couldn’t bear to hear their reaction. I do know that I was immediately researching the words which the audiologist had mentioned: cochlear implant.

On January 19th, when Elliot was 15 days old, I wrote to a friend:

” I am still working thru the grieving for all the things he won’t hear and difficulties he will have educationally, but I began getting a list of books together to read and have ordered them thru interlibrary loan. I will let you know as soon as we know the cause. Of course I am sort of hoping in the back of my mind that it is the kind that can perhaps be assisted by a cochlear implant, which they now do as early as 1 year. That would be a difficult decision but one we can’t really think too much about since we don’t know the type of hearing lossthat he has. We will know more after seeing an ENT.”

I learned a lot in the immediate few weeks. I read a wide variety of books about deafness– from the educational perspective, from the Deaf Culture perspective, etc. By 3 months, Elliot had hearing aids. That was an interesting struggle in itself. Not to get them– the audiologist referred to Yoshinago-Itano studies about early amplification and identification being crucial, which I found really interesting, but she refused to turn the aids up enough to benefit the potential residual hearing. My husband had to download the manual about that particular brand of HA and insist. She called the company before finally doing it. (What was she saving his hearing for– a rainy day?) I spent hours trying to keep hearing aids on a baby. Earmolds take a couple of weeks to get back from the company, so if they are sent to the audiologist and then you go pick them up, by then they are often outgrown. Who knew that ears grew so fast? There are many kinds of plastics and silicones that can be made into earmolds; some fit more tightly than others. Some are squishy, some are hard. We didn’t get a pair that fit well for months. When earmolds are loose, there is a feedback loop created by sound into the hearing aid, and they whistle. I remembered my grandfather’s hearing aids whistling in church; now my son’s were whistling all the time. Every time his head bumped his car seat or his high chair or my shoulder, or he touched them with his fingers, he whistled. Then, he figured out how to pull them out. Earmolds detatch quite easily, too, and so you have two built in choking hazards on your baby at all times. We tried several substances to maintain the seal– Otoease, Otoferm and even Lansinoh. Nothing was perfect.

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Within a few weeks of the diagnosis I had found CI Circle, a listserv group for parents of children with cochlear implants. This, of all the sources, was the most useful for getting information, since we knew already that we were incredibly interested in cochlear implants. There were a variety of opinions, but I was able to narrow down which ones I agreed with and pick the brains of those parents. One very useful and exciting tip was from Melissa Chaikof regarding early implantation. She knew of a baby who was implanted under 12 months, which was (and still is) the FDA “recommended” age. We wondered if we could accomplish this for our baby, and we ate up research about the benefits. It seemed a “no brainer” that kids who are implanted younger learn language more easily and more naturally, like their hearing peers. Some of the kids who were implanted young had suffered from meningitis, which can ossify the cochlea quickly, and we did not have that reason to implant early.

On February 20th, when Elliot was 6 weeks old, I wrote to friends:

“Today Elliot had the second ABR (a hearing test which measures brainstem response by glueing/taping electrodes to the head while asleep), another tympanogram and Otoacoustic Emmision test (measures replies from the hairs in cochlea)…we had an appt. with the ENT a couple of weeks ago but didn’t learn much more then since it was an initial consult. The ABR was the same– no signs of any hearing up to 90 decibels, which is quite loud and the limit of the machine. Any residual hearing (which most profoundly deaf people have, even if just a little) will be over 90 dbls and will only be found out when he’s older and can show that he hears noise in other tests. We don’t know what caused the deafness, but in over 50% of congenital deafness cases, it is genetic. So we may end up having testing for that. We will also eventually have a CT scan in preparation for potentially getting a cochlear implant. We will be going to a CI center, either at U of M or Riley Children’s hospital eventually. They do them as early as 1 year now.”

We were so lucky to be in Indiana. Actually, for some reason, in the weeks after Elliot was born, the words a “charmed life” kept popping into my head by itself. I have no idea why, because that is a strange word… but it appeared to me that we were extremely lucky. We had a deaf baby, yes, but he was born in such an age of promise with the cochlear implant. I had two solid weeks of meals brought in by friends in La Leche League and the church. I had old friends write me long, encouraging letters. I felt that I was learning a lot about myself, what we could do when we needed to. I felt that I could be the mother that this child needed. So, when we visited Dr. Miyamoto at Indiana University and he was also gung-ho about early implantation, we knew that things were going to proceed.

One reason that we were clear about our course toward giving our child hearing was because of my husband’s experiences with his mom being deaf. There are people who argue that deafness is a god thing; for us, this did not ring true. Kevin remembered being the little boy who had to be all grown up in the days before email and phone services for the deaf. One time, he and his brother cowered in the back seat of a car while a police officer berated and roughly treated their mother, who had not heard his siren and not pulled over very quickly. Another time, he had to tell his mother that a friend of the family had been killed in a car accident moments before, when she had him call their house about something else. When he was in elementary school, he and his father arrived home to flashing lights of police cars because his mother had been raped while taking a nap on the couch. Then there were the little things– the water left running, the car door ripped off when she backed out the garage and didn’t notice that a door was open, the times he was locked out of the house while she was at home in her bedroom. In grocery stores, people would assume that she could hear because she spoke clearly, having heard throughout her childhood. Then when she would turn her back, they would assume she was being rude. She read lips well, but some people always speak quickly, and Kevin would have to interpret with his lips for every conversation like this. She had a lot of spunk, though, and had a zest for life. Unfortunately, Elliot never got to know Sherry because she died of ovarian cancer when he was five months old.

Elliot's brother, Alex, with my mother-in-law

Elliot's brother, Alex, with my mother-in-law

The other main reasons were because we wanted him to be able to communicate easily with his family, including his brothers, grandparents and extended family. We wanted him to be able to talk to anyone he might meet without an interpreter, if possible. We also hoped that he would be able to hear enjoyable sounds– birds, music, fireworks. Actually, music is one of the first things that I thought of, but after reading more about educational issues and deafness, I realized that it was the least of my worries.

On March 3rd, 2001, when Elliot was 2 months old, I wrote to friends:

“Our feeling tend to be that the we want Elliot to hear as much as possible and therefore be a part of our culture and our community rather than the d(D)eaf culture, which is shrinking due to advances in technology, health, etc. Although I know he probably will want to have deaf friends, he will be out there in a hearing world and we want him to be able to freely choose his occupation, spouse, etc. This doesn’t end up being the case often for those within the Deaf Culture. I respect their decisions but it is not what we want for Elliot. The Deaf Culture is often very opposed to CIs because they see it as taking people away from their community, destroying their culture. They have likened it to the holocaust. However, it is a one-day, go home the next, kind of surgery, and studies show that prelingually deaf children who have it develop speech similar to hearing children. In my opinion deafness is a disability (deaf culture denies this although they reap benefits of the Americans with Disabilities Act, etc.) much like the loss of a limb, eyesight…and we all know we would do what we could for our child in those cases. such as prosthetic limbs. ”

And on March 11, I mentioned CI circle to my friends:

You wouldn’t believe the support I have gotten on the CI email list and what I’ve learned. I am understanding so many things about him and finding that little things he does are common with deaf children. For example, he may have some vestibular issues and balance issues because he never lets me hold him upright on my shoulder, something I noticed right away before I even knew he was deaf. I have had many other parents comment that their kids were the same way, and that they have since had PT or OT to work with motor skills. There’s so much more than simply a loss of hearing. There’s heated debate about communication methods, heated debate about ways to stimulate sound, heated debate about medical vs. other models of looking at
kids…well, it’s overwhelming but I’m glad to be able to find out now. I’m one of the fortunate ones who has found out early. There are very few out there.

There have been about 200 children implanted with CIs between 9 and 18 months of age, so Elliot might be entering a very select group in a year. We hope that we can learn as much as we can and make a very informed decision. We will be going down to Riley in Indy in about a month and we hope to have a good mtg with the implant surgeons at that time.”

elliot_amy_clownsuit

Another Beginning

Tuesday, February 17th, 2009

In 2001, I was a happy mother of two boys, expecting my 3rd child. We lived in Indiana, and were enjoying living close to my parents in Michigan. I was also deeply involved in my local La Leche League group as a Leader and also as a District Advisor. I enjoyed leading meetings for mothers and helping them through those first few days and months with their cherished babies. There is nothing more satisfying, as a mom, than helping other moms have a good bonding experience with their breastfed babies.

When Elliot was born, he was perfectly healthy, 8 lbs. 3 oz. However, in the hours following, he would choke or gag in a strange way. Being an experienced mom, I knew it was not normal. Finally, he did it when the pediatrician was there for the checkup. He admitted him to the NICU. Nothing specific was determined with tests but at one point, after he seemed fine, it was almost time to leave the hospital and the newborn screening machine was brought down for the hearing test. The nurse was young and inexperienced, so she couldn’t get it to work– or so she thought. She tried twice; it failed to work both times. Finally she got help, at which point they decided that it was really and truly a referral for an ABR in a week. I didn’t know what to think, and they furthered my hopes at that point by saying that it was probably just fluid in his ears. Incidentally, I believe that the reason for his gagging problem was vestibular in nature, though I have no way to confirm this.

Elliot with his family

We loved this baby up, and waited for the appointment.