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36 Empowering Teens with Hearing Loss

Madell et al., Pediatric Audiology: Diagnosis, Technology, and Management, 3rd Ed. (ISBN 978-1-62623-401-7), copyright © 2019 Thieme Medical Publishers. All rights reserved. Usage subject to terms and conditions of license.

Discussion Questions

1. How would you create a mind map with a teen who is having

diculty hearing and understanding his teachers and peers

during large and small group discussions?

2. How might you go about starting a teen support group in your clinic or school-based facility?

3. How could you utilize the Audiology Self-Advocacy ChecklistMIDDLE SCHOOL (ASAC-MS) Teacher Form to facilitate teachable elements of SD to help a student with hearing loss? See Appendix 36.1.

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Balance Center; 2015

382

37 Advice for Audiologists from Parents

Parents, Jane R. Madell, Carol Flexer, Erin C. Schafer, and Jace Wolfe

37 Advice for Audiologists from Parents

Summary

This chapter provides advice to audiologists and audiology students from parents of children with hearing loss. Their experiences make it clear that we can make their lives easier if we can provide them with support in addition to the technical skills that they expect from us. Some parents have felt that the audiologists who worked with them did not always recognize what their needs were; some parents felt audiologists did not value their input; some felt audiologists had their own agenda about what should happen to a child with hearing loss; some felt strongly about a communication method and made parents feel that their decision was not accepted; some gave only technical information with a diagnosis when the parents were not yet able to take in what was being said to them and needed hand holding. When

progress is not excellent, parents want audiologists to “think out of the box” and ﬁnd solutions. The advice parents give will signiﬁcantly improve the practice of audiology. We can all learn

from them.

Keywords

supporting families, communication options, technology options, listening and spoken language, auditory verbal therapy, sign language

37.1 Advice for Working with Infants and Young Children

This may be the most important chapter in this textbook. Most of what textbooks and journals focus on, and in fact, what graduate school focuses on, involves diagnosis and treatment. While there

is no doubt that these skills are critical for eective audiologic practice, they are not sucient if you want to be a great, or even a

good, pediatric audiologist. The four editors of this textbook have

devoted a combined 128 years towards developing our craft. What

we have learned is that children with hearing loss will be most successful when their parents understand as much as possible about hearing loss. We as audiologists, speech-language pathologists, and auditory-verbal therapists are the people who help educate families about hearing loss. For families to learn how to maximize their child’s development, parents need to feel understood and supported by the professionals who work with them.

We have asked families to tell us what they want young audiologists to know about working with families as they provide diagnoses, and make recommendations. The information shared by the families in this chapter makes it clear that we do not always do a good job. We are hoping the information shared here by families will help us all do our jobs better.

Key Points

Children with hearing loss will be most successful when

•

parents understand as much as possible about hearing loss. Parents need to feel understood and supported by the pro-

•

fessionals they work with, and valued as part of the team. More than 90% of children with hearing loss are born to par-

•

ents with normal hearing who know very little about hearing loss. Parents will need help understanding what choices they need to make. When giving bad news, parents need to feel that the profes-

•

sionals are listening to them, and not rushing through the appointment. Body language needs to indicate we are there for the family. Families want unbiased information from the professionals

•

they work with and should not feel pushed into decisions about technology or communication mode. Parents can provide valuable information about a child’s

•

auditory, speech and language development. We need to listen to them. Meeting other families with older children with hearing loss

•

is very helpful.

37.1.1 Parent 1

Catherine lost her hearing at 16 months due to pneumococcal

meningitis. Her illness was totally devastating to us. We had never imagined almost losing our daughter, we didn’t know anyone who was deaf, and we had never heard of cochlear implants. We were thrust into a whole new world in an instant. The learning curve

for us was huge. Early on, we learned about ossiﬁcation of the

cochlea after meningitis and how detrimental it is to implantation and optimal function. We acted as quickly as possible, yet both

cochleae became fully ossiﬁed between the time of Catherine’s

MRI [magnetic resonance imaging] and her scheduled simultaneous bilateral surgery. After two separate surgeries, Catherine had

10 electrodes implanted in her right ear and 14 via a split array implanted in her left ear. We knew the ossiﬁcation presented

unique challenges—a very uphill battle—but we remained hopeful. Being able to hold on to hope is what got us through those very dark days, and it continues to carry us along today.

We came to learn that MAPping [see Chapter 22] of Catherine’s processors is extremely complex, time consuming, and unique for

each recipient. Our ﬁrst experiences with audiologists didn’t oer

us much hope. The initial stimulation appointment was rushed,

negative, and deating. By the third day, we were told to give up on expecting any usable beneﬁt, due to the ossiﬁcation. We were

crushed. Though we didn’t receive much hope or information

383

IV Educational and Clinical Management of Hearing Loss in Children

about the complexities of MAPping from the audiologist, we continued to do all that we could to help our daughter through AVT [auditory-verbal therapy], listening games, constant narration, support groups, and grief counseling. You name it, we did it.

Pitfall

Parents need positive, encouraging support during the initial cochlear implant MAPping appointments. Not every child will respond the same way when an implant is activated.

Four long months later, Catherine gave us the ﬁrst real indica-

tion that she heard something with her implants. The phone rang

om the other room, and she went in and brought it to us. Hope

fr was restored! I knew then that if she heard the phone ring and recognized it as the phone, we at least had something to work with. I immediately called the audiologist to tell her the good news. She proceeded to explain to me that environmental sound

detection is very dierent from speech detection and recognition.

I would have preferred a small celebration of this huge moment that had occurred in our home.

Over the next several months, I learned as much as I could

about the MAPping process and how the “right MAP” is critical. I

also learned that putting all the trust into a computer to measure NRT [Neural Response Telemetry (Cochlear Ltd., Sydney, Australia) software for measuring electrically evoked action potentials; see Chapter 22] and decide on the best MAP isn’t the only way

to create the “right” MAP. I learned that it’s possible that an implant within an ossiﬁed cochlea can have success even though

the computer may indicate otherwise. I learned about the idea of

MAPping to “live voice” and became intrigued. About a year and a

half after Catherine’s initial stimulation, we decided to see a new audiologist. We left what was considered a top implant center in our area. There wasn’t a dramatic increase in Catherine’s hearing

after our ﬁrst visit, but our knowledge increased dramatically. We

were treated as part of the team. Things were explained to us, and it was assumed that we could understand the complexities of MAPping. Our input was valued.

Pearl

willingness to “think outside the box” when needed. Additionally,

a partnership between audiologist and therapist (AVT in our case) is critical. An audiologist willing to make time to speak to a patient’s therapist or other providers and listen to their concerns is crucial. Lastly, as parents, we have highly valued working with an audiologist who not only exhibits expertise in the science/ technological parts of the job but also is masterful at handling the emotional aspects that come with working with patients with hearing loss.

37.1.2 Parent 2

I remember seeing the lines moving on the computer screen while my son was getting his auditory brainstem response (ABR) test done. I assumed those lines meant there was brain activity happening, s o when the audiologist told me that my son could n ot hear

a plane take o or a rock concert happening, I was in shock. The

audiologist was beyond gentle in her delivery of the news. There wasn’t a great way to tell us, but she was direct, honest, and kind. She explained that our son had profound, bilateral hearing loss.

She told us about dierent communication options to investigate

such as sign language, cued speech, and the cochlear implant. She also told us about contacting our local school district so we could get started with early intervention. Looking back, although the

news was dicult to hear, we were very fortunate to have had

such a wonderful audiologist deliver the news. She told about

dierent communication options. She didn’t oer an opinion

about which choice was right or wrong; it was all about options. She wrote everything down and gave us written instructions and contact numbers. In hindsight, thank goodness, because there was too much information to process. I never fully understood how fortunate I was to have been given choices of options until I met other parents, years later, who had never been told about the choices available. Unfortunately, for most of those who would have liked to pursue the aural option, it was too late.

Pearl

Excellent pediatric audiologists will provide parents with unbiased information regarding communication options following a diagnosis of hearing loss.

Parents need to feel valued; they are critical members of the intervention team!

We left that ﬁrst visit with the new audiologist armed with

knowledge. We became excellent observers of our daughter and expert reporters. Because of that, Catherine has made steady

progress and is fully aural now, 8 years later. She is mainstreamed

in school as well. It’s alarming to think that Catherine would not be where she is today had we not sought out a second opinion with

a dierent audiologist. Catherine’s case is unique, challenging,

and very complicated. What has been paramount to her success is an audiologist with experience with complex situations and a

I contacted an auditory verbal therapist and a center program for children with hearing loss. The auditory-verbal therapist told us about AVT; all I remember hearing was that one main idea was that the parent is trained to work with the child and also that the child is taught to use their residual hearing. It was a leap of faith, but she truly changed our lives. The teacher from the center

program met with us weekly to teach us about dierent issues

ranging from what the cochlear implant surgery would be like, how to use hearing aids, to understanding the role of the school district, plus learning about language opportunities through daily

activities. She answered our questions about the dierent options

and also gave us reading material so we could educate ourselves. Again, no push on which option was the best—just options. We

384

37 Advice for Audiologists from Parents

attended parent support groups, attended demonstration home classes, and also worked weekly with our AVT. We soon learned that parents, the auditory-verbal therapist, the audiologist, the itinerant teachers, the teachers of the deaf, everyone has to work together to reach the goal: the goal of helping the child communicate.

As positive as our ﬁrst experience was with the audiologist at

the ABR, is as lousy as our experience was with the audiologist we were assigned to work with at our local implant center. She was very clinical, and I always felt uncomfortable. Although she did a good job with initially programming the implant, she was uncomfortable with our anxiety and questions, and she let us know it.

Months went by, we went to our therapy sessions, but our son was not responding to sound the way we felt he should have been. No matter how much we shared how concerned we were about our son’s lack of progress, the audiologist insisted that we wouldn’t see results for at least a year. We were frustrated, time was ticking away, and we felt we were wasting it. Turns out, we later learned that this audiologist thought our son had cognitive

delays, which I believe, aected her expectations of him. Her

resistance to suggestions, not only from us but also from the other professionals who were working with us weekly, caused a lot of tension. It didn’t matter who was right or wrong; it mattered that everyone needed to work together. And that wasn’t happening. Although I respect the need to be conservative with a newly implanted patient, sometimes it’s equally important to listen to the parents and other professionals. Our son heard before, we knew that he wasn’t getting what he needed, and if I could tell audiologists one thing, it would be that you have to be openminded to everyone who is regularly around the child. You don’t have to agree or do something that you feel is detrimental to the child, but at least listen and come to an agreed plan of when a change will be made if progress isn’t moving along. If a family is too anxious for you to deal with, or you feel you shouldn’t have to deal with that aspect of the care you are providing, there are ways to address it. We realized that we had such great professionals working with us and we were spending too much time worrying about how the audiologist would feel or react. Needless to say, we changed audiologists.

Pearl

Parents can provide valuable input regarding their child’s speech and language development. We need to truly listen to parents.

We changed audiologists, and the next audiologist was amazing. She took her time to evaluate where our son was at, as she should ha work immediately, but that was OK; we were working with someone who listened to the feedback she was getting from the professionals who worked with our son. Soon, our son was noticing airplanes, loud noises, it was incredible. When it came to

ﬁne-tuning things like detecting, discriminating, and producing

the /s/, there was an issue. After determining that it wasn’t developmental, the audiologist was secure enough and open-minded enough to allow the representative from the implant company to

ve, but then started to make adjustments. They didn’t

sit in on the programming session. Turned out, one of the electrodes needed to be shut down. We were so happy and grateful to the audiolo

no one cared who was right or thought of it ﬁrst—it was all about

helping our son. I’ll never forget that moment; that is the standard of what everyone should have.

Our son was implanted on the other side so he could be bilat-

eral. Even on the car ride home from the initial MAPping, I noticed

a dierence in how he heard in noise. The experience of MAPping an implant was so dierent with this audiologist than with the

previous one. It was actually easy. We went back to our AVT, she gave her feedback, the audiologist tweaked whatever needed it—done. Again, the standard of care that everyone should have.

Years later, our son had a device failure. Unfortunately, there was an issue programming it. Once again, our audiologist tried everything, was open to suggestions, and allowed the implant company to attend the sessions. I could not have asked for more. We just couldn’t get the implant MAPped, through no fault of the audiologist. It was just one of those things.

We changed to another audiologist because we wanted to have

someone new check things out and unfortunately, it was a conict

of interest for the implant center to have an outside audiologist do programming on their patient. So, I cried to our trusted audiologist about the decision we were making to leave and how much I appreciated everything she had done for us. I meant every word.

Now that our son is 17 and will be leaving for college in less than a year, I feel thankful. The journey has been ﬁlled with tears, fear

of the unknown, and unbelievable moments of pride. As a family, we know how fortunate we are. We know how well we’ve been treated and how well our son has been cared for by professionals. Everyone should be treated so well and their child so cared for.

I’ve learned that there are really wonderful people in this world who really care about what they do. I’ve also learned that it’s OK to recognize when something doesn’t feel right and it’s OK to make a

necessary change. It’s a team eort.

gist and the representative because no one had an ego,

37.1.3 Parent 3

You have a hard job. Most likely, you will be the ﬁrst person to

tell parents unequivocally that their child has hearing loss. You

should know is that no matter how we end up in your oce, we

are all hopeful: that there’s been a mistake; that everything is

ﬁne now; that we can stop worrying. We are hoping harder than

we’ve ever hoped before. It’s your job to take that hope away. But it’s also your job to give us new hope. Treat us gently, but with

honesty. You have to be the ones to say: “Your baby cannot hear. Your baby needs help.” But you also need to be the ones to say: “We can help you. Your baby is going to be ﬁne.”

We saw three audiologists to conﬁrm our daughter’s hearing loss and the levels in both her ears. At all three oces, the ABR

results were similar. Our experiences were not. So even though we

left each appointment ﬁrmer in our knowledge that our daughter was deaf, we also left each appointment with a dierent mix of

fear, hope, and information. The better appointments gave us lots of information and lasted until we felt we were ready to leave. The worst gave us medical results and then rushed us out. I’ve had over a year to think back on those appointments, and the following are a few things I would want all audiologists to know.

385

IV Educational and Clinical Management of Hearing Loss in Children

1. Don’t assume anything about our baby’s hearing until you ad-

minister all the necessary tests. Our ﬁrst audiologist ran a

preliminary hearing test before the ABR, and even though our

daughter failed it, she said, “it seems to me like she’s hearing, but since she failed it, we’ll have to run the ABR now.” This was

not helpful. It set us up to be disappointed. It would have been

nice to know that “most of the kids tested here have some level of hearing loss.”

2. Don’t rush through explaining anything. I cannot overstate this: we were completely unprepared for our daughter’s diagnosis. We did not understand that hearing aids might help her, or that if they couldn’t, she might be a candidate for a cochlear implant. We didn’t know what cochlear implants were. We didn’t know what any of this looked like. We didn’t know what to do next. The options you’ll mention to parents will be myriad, and they’ll be incredibly familiar to you, but for the parents you’re talking to,

it’s likely the ﬁrst time they’re hearing the medical terms you’re

using or learning about the technological and surgical options that might be available to them. I was not used to being the dumbest person in a room, but every time we met with a new doctor and our newly diagnosed baby, we faced a steep learning curve. Please know what a valuable resource you are to us. You cannot speak too slowly, or with too much care. If we’ve heard it before, we’ll stop you, or we’ll ask more in-depth questions.

Odds are, we’ve been using the Internet to ﬁnd answers up until this point, so you’re one of our ﬁrst reliable, fact-based sources. On that note: tell us to avoid the Internet. Give us safe places to

go to read about what’s going on.

Pearl

Avoid medical jargon when counseling parents, and assume

parents know nothing about amplication options.

parent to a child with a disability will be familiar with. And it hurt. I didn’t want to think that there might be something wrong with my child, but if there was, I certainly didn’t want to bring religion into it.

6. The turning point for us in the early days of our daughter’s diagnosis was a doctor’s appointment we had was with an ear, nose, and throat (ENT) doctor. He looked over our daughter’s ABR

results and examined her ears, her eardrums, checked for uid

and movement. Listen, he said, everything looks normal to me. That’s good. Let’s assume the ABR results are accurate, and your daughter has a profound hearing loss, which I know is scary for you. I want to tell you that I think your daughter is going to be a perfect candidate for hearing aids and cochlear implants. If you want her to hear and speak like you, she’s going to. I have seen

hundreds of kids ourish with the technology that is available to

them. By 2 years old, your daughter is going to be talking just like any other 2-year-old. That was what resonated the most with us.

He was the ﬁrst person to say, in no uncertain terms, that our daughter was going to be ﬁne.

So I guess the most important thing is this: tell parents that even the scariest scenario—that the baby you thought could hear you can’t—is actually going to be OK. That being diagnosed deaf now is not anything like it was decades ago. If you want your baby to have access to sound—to hear, to speak, to sound just like the rest of us—your baby will. Technology is incredible. Your speech pathologists are going to be incredible. Tell parents that from this moment on, everyone is going to be working to get your baby exactly what he or she needs.

And please know that even if we’re too dazed to appreciate it, or to accurately express our gratitude, every small moment of kindness you show to our child and to us means everything in those dark moments. You are the ones who give us hope and who light the way forward, so, thank you.

3. Don’t be mean. This sounds obvious, but almost all parents you’ll see will be more raw, more sensitive and scared versions of themselves. Sometimes this manifests as sadness or fear, but sometimes it manifests as hostility or antagonism. We are trying, but we are scared. For some of us, we have never been more frightened in our entire lives. If we’re not at our best, you should still try to be. Don’t be short with us, or with our uncooperative baby. Don’t make us feel like our appointment is running over time.

4. Be especially nice to our baby/child. The audiologists who wanted to hold her, who laughed when she did something cute, or cooed over her tiny hands and feet made us feel seen, and made us appreciate that hearing loss wasn’t the deﬁning characteristic of our child.

5. Don’t talk about religion. When the ABR tech brought our newborn daughter back to us on the morning we were checking out of the hospital, she told us she wished she had better news, but that the baby had failed her hearing screen for the fourth time. She gave us a card with a phone number for an audiologist at the hospital and wrote down the names of the two types of tests our baby had failed, since we didn’t know what they were. We thanked her. As she turned to leave, she looked back over

her shoulder and said: “take care, I’ll be praying for her.” I felt

like someone had punched me in the stomach; I actually lost my breath. I knew she meant well, but I hated her for saying it. The idea that there might be something wrong with our baby

that only prayers could ﬁx ﬁlled me with anger. It’s a theme any

Special Consideration

During the early intervention process, our words carry so much weight with parents. Parents need support, hope, and unconditional empathy.

37.1.4 Parent 4

The ﬁrst thing you think you do when you are told your baby is

deaf is drastically begin to notice all of the beautiful sounds of nature and our environment . . . and you solemnly think . . . my baby will never hear this, my baby will never hear this. The birds chirping, the wind blowing, the waves of the ocean crashing, and

even some of the ugly trac, cars honking, thunder and lightning.

I immediately deleted my playlist and any sort of music that I had access to. It just wouldn’t be fair for me to hear the sweet sounds of life if my baby couldn’t hear them either. It reverberated in my head . . . my baby will never hear this . . . my baby will never hear

this. Who can help? How do we ﬁx this?

Working with an audiologist when you are a parent of a deaf

baby is like your life line. I look at my audiologist as somewhat of

a “god.” Once you choose an audiologist, all of their educational

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37 Advice for Audiologists from Parents

credentials will get ﬁled in the back of a parent’s mind. What a

parent is looking for/needs is support and, most of all, guidance. The emotional factors that go into working together are of the utmost importance. An audiologist needs to be empathetic and caring in order to understand a parent’s mood and feelings.

The ﬁrst time I actually slept through the night was after my

audiologist made some time for me to meet other families and children with cochlear implants. These introductions were the

best ﬁrst-hand education that allowed me to “see the light at the end of the tunnel.” These introductions are a must!

There is not a day that goes by that I don’t think about how lucky I am to have been put in contact with my daughter’s audiologist. She has given my child the opportunity to just simply exist in society as we all do. This is the person whom I am trusting with the future and growth of my child’s well-being. We should all feel so rewarded when we go home from our jobs!

37.1.5 Parent 5

When our son failed the newborn hearing screening at the hos-

pital, we didn’t think much of it. We were told it was “probably just uid” and were referred to an audiologist for a follow-up. In

the interim, we observed our infant responding to loud noises, so, like many parents in our position, we felt blindsided when we learned our child did in fact have hearing loss. However, it was the manner in which the diagnosis was presented to us that made the experience so much more traumatic than it needed to be. The audiologist assigned to us seemed visibly concerned for most of the test, which immediately sent us into a state of

panic as we watched on in silence, attempting to deﬁne meaning from her expressions. When the test was ﬁnished, she told us

that the results were inconclusive, but it seemed likely there was a problem with our son’s hearing, so we’d need to make an appointment for a longer diagnostic ABR—an appointment that

wasn’t available for several weeks. She then rushed o and left us

in the waiting room in a state of shock. Not only did we not have actual results; we had no knowledge of what hearing loss even was and what it could mean for our child. Craving more information, we spent the rest of the day going down the Internet rabbit

hole, which, as usual, inamed our stress even further.

Pitfall

When professionals rush through appointments or display negative body language from test results, parents will feel a sense of shock, disbelief, fear, and panic. Professionals need to provide parents adequate time to ask questions and express concerns during appointments.

much searching, we are lucky to now be working with amazing

audiologists who are kind and compassionate and who block o

hours for each visit. For parents of a DHH child, there are few resources more valuable than your audiologist’s time. Testing babies can itself be a process—they get twisty and cranky and bored—and it’s so relieving to know that we will have plenty of time thereafter to review the results, take action as necessary, and go through the multitude of questions that have piled up since our last visit.

37.1.6 Parent 6

I think the most important quality in an audiologist is instinct. I

ﬁnd that an audiologist who relies too much on technology will

often fail to recognize certain issues that could be addressed with a combination of common sense and creativity. The equipment

is simply that—a tool to be used by a qualiﬁed person who can

utilize it with his own insights. Trust your gut and humanity to take things further than just the technology. Being human is the greatest quality any individual can bring to his craft.

37.2 Advice for Audiologists from the Parents of Children with Hearing Aids

37.2.1 Parent 7

When our son John was 8 months old, we suspected that he had

a hearing loss. He clapped his hands and jumped when he saw us, but we got no response when we called him. Our pediatrician told us that John had passed the newborn hearing screening, but

she knew to “always listen to the mother” and referred us to the audiology department of a local hospital, which conﬁrmed that John had uid in both ears and limited hearing. A well-regarded ENT treated John with antibiotics, and when the uid cleared,

John passed the hearing test given by the audiologist in the

ENT’s oce. When we questioned the audiologist’s results, he explained that when John sucked vigorously on his paciﬁer and turned toward the “clapping monkey,” it meant that John’s hearing was ﬁne. We were skeptical of the results, but the audiologist

and ENT assured us that John’s hearing was normal. John continued to get ear infections and, at 11 months of age, had surgery for ear tubes. After the tube surgery, we continued to believe that John was not hearing normally, but he passed yet another hearing test. We were told to return for a follow-up appointment when John turned 2. Neither the audiologist nor the ENT listened to our concerns or respected our opinions.

Obviously, there is a lot that we wish went dierently at

that appointment. Most of all, though, we wish we would have been told that, no matter what the ultimate diagnosis, there are resources and technology available today that enable deaf and hard-of-hearing (DHH) children to lead full and happy lives. After

Pearl

Parents know more about their children that we can ever assess in one or more appointments.

387

IV Educational and Clinical Management of Hearing Loss in Children

Having read that a child with hearing loss must get hearing aids

before age 2 if he is to develop normal speech, at age 14 months

we took John to another clinic for a second opinion. The doctor examined John and listened to our concerns and said that he

suspected that John was severely deaf. The tests conﬁrmed that John was severely deaf, and 1 month later, Johnny got his ﬁrst pair of hearing aids. Ten days later, John said his ﬁrst word. John was

enrolled in a therapy program, where his receptive and expressive

vocabulary ourished. The audiologist was knowledgeable and

caring, and she patiently answered all of our questions.

At the age of 3, Johnny was mainstreamed and began auditory-verbal therapy. The AVT was an audiologist and told us what tests she needed from the audiologist in order to do her job well. Some of the audiologists did not appreciate being told how to

test, but Ms. Roteisch is so well respected that they followed her guidelines. With the information Ms. Roteisch learned from

John’s audiological testing, she was able to help Johnny maximize his hearing potential. On his most recent hearing test, John had

a pure tone average of 97 in the right ear and 98 in the left ear. Johnny is now a senior in high school. He has a 3.97 grade point average, is taking four advanced placement classes and Latin 4, and got a 35 out of 36 on his ACT college admission test. He loves

to read and is an accomplished video gamer who uses over-thecounter headphones to speak with fellow gamers around the world.

Our Advice

List en and get to know t he family: The most imp ortant thin g that

•

an audiologist can do is to listen to the parents and understand

their concerns. When it comes to a child, involved parents are

the experts. Allow enough time during the appointments to

get to know the parents and observe the child. If you ﬁnd

the parents to be credible, help them get a second opinion if

they believe that there is a problem. Recognize that everyone

makes mistakes, including doctors.

Show compassion and encourage questions: Understand that

•

many parents are overwhelmed when they learn that their

child has a signiﬁcant hearing loss. Although we suspected

that Johnny had a hearing loss, when we were ﬁnally told

that he was deaf, we were devastated. Fortunately, we had

a compassionate audiologist who understood our feelings of

loss and helplessness. It was important that she explained to

us that we might not know for a while whether John would

beneﬁt from his hearing aids and not to expect too much too

soon. Most importantly, she encouraged us to call her if we had

any questions. During the ﬁrst few weeks after John got his

hearing aids, we called her numerous times, and she always

returned our calls promptly. The audiologist suggested that

we visit the John Tracy Clinic.

Educate: We enrolled Johnny in the John Tracy Clinic and

•

attended a parent support group as well as parent education

classes in which the audiologists taught us about the types

of hearing loss and how to read an audiogram. We believe

that audiologists should take the time to explain to parents

each section of the audiogram and compare the results with

the prior audiogram. This is especially important when

audiologists see a new patient, because dierent audiologists use dierent forms and notations.

Allow sucient time: When an audiologist performs a hearing

•

test on a child, he or she should follow accepted protocol and

should not do the “bare” minimum. In addition, children need

time to get comfortable and should not be rushed. On a few occasions, our audiologist was overbooked with appointments and did not have time to do a hearing aid check or a tympanogram, even though one or both were appropriate. An

audiologist should anticipate delays and allow sucient time

to do the necessary testing, explain the results, and answer questions.

Be sure the ear molds t: When John was young, ear molds

•

were the bane of our existence. We wanted John’s speech to be

as intelligible as possible, so we got him “super power” hearing aids, and he used acoustically modiﬁed ear molds to increase

his access to high-frequency sounds. We had new ear molds

made frequently, since it was critical that they ﬁt correctly

so that he could develop normal speech (plurals, possessives, etc.). One audiologist got tired of making new ear molds and proposed turning down the volume on the hearing aids to mitigate the annoying whistling feedback problem. That was not a viable solution, since it would have limited John’s access to the high-frequency sounds. We were so happy when the hearing aid companies improved the feedback controls on his hearing aids.

Encourage use of the frequency modulation (FM) system: Since

•

John was three years old, he has used an FM system, which is supplied and maintained by our school district. We take good care of the equipment and rarely have problems. Once

John’s teachers recognize the beneﬁt he receives from the FM

system, they want to use it. John still relies heavily on his FM system in all of his classes and says it is critical to his ability to follow his Latin class.

37.3 Advice for Audiologists from Parents with Children with a Cochlear Implant

37.3.1 Parent 8

My husband and I had no prior knowledge of nor experience with deafness before we learned our daughter Rachel was deaf. I noted very early that she didn’t startle, but when I voiced my concern to our pediatrician when she was 3 weeks old, he told me I was

“an overly anxious new mother who doesn’t understand how newborns react to sound.” When at her 2-month-old visit, I again

voiced my concern, and he also noticed her arching her back and exhibiting poor head control, he referred us to a pediatric neurologist, who then referred Rachel for an ABR. When we took Rachel in for the ABR, the audiologist told us the test would take 30 minutes to an hour. We waited 21/2 hours for her to come back out. We knew it would not be good news.

When the audiologist called us back into the room to tell us the

test results, we were handed our cranky, hungry baby, who’d been

388

37 Advice for Audiologists from Parents

put to sleep for the test with chloral hydrate and hadn’t eaten in hours. She told us that our suspicions were correct, that Rachel

had a “severe to profound” hearing loss. As parents who had no

prior experience with deafness, we had no clue what that meant. We had never heard of residual hearing or that very few of the deaf are totally deaf. We knew deaf, hard of hearing, and hearing. We didn’t know there were more in betweens. It’s been 29 years, and so I don’t remember what questions we asked. I know that we weren’t with the audiologist who did the test for very long. We were transferred to another audiologist and a social worker. During this time, we were coping with shock and trying to feed Rachel.

The audiologist and social worker proceeded to ask us whether we knew about the controversy in deaf communication and education. We did not. They told us that some people choose an oral approach, some sign language, and some Total Communication, which was the in thing at that time. We had no clue, and so we said that we supposed using both sounded good. They then gave us only one referral, to a school which to this day is steeped in the

Deaf culture but then was also a “voices o” school, so only “both” in theory and not practice. Spoken language was taught 40 min-

utes a day, and that was it. There were other programs, but these professionals let their bias guide their advice to us, something we grew to greatly resent. At a future visit, the second audiologist

told me the A.G. Bell Association was “a bunch of extremists,”

again professional bias that I grew to resent to such an extent that I left that center shortly thereafter.

We had the good fortune to be connected very quickly to the family of an 11-year-old girl, and her mom became my mentor.

She told me to join the A.G. Bell Association for the Deaf and

opt for an oral approach. About a year later, she told me that, if she had to do it again, she’d go the Auditory-Verbal route and recommended that we check out an auditory-verbal center’s week-long immersion program, which we did and which changed our course. Who my girls are today and what they have achieved thus far in life is largely due to our good fortune in knowing this

family and the domino eect that arose from the connections that

we made from following their advice. Because we were connected to an Auditory-Verbal therapist, we learned about the cochlear

implants. In 1989, Rachel became one of the ﬁrst 200 children

to receive a multichannel implant as part of the phase III clinical

trials on the Nucleus 22. In 1996, we returned, and Jessica became,

at that time, the youngest child in the U.S. to receive a cochlear

implant at the age of 15 months.

In 2006, we learned that the cause of my girls’ deafness is Usher syndrome type 1F, which can result in blindness. One of the ﬁrst

thoughts we had was to be so incredibly grateful that we had chosen the most auditory of paths, which enabled my girls to hear and speak beautifully. I cannot imagine where they would be had we not done our research and listened only to that audiologist and

social worker who were our ﬁrst contacts.

If I were a young, hearing parent ﬁrst receiving this diagnosis

today, with so much more information readily available, along with incredible technology, this is what I would want to hear and to know:

Day one: “Your child will be ﬁne. He or she is fortunate to

•

be born at a time when deafness no longer needs to be the

devastating diagnosis that it once was. Thanks to hearing aids

and cochlear implants, deafness can be merely a bump in the

road. Every dream you have for your child can still be a reality.”

The rest will depend upon the parents. We were in shock and

not able to process signiﬁcant information right after receiving

the diagnosis. Yet, we are also the type who were ready to hit the

ground running. We gave ourselves 24 hours to cry, and then we

wanted to do something to help Rachel. Thus, depending upon the parents, they may want the rest of this information immediately or in the next day or week.

“You have options as to how to raise your child to commu-

•

nicate. You will hear many opinions, but you will need to do

your homework to ﬁgure out the true facts from what some

will tell you. Do not accept as fact what is not backed by peer-

reviewed, objective, professional research.” Most research out of Gallaudet does not meet these criteria.

“Meet older children raised with the various approaches to

•

help you decide what you want for your child.” “If you want your child to hear and speak, then you must make

•

that choice quickly and act quickly, because the sooner your child receives hearing aids or cochlear implants, the easier it will be for his or her brain to learn to use the information from the device, and the more quickly his or her language will catch

up. Children implanted at age 6 months can have age-appropriate language by age 2.”

“You cannot decide later, and your child cannot decide when

•

he or she is older, to learn to hear and speak. If you listen to those who tell you your child should make the choice when he

or she is older, you will have eectively made an irrevocable

choice for your child to communicate solely through visual

modes. The brain has the exibility to learn to hear and speak well only in the ﬁrst few years of life.”

“The signing Deaf community is shrinking as more and more

•

children receive early cochlear implants and live their lives

fully in the mainstream.” “Most children with hearing loss are born into families who

•

listen and talk. If they choose sign language, they will need to

learn a new language before they can teach it to their child.” “Have genetic testing done to determine the cause of your

•

child’s deafness. Some deafness is syndromic, meaning there are other issues that crop up later in life. Some of these could

aect your decision on how to communicate with your child,

in particular Usher syndrome. Six percent of children born deaf have Usher syndrome, which also includes retinitis pigmentosa and vision loss. While there is much promising research and even a clinical trial for one type of Usher syndrome, we do not yet have a cure for the vision loss. The vast majority of parents of children with Usher syndrome opt for cochlear implants and listening and spoken language to improve the

quality of their children’s lives.”

Finally, if you see this child repeatedly for appointments, watch the child for signs of vestibular issues, such as arching of the back; a head lag as an infant; and poor head control, including head bobbing on the mother’s shoulder as an infant. Late gross motor

milestones, including sitting, crawling, and walking (18+ months),

are all signs of an impaired vestibular system. Children who have

389

IV Educational and Clinical Management of Hearing Loss in Children

these signs in combination with profound deafness have a 36%

chance of having Usher syndrome type 1. These children should

deﬁnitely have genetic testing so that their parents have this

information in hand in order to make an informed decision about communication methodology.

37.3.2 Parent 9

Every family has a discovery story—how and when they ﬁgured

out a child couldn’t hear well. Discovering my son Alex’s hearing loss was long and agonizing, like falling downstairs in slow motion. He failed a screening at birth, but passed one a few weeks later, so we put hearing out of our minds. As an infant he was slow to hit all his milestones. At 1, he wasn’t walking or talking, and we were worried. I used to read to him classic children’s books like Goodnight Moon. I would say, “There’s the

cow jumping over the moon. Can you point to the cow?” He never

could.

When Alex was 15 months old, I asked our pediatrician to

send us for an early intervention evaluation. The report said Alex needed physical therapy and cognitive therapy, but not speech. At

18 months, when he still could only say ﬁve words, we ﬁnally had

another hearing test.

Sitting in that booth with my baby on my lap, trying to do as I’d been told and not to react to the sounds myself, was painful. Beeps and whistles came over the speakers and I stared at the back of Alex’s little brown head, willing him to turn toward the sound. He didn’t. His head stayed distressingly still as he stared straight ahead through the glass until the sounds got truly loud, and

then, ﬁnally, he looked to his right and his left. Eventually he was identiﬁed as having moderate to profound hearing loss bilaterally.

So now we knew. The knowledge brought a mix of emotions— fear, anxiety, grief, love, and a heavy dose of relief because the question we’d been asking for so many months had an answer. Hearing loss explained everything Alex couldn’t do. It explained why he couldn’t point to the cow. There was also anxiety because, like so many hearing parents, neither I nor my husband had ever really known a deaf or hard of hearing child.

We had to ﬁgure out what to do and where to go. Our early

intervention coordinator was lovely, but she had never worked with a child with hearing loss before, and the only assistive device she had ever ordered was a pair of leg braces. I gather now that I could have insisted on someone who knew something about this new world I was entering, but I didn’t know that then and she didn’t tell me. I began researching feverishly, so much so that I ultimately wrote a book about everything I’d learned.

Pearl

Audiologists should recommend and facilitate early intervention services from professionals who are trained to work with children who have hearing loss.

There are things that research can’t tell you. When Alex got hearing aids just before his second birthday, our audiologist gave us a full lesson in their use. The very next day, while we were in the car, Alex pulled out the aids and twisted and tangled them in with the cords and clip that were intended to keep them secure.

Then he ung them to the oor of the car. When I picked them up,

they looked like a nonsensical mess to me. I had no idea how to put them back together.

As it happened, on that day, at that moment, we were visiting schools in New York City that served kids with hearing loss. I was able to gather up my son and his hearing aids and head into a school where someone kindly put everything back together for me and popped the aids into Alex’s ears in seconds. I was wowed and just hoped I could do the same someday.

Clearly we needed some expertise at that point, and we found it in an auditory-oral preschool program. When Alex enrolled, his language skills were very delayed—in the second percentile for receptive language and eighth percentile for expressive. I wanted him to be bathed in sound all day, and that’s why we chose this program. I used to perch on a stool in the hallway to watch through the observation window as Alex had circle time or worked with his speech therapist. It was an education for me

as well as for him. The reports were full of clinical jargon: “Alex

assumed articulatory posture for /w/ sound without sound emis-

sion.“ Translation: he mouthed the “wah, wah, wah” of the babies cr

ying on the “Wheels of the Bus” song. By June, he was combining

words: wash baby, come doggie, go cat. I understood that for kids with hearing loss, no word could be taken for granted. Everything had to be introduced explicitly and repeatedly.

Then a computerized tomography (CT) scan revealed the cause of Alex’s hearing loss: Mondini dysplasia, a congenital deformity of the inner ear, and enlarged vestibular aqueduct (EVA) syndrome. The EVA meant that his hearing was likely to get worse. A bump in the head or a change in pressure could cause a sudden drop at any time, and that’s what happened. By September, Alex was profoundly deaf in his right ear.

Just when we thought we had ﬁnally gotten ourselves sorted,

we started all over again with tests and appointments because Alex was now a candidate for a cochlear implant. Eight months

into getting hearing aids and 4 months before his third birthday,

he was still in single-digit percentiles for language even though

his vocabulary had grown from ﬁve words to more than 100. All

the other two-year-olds in the world were soaking up language and growing their vocabularies at a much faster rate. Although Alex still had considerable residual hearing in his left ear, everyone thought it was only a matter of time before he lost that, too. He received a cochlear implant in his right ear and was activated

in January 2006.

We went back to bathing him with sound at school and at home. By June, he was showing real improvement. Each sign of progress was thrilling, but brought a new dilemma. We had to consider

what to do the following year, when he would be 4.

My older two boys were at an independent school in our neighborhood. The goal for a kid like Alex was always to swim in the mainstream. At his program for children with hearing loss, the teachers were getting him ready for that. But how long would that take? Would I know by watching through the observation window?

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