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37 Advice for Audiologists from Parents
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.
I knew the challenges. When I was at school for events with my
older children, I saw and heard the place entirely dierently now.
I heard the noise of the kids piling into assemblies, the feedback
in the sound system, the ringing of people banging around on the
bleachers. How would Alex survive in such a setting, much less
thrive? Would I be setting him up to fail? Educating Alex, I began
to realize, was going to be a moving target. Every year, we would
have to reassess and rethink.
We decided to apply just to keep the option open. On the day
that I had to turn in the application, I walked up the street to
hand-deliver the forms. My heart started thumping, my palms got
sweaty. I had to stop and stand on the corner for a minute. We
were at a fork in the road. I was thrilled and terrified, weighed
down and released. I wanted to protect Alex and I wanted to push
him. I wanted a safe haven and I wanted him in the wider world.
About a month later, Alex had his 1-year postimplant evaluation. The change was almost unbelievable. The scores that had
been so stubbornly dismal the year before—the eighth percentile
for receptive language and the sixth for expressive—had risen to
the 88th and the 63rd percentiles, respectively. He was actually
above age level on some measures. That progress made it easier—
for us and for the independent school. He entered the mainstream
as a 4-year-old in their preschool.
Pearl
As children move from a preschool setting to a public or private
elementary school, parents will feel anxious and fearful. During
this transition period, professionals have the opportunity to provide emotional support and information about services provided
in the schools, such as assistive technology and speech-language
therapy.
Now I had to learn all about the Related Services that New York
City’s Department of Education oered to support Alex in his
new environment. I spent months finding a teacher of the deaf
who would be able to fit Alex into his caseload and fit in at the
school. We started with four hours with the teacher of the deaf
per week, both in and out of the classroom, and two sessions of
speech therapy outside of school each week. Alex and I met with
his teachers before school started. He got a preview of the classroom, and they got a preview of his equipment and the FM system
y would use to amplify their voices. I also wrote a letter to his
the
classmates’ parents, introducing Alex, explaining his hearing loss
and the dierence between his cochlear implant and his hearing
aid. I welcomed questions. The letter worked well. One mother
told me that it was especially useful since her son came home the
first day of school and said that a boy named Alex had something
on his head to help keep him calm. She was glad she was ready
with an alternate explanation.
Some of the biggest challenges that year were technological. I
had mastered the hearing aids by then, but they were just a little
piece of the puzzle. With a hearing aid, a cochlear implant, and
an FM system, Alex had three dierent pieces of equipment and
no audiologist in the building. When everything was working, we
were in good shape. If everything shut down at once, which did
happen one horrible day, we were in deep trouble and reminded
of how fragile Alex’s connection to sound really was. More often,
the problem was that one piece of equipment or another might be
working but not optimally. Having to rely in part on a 4-year-old
reporter made it hard to tell what exactly was wrong.
That first year, David, our teacher of the deaf, served as my eyes
and ears. He reported that Alex was engaging in a lot of silliness;
he had staked a claim to being the funny kid. At first this seemed
unlikely, since he was still relatively quiet at home. But David
explained that silliness was a clever coping strategy. When the
conversation at the lunch table took a turn that Alex couldn’t follow
or when several kids were talking at once and he couldn’t hear, he
launched into a nonsense story to change the subject and had his
new friends rolling on the oor with laughter. (Preschoolers have
a low threshold for hilarity.) David helped reframe behavior that
the teacher and I otherwise might have handled dierently. The
switch into mainstream school was a time of translation between
Alex, me, his teacher, and his teacher of the deaf.
So it went for the next few years through kindergarten and first
grade. Alex learned to read. Victory! He showed aptitude in math.
He solidified friendships. David worked with him a few hours a
week. Once we had to ask the school to swap out the air condi-
tioner in Alex’s classroom after David tipped me o to how noisy
as. We kept up the speech therapy, and we kept meeting with
it w
teachers ahead of time and writing to parents. Generally, things
went well.
Then my husband’s job required a move to Hong Kong. It was a
real test. Was Alex doing as well as he was because of the safety
net and support system we’d built? Or did his success mean he
could leave that net and support system behind? I took a cue from
Alex himself. When we told our boys that we might move, the
other two were pretty horrified, but Alex leapt into my husband’s
lap and cried “We’re moving to China! You’re the best parents
ever!” His brothers protested: “He doesn’t understand. He doesn’t
know!” They were right. He didn’t. But wasn’t the point to make it
possible for Alex to have the whole world—literally—open to him?
In second and third grade in Hong Kong, there was no such
thing as a teacher of the deaf, at least not for expatriate kids in
the American school. We worked with the learning specialists the
school had on sta, and we found a British speech pathologist to
work with him at home. There were new problems with noise.
Out of nine second-grade classrooms, eight were in open clusters
separated only by partitions. Fortunately, the school readily
agreed that Alex should be in the one classroom with four walls.
In second grade, I also got a window into Alex’s daily challenges
when I went to a classroom “publishing party.” Parents and
students sat in groups around the room, and the kids took turns
reading. That meant that at least 10 kids were talking at once. The
teachers had tried to tuck Alex and his partner into a corner against
the wall, but it was still incredibly noisy. When Alex’s classmate
read her story out loud, she turned her face to her mother, away
from Alex. She was using the FM microphone, but she was so quiet
I couldn’t hear her myself. I was distressed that Alex had to put
up with this kind of situation day in and day out. But when it was
time to comment on the reading, Alex showed me how he coped.
391
IV Educational and Clinical Management of Hearing Loss in Children
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.
“I like how you wrote the word ICE CREAM in capital letters all
across the page,” he told the girl. He had picked out something
visual to comment on and worked it in naturally. Nevertheless, I
added “small group work” to my list of situations for teachers to
be thoughtful about. Whenever possible, Alex’s group goes into
another room or into the hallway—anywhere that is quieter.
We returned to New York City for fourth grade. As I write,
he is in eighth grade. Middle school was an adjustment. He has
dierent teachers for each class and moves from room to room.
His FM is entirely his responsibility. “The hardest thing about
middle school is being on my own,” he told me, “and adapting to
new teachers.” He’s not entirely on his own though. He still sees a
teacher of the deaf, though only for 30 minutes per week. He also
has an experienced tutor who helps with homework every week.
Beginning in sixth grade, I stopped writing to parents, and Alex
and I created a guide for his teachers listing things they needed
to remember, such as captions for videos and giving homework
assignments in written as well as spoken form.
Alex now fields questions from his peers on his own. “What’s
that on your ear?” they ask. “It helps me hear,” he answers. “Oh
cool,” he tells me they say. When I told him I liked his attitude, he
said, “You can choose who you want to be, don’t let the hearing
aid choose who you are.” He wouldn’t always have put it that way,
and the fact that he said it so matter-of-factly is a hard-won bit of
self-esteem.
Pearl
Empowering children with hearing loss can result in a beautiful,
strong student who states, “You can choose who you want to
be, don’t let the hearing aid choose who you are.” However,
these students still need our professional support, particularly in
educational settings that are noisy and challenging.
There are lots of challenges still. Kids are loud in middle school.
The cafeteria and the gym have bad acoustics. Alex worries about
being dierent, about being singled out. He is not always willing
to advocate for himself—despite years of being schooled in that
art. And, of course, he can’t necessarily recognize the moments
when he misses something. The academics keep getting harder,
but last year Alex made the honor roll.
No matter how much this generation of children with hearing
loss can achieve, we should keep a safety net under them. We must
stay vigilant. We must remember that the educational needs for
a deaf child will change every year. We must communicate—with
teachers, administrators, other kids, other parents.
I believe Alex is richer for getting to go to a school like the one
he attends. But the education also goes the other way. After the
head of our school read my book, he wrote me a note in which
he said that the school was richer for having Alex. I thought that
was lovely, but I also thought it was true. I’m not just saying that
because Alex is my son and I think he’s terrific. He’s a living,
laughing, basketball-playing, math-loving reminder of what deaf
kids can accomplish these days. May there be many, many more
like him.
37.3.3 Parent 10
To most parents, the audiologist is the window and the gateway
into the unknown, unfamiliar world of hearing loss. Parents rely
on their audiologist as a diagnostician, educator, team member,
therapist, connector, fortune teller, scientist, and artist.
I thought about a number of issues while I was pregnant:
What if the Down syndrome test is positive? Will the 20-week
ultrasound be OK? Will he have 10 fingers and 10 toes? What if
something happens during delivery? Never once did it occur to
me that my child would not be able to hear. So, when the unit
assistant handed me a pamphlet asking, “Can your child hear
you?” and shrugged when I asked why I had received it, I tucked it
in my bag and headed out the door. In the haze of the first days of
motherhood, I almost never called the number on the pamphlet.
When I did call and was told that there must be a mistake because
my son’s name wasn’t on the follow-up list, I almost didn’t insist
on an audiology appointment.
By the time we met our pediatric audiologist 1 month later,
my head was spinning with an overwhelming number of letters:
OAE, ABR, SNHL, EI, IFSP, CI, ENT, SLP, AuD. I wasn’t yet following
the ABR’s mass of squiggles or the significance of the speech
banana. I tried to take my pediatrician’s words to heart, “Don’t
worry. Brendan’s hearing loss won’t define him,” but I didn’t
really believe him. The game-changing moment came at the end
of the audiology visit when the audiologist walked me down the
hall to introduce me to the Center’s speech therapist and handed
me a piece of paper with the names of parents whose children
had hearing loss and were a few years older than mine. Could I
successfully navigate the world of hearing loss and help my son
meet his potential? I had no idea. But I could bring him to speech
therapy and meet parents who had been in my position a few
years ago.
Aside from the speech therapist, the audiologist is often the
professional with whom the parents of infants with hearing loss
interact most frequently. The audiologist performs the diagnostic
testing and has experience with many other children with hearing
loss, so the parents also tend to weigh the audiologist’s opinion
heavily when they are making choices about treatment for their
child’s hearing loss. The next major crossroad as a parent of a child
with profound hearing loss is the decision about whether to move
forward with a cochlear implant, and if so, how many and when.
For many parents this is an incredibly dicult process because the
answer is not always clear. Those parents whom I have seen struggle the most with this decision are those whose child has residual
he
aring that could be lost after surgery and those whose child has
an anatomic variant or issue with the auditory nerve, which makes
the potential for success with a cochlear implant less clear.
We were incredibly fortunate in that the decision was pretty
straightforward for us. We lived in an area with an incredible
cochlear implant team—ENT, audiology, and speech professionals
who were talented, highly experienced, and excellent collaborators. We had access to an amazing early intervention program that
provided our children with all the services they required to help
them succeed. Our children also had profound hearing loss with
very little residual hearing, and we wanted to try an oral approach
if that seemed clinically reasonable for our children and our family.
Finally, we were lucky to have excellent health insurance, which
392
37 Advice for Audiologists from Parents
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.
covered the surgical cost and allowed us to complete sequential
bilateral surgery before the children turned 1.
Despite this ideal situation, we still had a few moments of panic
after the surgery. Both children had skin reactions to the dissolvable sutures, so incisions took longer to heal than expected. Even
after his incisions healed, ours had issues with pressure sores on
his ears from the weight of the cochlear implant sound processors.
Thanks to the experience of our audiologist, the ingenuity of other
parents, and my mother’s sewing skills, we developed a solution.
A pilot cap held the processors close to his head and took some
pressure o his ears. Infant mittens sewn to the back of his onesies
held the processor battery so that he wouldn’t have to wear the
entire processor on his ear.
Once the practical issues were addressed, we focused on our
son’s hearing, perhaps a little too much. With his hearing aids
our son could hear loud sounds—airplanes overhead, ambulances
going by (if he was awake), and my husband’s deep voice. After
surgery, he initially seemed to lose those low sounds. In reality, he
was most likely listening to all the high-frequency sounds he had
never heard. It was hard to wait for his responses to return, even
though, looking back, it really didn’t take that long. Our audiologist and speech therapist were there to explain and reassure us
throughout the experience.
I have no doubt that our son’s speech development would
have taken much longer without a dedicated team. Our son had
recurrent ear infections, which caused worry about meningitis.
His MAPs also changed frequently. Once, our surgeon saw him
during speech when our son developed a fever from an ear
infection. When he seemed not to be hearing or producing certain
sounds, our speech therapist would relate her observations to our
audiologist, who would then change our son’s MAP accordingly.
Our audiologist has helped us in countless other ways. Our
son qualified for a processor upgrade after our audiologist documented that his hearing in noise improved dramatically with
the new processor programming. One spring, she let me know
when new processor accessories were coming out that would
make swimming easier for the kids. She has participated in IEP
[Individualized Education Program] meetings and thoughtfully
explained why the school should provide Roger systems to help
them hear more eectively at school.
Soon, I’m sure there will be a day when my kids and their
audiologist no longer need me. Our audiologist has been there
to help when our daughter wanted sparkly purple earmolds and
bejeweled processors. She has also been there to listen when our
daughter balked against wearing a retention clip because she
didn’t want the kids at her new school to think that she was dierent. The kids have learned self-advocacy and independence. They
already do much of the cochlear implant processor maintenance
themselves. At his last MAPping appointment, my son asked our
audiologist if he could MAP himself remotely from home. She
told him that when he developed the software, he could do that.
Maybe he will.
37.3.4 Parent 11
As the mother of a bilaterally implanted daughter who is now
12 years old and a very successful communicator, I find it a great
deal easier to reect back on the early days when trips to the
audiologist tested the limits of our sanity. Our baby screamed
as though she were being tortured, not gaining access to sound.
It would be hard to say who cried harder on those days: our
14-month-old daughter at the appointment or me late at night
after playing the heroic mother all day long. Those early sessions
were a living hell, and without laying blame, I now wonder if
they had to be so dicult.
As a hearing parent with no previous experience using hearing
aids, let alone cochlear implants, you are suddenly thrust into
very foreign territory when your child is diagnosed with any kind
of hearing loss that requires the use of an audiologist and some
newfangled equipment. If you’re like me, you do a lot of research
in a short amount of time so you can try and ask some of the
right questions and fumble your way dialoguing with doctors
and therapists. It should come as no surprise, however, that you
and your family are ultimately at the mercy of your audiologist,
because in essence, that is who you must trust with the care of
your child in much the same way as you trusted the doctor who
performed the surgery on your child (if your kid gets cochlear
implants as our little one did). Frankly, I would even argue that the
more important person in this scenario is the audiologist, not the
surgeon, because how the equipment is programmed and used is
what matters most. It is what gets the results. As with anything,
you can buy all the right gear, but if someone doesn’t teach you
how to put it on properly and use it, you are dead in the water.
Your audiologist is the most important person in your life.
With that in mind, here is my strong opinion as to what skill set
would be important or at least beneficial for a pediatric audiologist
to bring to the table when working with kids and their parents:
Assume we know nothing and we’re scared. It’s a lot of techno-
•
logical mumbo jumbo, we have no idea about sound or hearing
or speech, or why there seem to be so many sound barriers to
cross before we can get our kids listening and speaking. You
control the machinery—be it hearing aids or implants—that
will bring sound to our kiddos’ ears, so take some time to
explain how it all works, to answer questions, explain the
process, how and why you became an audiologist, what to
expect over time etc.
Then take a few minutes during that first audiology session
•
to get to know the child, whatever age that child might be. I
used to joke that our first audiologist never heard our kid’s
voice because she only wailed during our sessions and never
actually spoke. Getting down on the oor or playing with your
student, one on one at their level, can make a whole lot of
dierence before you get them into the testing booth. It helps
to build trust among everyone.
If things don’t go as planned in the booth or with the child,
•
change tactics. Read the cues/signals the kid is communicating
to you. If he/she is screaming all the time, something is amiss.
Guaranteed.
Teach your patient and your parents to be eective communi-
•
cators. Don’t assume either knows what they mean or how to
do that. Create a cheat sheet to help them.
Most importantly perhaps, know you are doing a hero’s job.
•
Seriously. If not for your choosing to pursue this profession,
what would we all do? I promise you, our family will be forever
393
IV Educational and Clinical Management of Hearing Loss in Children
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.
grateful to our audiologist, who quite literally changed our
lives and gave our daughter access to sound. (We’re also forever
grateful to our auditory-verbal therapist, who not only introduced us to our audiologist but also gave our daughter speech.)
There is a catastrophic shortage of amazing, dedicated profes-
sionals in both of these fields, and with technology advancing
in the way it is, it is imperative that pediatric audiologists
compete at the very highest level. Our kids cannot possibly be
successful learning to listen and speak without you helming
the ship from the beginning and (this is the important part)
partnering in a very meaningful way with the auditory-verbal therapists and speech pathologists, the parents, and the
educators and administrators. You alone play the pivotal role
because you alone can manipulate the technology to respond
to a myriad of varying conditions and to the needs of your
patients. Everyone else is at your mercy, although their egos
and personal mandates may drive you insane. Just remember
who is at the center of this sometimes absurd power struggle:
a child with hearing loss. Steer that ship well, and the child
(like ours) will thrive.
37.3.5 Parent 12
It’s been an inc redible journey, as a proud parent of my profou ndly
deaf daughter with bilateral cochlear implants (implanted at 16
months and 35 months).
At the time of her birth, California did not require newborn
screening. Although Holly seemed to be normal, there were some
concerns. At her year checkup, I brought up to her pediatrician
that she was not babbling, just screaming in a high pitch. I also
shared with our doctor that she liked to hang upside down, like
a bat. I have since learned that this can be a trait of deafness.
Deafness did not run in our family, so I was completely unware of
the red ags.
We were referred to our local Children’s Hospital for testing,
which included the ABR assessment. As they put my daughter to
sleep, I never expected to hear the news that she was profoundly
deaf. As my husband and I sat there listening to beeps, left ear
first, beep, beep, beep. The doctor turned and said, “I am sorry,
there is no response.” I said to the doctor, “It must be the right
ear that she can hear with,” but again, I only heard beep, beep,
beep. The doctor turned and said to us, “I am sorry; there was no
response.” At this point, my husband basically went into zombie
state. He didn’t know how to deal with this news that his baby girl
was profoundly deaf. On the other hand, the teacher side of me
kicked in. “Doctor, where do we get her hearing aids?” The doctor
replied, “I am sorry; hearing aids are probably not going to work
and we will be giving her name to the State.” Of course walking out
of the hospital was one of the hardest days of my life. I was caught
between crying and having a million thoughts running through
my head: “Will she ever talk?” “Will she be teased?” “Will we have
to take care of her the rest of her life?” “How does she know that I
love her since she has never heard my voice?” The diagnosis from
the audiologist was no doubt a dicult one, but that day started a
new journey for our entire family.
Within 2 days we were at a deaf auditory-verbal school, where
we had heard that children with profound hearing loss could
actually speak normally. Maybe this was the miracle we were
looking for! This school was a reversed mainstreamed preschool
with hearing and hearing-impaired children. This is a story I have
repeated often about that day. The director walked my mom and
me into a 4-year-old classroom. The director began talking with a
little girl asking questions: “What’s your favorite color?” “Pink!”
“What’s your favorite food?” “Pizza!” Her speech sounded just
like a typical hearing 4-year-old. I was impressed, but this little
girl couldn’t be as deaf as my Holly. The director turned to me and
told me that she was. I looked at my mom and burst into tears.
There was hope! I had hope that maybe one day my Holly could
talk. Being a teacher, I knew that the most language development
takes place between 0 and 3 years old. At that moment, it was go
time!
My first bit of advice would be to give your families a support
group or family for them to connect with. On our journey, we have
met so many wonderful families, who have all had dierent experiences and journeys, but who were all willing to share and give
suppor
t. Hearing that your child is deaf can be devastating and
can take months to accept, but if parents can find that one family
to give them hope, it can really help them begin their journey.
We began visiting audiologists from Los Angeles to San Diego in
search of answers. Even with hearing aids on, she had no response
to sound in our everyday life or in the booth. I always like to share
this story. At one of her first tests in the booth, Holly was a busy
little toddler stacking blocks, and the audiologist told me that
the next sound was going to be loud and that I needed to put on
the headphones. The next thing we heard was a jet taking o,
but Holly didn’t even look up. Shocked, we keep trudging away,
making her wear her loaner hearing aids under a baby bonnet,
otherwise there was no keeping them on as she was a toddler
and was receiving no sound benefit from them. We knew hearing
aids were not the answer, but some audiologists wanted her to
wear hearing aids for 6 months, so we moved on. We had already
missed valuable time and did not have more time to lose.
Finally, she was implanted on the left side at 16 months and
turned on at 17 months. It is an incredible moment to see your
child look up when you call her name. She wore her cochlear
implant 95% of the day. I even had her take her naps with it on. She
took it o only for going to bed at night, and into the dry and store
box it would go. She went to audiology verbal therapy 5 days a
week for an hour, both private therapy and our local county therapy. I did my research that one of the cochlear implant companies
found that children who receive therapy 5 days a week for smaller
time amounts did better than those who received 2 days of week
of therapy for a couple hours.
Once she was turned on, we did not sign with her. We had been
told that children who continue to sign do not have as clear of
articulation. One hundred percent true in our experience with
Holly! They don’t learn to really listen and use their devices if they
can still rely on sign language. Also, we were MAPping her proba-
bly every 2 to 3 months for the first year or two as her speech was
developing.
Another helpful tool we used was a traveling journal between
her therapists and audiologist. She received both private and
county services, so I wanted everyone to be on the same page for
her goals. On each page was a checklist with all her IEP goals and
a section where the therapists would write what they worked
on for every session. The next therapist would review what was
covered by the previous therapist. It was also a great resource for
394
37 Advice for Audiologists from Parents
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.
our audiologist to see whether there was a pattern of sounds she
was not hearing or if it was just small adjustment needed to her
map. An example, /m/ versus /n/ to see whether she was hearing
the dierence between those sounds. My goal was to make sure
that all team members were informed and working together.
The day Holly turned 2 years old, I put her in a hearing preschool.
I wanted her to be around hearing children using age-appropriate
language. I also wanted her to start to learn to be an advocate for
herself and start to learn coping skills in a noisy environment.
She attended preschool in the morning until noon; then we were
o to therapy. My goal was to have her fully mainstreamed by
kindergarten. Being a teacher, I knew in my classroom, children
never wanted to be pulled out for therapy.
At 35 months, Holly received her second implant on the right
side and was turned on within days. It was just amazing to see that
auditory nerve and brain go to work. By this time, she was almost
3 years old and talking up a storm. In therapy, they would take
the good side o and work on the newly implanted side. It was
amazing to me that the therapist would ask for a toy lion and she
would hand her the cow. With good side (first side) on, she could
describe everything about a lion, but the new implanted side was
a dierent story! The auditory nerve needs sound, which is like
food to help that auditory nerve to begin to grow. My daughter’s
newly implanted ear caught up pretty quickly, and both ears were
working about the same within about 3 months. Again, MAPping
is critical with bilateral implants—making sure not only that each
ear is hearing well but that one side isn’t louder or quieter than
the other.
By the time Holly was entering kindergarten, she was done
with therapy and exited from speech and language therapy by
the school district. At this point, we were having her MAPped
probably two times a year. Since about third grade she is MAPped
one time a year, unless she reports that something doesn’t sound
right. Again, we taught her to be an advocate for herself starting at
age 2 years old. We also do listening checks at home about once a
month. I have her sit across the room and use a hoop to cover my
mouth, as she is excellent lip reader. If we have troubleshot the
volume and programs and she’s still making errors, it’s time to
visit our audiologist.
From kindergarten until last year, she used an FM Radium
[Centrum Sound Systems, Sunnyvale, CA; now discontinued and
superseded by the FrontRow ToGo soundfield system from the
same manufacturer] in her classroom. It’s basically like a karaoke
machine. The teacher wears a mic, and all the children benefit.
Today, Holly is 13 years old and in the eighth grade. She is part
of the student body ASB [Associated Student Body], delivers the
morning announcements to the school over the loudspeaker,
and carries a 4.0 with her grades. Holly is also one of the top
soccer players in the nation for her age. She is on the Olympic
Developmental team and trains with U.S. Soccer, all hearing
teams. Just this week ago, she was contacted by the head coach
of the Women’s National Deaf Soccer team. What an incredible
experience to represent our Nation and the Deaf Community! Yes,
my daughter is profoundly deaf, but that has not slowed her down
on accomplishing her goals. Holly has had an incredible team
of surgeons, audiologists, and therapists along our journey in
helping her to be successful with her bilateral cochlear implants. I
couldn’t be more proud of her.
37.3.6 Parent 13
A good audiologist knows his trade; a great audiologist is one who
can empathize with his patients, know their history, and address
their needs holistically. As a parent, it’s been our experience with
health professionals that too many of them have become content
and narrowly focused on their field, thus treating only symptoms
that fall within their specialty instead of treating the individual
and the collective impact of the disability or diagnosis.
Pitfall
Professionals should avoid treating only symptoms and should,
instead, treat each child as an individual with dierent needs.
At a very young age, our child refused to wear his cochlear
implant device. He didn’t have enough language to tell us why, and
he hadn’t had problems prior to his last MAPping. We contacted
our audiologist at the time and explained our child’s behavior. The
audiologist told us that this was common for the age and suggested
we do what we could to keep the device on. Our Auditory-Verbal
Therapist told us this was not common behavior and referred us
to another audiologist for a second opinion.
What we learned (from a second opinion) changed the direction
of our son’s life. Our new audiologist listened to our concerns, witnessed our child’s rejection of his cochlear implant processor, and
gan investigating why our son was exhibiting such behavior.
be
After a thorough check of equipment, she quickly identified the
problem as a MAPping issue. Our son’s cochlear implant processor
was overstimulating as the volume was set too high. The new
audiologist reMAPped the processor, and our son immediately
began wearing his device again.
After witnessing how our son was MAPped and the dierent
approaches between the two audiologists, we saw who the true
professional was. Great audiologists continue to learn; they are
not complacent. They are humble; if they don’t have an answer
to a problem, they confer and consult with others. They are
honest; they recommend equipment or services that best meet
the needs of the patient, especially in a school setting. Lastly, great
audiologists are kind and understanding to their patients’ needs.
Having a disability is not easy for any individual or family; being
compassionate and helpful will only bring success to you and your
patients.
37.3.7 Parent 14
Late Friday afternoon, now out of his semi-comatose state, our
son was finally regaining the spark that had evaporated during
his battle with bacterial meningitis. The attending physician
explained that Monday would be his hearing exam, a routine
check before he could be discharged from the hospital. By
Saturday evening, as we were enjoying his favorite—Lakers basketball on TV—we noticed Michael’s responses began to change
over the course of the game. His facial aect began to change,
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and he retreated. By the time he was being sedated Monday
morning for his ABR screening, we knew it was gone . . . and as
the audiologist at Children’s Hospital confirmed shortly thereafter, with tears running down her face, “Michael has profound
bilateral sensorineural hearing loss.” What we later found out is
that he was in a rare category of profoundly deaf people who had
absolutely no residual hearing.
In a moment, the world became very, very tiny . . . in an extraordinary way. The vast metropolis of Los Angeles shrunk, and the
audiologist, holding the keys to the treasure, introduced us to a
whole community of professionals ready to walk with us in the
journey ahead.
By the time we left the hospital 3 days later, we had already
talked with teachers of deaf preschoolers and set up an appointment for them to visit our home and for us to attend parent/child
classes when Michael had recovered. We also had an appointment
to see a surgeon and the audiologists at the implant program.
We were immediately in touch with an auditory-verbal therapist
(AVT) in Los Angeles and she squeezed us in. In addition, a TV had
been wheeled into our room so we could watch a video called
Cecilia that the hospital audiologist had arranged. With tears
streaming down our faces, we received our first injection of hope.
Cecilia was one of the early cochlear implant recipients, and we
clung to the hope that Michael would someday actually hear and
talk again, however minimally, in the future. We had even made
contact with the local Regional Center and our school district
prior to discharge.
The year was 2000, and we made all of these connections with
folks from our hospital phone (pre–smartphones and the Internet
inaccessible from our room). We were forced to purely rely on
people for these professional referrals, and the hospital audiologist began this process for us, giving us boundless hope that, if we
tapped into all resources possible, we could begin to navigate the
maze of raising a deaf toddler.
Once he was implanted several months later, we realized once
again the critical importance of our clinical audiologist. We fortunately were assigned to a bright, fearless audiologist who worked
very closely with both the implant company and the AVT to mag-
ically refine Michael’s second iteration of “Mommy,” which came
out: “Gay-gah.” Through many hours of parent education, we kept
coming back to the fact that our child would produce the sounds
that he heard. Period. The importance of the audiologist, during
what we aectionately refer to as the “smoke and mirrors” period
of our audiology experience, became integral as our 3-person
team (parent, AVT, and ultimately the audiologist) fine-tuned his
MAP to straighten out what he was hearing, based solely on his
word approximations, which seemed bizarre to me as a parent. It
took at least 8 months for our team to build a decent MAP—hence
the smoke and mirror phase of the early days, using comfort and
threshold measurements rather than neural response telemetry.
This team worked beautifully until, one day, we lost the keys to
the treasure.
We switched insurance, and at age 5 years, for the first time,
Michael tugged on my leg after his annual audiology appointment
and whispered, “Mommy, I can’t hear a thing.” Back to square
one . . . several times. After complete implant failure and revision
surgery in kindergarten and a brand-new implant on the other side
4 years later, we experienced something with our audiologist that
every parent dreads: no expectations for the second ear, since he
was already 9 years old. Not only had our parent–AVT–audiologist
triad dissolved, but Michael was left in the middle, jumping out of
his skin for the first time to ushing toilets and school bells. Our
AVT was brutally honest, “I can’t do much if he’s not programmed
properly.” Fortunately, our AVT immediately steered us toward a
brilliant audiologist (hours away from home) who could not only
explain exactly how she was programming his implant, but also
why and how she was making adjustments for specific phonemes,
the key to the meaning of all spoken language. Not only were
expectations limitless for Michael’s second ear, but there was also
no reason, according to the audiologist, why the right and left ears
would not eventually obtain nearly balanced bilateral hearing for
accuracy and meaning. Nine years later, this is remarkably close
to being the case.
As we embark on the college admissions process, our team came
together again. Before our annual audiology appointment, we
spoke with our truly unbelievable AVT, who has been by our side
for 16 years, picking her brain about what to research and consider
prior to Michael leaving home. Last month, during our annual
audiology appointment, we thoroughly discussed all the issues
Michael would be facing next year as he enters college . . . from the
importance of getting new processors and using Communication
Access Realtime Translation (CART) for big lectures, to beginning
the application process for the Department of Vocational Rehab
and connecting dorm smoke detectors to his alarm clock. At the
end of the session, our audiologist had one adjustment to make
after programming his implants along the neural response curve:
“ah-da” was heard as “ah-ga.” She joked, “We just need to make
sure you’re not hearing goggies for doggies.”
After all these years, I want to thank the hospital audiologist
who modeled infinite expectations for our deafened son and leaning on all the resources we possibly could. If recently trained audiologists were to ask me what parents need from their audiologists,
I would say there are three critical pieces: (1) the compassion and
understanding that parents will go to the ends of the earth for
access to excellent hearing for their child, (2) a willingness to work
as a close team member with parent and AVT to make specific
adjustments to device programming, and (3) the desire to endlessly learn how to program devices better, pushing the envelope
of possibility, as technology becomes more sophisticated, which
may include frequent calls to hearing aid/implant companies and
colleagues. To all of our audiologists over the years, thank you for
patiently teaching us, carefully listening to our concerns, and for
being the key to the treasure for all hearing-impaired children.
Pearl
Compassion, teamwork, and optimal technology settings will be
appreciated by parents who want the best outcomes for their
children.
37.3.8 Parent 15
We found out our daughter Drew was deaf when she was about
21/2 years old. That was after a pair of misdiagnoses (by the same
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audiologist) delayed our knowing she was deaf by more than
a year and a half. Our main complaint is that audiologists (and
audiology clinics) should focus their energies (more than we
experienced) on kids and parents who were recently diagnosed.
Part of this has to do with being sensitive to the fact that the
parents of a recently diagnosed deaf child are in an emotionally
fragile place. Audiologists need to be sensitive to the fact that
everything they say could be touching a raw nerve that will bring
a parent to tears. But we’re guessing that lots of parents will be
voicing this concern, and so we would like to make a dierent
point, one that’s more pragmatic. We found it much too dicult
to get appointments in the first year after diagnosis—and that is
precisely when it was extremely important to get appointments
in a timely fashion.
By the time a year had passed after Drew’s diagnosis, she had
a cochlear implant, she had been MAPped, her MAP had been
tweaked several times, and she was more or less set. Obviously,
she still had to be seen by an audiologist, but the situation wasn’t
urgent. Now, once in a while, there was something urgent. For
example, when her processor might suddenly stop working.
When that happened, our clinic treated it as an emergency and
found a way to fit us in.
But during that first year (and especially during the first 6 to
9 months), nothing was treated like an emergency, though to
us it felt like one. And in fact, 18 years later, we still think that it
was an emergency. As audiologists are well aware, children have
relatively short windows of peak language-learning time. Every
day counts, especially when you’re dealing with a child who has
already missed a huge chunk of his or her window (and who is
dealing with a disability).
In addition, during this time, parents are dealing with insurance companies that are, as a general rule, awful. And even
when they’re not awful, they require parents to jump through a
ton of hoops in order get their child approved for something like
cochlear implant surgery. Getting it approved to happen quickly
is extremely dicult—probably a lot more dicult than most
audiologists understand. Everything takes too much time. And
our clinic was part of the problem. They sometimes wouldn’t
let us make appointments until we had authorizations from our
insurance company, and then once we got authorizations, it would
often take several weeks to get an appointment. It was nothing
short of maddening for us.
So here is our advice: during the first 6 months to a year after
diagnosis, appointments should be treated as “emergencies” by
the clinic. That is the time when kids need to get in to see their
audiologist. Two years later, it doesn’t matter if they have to wait
an extra month for their MAPping appointment. But making kids
wait an extra month for a presurgery appointment, or for one of
the first two or three MAPpings, is not good. Clinics need to make
those kids a priority.
Our other piece of advice is that parents should be more encouraged to change audiologists if they are not happy. Audiology is
a bit of an art. There can be problems getting a good MAP for a
child’s cochlear implants. Obviously some audiologists are better
at it than others. But we think that (a) sometimes dierent audiologists have dierent theories (or dierent ways) of MAPping
children, and (b) sometimes one audiologist’s method fits better
with a given child than another audiologist’s method does. This
doesn’t necessarily mean that the one audiologist is better than
the other. It might just be an issue of fit. And so we think that
audiologists and clinics should be more open to shifting children
around to dierent audiologists, if things aren’t going as well as
they could, or if it feels like they’re having trouble finding a good
MAP, or if personalities do not match.
Discussion Questions
1. How can an audiologist provide positive encouragement to
families during the diagnostic evaluation process?
2. How can an audiologist provide positive encouragement to
families during initial cochlear implant programming?
3. How should audiologists discuss communication options with
families of newly diagnosed children with hearing loss?
4. How do we insure that families are full members of the team?
397
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Index
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.
Note: b indicates a box; f, a figure; and t, a table.
A
ABRs. See Auditory brainstem response (ABRs)
Acceptance for teens with hearing loss, 375–376
Acoustic speech signal, 207–213
amplitude and distance, 207–208, 208f
audiogram form, 209, 209f
short-term amplitude variation, 208–209, 209f
sound patterns, 211–212, 211f
speech amplitude, 207
speech banana, 212, 212f
speech intelligibility, 207, 207f
speech intelligibility index, 210–211, 210
speech spectrum, 208, 208f
Acoustic stapedius reex testing, 115
Acquired perinatal and postnatal sensory disorders, 22–23
autoimmune inner ear disorder, (AIED), 22
meningitis, 22
ototoxicity, 23
persistent pulmonary hypertension of membrane oxygenation, 22
viral infections, 22–23
Acquired postnatal conductive disorders, 19–20
complications, otitis media with eusion, 20
excessive cerumen, 20
otitis externa, 20
otitis media with eusion, 19–20
Acquired prenatal conductive disorders, 18–19
middle ear anomalies, 19
outer ear anomalies, 18–19
Acquired prenatal sensory disorders, 20–21
congenital syphilis, 21
cytomegalovirus, 21
inner ear anomalies, 20–21
maternal rubella, 21
toxoplasmosis, 22
ADA. See Americans with Disabilities Act (ADA)
ADA Title II, 336
ADHD. See Attention-deficit/hyperactivity disorder (ADHD) entries
AEPs. See Auditory evoked potentials (AEPs)
AIED. Autoimmune inner ear disorder (AIED)
American National Standards Institute (ANSI) standards, 251, 252
American Sign Language (ASL), 290t
Americans with Disabilities Act (ADA), 322, 330
Title I employment provisions, 330
Title II state and local governments, 330
Title III public accommodations, 331, 331f, 332t
AMLR. See Auditory middle latency response (AMLR)
Amplitude and distance, 207–208, 208f
ANSD. See Auditory neuropathy spectrum disorder (ANSD)
ANSI standards See American National Standards Institute (ANSI)
standards
Antibiotics, 50
ANSD. See Auditory neuropathy spectrum disorder (ANSD)
APD. See Auditory processing disorders entries
Appropriate speech perception test selection, 100
Appropriate test selection, 67
ASD. See Autism spectrum disorder (ASD) entries
ASL. See American Sign Language (ASL)
Assistive technology for classrooms, 319–320
ASSR. See Auditory steady-state response (ASSR)
Attention-deficit/hyperactivity disorder and clinical applications
of ALR, 155
of P300, 159
Attention-deficit/hyperactivity disorder (ADHD) hearing evaluation, 96
Audiogram form, 209, 209f
Audiologic and neurologic AEP testing distinction, 137
Audiologic test results interpretation and use, 197–203
application, reliability and validity to pediatric testing, 198
interpretation, 198–200
insucient information recommendations, 199
speech perception interpretation issues, 198
verification and validation of hearing aid fitting, 199–200, 199t, 200t
recommendations, 200–201
diagnostic, 200
educational, 201
mild and unilateral hearing loss, 201
profound hearing loss, 201
speech/language/literacy, 200–201
technology, 200
reliability, 198
validity, 198
Audiologist, collaborative team management, 280–281, 280t
Audiologist role with families, 365–368
application, family-centered principles to clinical audiology, 366–368
family-centered meaning, 366
follow-up and follow-through, 368
informing families of diagnostic results, 366–368
Audiology assistant, role in assessment, 131–133
behavioral observation audiometry, 132
conditioned play audiometry, 132
with parents, 131
speech audiometry, 132–133
test room management, 135
visual reinforcement audiometry, 132
Auditory assistant, role of in behavioral evaluation, 87
Auditory brain development and literacy, 13, 13f
Auditory brainstem response (ABRs), 135
Auditory deprivation, 8–9, 9f
and clinical applications of ALR, 155
Auditory evoked potentials (AEPs), 135, 136t
Auditory evoked response testing in children, 135–144
audiologic and neurologic AEP testing distinction, 137
input-output function, 136, 136f
neurologic ABR/CM testing, 142–143, 143f
threshold ABR, 137–142
audiogram estimation, 141, 142t
cross-hearing, 141, 141f
estimation basis, 137–138, 137f
patient, state of, 138
recording parameters and strategy, 139–140, 140t
reporting, accuracy, and confidence limits, 141f, 142
stimulus options, 138–139, 139, 140
threshold ASSR testing, 143, 143ttt
Auditory middle latency response (AMLR), 146–151
analysis and interpretation, 147–148, 148f
anatomic generators and developmental changes, 149
clinical applications, 149–151
auditory processing, learning, and language disorders, 150–151
cochlear implantation, 150
estimation of hearing threshold, 149–150
neurodiagnosis, 150
measur emen t, 146–147
monitoring depth of anesthesia, 151
nonpathologic factors, 148
pediatric populations applications, 148
Auditory neuropathy spectrum disorder (ANSD), 23, 36
and clinical applications of ALR, 155–156
and early intervention, 297, 297f
399
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Index
Auditory neuropathy spectrum disorder (ANSD) management, 347–355
diagnosing, 349–350
clinical test battery, 349, 349t, 350
late diagnosis, 350
recovery, 349–350
family-centered multidisciplinary assessment and replacement,
353–354
overview, 347–349
audiologic characteristics, 348, 348f
definition and terminology, 347
functional auditory behaviors and language outcomes, 348–349
lesion site, 348
prevalence and etiology, 348
speech perception characteristics, 348
postdiagnostic management, 350–354
cochlear implants, 352–353
hearing aids, 351–352
objective and functional approach, 351
Auditory processing and clinical applications of ALR, documentation of
improvements, 154
Auditory processing disorders (APD) assessment, treatment, and
management, 173–187
assessment of auditory processing skills in children, 176–180
behavioral assessment, 178
binaural interaction tests, 178–179
dichotic listening tests, 178
electroacoustic assessment, 179
electrophysiologic assessment, 180
localization and lateralization tests, 178
monaural low-redundancy tests, 178
temporal processing tests, 178
test battery development, 179
test battery selection, 177
conceptual framework, 174–176
management and treatment, 180–183
compensatory strategies, 182
direct therapeutic approaches of treatment, 182–183
educational environment, 181–182
Auditory processing, learning, and language disorders with auditory
middle latency response, 150–151
Auditory steady-state response (ASSR), 135
Auditory support through auditory demand, 270
Auditory-temporal processing hypothesis of RI, 165–166
Auditory-Verbal Education (AVEd), 290t
Auditory-Verbal Therapy (AVT), 290t
Autism spectrum disorder and clinical applications
of ALR, 155
of P300, 160
Autism spectrum disorder (ASD) hearing evaluation, 94–95
Autoimmune inner ear disorder, (AIED), 22
Autosomal dominant inheritance, 30–31, 31f
Autosomal recessive inheritance, 29–30, 30f
AVEd. See Auditory-Verbal Education (AVEd)
AVT. See Auditory-Verbal Therapy (AVT)
Awareness or detection thresholds, 99
B
Basics of genetics, 28–32
inheritance patterns, 29–32, 30f, 31f
autosomal dominant inheritance, 30–31, 31f
autosomal recessive inheritance, 29–30, 30f
mitochondrial inheritance, 31–32
mosaicism, 32
x-linked inheritance, 31
protein synthesis, 29
Behavioral assessment of APDs, 178
binaural interaction tests, 178–179
dichotic listening tests, 178
localization and lateralization tests, 178
monaural low-redundancy tests, 178
temporal processing tests, 178
Behavioral audiologic tests and evaluation of hearing, 66
Behavioral evaluation of hearing, 75–89
behavioral observation audiometry (BOA), 76–79
candidates for BOA, 76
comfort using, 79
objectivity addition to tests, 77–81, 78b
objects of observation, 77
observation of sucking response, 77
parental role, 77
positioning of infant, 77, 77f
sucking behavior as response to sound stimulus, 77
threshold comparison, 79–81, 79f, 80f
cognitive age assessment, 76
conditioned play audiometry (CPA), 83–85
training a child for, 84
training the task, 84–85, 85b
diagnostic audiologic evaluation, 76
rationale for, 75
test protocols for behavioral evaluation, 86–88
auditory assistant, role of, 87
parents in test room, 88
soundfield, earphone, and bone conduction testing, 85–86, 85f
testing children with hearing loss, 87
test order, 86
test room setup, 87
test stimuli presentation, 87, 87f
test stimulus selection, 86
testing children with hearing loss, 87
uncooperative child, 88
visual reinforcement audiometry (VRA), 79, 81–83
computer-assisted reinforcement, 84
Conditioned Orientation Reex (COR), compared, 81
distractors, 83
positioning, 82, 82f
training and conditioning response, 83, 83b
visual reinforcers, 81–82, 81
Behavioral observation audiometry (BOA), 76–79
audiology assistant role in, 132
candidates for BOA, 76
comfort using BOA, 79
objectivity addition to BOA tests, 77–81, 78b
objects of observation, BOA, 77
observation of sucking response, BOA, 77
parental role, BOA, 78
positioning of infant, BOA, 77, 77f
sucking behavior as response to sound stimulus, BOA, 77
threshold comparison, 79–81, 79f, 80f
Behavioral observation red ags, 268–269
Behavioral testing. See Behavioral evaluation
Benefits, evaluation of genetic cause of hearing loss, 28
genotype, 29
medical plan management, 28
phenotype, 28
understanding chance of recurrence, 28
BiBi. See Bilingual-Bimodal (BiBi)
Bilingual-Bimodal (BiBi), 290t
Bilingualism, 360–362
bimodal bilingual children, 361–363
unimodal bilingual children, 361
Bimodal bilingual children, 361–363
Binaural interaction tests for APDs, 178–179
BOA. See Behavioral observation audiometry (BOA)
BOR syndrome, 34
Bullying of teens with hearing loss, 375
C
Calibration methods for OAE tests, 127
campUs for teens with hearing loss, 378–379, 378f
Candidates for BOA, 76
Carrier phrase use of speech perception testing, 102
CASE. See Conceptually Accurate Signed English (CASE)
Case examples of collaborative management, 284–285
Case history collection, 68–69, 70t
Case manager, 283–284
400
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