do you hear what i hear? : a story about hearing loss
TRANSCRIPT
Developed for EDU3248 Diverse Learners
Fall 2014
Interviewee: Sara Spoors Lundquist
Interviewer: Christal Ruppert
References included on the back page
Part 1: A Story about a Girl Once upon a time, there was a girl named Sara. She
lived with her mom, her dad, and her little sister in the suburb of
Stillwater, Minnesota. She liked to swim in the summer and ice
skate in the winter, and she liked to make arts and crafts all year
long, just like other girls her age.
But by the time Sara was in elementary school, Sara and her
family knew there was something different about her. Sara had
several ear infections and had had 13 pairs of tubes put in her
ears to help drain the infections by the time she was in middle
school. Those tubes had led to several surgeries on Sara’s ears. By
the time she was in seventh grade, Sara was diagnosed with
hearing loss.
Hearing loss made life difficult for Sara in
elementary and middle school.
She couldn’t hear her friends whisper secrets in her
ear.
She couldn’t hear her shoulder partner when they
read together in class.
She couldn’t hear her teacher when her teacher
was writing on the board and Sara couldn’t read
her lips.
The library, where kids are supposed to be
quiet, was the worst place in the school for
young Sara. It was always hard to hear
people whisper instructions.
One day, Sara asked her librarian to repeat
some instructions because Sara hadn’t heard.
The librarian got upset and sent Sara to the
hallway for talking too loudly.
Sara had to write the librarian an apology for
not being a good listener before she could
come back to the library again.
Conductive hearing loss
This hearing loss is classified
as damage to the middle
ear, which hinders the
conduction of sound from
the outer ear to the
eardrum. This can be
caused by a variety of
things, from fluid in the ears
from colds or ear infections
to a perforated eardrum to
malformation of any given
part of the ear. Sara’s
hearing loss was
conductive.
Sensorineural hearing
loss
This type of hearing
loss is caused by
damage to the
inner ear “or to the
nerve pathways
from the inner ear
to the
brain” (ASHA
2014). This can be
hereditary or can be
caused by illness or
trauma.
Types of Hearing Loss Sara first suspected her hearing loss while attending a cousin’s birthday party; she couldn’t hear the other kids
or the movie in the background. What her sister and cousin thought was funny, Sara found terrifying. She was
sent to an audiologist for the first time when she was in seventh grade and failed the hearing test at school.
Even then, the only solutions given to her were to sit in the front of the class and pay attention as best she
could. Hearing aids were suggested to her as a girl and again in college, but both times the cost was simply out
of budget.
The hearing tests given in public schools are technically screenings. According to the American Speech-
Language Hearing Association, most hospitals today screen newborn infants shortly after birth. School-age
children are still screened throughout their school years, especially elementary years, though studies have
indicated that screenings do a poor job diagnosing sensorineural hearing loss (Dodd-Murphy, 2014). Adults can
be screened at clinics or a health fairs.
An audiology exam goes more in depth than a screening and can involve several different kinds of tests. The
American Speech-Language Hearing Association list a few of them as “pure-tone testing, speech testing, tests of
the middle ear, Auditory Brainstem Response, and Otoacoustic Emissions” (2014). Later, Sara would find that
her hearing loss fell into the range of speech testing, and that’s why she had trouble hearing her friends,
teachers, librarians, and others.
Sara’s hearing loss was conductive and was probably caused by a number of things, like
her numerous ear infections and ear surgeries that caused scarring on her middle
ear. She was also part of the swim team at school; after her hearing loss
diagnosis in middle school, Sara was encouraged to quit the swim team to
prevent additional damage to her middle ear. (Swimmer’s ear is listed on
ASHA’s list of possible causes for conductive hearing loss.) Sara’s
elementary school hearing loss was at a mild level, meaning she
couldn’t hear between 26-40 decibels of sound and mostly struggled
when there was background noise present.
Hearing loss in decibels is usually measured on an audiogram through
a pure-tone sound test. It provides a visual of an individual’s hearing
loss by illustrating the type and degree of hearing loss (conductive,
sensorineural; normal, slight, etc.) through a graph of what the individual
can hear in decibels (intensity/loudness) and in Hertz (frequency/pitch)
(ASHA 2014).
Degrees of Hearing Loss
Normal (loss range of –10-15 dB)
Slight (loss range of 16-25 dB)
Mild (loss range of 26-40 dB)
Moderate (loss range of 41-55 dB)
Moderately severe (loss range of 56-
70 dB)
Severe (loss range of 71-90 dB)
Profound (loss range of 91+)
(ASHA, 1981)
When Sara was in diagnosed with mild conductive hearing loss in the seventh grade, she was
given limited options. Hearing aids were too expensive, so Sara was told to make due with the
hearing she had and to “pay attention” in classes. Because of Sara’s late diagnosis, it’s
difficult to tell whether Sara’s elementary school and middle school years would have been
different had they caught the hearing loss earlier. All things considered, probably not—
especially with a mild loss like Sara’s. “FM systems were unheard of,” she reported. “You
were either fine at a regular school or [. . .] you went to the Metro Deaf School. There was
no in between.”
The Metro Deaf School, located in St. Paul, still serves deaf, deaf-blind, and hard-of-hearing
students in a free preschool-12 charter setting. Their mission statement reads, “Metro Deaf
School promotes academic excellence for Deaf and Hard of Hearing students using an ASL/
English bilingual approach. Our primary purpose is to empower our students to develop the
skills and knowledge to succeed as global citizens” (2014). The resources available through this
school in particular and other venues for the deaf and hard of hearing are vast.
But for kids like Sara, with only mild loss and few funds for hearing aids, there are more options than there
used to be. For students whose hearing loss is caught at an early age, there is hope for reading scores and other areas of academia. Wang et al
(2013) conducted a study based on the statistic that reading scores for d/Deaf or hard of hearing students vary but never exceed fourth grade
reading level by the time students graduated high school. The study by Wang et al found that early intervention with a phonics program
(supplemented with visuals) showed a significant increase in reading scores. Another study by Nelson et al (2013) reported positive results in
preschool students’ “academic performance, speech and language development, behavior, and attention in the classroom” after the
implementation of frequency modulation (FM) systems in the classroom.
Speaker systems in the classroom would have helped a young Sara, with conductive hearing loss mostly in the realm of speech: “Even with a mild
loss [. . .] there is so much you can miss with the teacher talking in a class or when a teacher or professor has their back turned to a board or, in
my day, an overhead projector. This was always a problem for me.” Research and awareness regarding hearing loss has progressed, as well. Sara,
as a shy student, was hesitant to talk about her hearing loss for several years, but having a teacher on her side would have been a great help.
“Schools are so much different
now. I don’t know if teachers
even knew what effect a mild or
moderate loss had on a child’s
education back when I was a
child. … You were either fine at a
regular school or you were really
bad off or deaf and then you
went to the Metro Deaf School.
There was no in between.”
-Sara Spoors Lundquist
School Interventions: Then and Now
Part 2: The Sketchy Seas of Adolescence
By the time Sara was in high
school, she was learning to adapt
to her hearing loss. Money was
tight, and her parents couldn’t
afford either hearing aids or braces
for Sara or her sister. So Sara had to
make do with reading lips and
trying to listen as best she could.
As a shy student, Sara had the
most trouble hearing with lots of
background noise or several
people contributing to a
conversation. It was hard to
distinguish voices amid all the
noise. Sara didn’t like to talk about
her hearing loss, so most of high
school she quietly made do.
The real trouble came when Sara went to college.
At the University of Wisconsin at
River Falls, Sara majored in what
interested her most:
Communicative Disorders.
At first, Sara tried the same
tactics that she’d used all her
life: making do and trying to
read lips. As a young college
student, she definitely didn’t
have the funds for hearing aids.
But when her first semester’s
grades rolled in, Sara found
herself staring at a D, a dark
spot on her A Honor Roll report
card. The class had been all
lecture and note-taking — no
visual aids, no printed notes, no
books, and no help for Sara.
After that, Sara learned that if
she was going to make it in
college, she’d have to speak
up for herself.
“Sounds I Don’t
Miss Hearing”
Because Sara was a very shy student, she didn’t tell many people about her hearing loss. She had a few close friends within a group, and she
made do with other groups of people. With the exception of her frightening experience at her cousin’s birthday party (which her sister and
cousin found funny), Sara was never bullied or teased for her hearing loss. It is possible, however, that other peers noticed when games of
“Telephone” were messed up whenever the whispered message got to Sara.
Sara’s situation can be considered unique, as deaf and hard of hearing students “experience bullying rates at 2-3 times higher than those
reported by hearing students” (Weiner et al, 2013). In a study by Weiner et al, deaf and hard of hearing students also reported teacher
intervention occurring less frequently than hearing students. This kind of discrepancy is harmful to a school community as a whole; as it
affects students’ school climate, it also has a damaging potential to affect student learning. Education theory has been cited for years about
the need for safe learning environments in order to learn, and deaf and hard of hearing students are no exception to this.
Sara kept her hearing loss under wraps through high school; in college, too, she told only a limited number of people. Her roommate and
audiology professor were among the few who heard Sara’s story and were then aware of possible difficulties and needs.
Transitioning Into Advocacy
When she was diagnosed, Sara’s hearing loss was mild enough that she did not qualify for an IEP or any specific
services from the school. As a shy student, Sara didn’t like to talk about it anyway. She had to learn the hard way
how to advocate for herself when she nearly failed a lecture class in college. With no support materials (notes,
handouts, books, etc.) Sara had to watch the speaker in order to understand the content being taught – but that
didn’t help her study later on. Since her major was communicative disorders (which includes audiology!) Sara
had to make arrangements with her professors in order to be successful. With a little help from her roommate
and some cooperative professors, Sara received study tools to help her through college.
The Individuals with Disabilities Education Act (IDEA) has experiences numerous revisions since its creation in
1975. Its current policy on hearing loss includes measures for hearing loss to be identified in children as soon as
possible and provide adaptive technology, home and family support, and other accommodations for the student’s
education (US Department of Education). Recent focus for IDEA has been extending services to the educational
services of students before school age, but another important part of IDEA is transition services that help
students meet the objective of the Americans with Disabilities Act (ADA): “The ADA is about enabling people
with disabilities to take charge of their lives and join the American
mainstream” (National Council on Disability 2010). In many cases,
transition services begin when the student is 16 years old, and they are
aimed at the student’s success post-high school. Students are often
encouraged to participate in their own IEP meetings, sometimes run
them, and to advocate for themselves in high school and beyond.
Not only are students encouraged to advocate for themselves, but some
IEP transition goals and objectives require them to do so (Anderson
2012). Other transitional goals for students with hearing loss include
community involvement, ability to live on one’s own, and pursuit of
future goals (college, career, etc.).
Sara learned how to advocate for herself, and she met her future career
goals without much problem. Her educational career could have gone
smoother with some help, but it is often the hardest lessons that stay
with one the longest, and the case remains true for Sara still today.
Part 3: Breaking the Cycle
Sara now lives in a small town in West Central Minnesota
with her husband, Chad, and daughter and son. She’s
been a substitute teacher with the local school district
for 7 years — which caused new levels of challenge for
Sara when her hearing dropped again about a year
ago.
Sara started noticing that she couldn’t hear the
television, or the telephone, or her children waking up in
the morning. Managing a classroom of students is even
more difficult when you can’t hear them. Sara’s
hearing loss had reached a moderate to
severe level. Something needed to change.
It was at this point that Sara realized she
had to come to terms with her hearing
loss, a secret she’d held for so long.
Sara now benefits from the use of
hearing aids and other technology
for the hearing impaired.
Things got more complicated when Sara’s son
Henry, now 6, was diagnosed at age 2 with mild
hearing loss. He, like Sara, experienced some ear
infection troubles, but at age 2 required attention
for glue ear. It was this that prompted an official
diagnosis.
Thanks to early medical attention and a
supportive IEP team in the school, Henry will not
have to repeat the same frustrating experience
of hearing loss Sara went through.
Henry now has his hearing checked
twice each year by an audiologist to
ensure he receives proper treatment
for his hearing loss. His teachers at
school, including the Deaf and Hard
of Hearing specialist, know to make
eye contact with Henry when they
are speaking with him.
Connecting the Dots When Sara’s hearing dropped again, she returned to the audiologist. She
learned that the mild conductive (middle ear) hearing loss of her
childhood had worsened to include sensorineural loss, which affects the
inner ear. This type of hearing loss is caused by trauma or damage, or
can be hereditary. Since hearing loss runs in Sara’s family, this was
not too far out of plausibility. Sara’s hearing loss is now in the severe
range, meaning she cannot hear in the range of 71-90 decibels.
Henry’s diagnosis of mild hearing loss took place before Sara’s
hearing dropped again, but because of Sara’s elementary school
experiences, along with a few other health issues for Henry, the
family has kept a close eye on Henry’s hearing and health. Given the
genetic nature of sensorineural hearing loss, there is a chance Henry’s
hearing might suffer significant loss, as Sara’s did.
Luckily, should Henry’s hearing every dip that far into the deficit, the
Lundquist family has plenty of resources to help him out. Other than
Henry’s IEP and school accommodations, Sara is benefitting from
several technological tools that help her at home, like technology
that streams movie from the TV straight to Sara’s hearing aids.
She also uses a battery-operated stand for her cell phone,
which flashes brightly when the phone has rung or vibrated,
perhaps without Sara’s knowledge. There are numerous
adaptive technologies available, like FM systems, infrared
systems, and one-to-one communicators. Some commonly
available adaptive technologies are as simple as closed
captioning on the television (ASHA, 2014). Sara’s hearing aids
are her biggest adaptive technology, and this ever advancing
world of technology, her hearing aids have the capability to run
about ten adaptive technology programs to help with everyday life.
Henry’s hearing is right on the
line, so for now he doesn’t use
hearing aids. His IEP currently
grants the use of an FM system
in his classroom. Should
Henry’s hearing change at all,
hearing aids will be in order.
What is glue ear?
Glue ear, the condition Henry got when he was
2, is a fairly common childhood condition in
which the middle ear becomes clogged with
thick, glue-like fluid. The buildup does not allow
the eardrum to vibrate the way it is made to do,
and thus blocks hearing. The National Health
Service reports that 8 in 10 kids will have had
glue ear by the time they are 10 years old.
After Henry got the glue-like fluid scraped out,
he had tubes put in his ears. At his next hearing
test, he was found to have mild hearing loss.
Thanks to his routine check-ups, Henry’s hearing
has stayed fairly constant at mild and hasn’t
gotten much worse.
Useful Resources for Hearing
Loss / Deaf / Hard of Hearing
Minnesota Hands and
Voices
Minnesota Hands and Voices is a
parent resource for deaf or hard of
hearing children that provides
information and support. Sara and her
family have benefitted by programs
hosted by MN Hands and voices
through Henry’s hearing loss.
Say What Club
The Say What Club is a global forum for
people with hearing loss. Their website
provides connecting points with
people all over the world through
forums for people to connect and
support one another — and no
hearing aids required to hear the
conversation.
PACER
PACER is a Minnesota-based
advocate for children with all
disabilities and provides resources
from programs to an adaptive
technology lending library.
Finding Her Voice After Sara’s hearing dropped again significantly as an adult, Sara knew something had
to change. This part of herself she’d kept quiet for most of her life was going to be hard
to hide now that the bulk of her hearing was gone.
With the help of some good friends and a lot of prayer, Sara began a blog, her own little
platform for her to share about her family, her hopes, her dreams, her struggles, and
her hearing loss. She began to realize that speaking up about her hearing deficit was
met with a warmer reception than she had anticipated. In place of isolation, she found
support. Where she had struggled for so long, Sara found help.
Shortly after she started writing online, her blog was discovered by the Say What Club,
a global forum for people with hearing loss and late-acquired deafness. They invited
Sara to be a guest author on their blog from time to time. Her posts are shared with a
much wider audience than Sara could have ever planned, and her words have been a
source of encouragement and advocacy for many people who experience the same
struggles with hearing loss that Sara deals with on a daily basis.
As an individual with hearing loss as well as a mother with a
son with hearing loss, Sara has decided to step up and
do what she can to fight for rights and break down
stereotypes about hearing loss. Her work in the
field of hearing loss advocacy was recognized by
HearStrong, a non-profit branch out of Starkey
Hearing Foundation. As part of the award, Sara
was given custom-fit hearing aids and some of
the adaptive technology that benefits her life
every day.
Having stepped into the world and tried out her
voice, Sara is determined to keep working for
hearing loss awareness and advocacy — for her son,
and for every young child like herself.
Degrees of Hearing Loss
Normal (loss range of –10-15 dB)
Slight (loss range of 16-25 dB)
Mild (loss range of 26-40 dB)
Moderate (loss range of 41-55 dB)
Moderately severe (loss range of 56-
70 dB)
Severe (loss range of 71-90 dB)
Profound (loss range of 91+)
(ASHA, 1981)
References
American Speech-Language Hearing Association. (2014). Hearing and balance. Retrieved from http://www.asha.org/
public/hearing/.
Dodd-Murphy, J., Murphy, W., & Bess, F. H. (2014). Accuracy of School Screenings in the Identification of Minimal
Sensorineural Hearing Loss. American Journal Of Audiology, 23365-373. doi:10.1044/2014_AJA-14-0014
Dowdle, M. M. (2012, September 4). Caitlin Dyer. [Image]. Retrieved from http://www.artagem.com/2012/09/04//.
Equality of Opportunity: The Making of the Americans with Disabilities Act. (2010, July 26). Retrieved December 18, 2014,
from http://www.ncd.gov/publications/1997/
equality_of_Opportunity_The_Making_of_the_Americans_with_Disabilities_Act
IDEA - Building The Legacy of IDEA 2004. (n.d.). Retrieved December 18, 2014, from http://idea.ed.gov/explore/view/
p/,root,regs,300,A,300%2E34,
Metro Deaf School. (2014). Mission. Retrieved from http://mdsmn.org/about-us/mission/.
National Health Service. (2014). Glue ear. Retrieved from http://www.nhs.uk/conditions/glue-ear/Pages/Introduction.aspx
Nelson, L. H., Poole, B., Muñoz, K., Nippold, M., & Pratt, S. (2013). Preschool teachers' perception and use of hearing assistive
technology in educational settings. Language, Speech & Hearing Services In Schools, 44(3), 239-251.
doi:10.1044/0161-1461(2013/12-0038)
Ye, W., Spychala, H., Harris, R. S., & Oetting, T. L. (2013). The effectiveness of a phonics-based early intervention for deaf
and hard of hearing preschool children and its possible impact on reading skills in elementary school: A case study.
American Annals Of The Deaf, 158(2), 107-120.
Weiner, M. T., Day, S. J., & Galvan, D. (2013). Deaf and hard of hearing students' perspectives on bullying and school
climate. American Annals Of The Deaf, 158(3), 334-343.
Anderson, K. (2012, December 27). Transition planning for adulthood. Success For Kids With Hearing Loss. Retrieved
December 18, 2014, from http://successforkidswithhearingloss.com/transition.
Christal Ruppert is a senior Communication Arts and Literature Education major at University of
Northwestern, St. Paul, with the privilege of knowing the Lundquist family for several years and
photographing their children through the ages. As a future educator, she enjoyed learning about
hearing loss through Sara’s story. She also enjoyed pulling in her love of graphic design in making this
book.
Sara Spoors Lundquist hopes to return to her college degree and passion for
communicative disorders. For now, she lives in the tiny town of Benson, MN, with her husband
and two children, Greta and Henry. Her hobbies still include arts and crafts, though she’s added
cheering for her kids, blogging, and advocating for hearing loss patients to her list. In June of
2014, Sara received the HearStrong Award for her work. She comments about life and hearing
loss on her blog at Musings of a Momma and also occasionally blogs for the SayWhatClub, a
global forum for people with hearing loss. Her writing has also been published in Best Life
Ministries’ magazine, Your Best.