do you hear what i hear? : a story about hearing loss

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Do You Hear what I Hear? A Story about Hearing Loss In Three Parts

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Do You

Hear what I

Hear? A Story about Hearing Loss

In Three Parts

Developed for EDU3248 Diverse Learners

Fall 2014

Interviewee: Sara Spoors Lundquist

Interviewer: Christal Ruppert

References included on the back page

Do You Hear

what I Hear? A Story in Three Parts

Based on a True Story

Written by Christal Ruppert

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.