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As a parent, I had high expectations for each of my children, even whilethey were in my womb. When Courtney was 9 months old, theseexpectations briefly shattered. It was September 13, 2001, two daysafter 9/11. My husband and I traveled into Boston for Courtney’ssedated Auditory Brainstem Response (ABR) appointment. I had beenconcerned about her hearing and requested a hearing test. The initialassessment had been done locally and although she had no otoacousticemissions (i.e., her cochlea emitted no soft sound as is typical for thosewho hear normally), those who tested Courtney reported that she wasresponding to speech at loud conversational levels. With thisconflicting data, they suggested we have her sedated in order to have amore comprehensive hearing test—an ABR, which measures how wellsound travels along the nerves that conduct the sound to the brain.

After waiting what seemed like several hours, my husband and I were brought intoa small room with our screaming, groggy infant, a nurse, and an audiologist. Courtneywanted to nurse. She hadn’t eaten in many hours due to the sedation, but she had towait another moment. My husband, Ted, and I wanted to know the results of thetesting. The audiologist gave us the news: Courtney didn’t just have a hearing loss;she was deaf. The conversation continued and much more was said, but I heardnothing other than “deaf” and the sound of crying—crying from Courtney, whoneeded to nurse, and crying from myself. I could not stop. I needed to get out of thatroom. I needed to nurse my daughter, and I needed to get back home. Both myhusband and I wanted the comfort and peace that only our home and family couldprovide.

Amie A. Stelmack,MED, earned herbachelor’s degree in earlychildhood education andgeography from WorcesterState College, inWorcester, Massachusettes,and her master’s degree indeaf education from SmithCollege, in Northampton,Massachusettes. Themother of three daughters,Stelmack resides in theAtlanta, Georgia, area andworks full time as a teacherof deaf students in an oralschool. She welcomesquestions and commentsabout this article atwnpooh27@aol.com.

Courtney Stelmackis 13 years old and attendsa public middle schoolwith a seventh grade classof approximately 500students. She enjoyswriting and reading anddislikes math and physicalexercise.

Photos courtesy of Amie A. Stelmack

Raising Courtney Just Like Her Sisters:Forging HighExpectations

By Amie A. Stelmack

2014 ODYSSEY

For nine months, Courtney had been treated like ahearing child, expected to enjoy the stories we read andthe songs we sang. She was expected to be comforted byour familiar voices, expected to hear her sisters when theycame home from school. Now we knew differently, andwe believed we had denied our daughter access tolanguage. Guilt overwhelmed us—and guilt quicklyspurred us into action. The only language we knewwithout a doubt she could learn and understand was signlanguage. Our family would learn immediately, and sowould Courtney. Sign language began in our home thevery next day.

As one week led to the next, we began hearingfrightening things about children who were deaf. Manypeople—including professionals—told us about shockingstatistics. The statistics indicated that deaf children oftendidn’t read beyond upper elementary level. They seemedto suggest that this would become our expectation forCourtney. Professionals told us that even with hearingaids our precious baby girl would never have access to

spoken English. An audiologist briefly mentioned adevice called a cochlear implant, but this seemed strangeto us: it would require surgery, drilling into her skull; itdidn’t guarantee she would speak; and it would changeher hearing to a mechanical process controlled by acomputer which was programmed by an audiologist.Further, even if we wanted to explore a cochlear implant,Courtney was too young. Ted and I decided to devote ourenergy to things we could do right away. Our family andfriends rallied to support us, and anything we asked forwas immediately granted.

Meanwhile I obsessed about the reading prediction thatI felt had been made for my daughter. “Why?” I keptasking myself. If she were just deaf, why would she notread? What could be so detrimental? How is deafnessrelated to reading? As a family we went to the libraryevery other week and came home with literally no lessthan 30 books each time. We read at least 10 children’sbooks every day. Reading nurtures us. It is what feeds oursouls. It is our daily bread. Courtney’s soul could not be

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allowed to starve simply because shecould not hear. What a ridiculousthought! After several weeks offeeling devastated andoverwhelmed, my husband and Iand the rest of our family simplydecided we would not accept thestatistics—at least not as theyapplied to Courtney. If Erica andMonika, my older daughters, wouldread 10 stories a day, then Courtneymust need double. Courtney wouldread, just like her sisters. We wouldaccept nothing less.

Over the next month, wecontinued to seek assistance fromprofessionals. Hearing aids wereordered. Although the audiologistinitially believed that Courtney hadaccess to speech with the hearingaids, that opinion quickly changed.We invested in the best, but theydid not provide sufficient access tosound; hearing aids would not workfor Courtney. Early interventionspecialists came to our home and offered us one hour a week ofspeech-language therapy. One hour a week? It didn’t seem likeenough. If a child who is deaf is offered one hour a week ofservices, what is a child who has a mild hearing loss offered?We were told that one hour a week was the typicalrecommendation to start, and that more services were notalways better for the family and child. To me, this did not seemright. How was one hour a week of speech-language therapygoing to help her speak the same language as her family? Ithought this would consign Courtney, who was likely nevergoing to hear speech, to not being able to talk. I needed timewith expert professionals to learn; Courtney needed time formore therapy. I contacted the early intervention programdirector who reluctantly agreed to more time weekly with aspeech-language pathologist and promised to add weekly groupvisits from the professionals from school once we selected aschool for Courtney.

Ted and I reached out to professionals in special schools forchildren who are deaf. We felt that they would know best andprovide us with information to assist us on our new journey. Wevisited the special program nearest to us, and decided that thiswas where Courtney needed to be. We would travel to theprogram twice a week. Courtney would attend a parent-infantprogram for two hours each time. In addition, we, as parents,would participate in a parental support group once a week for90 minutes. Siblings were also sometimes allowed to come tothe groups, and the school offered free American Sign Language(ASL) classes one night a week for two hours. Further, we

learned about a family sign languageprogram offered by the state. We couldhave 20 weeks of ASL taught in ourhome. This service was free, and wecould invite family, friends, andcaregivers to attend at no cost.Although exhausted by the thought ofall these new weekly activities andlessons, we signed up for everythingthat was offered.

Courtney began signing almostimmediately. Her eyes would look atthings, then dart up toward us for theword. Courtney loved the speech-language pathologist who camebiweekly. At Courtney’s biweekly playgroup at the school for the deaf, shewatched her peers and seemed toabsorb everything. However, I still feltthat something wasn’t right. Duringone of our visits, I was explaining myconcerns to an audiologist when aparent overheard what I was sayingand told me about her daughter, whohad a condition called “auditory

neuropathy.” She suggested that we contact their audiologist atBoston Children’s Hospital. Although neither of us knew it atthe time, that conversation would change our lives.

Marilyn Neault, the audiologist at Boston Children’sHospital, was experienced, patient, loving, and kind. She sawus at night after a long day and explained not only the type ofhearing loss she believed Courtney had but also more aboutlanguage development, and she told us about cochlear implants.Marilyn scheduled an appointment for another ABR to confirmher suspicion. We left knowing three critical things: 1) wemust enjoy and love Courtney, 2) we must continue to provideher with language, and 3) we should never doubt ourselves asparents.

Courtney was finally diagnosed with auditory neuropathyand, at 22 months, she got her first cochlear implant. At thattime, Courtney’s ASL skills were age appropriate, bothreceptively and expressively. Although she made all kinds ofnoises with her voice, those sounds did not appear relevant tospeech. Courtney’s therapy increased once she was implanted.She joined another group at The Learning Center for the Deafin Framingham, Massachusetts. This group, exclusively focusedon children with cochlear implants, focused on learning tolisten. Her weekly therapy at home with the speech-languagepathologist changed to listening therapy and time spent on thisincreased as well. By this time, we, as a family, had completedour ASL program, and we all had basic skills. But nowCourtney began to talk. Almost as quickly as she had learned tosign, she was learning to speak. Slowly, she stopped using signs.

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2014 ODYSSEY

The road she was traveling was shifting, and as her parents wehad to continue to figure out what Courtney needed. Ourexpectations never changed—just the road along which wewould travel. We continued to explore and advocate for optionsto assist Courtney in reaching her full potential.

Three months before her fourth birthday, Courtney could usespeech, her cochlear implant, and lipreading to communicate.She entered the same private Montessori school as her sisters.When she was 8 years old, she began to advocate for a secondimplant. Now she wears two, and the second implant has madeanother substantial difference in her life. On the rare occasionwhen a battery dies and she has to function with only oneimplant, she is miserable. She has a friend with a cochlearimplant, and she says she doesn’t know how her friend manageswith one implant only.

Looking Back—Looking ForwardAlmost 13 years ago a miracle came into my life. That miraclechanged our family’s life and the lives of many others. WhenCourtney started the Montessori school, I returned to college tofinish my degree in early childhood education and to pursue amaster’s degree in deaf education at Smith College. I soughtthis field of education to assist other parents in helping theirchildren with hearing loss reach their full potential.

I realized my passion, and I am now a teacher of deaf andhard of hearing students. The students with whom I work areencouraged and pushed. They are challenged to be independent,to advocate, to listen, to be proud, to read, and to want to learn.Parents are expected to do their part and assist in theirchildren’s development as unique individuals. Working witheach family as a team, we create goals so that these childrenwith hearing loss will read on grade level and becomeacademically successful.

Professionals and parents should not accept that thedeplorable statistics involving deaf children and reading fitevery child or that these statistics are not subject to change.Parents should not lower their academic expectations due to adiagnosis of hearing loss. Children with hearing loss shouldnever be limited by expectations based on statistics garneredpreviously and from other children. Trust yourself as a parent.Love your child, keep your expectations high, and never giveup. Together, we will raise our children and change thestatistics for students who are deaf and hard of hearing.

The Extra Steps—Speaking OutBy Courtney Stelmack

When her mom asked her to write a short paragraph about herexpectations for herself, Courtney agreed and requested that a poemshe wrote recently during a 50-minute language arts period bepublished. The teacher asked Courtney to read the poem to hermainstream public school class, and it was selected by her teacher tobe displayed on the author’s tree. The poem has not been edited.

Hi, my name is Courtney. I am deaf, and I wear two cochlearimplants. I have very high expectations for myself—to alwaysdo my best, even when it gets tough, and to never give up onmy hopes and dreams. Life has always been challenging for mebecause, being deaf, I have to make some extra steps to get tosuccess. One of my biggest hopes is that I will one day becomea well-known author. I have always enjoyed reading andwriting. It has never been tough for me to understand lettersand words.

Recently, I wrote a poem for my seventh grade language artsclass on some things that are very difficult, e.g., bullying andsuicide. Don’t worry, the poem is not about my life but a sadreality of how many teens feel today.

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The GirlBy Courtney Stelmack

The girl with a broken smileShe’s had it for a whileHer eyes, exotic as a rare and wilting jungle flowerHer personality was as radiant as the sunHer mind was dark and drearyThey judged her on her ethnicityThey did not bluffThey were not afraid to specify every flaw she hadThey played tough, never afraidThey looked at her with a menacing scowlShe buckled under the ferocity of the words they saidHer initial reaction was to back down, and not defend herselfHer lip would quiver, her eyes red; about to cryNo one could tell that deep inside, she was brokenThey all thought she was outspokenShe acted okay with convictionTruly, she was slowly withering awayShe trudged to school every day with a heavy pain in her heartShe decided she didn’t want to stayThe blade and her skin merged togetherHer life ended that dayThey all pretended to careThey didn’t bother to shed a tearThey said they wished she was hereIt was nothing but a convoluted lieNow, the girl is free from her worries in the skyShe doesn’t have to deal with her chaotic thoughtsShe inevitability got rid of the chance of her life evergetting better