March-April - Alexander Graham Bell Association

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tips for parENTsThings the Mother of a Child withHearing Loss Wishes People KnewBy Catherine Fries VaughnIdon’t like the word disability. I’drather use any other word that applies.I tell my 10-year-old that she is different.I tell her that we’re all different.I’m short. Some people are tall. Wecome in all colors, shapes and sizes. I tellmy child that she has a “physical challenge.”Most of us have some sort of physicalchallenge to address. Our daughter,Lily, has bilateral cookie bite hearing loss.She can hear, but she misses out on midrangefrequencies where speech occurs.Lily was adopted from GuanxiProvince in China. She was 15 months oldwhen we traveled to China to adopt herand, at the time, we did not realize thatshe had hearing loss. Despite all of ourresearch prior to adopting, my husbandand I were not aware that a hearing testshould be administered as soon as wereturned to the states. Although we tookLily to wonderful pediatricians, a hearingtest was not immediately performed.My husband and I would like to stressthat parents should have their children’shearing tested as soon as they return fromadopting in another country.Lily picked up English very quickly,but a couple of years later we realized shewas not always responding when spokento. Since our daughter had chroniccongestion and enlarged tonsils, thedoctors surmised that the tonsils might bepressing on the Eustachian tubes and causingloss of hearing. After a tonsillectomy,our daughter was not sick as much, but itbecame evident that she had permanenthearing loss. We turned to The Children’sHearing Institute in Manhattan for help.Lily was diagnosed at age 4 and wearsbilateral hearing aids.The following are things that we wishpeople knew about hearing loss:Hearing loss affects the wholeperson. My husband and I stronglyrecommend a whole-child approach. TheChildren’s Hearing Institute offers thiskind of comprehensive mode of care. TheInstitute has helped us not only with audiology,but also with speech therapy as wellas assistance with Lily’s educational andemotional needs. My husband and I tryto teach our daughter not to focus on theloss, but we also realize the importance ofaccepting the loss, and even grieving thatloss, so that she can move forward andgrow into a proud woman who happens tohave hearing loss.My daughter hears, but she oftendoes not overhear. I wish that peoplecould really understand the informationthat is gleaned from overhearing otherstalk. We could then put ourselves in theshoes of people with hearing loss andimagine what it would be like for them.Sometimes people address Lily, and shedoesn’t answer them. People think she isignoring them, and I know that she simplydidn’t hear them.Speaking in a loud voice doesn’talways help. Well-meaning people are notalways aware that speaking louder is nothelpful, but looking directly at someonewho is deaf or hard of hearing may be betterfor communication. It hurts my daughter’sears when someone raises their voice.Help children find their voice. Lilyhas been working on finding her ownvoice, and she has been speaking up morewhen she doesn’t understand people. It’sa process. I advocate for my daughter, butmore importantly, I am teaching her toadvocate for herself.When her hearing loss was first diagnosed,Lily was reluctant to let teachersand friends know that she didn’t hearLily Vaughn at the 2011 Walk4Hearing in NewYork Citythem. As time goes by, she feels more comfortablesaying “I didn’t hear you,” ratherthan “What?” or “Huh?”. This helps othersrealize that Lily was paying attention tothem, but she didn’t hear them.In previous years, Lily was getting goodgrades, but she was often confused abouther assignments. Even though the assignmentwas written on the board, I believeLily was not hearing the details. This year,Lily speaks up more when she doesn’tunderstand an assignment. She tells momand dad when she is having a problem, orshe calls a friend for clarification. I havestarted suggesting to Lily’s teachers to seather close to the assignment board so thatshe can hear any explanation the teachermight give.Lily studies Kung Fu at EdgewaterKung Fu in New Jersey. She is part of aleadership training program taught byGeoff Vaughn34 VOLTA VOICES • MARCH/APRIL 2013
Sifu Karl Romain. In addition to theirphysical training, the children learn toovercome fear of speaking in front of agroup. Recently, Lily was asked to read abrief essay in front of her class and take afew questions. Without looking to me forhelp, Lily was able to politely let the otherchildren know when she couldn’t heartheir question, and she moved right on. Iwas very happy to see this growth in Lily’sconfidence. Lily has been fortunate to finda sport that she feels she can excel at underthe guidance of caring instructors. Thishas helped her to gain confidence and toadvocate for herself.Networking with parents can bea great comfort. Meeting parents ofother children with hearing loss can be agreat comfort for both parent and child.Along the way, Lily has made friendswith another child who also has bilateralhearing loss. Their friendship has helped tosustain them as they navigate this tenderage in their lives. They share a special bondbecause they can relate to what the otherone is going through. They laugh. Theytalk. They are just kids together. Hearingloss is not the focus of their conversations.Lively discussions of Harry Potter are theorder of the day.Mainstream educators need to betrained and informed about childrenwho are deaf and hard of hearing.I would like to see more seminars andprograms that would help teachers gainknowledge about the particular journey ofour children in the classroom. I would alsolike to see substitute teachers receive moretraining in hearing loss and other types ofdisabilities so that children don’t lose valuableclass time when their regular teacheris absent. I don’t know how to implementthese programs in the school system, butthis is on my wish list.Know the law and remain calm. Irecommend familiarizing yourself with theIndividuals with Disabilities EducationAct (IDEA). When you are knowledgeableabout the law and your parental rights,you will be able to advocate for yourchild. When discussing an IndividualizedEducation Program (IEP) for your child,take your time to examine it carefully, askquestions, and request meetings/teacherconferences in order to understand it fully.As parents, it is easy to become emotionalabout matters that concern yourchild. My husband and I have found thatit is important to remain calm in meetings.We realize that our administrators,teachers and other professionals have ourchild’s best interest at heart too, and weknow that working together as a team is inthe best interest of our child.Support from professionals who aredeaf or hard of hearing. My daughterwould like to see professionals who are deafand hard of hearing in the field of audiologyor who specialize in disorders of the ear,nose and throat. She feels that these professionalscan relate to what other patientswith hearing loss are going through. Mydaughter raises a valid point and she wouldlike to make her thoughts known.I wish that my daughter were writingthis herself. I hope that she will continueto confidently speak up for herself, and beproud of all that she is.A Listening and Spoken Language SchoolServices and Programs:• Newborn Hearing Evaluation Center• Parent-Infant Cottage• Early Childhood and Elementary Programs• Outdoor and Discovery classrooms• Music and Art classrooms• Speech Language Pathology• Audiology Center with five testing booths• Cochlear Implant Programming• Placement site for Graduate Program inDeaf Education and Hearing Sciencethough UTHSCSASunshine Cottage provides the very best earlyidentification and intervention services for infants andchildren with hearing loss.The day-school program offers a comprehensiveeducational environment for children, preschoolthrough fifth grade, with state-of-the-art technologytaught by master-level educators.(210) 824-0579603 E. Hildebrand Ave.San Antonio, Texas 78212www.sunshinecottage.orgSunshine Cottage, a listening and spoken language school, is accredited by the Southern <strong>Association</strong> of Colleges and Schools Council on Accreditation and School Improvement,OPTIONschools International, and is a Texas Education Agency approved non-public school. We accept students of any race, color, national or ethnic origin.New 2012 BW ad.indd 19/14/2012 2:51:27 PMVOLTA VOICES • MARCH/APRIL 2013 35
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Page 6 and 7: VOICES FROM AG BELLtremendous thera
Page 9 and 10: Hearing loss can’t keep meout of
Page 11 and 12: BITESCOMPILED by:in another way. Th
Page 13 and 14: Electronics’ present and future p
Page 15 and 16: Terrie KellmeyerWith the nation’s
Page 17 and 18: ihear ®online therapyRobert RockDo
Page 19 and 20: Terrie KellmeyerDonna Sorkin dances
Page 21 and 22: David and Gabriel Brainsonat the Vo
Page 23 and 24: Federal Communications Commissionet
Page 25 and 26: founding of the Coalition of Organi
Page 27 and 28: Laura Van Antwerp in a telepractice
Page 29 and 30: Hear theDifferenceAnne FlemingTodd
Page 31 and 32: involucrarse más activamente en la
Page 33 and 34: Anne Flemingrrollo sus propios enfo
Page 35: "With my cochlearimplant, I was abl
Page 39 and 40: AG BellListeningand SpokenLanguageS
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Page 49 and 50: DIRECTORY of ServicesINTernATIONAL
Page 51 and 52: answering the callfor transformativ

March-April - Alexander Graham Bell Association

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