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Virginia's Resource Guide Booklet Virginia’s Resource Guide for Families of Children with Hearing Loss The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart. | Helen Keller © 2016 Welcome Virginia’s Resource Guide for Families of Children with Hearing Loss is a product of the Center for Family Involvement at the Congratulations for taking a few moments to look in the revised Parent Resource Guide! If you have just Partnership for People with Disabilities, located at Virginia Commonwealth University. Funding for development and distribution is Eric, Age 4 Eric, Age 24 recently found out about your child’s hearing loss or know of a child that has been recently diagnosed supported in part by the Virginia Department of Health and by the Maternal Child Health Bureau, Health Resources and Services with a hearing loss you are on the right track to finding more information for Virginia residents. Administration, U.S. Department of Health and Human Services. This year’s revision could not have been possible with the support of many special people especially Dr. Lori Bobsin, Dr. Christine Knowledge is power! Being informed in the area of deafness/hard of hearing and Eubanks, Jessica Fleenor, Jessica Nicholson, Dr. Ashleigh Greenwood, Gayla Guignard, Dr. Thomas Holcomb, Ann Hughes, Janet teaching your child or children with hearing losses to be independent is important. Knust, Mary Lib Morgan, Pam Noakes, Lisa Powely, Dr. Marilyn Sass-Lehrer, Eric Schmalz, Kathleen Watts, and Dana Yarbrough. Being an advocate is truly a gift you can give them. Special thanks from my heart for all of the families with deaf and hard-of-hearing children who are also part of this book. As some of you know, I have a severe to profound hearing loss since birth and have worn hearing aids since I was three years old. You may also know that my son, Eric, was identified with a severe to profound hearing loss shortly after his first birthday. He was fitted with hearing aids just before his second birthday. It was a lot of work for Eric but his work has paid off for him in his professional career. My hope is that you will find something in this resource guide that will help you and your family. Please continue to seek all of the resources that you can find – you will be glad that you did! Technology is constantly changing, however, the importance of communicating with your child and allowing access to language cannot be overlooked. The communication section has been updated to help enhance the lifelong communication and language process. — Irene Schmalz July 2016 2 | Virginia’s Resource Guide for Families of Children with Hearing Loss Welcome | 3 Laughter is the shortest distance between two adults. | Victor Borge, Danish pianist and comedian Dedication Remembrance The 2013 Resource Guide was dedicated to Regina Craig and today we continue to follow her footsteps. Regina Craig passed away in 2011 following a courageous battle with cancer. Regina was the Program Coordinator for the Virginia Guide By Your Side program from 2009 – 2011, reaching out to hundreds of parents who had just received the news that their child was deaf or hard-of-hearing. In addition to helping other parents, her most treasured role was as the parent of her daughter, Sarah. Regina often recalled that, “their journey together seeking effective communication began with Sarah’s diagnosis of hearing loss and My mother was my first teacher – it is because of her love and has been one filled with a variety of emotions: fear, grieving, hope, all of her efforts with me that I dedicate this revision of the confusion, frustration, determination, joy, patience, peace, acceptance Resource Guide. and above all love.” — Irene Schmalz Today Sarah is studying to be a nurse while working at two part-time jobs. On June 16, 2016 John Eisenberg of the VA Department of Education presented Sarah with a Certificate of Appreciation for all of her ground-breaking work with VDOE'S I'm Determined project as a Youth Leader over the past decade. Her mother would certainly be proud! 4 | Virginia’s Resource Guide for Families of Children with Hearing Loss Dedication & Remembrance | 5 Contents Welcome | 3 Communication & Language | 37 Dedication & Remembrance | 4 • Differences Between Language & Communication Hearing: An Overview | 9 • Communication & Language • Newborn Hearing Screening Tests • Communicating in Different Ways & Hearing Tests for Children • American Sign Language • Studying How Hearing Works • ASL/English Bimodal Bilingual Approach • Causes, Risk Factors & Characteristics • Cued Speech • Frequency & Intensity of Familiar Sounds • Listening & Spoken Language Approach • Being Deaf or Hard of Hearing • Total Communication – Degrees of Sounds • See the Sound – Visual Phonics © Learning About Hearing Devices | 19 • Helping Your Child to Access • Hearing Technology: Types of Hearing Devices Language & Communication • Assistive Technology • Advancing Technology for Independence • Keys to Access • Fun Apps for Learning Speech & Language Wearing Hearing Aids | 25 The Early Years: Birth – 2 years | 55 • How Hearing Aids Work • What are Early Intervention Services • The Virginia Hearing Aid Loan Bank • Getting Ready for IFSP Meeting • Hearing Aid Listening Check: Instructions The Future 2 – 21 Years | 61 • Keeping the Hearing Aid On • Individual Education Program • Hearing Aid Use: Special Cases Glossary & Resources | 65 Wearing Cochlear Implants | 33 • Glossary of Terms • Wearing Cochlear Implants • Organization & Resources 6 | Virginia’s Resource Guide for Families of Children with Hearing Loss Contents | 7 Need More Information? Notes & Information Flip to the Glossary & Resources section on page 65 for common terminology, helpful organizations and web sites to answer your questions. Hearing: An Overview Remember 1-3-6 1 – Screen for hearing loss before one month of age 3 – Diagnose hearing loss before three months of age 6 – Enroll in early intervention programs before six months of age What is the difference between hearing screening tests and diagnostic tests? A hearing screening test is when a device (such as OAE, ABR) provides sound at different pitches and levels that a person with normal hearing would hear or a normal auditory system would respond to. If a baby’s responses are within a normal range, they pass the screen. The screening doesn’t give comprehensive information about hearing – the baby might be able to hear much softer sounds, or might just barely hear the test sound. If the responses aren’t within that test range, we can’t say whether there is a mild or profound loss, or whether it’s a middle ear problem or an inner ear problem. It just means that the baby needs a diagnostic test. A diagnostic test is when you determine the very softest sounds a baby will respond to, at all the different pitches of interest. During the diagnostic evaluation the pediatric audiologist will analyze and compare several tests, such as air and bone conduction ABR, OAE, and tympanometry to determine what level and type of hearing loss the baby may have. — Christine Eubanks, PhD, Audiologist 8 | Virginia’s Resource Guide for Families of Children with Hearing Loss Hearing: An Overview | 9 Success Stories Newborn Hearing Screening Tests & Hearing Tests for Children In the following pages are success stories from deaf or hard of hearing children. When Eric was identified with a hearing loss The ABR involves placing electrodes on your child’s head, and reading the brainwave responses to sounds – similar to an EKG reading of your heart rhythm. just before his first birthday, I wondered what The OAE is even easier. An earplug is placed in your child’s ear and the ear’s responses to test tones are recorded. Your child just has to be quiet for this test, the future was going to be like for him. Eric Schmalz either awake or asleep. Making History On this journey, I have met other parents Eric Schmalz graduated college with a history with children of hearing losses, and the Tympanometry is also an earplug in the ear, and gentle pressure is used to see how well the eardrum is moving. degree and graduate school with a Master of beautiful part is that I am still in touch with “Behavioral” tests are where your child’s responses to sounds are observed by watching the child’s reactions (e.g. looking to see where the sound is coming from, being Teaching in Secondary Social Studies. He taught them over all of these years… startled by a loud sound, pointing to body parts). If your child is crying or uncooperative, the audiologist may not be able to say for sure whether your child heard the social studies for three years at a public high I hope you are inspired reading these sounds. The Auditory Brainstem Response (ABR), Otoacoustic Emissions (OAE), and Tympanometry tests are “objective tests,” which means that the responses can be school. He loves teaching in the classroom, success stories and that it will give hope for measured without your child’s cooperation – which often means that the child has to be asleep. but found he loves the museum industry even more. Today, Eric works at the United States you and your family! None of these tests are risky or painful. Each of these tests measures a different part of the auditory system, so they all have to be taken together to know whether Holocaust Memorial Museum in Washington, D.C. — Irene Schmalz your child has a hearing loss, how much loss exists, and whether it is permanent or temporary (like an ear infection). Intervention to emphasize speech and language He joined the staff at the museum because he development is necessary, so that progress can be assessed. Lack of progress means either that the hearing thresholds have changed, or that the hearing aid is not is passionate about social justice, learning and providing enough amplification.
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