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A Kansas Resource Guide for Families with Infants and Toddlers

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A Kansas Resource Guide for Families with Infants and Toddlers A Kansas Resource Guide For Families With Infants and Toddlers Who Are Deaf/Hard of Hearing ACKNOWLEDGMENTS Sound Beginnings expresses extreme gratitude to members of the Early Intervention Task Force for sharing their expertise, time and energy to develop the Kansas Resource Guide for Families with Infants and Toddlers who are Deaf/Hard of Hearing. Their commitment demonstrates their strong belief in the importance of providing a broad scope of information about early intervention to families and service providers. A special note of appreciation is given to Jane Schwartz, Chair of the Task Force, who maintained our focus. Special thanks to Judy Conley, Hartley Family Center, who typed many drafts of this document. Early Intervention Task Force Members Jane Schwartz, MS, Teacher of the Deaf/Hard of Hearing and ECSE, Rainbows United, Inc. Carol Busch, MS, Teacher of the Deaf/Hard of Hearing and ECE, Kansas State School for the Deaf Stephanie Frost, MS, Ed, Teacher of the Deaf/Hard of Hearing, Russell Child Development Center Liane Garner, MS, CCC-SLP, Speech-Language Pathologist, Director, St. Joseph Institute for the Deaf Lynn Hayes, EdD, Director, Hartley Family Center University of Kansas Medical Center Janea Kuda, CED, Teacher of the Deaf/Hard of Hearing, St. Joseph Institute for the Deaf Teresa Kennalley, MA, Director of Audiology, Via Christi Medical Center Valerie Kerschen, MD, Developmental Pediatrician, Wesley Medical Center Brenda Lancaster, Parent of children with hearing loss Lorraine I. Michel, PhD, CCC-SLP, Director, Children’s Developmental Services, KDHE Dawn O’Brien, M Ed, Assistant Director, Kansas Commission for the Deaf and Hard of Hearing Molly Pottorf, MA, CCC-A/SLP, Audiologist, Via Christi and Wichita Public Schools Carmen Schulte, MA, CCC-A, Audiologist, Wichita State University Marla Staab, MS, CCC-SLP, Coordinator of Clinical Services, Herndon Clinic, Fort Hays State Univ. Kim Symansky, MA, Early Childhood Teacher of the Deaf/Hard of Hearing, KS School for the Deaf Kim M. Sykes, MA, CCC-A, Coordinator of Newborn Hearing Screening, KDHE Cindy Wiechman, Parent of a child with hearing loss Judy Widen, PhD, Associate Professor, Audiology, University of Kansas Medical Center Kansas Commission for the Deaf and Hard of Kansas Department of Health and Environment Hearing Newborn Hearing Screening Program 3640 SW Topeka Blvd., Suite 150 Infant-Toddler Services Topeka, KS 66611-2373 Services for Children with Special Health (800) 432-0698 Care Needs Make A Difference Information Network 900 SW Jackson, Landon State Office Building Topeka, KS 66612-1220 (800) 332-6262 Graphic designs for “Sound Beginnings” by Craghead and Harrold, Inc., Wichita, KS. Quotes from Kansas Parents. Guidelines will be reviewed every two years and updated as needed. Kansas Resource Guide • 2001 ´(YHQ WKRXJK , NQHZ EHIRUH WKH WHVWLQJ WKDW P\ GDXJKWHU ZDV QRW KHDULQJ , GLG QRW ZDQW WR EHOLHYH LW ZKHQ WKH\ WROG PH WKH UHVXOWV , ZDVQ·W JRLQJ WR OHW WKLV KROG KHU EDFNµ 0RWKHU RI D FKLOG ZLWK VHYHUHSURIRXQG KHDULQJ ORVV DQG YLVLRQ ORVV ´$ PLOOLRQ WKLQJV ZHUH UXQQLQJ WKURXJKP\ PLQG«ZLOO , KDYH WR OHDUQ VLJQ ODQJXDJH" :KR ZLOO KHOS XV" :KR FDQ KHOS XV" 6R PDQ\TXHVWLRQV , ORYH P\ VRQ DQG RXU IDPLO\ ZLOO GR ZKDWHYHU LW WDNHV WR VHH KLP VXFFHHGµ )DWKHU RI D GHDI FKLOG ´,·OO QHYHU IRUJHW WKRVH ZRUGV« ¶0RP ,·P DIUDLG \RXU VRQ FDQ·W KHDU \RX· , LPPHGLDWHO\ VWDUWHG WR FU\ OLNH D EDE\ 2QH \HDU ODWHU KH LV UHVSRQGLQJJUHDW ZLWK KLV KHDULQJ DLGV DQG RXU IDPLO\ LV JHWWLQJ EHWWHU DW VLJQ ODQJXDJH DOO WKH WLPH :H QRZ NQRZ WKDW LW·V QRW WKH HQG RI WKH ZRUOG« KH·OO MXVW XVH D GLIIHUHQW IRUP RI FRPPXQLFDWLRQ DQG WKDW LV RND\,WMXVW PDNHV KLP PRUH VSHFLDOµ 0RWKHU RI D GHDI FKLOG :H KDG VRPH WRXJK FKRLFHV LQ WKH EHJLQQLQJ EXW ZH GHFLGHG ZH ZDQWHG RXU VRQV WR EH DEOH WR ZRUN LQ WKH ZRUOG ZLWKRXW WKH ZRUOG KDYLQJ WR FKDQJH IRU WKHP 7KURXJK VSHDNLQJ DQG OLVWHQLQJ RXU ROGHVW VRQ IXQFWLRQV LQ WKH KHDULQJ ZRUOG MXVW OLNH D KHDULQJ SHUVRQ :H NQRZ WKH VDPH LV SRVVLEOH IRU RXU EDE\ )DWKHU RI WZR GHDI VRQV ´$IWHU , JRW RYHU WKH LQLWLDO VKRFN RI WKH GRFWRU WHOOLQJ PH P\ VRQ KDV D KHDULQJ ORVV , WROG P\ ZLIH WKLV ZLOO PDNH D JUHDW VWRU\ GXULQJ WKH 2O\PSLFV RU KLV SROLWLFDO FDPSDLJQ , QHYHU KDG D GRXEW WKDW P\ VRQ ZRXOG RYHUFRPH WKLV DQG EH D JUHDW SHUVRQ 7KHQ ZKHQ RXU LQIDQW GDXJKWHU ZDV GLDJQRVHG LW GLGQ·W PDNH LW DQ\ HDVLHU EXW , NQHZ ZH DV D IDPLO\ FRXOG KDQGOH LWµ )DWKHU RI WZR FKLOGUHQ ZLWK PRGHUDWH KHDULQJ ORVV ´7KHUH LV D UHZDUG DW WKH HQG RI WKH MRXUQH\ ²WRVHH\RXU FKLOG JR RXW LQWR WKH ZRUOG DQG JHW PDUULHG JHW D MRE EHFRPH D KRPHRZQHU HWF <RX UHPHPEHU WKDW PDQ\ RI\RXU IHDUV ZHUH XQIRXQGHG 2XU GDXJKWHU LV D KDSS\ KHDOWK\ SURGXFWLYH DQG GHOLJKWIXO DGXOWµ 3DUHQW RI D SURIRXQGO\ GHDI\RXQJ DGXOW Kansas Resource Guide • 2001 i PREFACE Over 24,000 children are born every year in the United States with some level of hearing loss. Studies have shown that the earlier a child is identified with a hearing loss and begins early intervention, the more likely they are to develop language and communication skills on par with their peers, and lead full and productive lives. Kansas enacted legislation, effective July 1, 1999, to provide screening for the early detection of hearing loss in newborn infants. Newborn hearing screening makes a difference for all children and their families: information about hearing and typical hearing milestones is valuable for all parents in the care of their child. One of our nation’s goals is to confirm hearing loss by three months of age, with appropriate intervention by six months of age. Early detection of hearing loss in an infant, early medical management as needed, and the initiation of early intervention and treatment before six months of age has been shown to be highly effective in promoting a child’s development. Early intervention services, as desired by the family, should begin as soon as possible. The Resource Guide is based on the following beliefs: A child with a hearing loss and his or her family should have access to: Z Assessment, diagnosis, and intervention as early as possible. Z Family-centered programs that provide early language acquisition. Z Information about where to receive health and medical services. Z Natural language development through the visual and/or auditory channels as early as possible. Z A linguistically rich environment. Z Qualified personnel who are proficient in the family’s preferred mode of communication and primary language. Z Children and adult role models who share the family’s communication mode and primary language. Z An early intervention program that embraces high expectations, standards, and evaluation criteria. Z An early intervention program planned and delivered by qualified personnel in collaboration with the family. Z The most current resources and assistive technology. ii Kansas Resource Guide • 2001 TABLE OF CONTENTS CHAPTER PAGE Preface ii I. Introduction 1 II. Feelings and Emotions 2 III. Who Will Help Us? 4 IV. Hearing and Hearing Loss 7 The Parts of the Ear 7 Types of Hearing Loss 8 Audiologic Assessment of Infants and Toddlers 9 How Infants and Toddlers Respond to Sound During Hearing Tests 11 What is an Audiogram? 12 What Does an Audiogram Tell Me? 13 Speech Banana 14 Effects of Degree of Hearing Loss without Amplification 15 Amplification 16 Cochlear Implants 19 V. Communication Choices/Terminology 20 VI. Infant-Toddler Services in Kansas 22 VII. Resources 24 National 24 Kansas 26 Infant-Toddler Services Early Intervention Networks 28 Funding 31 Deaf Culture 33 Web Resources 35 Deafblind 37 Cochlear Implant Centers 38 Parent Library 39 Children’s Library 41 Lending Library / Direct Order for Resources 43 VIII.Common Terminology 44 Kansas Resource Guide • 2001 iii INTRODUCTION This Resource Guide has been designed for you to read at your own pace. You may find yourself reading some sections now and some later. It may be helpful to read certain sections more than once. You can use this Resource Guide to find out about: Z Dealing with feelings Z Community support systems, resources, and programs Z Hearing, hearing testing, hearing loss, and amplification Z Choices for communication Z Resources for financial assistance As you look over this guide, you may think of questions and ideas you haven’t considered. There is no one “right” way when it comes to finding the program that will help your child to succeed. You will make many decisions in the days ahead. Give yourself the time you need. Your child’s needs, as well as the needs of your family, will change with time. Remain open to new ideas. ´1RZ , NQRZ WKHUH DUH VR PDQ\ ZD\VWRVD\ ¶, ORYH \RX· WKDW GRQ·W KDYH WR EH KHDUGµ 0RWKHU RI WZR FKLOGUHQ PRGHUDWH WR SURIRXQG KHDULQJ ORVV Kansas Resource Guide • 2001 1 FEELINGS AND EMOTIONS “Hearing is the only thing your child can’t do today, that you thought he could do yesterday.” Most people do not know much about hearing loss and what it means for their child and family. You may not have heard much of what was said after you were told the initial diagnosis – “your child has a hearing loss.” Instead, many questions may have raced thru your mind: “Can it be corrected?” “What caused it?” “Will it get better?” “Will it get worse?” “Can he learn to talk?” “Can she go to regular school?” “If we have more children, will they have a hearing loss, too?” “Can he get married?” “Will she be able to get a job?” The answers to some of these questions may not be what you want to hear – “No, this type of hearing loss cannot be medically or surgically corrected.” “We don’t know for sure what your child’s future holds – it depends on a lot of things.” You want the best for your child, but now you may not know what to do.
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