My Child Has a Hearing Loss...What Next?
by Paula Rosenthal, J.D. Founder and Editor of HearingExchange.com
Recently, a parent of a newly diagnosed, hard of hearing infant contacted me. Like most parents, she and her husband were stunned when they received the news. She was looking for information to help them in their quest for knowledge about hearing loss and how best to help their child. Below, I have reprinted excerpts of my response to her. Here, you will find many valuable resources so that you too can learn, find support and make informed decisions.
While these are some recommendations to you for information on hearing loss and education, it is important that you do your own research and decide what is best for your child and your family. No one, not even medical professionals can make the determination that your child will only be able to communicate in a certain way.
Time is of the essence once your child's loss has been diagnosed. The faster the child is aided with hearing aids or a cochlear implant, the less of a delay he or she will have in speech and language. If your doctor or audiologist tells you to wait a few weeks or more to determine which hearing aids are appropriate, run, don't walk to another professional and get an earlier appointment. Children who cannot communicate often experience extreme frustration and it is imperative that they begin to learn how to communicate as quickly as possible.
Even profoundly deaf or hard of hearing children can learn to speak. Digital hearing aids offer children (and adults like me) great access to sounds. A cochlear implant is a surgically placed device that enables severely hard of hearing and profoundly deaf people to hear sounds and speech when hearing aids are inadequate. There are cochlear implant centers in major cities around the country. At this time, the youngest age they will do this procedure is 11-12 months old. As with any surgery, there are risks and it is important to research this thoroughly. You can start by visiting the cochlear implant manufacturers' websites which are listed in our Resource Directory.
If you are interested in further exploring this option, make an appointment for a consultation at a cochlear implant center. Online, you can find websites that offer personal experiences with cochlear implants as well as listservs comprised of adults with implants as well as parents of children with implants. These can also be found in our Resource Directory.
Find out if there is a program for hearing impaired or deaf children in your area. These programs often offer an infant center where you can go with your child a few times a week for therapy. They will teach you how to help your child learn the meanings of sounds and words. It is a well known fact that parents are highly instrumental in the education of their children and it is of even greater importance when your child is learning to listen and communicate.
A helpful book for parents of newly diagnosed children is "Choices in Deafness, A Parent's Guide to Communication Options" by Sue Schwartz. It outlines the various communication methods that are available to children who are deaf or hard of hearing. Many parents have found this to be a useful, unbiased resource. It can be ordered through HearingExchange. The proceeds from your purchase help to support our website.
Visit the Oberkotter Fndation's website at http://www.oraldeafed.org. On their main page they offer a FREE Parent Resource Kit called Make a Joyful Noise. It was developed specifically for parents of newly identified deaf and hard of hearing children. You can also order their free "Speaking for Myself" videos for yourself and any professionals you and your child will be working with. It is available in varying lengths and vividly demonstrates that deaf and hard of hearing children can learn to speak. This website also contains a comprehensive listing of schools in the United States and Canada that teach children with hearing loss to listen and talk.
The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) has a website at http://listeningandspokenlanguage.org/. They offer a FREE, 32 page booklet entitled "So Your Child Has a Hearing Loss: Next Steps for Parents." AG Bell also has local chapters in states around the country and can be an excellent source of support and information. AG Bell's national convention takes place every two years and offers workshops and seminars for parents and professionals. The next convention will be held in St. Louis, Missouri in 2002.
A highly informative website that you can spend days or perhaps weeks exploring is the Listen Up website . You will find resources there for all communication methods: oral, sign, total communication and cued speech. A good place to start there is at: http://www.listen-up.org/basics.htm, a page geared to parents of newly identified children with hearing loss. You can also read many personal accounts of people who have received cochlear implants as well as parents of children who have received implants on this website. Listen Up also offers an active email discussion group (listserv) comprised of over 200 parents from around the world. It is a supportive community no matter which communication method you choose for your child. You can "talk" by posting questions or comments to the group or just "listen" by reading the messages (about 25 or so per day). You can find out how to join by going to the main page of that site.
As one parent I know said recently, you are not eased into the world of hearing loss, you are thrown into it head first when your child is diagnosed. For many people, it is quite overwhelming. But it is also a critical time for decisionmaking. The best thing you can do for your child, yourself and your family is to learn as much as you can. Be informed. Don't rely on the professionals to tell you how to educate your child. Have high goals and expectations. Your outlook can and will have a direct impact on the life of your child.
Paula Rosenthal, J.D. is married and a mother of two young children. Paula, her husband and their daughter are all hearing impaired. Their son has normal hearing. A law school graduate, Paula is the founder and editor of HearingExchange.com, http://www.HearingExchange.com, a community for people with hearing loss, parents of deaf and hard of hearing children and the professionals who work with them. Subscribe to HearingExchange News at http://feedburner.google.com/fb/a/mailverify?uri=hearingexchange/LHpy.
Copyright © Paula Rosenthal, 2001. Reproduction of this article requires written permission of the author. Email firstname.lastname@example.org with your request.