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://www.agbell.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://lb.bcentral.com/ex/manage/subscriberprefs?customerid=6181.
Copyright © Paula Rosenthal, 2001. Reproduction of this article requires written permission of the author. Email info@hearingexchange.com with your request.
