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From: 11PDAVIS@GALLUA.BITNET (Pete Davis)
Newsgroups: misc.handicap
Subject: Re: Waardenburg's Syndrome
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Date: 28 Jul 90 04:44:42 GMT
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Reply-To: 11PDAVIS@GALLUA.BITNET (Pete Davis)
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Hi Brian,

Hope I can provide some useful information about your posting.
Being a current grad student, I have a tendency to regurgitate
everything I think I know about a subject; but I'll try to put a
muzzle on it.

First of all, it is possible to get a definite diagnosis of an
infant's hearing status. Auditory Brainstem Evoked Response (ABR)
is a physiological, as opposed to behavioral, audiometric testing
method. It measures the reaction of the auditory nerve pathways,
from the inner ear to the cortex, in response to sound stimuli.
This is usually done when the child is asleep, and provides an
objective way to measure auditory functioning.

ABR would be impossible without computers. Electrodes are placed on
your head, similar to an EEG procedure. The audiologist begins the
test by activating a computer controlled sequence of sound stimuli.
These are a series of precisely timed clicks, at various pitches
and volumes. The electrodes record the electrical activity at each
of the "steps" in the nerve pathways as the nerve signal travels to
the auditory cortex.

When all of those readings have been processed by the computer, the
ABR prints out a graph, with one wavy line running from left to
right. Each peak on the graph represents the electrical activity at
the significant junctions along the nerve pathways, and the time it
occurs after each click.  The computer averages the reactions to
thousands of clicks, at all pitches and volumes.

By comparing the results to the norms to which that ABR machine was
calibrated, the functioning of the auditory system can be
described. The significant factors are: the lag-time
(click-stimulus to nerve cell firing) of each peak on the line, and
the time difference between individual peaks.

Since no voluntary response is required, ABR can be performed
almost as soon as the newborn is dried off. And it offers an
objective description of the auditory system's operation, it is
even possible to tell where the breakdowns occur.

Well, I guess that was longer than I intended; but I hope it was
clear enough. If not, feel free to ask about anything that was
confusing; either directly or over the net.

As if this isn't long enough already, I'd like to offer a few
suggestions that I think may be useful.

1. The National Information Center on Deafness, here at Gallaudet
University, is a clearing house for information about deafness,
communication methods, child development and education of, by and
for the deaf. If they can't answer your questions, I expect they
can tell who can.

The Genetic Counseling Center, also at Gallaudet, specializes in
hereditary forms of deafness.

You can contact either of these offices by mail or phone (voice or
TTY) at:
		Gallaudet University
		800 Florida Ave, NE
		Washington, DC 20002

                (202) 651-5000

2. The woman who developed the Parent Infant Auditory Program in
Montgomery County, has published an excellent book. It provides the
most unbiased source of information for parents who need to learn
about deafness and make important decisions about how their child
will communicate and their child's education. The book provides
information about Oral, Total Communication and Cued Speech, as
well as general information about state and national resources for
the deaf, and a list of suggested reading materials.  This is as
well-balanced a presentation as you will find:

        Choices in Deafness: A Parent's Guide
        Sue Schwartz, PH.D., Editor
        1987, Woodbine House, Kensington, MD
        ISBN 0-933149-09-3

3. re: "What can I do now?"

Now you get my personal suggestion, and then I'll shut up. I promise.

Love your daughter. Take care of the decisions you will have to
make, but please don't lose sight of the fact that she's a child,
her job is to explore her world, have fun while she does it, and
make a big mess along the way. Give her opportunities to grow up
feeling competent and confident. That's the best thing you can do
for her.

Lindsey won't be a little kid for long, so don't you blow your
chance to enjoy her; for her own sake, and just as she is. That's
the best thing you can do for yourself.

        Please feel free to contact me if you'd like; either directly or
through the list.

                                        Have fun!
                                                Pete Davis
                                                11PDAVIS@GALLUA.BITNET