news@brian386.uucp (Brian McCane) (07/24/90)
Index Number: 9395 My wife has a very mild form of Waardenburg's Syndrome. Back in December, we had a baby girl, Lindsey. We recognized the features caused by the Syndrome, (white forelock, bow shaped mouth, and licanthic eyes (we had done a LOT of research before we had her)). Anyway, we took her in for a hearing test and found out that she was in fact deaf (105 loss left, 85 loss right). What I am getting around to asking, is has anyone had a child diagnosed as being deaf at such an early age, (< 6 weeks), and if so, what were you able to do to help her at that age. We have people from Ski-Hi helping US, but it doesn't seem like anything is being done for her. Speech pathologists at the nearest children's hospital say that there is not much that can be done to help her until she is old enough to be trained on how to take hearing tests to better ascertain just how deaf she is. What can I do now??? brian
dmimi@uncecs.edu (Mimi Clifford) (07/25/90)
Index Number: 9487 Hearing problems can be diagnosed in new-borns using conditioning techniques. If your local testing person (MD or otherwise) doesn't know about this, FIND SOMEONE WHO DOES. Try for a University speech and hearing center. That will at least get you as good an audiometric test as possible at this point. Now, more importantly. Start to 'talk' to your baby, using cued speech--yes, you'll have to learn the system--or, if you must, ASL JUST AS SOON AS POSSIBLE. Meanwhile, talk to the baby orally, as if he/she can hear you. If it were my child, I'd go to all lengths to learn cued speech pronto--it combines oral speech (to be lip read by the child) and hand signals near the mouth that clarify the sounds that don't appear visually on the lips. I don't have an address for a National Cued Speech organization, but I do have the phone number and address for a Cued Speech Center in Raleigh, North Carolina. You could certainly write to them for more info: Mrs Mary Elsie Daisey Cued Speech Center POBox 31345 Raleigh, NC 27622 [Note from Bill McGarry: This Raleigh address is the National Cued Speech Association. The phone number is (919) 828-1218] I wish you well--please feel free to ask me questions if you wish.
11PDAVIS@GALLUA.BITNET (Pete Davis) (07/28/90)
Index Number: 9591
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