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Other Resources and
Support Groups
Building
Support Networks for Parents of Hard of Hearing and Deaf Children
Basic
Information
Local
Resources
This
information is provided from notes taken by Cheryl Heppner, NVRC, at a
workshop by Brad Ingrao, M.S., Ed. D. and Dana Mulvany, MSW, LCSW at the
SHHH convention. Brad is an audiologist, "reformed" interpreter and
speech pathologist, and has an adopted child who was diagnosed with hearing
loss at age 3 1/2 -- audiologically hard of hearing but linguistically
deaf due to the language delay. Dana grew up hard of hearing and
was diagnosed with hearing loss at age 2 1/2. They told the
audience that hard of hearing children are often the last to get services.
Basic
Information
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of Page
Brad
provided some basic information for parents:
-
When
you have a hard of hearing child, it is very important to monitor ear infections,
wax buildup, etc. A 5% loss of hearing from these things to a child
with a lot of hearing has a small impact, but to a child with some hearing
loss it can make a huge difference.
-
Your
child's audiogram is a snapshot. All the big decisions are going
to be based on this audiogram, even though it is not a perfect picture.
Get a copy of the audiogram and memorize the information. Doctors,
audiologists, and speech pathologists will forget the information.
-
The
"speech banana" on the audiogram is not really accurate. Brad showed
a more accurate range on the audiogram. Audiologists often pat themselves
on the back if a child is only hearing at the bottom level of the speech
banana. But if they're only hearing at 10% of the available range,
they're not hearing most of the audible speech. If a child can't
pronounce the "f" easily, it's because he isn't hearing it.
-
People
in the hearing health field are afraid to make a commitment about methodologies
and don't take advantage of the parent support networks, which are very
important.
-
The
audiogram's weakness is that it can tell what the child can hear but not
what the child can understand.
-
Hearing
health professionals need to look at hard of hearing children as members
of a family dynamic.
Q:
Why don't audiologists refer parents to support groups, speech therapists,
etc. to help them learn to grieve?
A:
Audiologists are not trained in these issues. Parents must walk in
and say "I'm paying you and I had to find out on my own about this information."
Parents are the ones who tend to have to do the research for the kids.
Dana:
-
There
are support groups but it's hard for parents to find each other.
With school confidentiality rules, parents can't get connected in their
own school districts. Also, not many psychotherapists are trained
to work with parents of children with disabilities.
-
Many
parents of hard of hearing children do little to accommodate the child
at home, so there may be a tendency to minimize the effect of the hearing
loss. When she was a child, her family made her go to movies she
couldn't understand and sit in the back seat of the car where she couldn't
hear conversations.
-
Most
parents haven't had much guidance and are doing the best they can on their
own.
-
Disability
is a natural phenomenon. Parents can think of their children as an
opportunity for others to adjust and learn about things they never would
have been exposed to.
Brad:
-
Parents
should make a child who is hard of hearing responsible for the care of
his or her hearing aid very early. If your child first received a
hearing aid at age 3, he or she should be taking care of it by age 3 1/2.
Kids touch and manipulate things all the time so there's no reason why
they can't learn to do it correctly with a hearing aid.
-
As
an audiologist, he has seen how boring and even insulting some hearing
tests are for kids. Instead of starting with the "flashing bear"
or blocks, he starts with the testing that requires more from the kids.
He pushes until he finds out that they know they can't do it and then backs
off and tries the next less difficult kind of testing.
-
Parents
should have closed captions on their TVs all the time, not just when the
child is watching. If captioning is only on when your child is watching,
you make the statement that the captioning is only for his problem.
Q:
If I use captioning all the time, will that be bad for my other children
who are hearing?
A:
No. The idea is to promote universal access. There has been
a lot of research about captioning. It was found that hearing children
of deaf parents who watched everything with captions read better than their
peers. Dana also recommends that parents model acceptance of captions
by going with their children to see captioned movies.
Dana:
-
One
of the special skills kids need to learn is how to explain about hearing
loss, their needs, and dealing with negative reactions of other people
to their hearing loss. To do that, they need parents who understand
it.
-
If
you talk to hard of hearing adults, they may have some insights that your
child is not able to share.
Brad:
-
The
room with the audiologist is the most unrealistic listening environment
in the world. A classroom is totally different. How much a
child can hear is affected by all kinds of things, such as the distance
from the teacher, whether there are drapes on the windows and carpet on
the floor, and whether there are assistive listening systems available.
Q:
Are FM systems used by parents in the home?
A:
They are starting to be prescribed. FM provides a better way to hear
but it can limit the child's exposure to more than one speaker. The
child needs to learn to listen to and understand multiple speakers.
A behind-the-ear hearing aid with an FM system is a good compromise because
you can switch it on and off. Dana added that when the teacher is
using an FM system in class, it means the child is not hearing his or her
classmates unless a microphone is being passed around or the teacher is
repeating what they say.
Q:
What can I do so my child doesn't feel she has a limitation? She
comes in angry and frustrated and wants to know, "Why me?"
A:
Get to the cause and find out what makes her angry and frustrated.
Talk
about
how everyone has challenges.
As
this workshop wound down, several people shared strategies about how they
had successfully coped with the "Why me?" situation. One hard of
hearing adult said that her parents sat her down and told her she had to
wear her hearing aids because they couldn't fix her hearing problem.
She resented it for a day or two and then was fine after that. Another
hard of hearing adult said that humor takes the edge off the hurt.
If her husband tells a joke and she doesn't hear the punch line, people
ask her "How can you live with him?" and she responds "Because I don't
have to hear what he says."
Brad
faced this situation with his son at age 6. He took his son aside
and told him that he was going to show him a secret thing that he could
do if people made fun of his hearing aids -- something that nobody else
could do. Then he told him the story of Popeye the Sailor Man, and
sang the song. At the end of the song, he taught his son to make
his hearing aid go "toot toot" with feedback. It worked great, except
for one teacher who thought it was a terrible idea and reacted with horror.
Their
final words were to throw away all the pity. Realize that the child
with hearing loss represents the best of you and be proud of them.
They
also recommended taking advantage of Internet resources and listservs.
Brad cautioned parents to never use their last name or their child's name.
"It's going to be great to pour out your guts, but keep their private lives
private."
*Copyright
1999 by Northern Virginia Resource Center for Deaf and Hard of Hearing
Persons, 10363 Democracy Lane, Fairfax, VA 22030. Please share this
information but be sure to credit NVRC.*
Books:
A
Journey Into Hearing: Wired For Sound
Biderman, Beverly: Trifolium Books 1998 [on cochlear implants].
Available from SHHH, members $15.95, also local bookstores
HEAR:
Solutions, Skills, and Sources for People With Hearing Loss
Pope, Anne, Dorling Kindersley, 1997. Available from SHHH $19.95, also
local bookstores Living
With Hearing Loss
Dugan, Marcia; Barron's Educational Series, 1997. Available from SHHH
$6.95, also local bookstores Odyssey of Hearing Loss: Tales of
Triumph
Harvey, Michael A., PhD; Dawn Signs, 1999. $23.95
Local
& State Resources:
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of Page
Sign
for Fun Club
Website:
http://www.signsoffun.org
Contact:
Arlene Vanhorn, info@signsoffun.org
The
club meets through the year.
There
is a yearly camp sponsored by the Fredericksburg Host Lions. disAbility
Resource Center
Outreach services for the deaf and hard of hearing provided through a private
contract with VDDHH.
409 Progress Street
Fredericksburg, VA 22404
540 373-2559 (Voice)
540 373-5890 (TTY)
800 648-6324 (Voice or Relay)
540 373-8126 (Fax)
Arva Priola- Outreach Coordinator
Email:
apriola@cildrc.org
Gail Krpata- Information & Referral Specialist
Email:
gkrpata@cildrc.org
Virginia
Department for the Deaf and Hard of Hearing
Arva
Priola, Outreach Specialist for Deaf and Hard of Hearing:
disAbility
Resource Center
409
Progress Street, Fredericksburg, Virginia 22401
540-373
- 2559/V 373-5890/TTY 373 8129/Fax
Email:
apriola@cildrc.org
Office
Hours: Monday through Friday 8 am - 5 PM
Please
call and make appointment. We are a private contractor for the Virginia
Department for Deaf and Hard of Hearing. At the site we have demonstration
display of technology used by deaf and hard of hearing people and also
a display of equipment offered by VDDHH for the TAPLOAN program.
We have application where people can apply for this equipment through VDDHH
all on a sliding scale for people who are deaf, hard of hearing, and have
speech problems. Training is provided in all different area of hearing
loss from technology to awareness training. Feel free to come
and visit our center.
Virginia
Relay- New number is 711
Assists hearing people talk on the phone to people with hearing or speech
impairments.
Mental
Health Counselor for the Deaf and Hard of Hearing
Mondays
Kathy Baker, M.Ed.
Rappahannock Area Community Service Board
600 Jackson Street, Fredericksburg, VA
540 373-6876 (Voice/TTY)
Thursdays
Northwestern Community Service Board
158 Front Royal Road, Suite 200
Winchester, VA 22602
540 647-8888 (Voice/Relay) Virginia
Department of Rehabilitative Services
Mary
Nunnally
804-662-7614
Churches
with interpreted services/deaf services
Fredericksburg
Baptist Church 540-373-4402 TTY
Faith
Baptist Church 540-786-4953
Oakland
Baptist Church 540-663-2546 TTY
Spotswood
Baptist Church 540 898-0757 V, 540-898-1817 TTY
St. Patrick's Catholic Church 540 582-5252
Chancellor Baptist Church 540 786-6927
Salem Fields Community Church 540 663-2546
Church of Jesus Christ of Latter Day Saints 540 899-6592
Temple Baptist Church 540 373-9044
Sign
Language Classes
- disAbility
Resource Center 540 373-2559
- Germanna
Community College 540 710-2000
Clubs
and meetings
Hearing Loss
Association - Rappahannock Chapter
Contact:
Arva Priola
Phone:
540 373-2559
Email:
apriola@cildrc.org
Fredericksburg
Club of the Deaf
Website:
http://www.deafmall.net/fcd
Contact: President of the Club
Email:
FCDPresident@yahoo.com
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