PARENTDEAF-HH: Who Helped Parents After Diagnosis

Key Words: Deaf education information, deafness related issues, parenting

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-06 01:50:31 EDT
From: MKowalc585@aol.com
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

There must be many different stories on this list of people and professionals you met after your child was identified with a hearing loss. Were they hearing, Deaf, or Hard of Hearing professionals? How did they influence the decisions you made? How were you led to the research you needed to be able to make informed decisions?

Anyone willing to share?

Thanks.

MaryAnne Kowalczyk (MAK)

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-06 03:44:28 EDT
From: steve@adam.com.au (stephen white)
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

When I was 5 years old, I went to see a world famous ear, nose, throat surgeon by the name of Dr Rice. I was subjected to various hearing tests for 4 hours, with him saying "Steve, press the button when you can hear something" and then turning the volume knob up and up. And up.

At the end of the 4 hours, he talked to Mum in the corner while I waited, then he turned to me. Mum was looking worried, and he was very very serious. He said:

Stephen, I have something to tell you. You are deaf. You will always be deaf. There is nothing we can do. Even when you are 50, you will still be deaf.

I replied, equally solemnly and kindly.

That's OK, Dr Rice. When I'm 50, I'll only be deaf. You'll be dead.

Dr Rice didn't laugh or smile. He just turned away with a totally bemused expression on his face. --

steve@adam.com.au

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-06 11:58:29 EDT
From: Kdcarlo@aol.com
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

Hey MAK:

A 'people we met' story. After 18 mos. of debating with 'professionals' regarding my (now) 5 y.o. son's apparent hearing loss, we had a final diagnosis. We had four people immediately in the exam room. A social worker that is deaf, audiologist from the hospital, ENT doc, and a person with info. on the two local programs for early intervention. Even with all of that, I still felt there was no one to really ask important questions.

  1. What is all this talk about ASL -vs- SEE?
  2. What will we do for school?
  3. What will he be able to do and not do as he grows up?
  4. Will he speak?
  5. Will he hear with hearing aids and when will we see a difference in his response?
And so on. Although we did ask all of these questions, the answers were very vague. Experience and time were all that worked for us. We soon realized, also, that it is different for each parent/child situation.

Most helpful to me happened about a year ago. An organization donated this computer system to my son, Connor. (O.K., so I have taken it over!!!) I started to research and research info. online about deafness, everything I could read and get my 'clicker' to find, I absorbed. I know I am still not finished, but this is where I have received a lot of my information. For me, it is the only way to find out what is going on around the country, what other people are doing, and what works for families like ours.

I developed a 'no frills' web site a couple months ago. Nothing pretty or fancy about it. Just hyperlinks to places I have found interesting. I am going to give a presentation to our Parent Support Group at Children's Hospital in Seattle in a couple of weeks on Deafness and the Internet. This will, hopefully, be then passed to parents of newly diagnosed children.

http://members.aol.com/kdcarlo/index.html.

Thanks!
Kathy

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-07 00:37:17 EDT
From: rdr99@juno.com
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

I met several different people who were very helpful. Most of these people professionals. But, this story is about the most influential person I met:

Two weeks after identifying our daughter as Deaf; we were having a garage sale with my mother at her house. I was counting back change and making small talk, as I looked up the woman saw I was talking and motioned that she could not hear. I was so surprised. With my limited signing and by motioning I told her we just learned our daughter was Deaf. She smiled and said she was cute and the woman was gone.

~~About a week later I got the most special gift. A letter from this woman telling me that my daughter would grow up fine, anythng she wanted to be, etc... She enclosed her name, address & phone if I was interested in getting together. The letter was sent to the address of the garage sale to Mother of deaf girl.

~~ I could not wait to meet this woman. She taught me so much and shared so much!! Her husband was Deaf also; from a hearing family and could speak also. She was Deaf from a Deaf family and did not speak hardly at all. Twist of the story is; they had a daughter - exactly my daughters age- a hearing daughter. So, we got together often sharing stories of children, tradition, etc... We shared babysitting, family gatherings, birthdays, .... It was a sad day for me when they moved to the eastern boundary of Texas. We have kept in touch with letters. They will always be special to me.

~~ They taught me more than any "professional" could. I was welcomed into their home to see all of the light equipment, tty, captioner, ..... But, I was welcomed into their community, their family, their "home!"

Sydney

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-07 01:14:21 EDT
From: keedy@teleport.com (Keedy)
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

I just wanted to say in response to Sydney's wonderful post about the deaf woman who befriended her soon after her daughter's diagnosis of deafness that I wish ALL parents of a child who is diagnosed deaf could have a similar meeting with a deaf adult when they learn their child is deaf. Professionals often do wonderful jobs of providing support but that professional support is not the same as talking - laughing - or crying with a friend who understands what shoes you are wearing.

It really would be wonderful if deaf adults were paired with parents of newly diagnosed children in a VERY timely manner. For our family I noticed we all felt so much more positive about our daughter's diagnosis once we really met and shared friendships with people who are deaf. It has made all the difference in the world. Until we met deaf adults we had no real understanding of the reality of deafness as felt from the perspective of someone who was living that experience.

Thank you Sydney for your great message.
Wendy
Keedy@teleport.com

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-07 06:15:45 EDT
From: acdaley@nfld.com (Daley)
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

Kirsten was 6 months old when we learned that she was deaf. I feel very fortunate in that we live in a city with a Deaf School. So we were immediately put in contact with the "Home Parent Program Coordinator" at the Deaf School and within 3 days I was attending a monthly parents meeting. I was thrown right into it and for me that was the best possible thing. The school has a wonderful resource center and I am sure that within the first year I read 20 books with all different backgrounds related to deafness. I was able to educate myself and my family about a topic we knew very little about. We were able to use this information as a basis to make educated decisions in our choices we made.

Within two months I was introduced to a woman who works as a Lab instructor at the school and she “took me under her wing”. She is Deaf and with much patience she gave me some perspective as to what it is like to live in a world without sound. She guided me in ASL and into the Deaf community. She gave me the insight I was looking for regarding Kirsten’s place in society. Through her I am able to imagine the future and foresee my deaf child as a Deaf adult and she is a wonderful role model for Kirsten.

As far as our experiences with the professionals whom we dealt with, the majority of attitudes were that Kirsten was "broken", lets see what we can do to fix her.

~TTFN!
*Andrea @:~)

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-07 10:55:43 EDT
From: ckrepel@post.its.mcw.edu (Candace Krepel)
Sender: EDUDEAF@LSV.UKY.EDU (A Practical Discussion List Regarding Deaf Education)
Reply-to: ckrepel@post.its.mcw.edu (Candace Krepel)
To: EDUDEAF@LSV.UKY.EDU (Multiple recipients of list EDUDEAF)

I think it depends a lot on when and where. Scott was diagnosed 17 1/2 yrs ago in northern lower Michigan. There really was no support structure. PL94-142 had only recently been implemented. The physician was a jerk. Spent about 1 min with me, showing me the audiogram, and explaining that the slope indicated sensorineural. There was nothing medicine could do. Then he left. Never said "I'm sorry," or anything.

The audiologist was great. He was the only help we really had. He loaned us a portable audiometer and showed us how to make a game of getting Scott to listen to noise. I don't remember if he suggested literature or not (after all, this was a while ago). My spouse was already in Illinois (I stayed behind to sell the house), so I remember spending my evenings reading everything I could get my hands on regarding deafness.

After Scott and I moved to IL, we started being visited by a Parent-Infant educator (IL had mandated 0-3 services). She helped tremendously, not only by being a friend who understood some of the problems (like when Scott was big enough to open the screen door - the landlord would not allow anything permanent, like a hook - and I lost him. Of course, when I wandered the neighborhood, trying not to look like an idiot, he returned home, so that he was there when I got back. Never did find out where he was.

The other really important thing our PIT did was to arrange periodic meetings with the parents of all "her babies." It was very useful to be able to share stories and successes with others in a similar situation. I still remember the meeting at which the PIT had invited 5 deaf adults to tell their stories about growing up as deaf kids in hearing families. I am sure that what they had to say made me aware of issues that I had not thought of earlier, and helped shape the way we evolved as family.

Hope this is what you had in mind.
Candy Krepel

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Subj: Re: After identification of hearing loss, people we met
Date: 97-07-09 09:17:23 EDT
From: OMac353@aol.com
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

Well, my son of almost 4 was diagnosed at 6 months, after a month of being shuffled around and being sent to various different specialists. We were living in Ireland at the time and were lucky to have an american trained audioligist who had decided to work out her last ten yrs in Ireland and retire there.

Having been told by many people that he was untestable until at least 18 months and unfixable til age 4, we were told to go home and deal with it as best we could. We were given a teacher of the deaf/blind for one hour a week who was entirely oral, totally disallowed signing, gesturing or anything involving bodylanguage. I researched a lot of books from Ireland and England and Holland, all mainly oralism. then got a change in my teacher of the deaf and she knew a little sign and we explored the sign language more.

I heard of a deaf couple living in my area and went to visit them ( no relay and few tty's in Ireland, many deaf communicate with fax), they were tremenduously helpful and amazed that I wanted to learn sign and told me how amazed their deaf friends were that a hearing mother wanted to learn sign. (We had purchased an fm system on the recommendation of the audiologist, but due to inadequate amplification, my son heard nothing for a full year.) Skip forward a year, our whole family moves to the US in August of '95, my son placed in I/T program.

I still feel that the best support and help I receive is from members of the deaf community, I have been encouraged by my deaf friends, told what a great job I am doing, supported at times of IEP's and other stressful times, and I have met a few professionals who have been wonderful, but I find a few, both here and in Ireland, want to tell you what to do not give you information so that you can decide for yourself.

Gathering information and making informed decisions is the most important things we can do for our deaf kids, and I think its wonderful that everyone here shares so much, thank you, everyone, Orlaith

Uploaded By: BJ Lawrence/ Kent state University/ Deafed Major