Re: no one knows what a CI is

[Guest guest]

Hi Beth,

I guess part of having a CI is educating others about them.. but it astounds me

that some people just yawn and carry on without any *awe* at all when I say " I

used to be profoundly deaf and now I can hear! " Those words are so astounding

to me that I really expect some " ooohhhhing " and " ahhhing " when I make that

coment... but most people just say " Oh that's nice.... " (smiles)

It amazes me what some people take for granted!

lol!

I feel like my map is pretty good right now but still may stop in at Virginia

Mason someday just to have it checked out.. probably wouldn't make a trip to

Seattle just for that as I could almost buy a new processor for what it would

cost me to be in Seattle for a week.. plane fare, hotel, dining out etc etc (I

love to shop! :-)

Pam

----- Original Message -----

From: Beth Ward

Pam,

You're not alone in that. I've actually had doctors tell me they didn't

know what a CI is, and one of them was an ENT! Now that's scary!

[Guest guest]

Pam,

When I have explained about my CI I have gotten hugs and kisses even from

total strangers who say they are so happy for me. They have even thanked me

for educating them. Some have also said they will encourage friends and

family members to explore the possibilities. Twice so far I have had those

who asked to feel my head.very weird from total strangers. but I think it is

very important to spread the word.

D

Bilateral and loving it!!!!

[Guest guest]

wow DD! lucky you! I think you live in a more culturally advanced place than I

do. :-) Keep up the good work and I'll keep my hopes up that somewhere there are

interested people.

Of course my family and friends all think it's great and miraculous so I have a

cheering section.. but most others just look blank about it.. lol!

Oh but one woman did come up to me in the grocery store and ask if I had a

cochlear implant.. that was good. I forgot about that one.

Pam

[Guest guest]

Pam,

Its simple really. Until one loses something, that person has not a

clue what he/she has. Many people just dont realize what its like and

cannot comprehend it. Take the moon for example, it seems so close but its

impossible to comprehead the vast distance between earth and moon, let alone

the fact that currently, it takes days (weeks?) to travel there. LOL

*---* *---* *---* *---* *---*

People say I live in my own little fantasy world... well, at least they

*know* me there!

-- D.L. Roth

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/ NEW Home Page!

[Guest guest]

I haven't had any trouble so far with anyone that I know. I've told quite a

few people what I'm hoping to do and every single person has been quite well

versed on what it is and they ask intelligent questions about it. I think

maybe it has to do with living in Australia where Cochlear came from and the

success story of the company has been very well publicized in newpapers, TV

etc.

I can remember when I first arrived in Australia from the UK about 9 years

ago now I saw a little boy with a cochlear implant and I wasn't 100% sure

what it was. I wondered whether it was an implant and then it was confirmed

later when I saw photos of people wearing them. So back then I wasn't well

versed in them either!

_____

From: [mailto: ] On Behalf Of

coronacrone

Sent: Friday, 30 December 2005 8:56 AM

Subject: Re: no one knows what a CI is

wow DD! lucky you! I think you live in a more culturally advanced place

than I do. :-) Keep up the good work and I'll keep my hopes up that

somewhere there are interested people.

Of course my family and friends all think it's great and miraculous so I

have a cheering section.. but most others just look blank about it.. lol!

Oh but one woman did come up to me in the grocery store and ask if I had a

cochlear implant.. that was good. I forgot about that one.

Pam

[Guest guest]

I tell them I do not care what they think!

In a message dated 12/30/2005 11:35:08 A.M. Pacific Standard Time,

sr171soars@... writes:

On another note, I would politely but firmly tell those (particularily the

deaf) who tell you that you shouldn't have gotten a CI to mind their own

business (I had my battles [er...discussions :-) ] with the deaf community

about this and they seemed to back off).

[Guest guest]

In reference to implanting a prelingually deaf teen in a deaf school

setting, I believe part of the problem with the teen not adapting to the CI

is because of the adolescent need to be the same as the majority population

and not be different. The teen will try to hide it or not wear it,

preferring to be similar to the other students, and there are other

components to this issue. .

[Guest guest]

Beth,

IMHO, I think there are several aspects to this situation about the teen you

mentioned.

First, there is the fact it does take lots of work to make it work. You have

the speech component and the hearing component. Each has there own issues.

Learning to hear is a big enough problem without having to get the speech down

too. If that teen doesn't really grasp that (no matter how many times one

explains it), then they are generally destined for misery. Often kids just

don't have the motivation to do their best.

Secondly, the info from the story leads one to think that the parent either

didn't realize or ignored the psychological issues of the teen. Teenagers are

a difficult bunch anyway as someone already pointed out about this. Most of

them really are in " no mans " land trying to start the separation process from

their parents. They are already in more an accepting mode about being deaf and

the motivation really needs to come from both the teen and the parents. Again

is the child just giving in to get the parents off their back? Too many

variables here... I do understand that many cochlear implant centers are

grasping how important psychological counciling is becoming as part of the

overall package. Perhaps, this will reduce such results. I would say why

waste the money if this is going to happen?

Thirdly, if you do implant a child, then after the age of seven or so it

really becomes a problematical issue whether it will be successful. The

" golden " age for the brain in children is less than seven. Of course, that

brings up another can worms for parents as you already mentioned (Er...whether

or not it is right to allow a young child to have a CI). I lean toward the

parents determination...what child has the capacity to figure this out? If

they (the grown child) don't want to deal with it later, then they don't have

to but at least the parents gave them a chance.

Yep, it can be a complicated situation with no winners.

On another note, I would politely but firmly tell those (particularily the

deaf) who tell you that you shouldn't have gotten a CI to mind their own

business (I had my battles [er...discussions :-) ] with the deaf community

about this and they seemed to back off). This is especially true if they

haven't tried the same thing. All that matters is how you feel it about it.

On a good note, I have seen the general trends in the deaf community that is

more accepting about CIs. Just like HAs in the past, CIs have threatened their

existance and thus brings out the worst reactions in people.

Dale

Beth Ward <beth_brittney@...> wrote: Pam,

I get the same blank look and, " Oh, that's nice, " that you get, generally

speaking. I've also had some Deaf try to tell me how horrible it is that

I've got a CI. A Deaf club actually picketed the hospital the day I had

surgery (my CI journey was being followed by a Wichita news crew). I still

have some Deaf adults trying to tell me I shouldn't have a CI and that it's

child abuse to implant a child. These are people I've met through the

University of Nebraska's Deaf Ed. program, no less. It's really scary to

think of the people who might listen to them and not implant their child.

One hearing mother of two Deaf children fought with her daughter over

implantation until she was a teen, then allowed her to be implanted but left

her in the school for the Deaf, and now they refer to the CI as a $90,000

refrigerator magnet. I really have to wonder how much time and effort was

put into helping this teen learn to use her CI. I've heard over and over

that prelingually Deaf teens are the least successful of all implantees. Is

it because they think it's an instant fix and don't put in the work it takes

to learn to hear?

Beth

" Surviving a loss and letting go is only half of the story. The other half

is the secret belief that we will find, in one form or another, what we have

lost. And it is that potential, shimmery as a star on a clear night, that

helps us survive. " -- Chambers

[Guest guest]

Beth,

Thanks, that clarifies the situation a bit. I was going to state that

leaving the teen in the school of the deaf was very questionable but I didn't

want to be presumptious as I wasn't exactly sure if they did assist those

needing a more oral approach.

It is interesting that you mentioned that the teen asked for the implant but

that the parents were half-hearted with their support. That is almost a sure

recipe for disaster. Shame to hear that.

Thanks for pointing out how the right educational program can work for

somebody prelingually deaf and attempting to switch into the CI mindset.

Fascinating to say the least.

Dale

Beth Ward <beth_brittney@...> wrote: Dale,

It was the teen who wanted the CI. Her parents didn't want her to get it.

Her mother works with Deaf children and understood that the CI may or may

not be successful and that it would be a lot of work. However, I think the

biggest issue here was the parents were not 100% behind their child in this

decision and may have unwittingly undermined her efforts to be successful.

Also, if you place a child with a CI into a school for the Deaf where it is

all ASL all the time, how in the world are they going to learn to understand

speech? You have to be exposed to speech to be able to learn to understand

it, and the more you're exposed to speech, the faster and more easily you

will adjust. There's a lot of research on that subject showing that you

have to be exposed to speech, and lots of it. The more, the better. For

those who are in their teens, as you pointed out, the window of language

development has closed, so it's going to be more difficult. That doesn't

mean it can't be done, just that it's going to take more time and more

effort. I believe that prelingual adults are more successful than

prelingual teens because the adults are more fully committed to making it

work. This teen may decide to try to use her CI again as an adult, and do

very well at that time. I know I did not do well with my hearing aids as a

teen. I hated them. I put them up and didn't wear them again until in my

20's, at which point I did pretty well.

As most of us know, you have to be fully committed to making the CI work to

get the best results. I don't think very many would say that it's an easy

process, especially for someone who is prelingual or for someone who has

been deaf for a long time. I really believe that leaving a child with a CI

in an ASL only program is a mistake. Kansas School for the Deaf has a CI

program now, and it has a more oral approach for those students who have

CI's. They use ASL as more of a back up, to make sure that the kids don't

fall behind in their school work while they're learning to use the CI. The

best CI programs I've seen use simultaneous communication with CASE. This

provides that bridge between ASL and oral that helps the student to learn to

comprehend spoken English. It takes a very, very highly competent teacher

who signs fluently and knows how to provide lots of opportunities to build

language rather than just working on speech or listening skills. I believe

this is why you don't see very many of these programs. It's hard to find a

teacher that is good enough at both teaching and signing to make it work

like it should. Take me, for instance, I'm great at language development

and providing natural opportunities to build language, but my signing

stinks. Hopefully my signing will improve if I ever have someone to

practice with. But, I live in the middle of nowhere and nobody signs

outside of the school day. They really don't sign much during the school

day. The D/HH teacher in this area doesn't have any students who are Deaf,

and she covers seven or eight counties. She has one CI student, who is

using an oral/aural approach (first grade student). In the district where I

work, we have one deaf student and he hates to sign. He wants to use the

oral/aural approach. You probably already guessed it, he's a teenager. LOL

As noted, teens just want to fit in. He does well, though, probably

because his loss was progressive so he's learned to adapt as his hearing got

worse. I would love to see his parents look into a CI for him. I think he

would do extremely well because he remembers how things sound, he's a great

speech reader, and he wouldn't need extensive speech training because he

already has excellent speech. He's also highly motivated to function in the

hearing world. He tried attending the school for the Deaf, hated it, and

came home after one day. The teenage girl I was talking about had grown up

in a school for the Deaf and wanted her CI more so that she could live at

home instead of having to live at the school for the Deaf. When she still

had to live at the school for the Deaf, her motivation to use the CI was,

more or less, cut off at the knees. I will never really understand why her

parents made this decision because their home school district has a very

good D/HH program.

Beth

" Surviving a loss and letting go is only half of the story. The other half

is the secret belief that we will find, in one form or another, what we have

lost. And it is that potential, shimmery as a star on a clear night, that

helps us survive. " -- Chambers

[Guest guest]

Hi Pam,

I live in Eagle River, Alaska. I was implanted at Swedish Hospital

in Seattle on 11/3/05. Are you using Northern Hearing Services in

Anchorage for you mappings? I think they are very good. Yes,

Seattle has great shopping. Our hotel was two blocks from Macy's

and Nordstroms hi.

Best regards,

Jim

>

> Hi Beth,

>

> I guess part of having a CI is educating others about them.. but

it astounds me that some people just yawn and carry on without any

*awe* at all when I say " I used to be profoundly deaf and now I can

hear! " Those words are so astounding to me that I really expect

some " ooohhhhing " and " ahhhing " when I make that coment... but most

people just say " Oh that's nice.... " (smiles)

>

> It amazes me what some people take for granted!

>

> lol!

>

> I feel like my map is pretty good right now but still may stop in

at Virginia Mason someday just to have it checked out.. probably

wouldn't make a trip to Seattle just for that as I could almost buy

a new processor for what it would cost me to be in Seattle for a

week.. plane fare, hotel, dining out etc etc (I love to shop! :-)

>

> Pam

>

> ----- Original Message -----

> From: Beth Ward

>

>

>

> Pam,

>

> You're not alone in that. I've actually had doctors tell me

they didn't

> know what a CI is, and one of them was an ENT! Now that's

scary!

>

>

>

[Guest guest]

Hi Jim!

I'm in Anchorage and yes, I use Northern Hearing in Anchorage.

Great to meet you! My Surgery was done at Virginia Mason. November 2004.

I'm very happy with the CI... it's fantastic!

Pam

----- Original Message -----

From: ak_mustang2000

Hi Pam,

I live in Eagle River, Alaska. I was implanted at Swedish Hospital

in Seattle on 11/3/05. Are you using Northern Hearing Services in

Anchorage for you mappings? I think they are very good. Yes,

Seattle has great shopping. Our hotel was two blocks from Macy's

and Nordstroms hi.

Best regards,

Jim

[Guest guest]

Hi Pam!

It is nice to know there is another fellow Alaskan in the forum.

You are farther down the road with your CI than me. I have only

been activated for a little over a month. So far I am very

impressed with my CI. I know Northern Hearing usually uses Virginia

Mason, but my insurance company wanted me to use Swedish. I was

very happy with Swedish and my surgeon.

Jim

>

> Hi Jim!

>

> I'm in Anchorage and yes, I use Northern Hearing in Anchorage.

>

> Great to meet you! My Surgery was done at Virginia Mason.

November 2004.

>

> I'm very happy with the CI... it's fantastic!

>

> Pam

>

>

> ----- Original Message -----

> From: ak_mustang2000

>

>

>

> Hi Pam,

>

> I live in Eagle River, Alaska. I was implanted at Swedish

Hospital

> in Seattle on 11/3/05. Are you using Northern Hearing Services

in

> Anchorage for you mappings? I think they are very good. Yes,

> Seattle has great shopping. Our hotel was two blocks from

Macy's

> and Nordstroms hi.

>

> Best regards,

>

> Jim

>

>

>

>

[Guest guest]

Who was your surgeon at Swedish? I had surgery there to remove an acoustic

neuroma in 1994. Dr. Mangham was the surgeon and I know he is still

doing surgeries, including CIs.

Pam Savage (in Anchorage)

----- Original Message -----

From: ak_mustang2000

Hi Pam!

It is nice to know there is another fellow Alaskan in the forum.

You are farther down the road with your CI than me. I have only

been activated for a little over a month. So far I am very

impressed with my CI. I know Northern Hearing usually uses Virginia

Mason, but my insurance company wanted me to use Swedish. I was

very happy with Swedish and my surgeon.

Jim

[Guest guest]

Hi Pam,

My surgeon was Dr. May Huang. She does adults and children.

Jim

>

> Who was your surgeon at Swedish? I had surgery there to remove an

acoustic neuroma in 1994. Dr. Mangham was the surgeon and I

know he is still doing surgeries, including CIs.

>

> Pam Savage (in Anchorage)

> ----- Original Message -----

> From: ak_mustang2000

>

>

>

> Hi Pam!

>

> It is nice to know there is another fellow Alaskan in the

forum.

> You are farther down the road with your CI than me. I have only

> been activated for a little over a month. So far I am very

> impressed with my CI. I know Northern Hearing usually uses

Virginia

> Mason, but my insurance company wanted me to use Swedish. I was

> very happy with Swedish and my surgeon.

>

> Jim

>

>

>

[Guest guest]

Pam and Jim ...

My husband and I are a CI couple. We had the surgery done at Swedish Medical

Center/Ballard in Seattle. Our surgeon is Dr. Alan Langman.

JoLene

CII 3-13-02

~~~~~~~~~~~~

Hi Pam,

My surgeon was Dr. May Huang. She does adults and children.

Jim

>

> Who was your surgeon at Swedish? I had surgery there to remove an acoustic

neuroma in 1994. Dr. Mangham was the surgeon and I know he is still

doing surgeries, including CIs.

---------------------------------

DSL Something to write home about. Just $16.99/mo. or less

[Guest guest]

Hi JoLene,

Congratulations to you and your husband on the CIs. How are you

doing with your CIs? I was very happy with the care at Swedish

Medical Center. My surgery was done at the First Hill Campus.

Jim

> >

> > Who was your surgeon at Swedish? I had surgery there to remove

an acoustic neuroma in 1994. Dr. Mangham was the surgeon

and I know he is still doing surgeries, including CIs.

>

>

>

>

>

> ---------------------------------

> DSL Something to write home about. Just $16.99/mo. or less

>

>

[Guest guest]

Jim ...

Thank you. We're impressed with Swedish too. There are more than one

Swedish Hospitals in Seattle. I was surprised to learn the one downtown

Seattle where you went to also do CI's. Awesome! had his first implant

done at Virginia Masons in 1999 and then his CI failed few years later. He

went in for reimplantation at Swedish Medical Center/Ballard in 2004. Both

hospitals and surgeons at VM and Swedish are excellent. The only drawback we

have with Virginia Masons is that they only allow you to have one processor

where the other center will give you two. We feel having a 2nd processor as a

backup is very important.

Next month will be 4 years for me. At the time of 's first activation,

everyone said I should get one too. It wasn't an easy decision. I was born

deaf and was born hearing. I knew having a CI requires more work so I

wasn't ready for that. was lucky he had the auditory memory. Curiosity

got the best of me after listening to my husband's *CI Moments* for 3 whole

years. So it was my turn, I was ready but scared. Shortly after my

activation, my husband CI failed. It was very hard to watch him go backward

while I was doing wonderfully with mine. After his reimplantation & 2nd

activation, it turned out to be a success! Yay and *whew*! Now we both are

doing great with it. After 25 years of marriage as a deaf couple, the neatest

thing about us having a CI is that we can carry conversations in the dark!!!

We've never done that before! No more flashlights!

JoLene

CII 3-13-02

~~~~~~~~~~~

>>Congratulations to you and your husband on the CIs. How are you doing with

your CIs? I was very happy with the care at Swedish Medical Center. My surgery

was done at the First Hill Campus.<<

---------------------------------

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

[Guest guest]

Wow JoLene,

That is really neat. Thanks for sharing your CI story.

Jim

>

> Jim ...

>

> Thank you. We're impressed with Swedish too. There are more

than one Swedish Hospitals in Seattle. I was surprised to learn

the one downtown Seattle where you went to also do CI's. Awesome!

had his first implant done at Virginia Masons in 1999 and then

his CI failed few years later. He went in for reimplantation at

Swedish Medical Center/Ballard in 2004. Both hospitals and

surgeons at VM and Swedish are excellent. The only drawback we

have with Virginia Masons is that they only allow you to have one

processor where the other center will give you two. We feel having

a 2nd processor as a backup is very important.

>

> Next month will be 4 years for me. At the time of 's

first activation, everyone said I should get one too. It wasn't an

easy decision. I was born deaf and was born hearing. I knew

having a CI requires more work so I wasn't ready for that.

was lucky he had the auditory memory. Curiosity got the best of me

after listening to my husband's *CI Moments* for 3 whole years. So

it was my turn, I was ready but scared. Shortly after my

activation, my husband CI failed. It was very hard to watch him

go backward while I was doing wonderfully with mine. After his

reimplantation & 2nd activation, it turned out to be a success!

Yay and *whew*! Now we both are doing great with it. After 25

years of marriage as a deaf couple, the neatest thing about us

having a CI is that we can carry conversations in the dark!!!

We've never done that before! No more flashlights!

>

> JoLene

> CII 3-13-02

> ~~~~~~~~~~~

> >>Congratulations to you and your husband on the CIs. How are

you doing with your CIs? I was very happy with the care at Swedish

Medical Center. My surgery was done at the First Hill Campus.<<

>

>

>

>

>

>

> ---------------------------------

> Photos – Showcase holiday pictures in hardcover

> Photo Books. You design it and we'll bind it!

>

>