Cloggy

If it's a lot more specific..... They WOULD have everyone who failed..

BUT..

Get this: The Maude database has NO-ONE who never had a problem with Cochlear Implants..
And they have many that had a problem with CI. Had it fixed and now have NO problems...

SO... I urge you..
Find some positive news for a change..

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Deafness

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Bottesini

No, if it was more broad, it would have everyone. And I don't report the news, I only point out untruths.

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Foxrac

Welcome to Alldeaf forum.

Wow, you have similar experience as my mother did in 1989 after ENT specialist found that I was HoH but eventually became severely deaf after had bad infection in ears. The ENT specialist tried to convince my parent to implant me with CI, even without try hearing aids so my parent said no. After that, I got new hearing aids so worked okay until 1994 and not work anymore as my hearing loss moved to profoundly. I had some problems with physical and learning because I cannot walk so properly until 4 years old due to bad balance and cannot learn at all after try to instruct me to do it. In 1992, the specialist didn't recommended me to get CI, even they warned about I will have no benefits from speech therapy but my parent continued me to have speech therapy for no charge because took advantage of taxpayer funded Tricare to cover in full. The CI surgery was huge risk for me but not got CI until late 1990's. I started learn sign language from ASL to SEE to ASL because some public schools use ASL and some other use SEE instead. I cannot understand any of communication and rarely to communicate until I became preteen. I had huge communication deficit and hadn't get any good education.

I had speech therapy for 10 years but just nothing to help and I cannot voice any words, except for yes and no only. I tried to say no but some people don't understand me so I gave up. I rather to use sign, text or pen to communicate.

I don't know about situation with your daughter and I'm suggest you to find an ENT specialist who won't push your daughter to get CI but they will give a proper information about any risk, efficient, benefits, etc. I think it is good idea to have genetic testing. It is totally up to whichever is best for your daughter.

I'm sorry about you have hard time after found your daughter is deaf.

When your daughter start ready for go to school in few years so please take care of her education. It is very important that she must get a good education, regardless on language option to communicate. I was very behind because my parent didn't care about my education and it was extremely stress to caught anything so I don't have to live on certificate or special diploma that are automatically disqualify for college.

For me, if I have deaf child so I rather to wait until they get older and let them make a choice, however if insurance doesn't cover or only partially cover with over thousand dollars in medical debt so I will have to decline it. The insurance companies are getting more expensive and less coverage than before.

I wish that my parent sends me to deaf school in 1993 instead go to special education at public school that which their education was very bad.

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In Moto We Trust

Foxrac

Could both of you get along?

This section isn't debate between ASL vs. oral and HA/CI vs. non-HA/CI, etc.

Just let DVroman7 to make decision with her daughter.

I don't understand why people attacked other people about HA, CI, ASL, oral, etc.

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In Moto We Trust

Foxrac

My friend - I advised you not tell anybody to ignore specific member's post because it isn't best way to say and you can get backfire from other members.

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In Moto We Trust

Cloggy

Everyone?
Why would someone without problems be in there...??? There are more CI-users NOT in there than there are in there....

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deafdyke

Ummmm we're talking MALFUNCTION,not just " doesn't hear as well as a good HOH user of an implant. I do remember back at Hearing Exchange they said that "sucess" meant different things for different people. For an extreme deep profound person, it might mean being able to perceive enviromental sounds, for another it might mean an increase in word perception scores and so on.
CI is basicly like HA. Some audilogically deaf people are functionally HOH with HAs (I know lots of people with profound and severe, and severe-profound losses who are HOH with hearing aids) and some of them are functionally HOH with CI.

CSign

Cloggy's post was about the Maude database...

deafdyke

FYI, very few Deaf people are against CIs any more. This isn't 1994 any more after all. Many Deaf people understand that at best they give HOH access to the hearing world.....Were you aware that Deaf people were against HAs when they were first introduced?
BUT, what you do not seem to understand at ALL is that HOH functioning is NOT new with devices. There were profound/ severe-profound and severe kids who were HOH with even the type of body worn aids that you saw at the oral deaf schools in the 20's and 30's. You also seem to assume that HOH= hearing. Yes, we can hear, and have pretty good speech perception, but that doesn't make us hearing by a LONG shot. Your daughter is still really young. Come back around 4th grade or middle school. I think you'll understand THEN why we're arguing for a bilingal approach, so that dhh kids have access to both Sign and Spoken language. They can take advantage of their nautral visual processing strengh, but ALSO be able to speak orally.
They can have a deaf boyfriend or girlfriend instead of being that weird kid with the weird speech, and they can take advantage of a wonderful vibrant community where they are not "hearing impaired" but DEAF!

CSign

DD- What you do not seem to understand is that Cloggy has made it clear that he knows that people with HA's and CI's do not "hear like hearing people".

The threats about 4th grade, and "just wait and see" are too much. Some of us are used to you writing that. However, if you say that to a parent of a newly diagnosed child...well, that would be incredibly discouraging and disheartening to them. Please, please, please stop making comments like that.

I also think his daughter is older than you believe her to be. She also appears to be thriving in her environment.

KristinaB

Why must we have this debate and such and a person's intro thread? I mean, the OP hasn't even come back to it.

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Taking life one day at a time.

LoveBlue

Do you blame her?

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Severe-to-profound hearing loss in both ears.
SD @ 100db L-88% / R-96% - unaided
Phonak Naida IX UPs

KristinaB

Not at all. This back and forth of all of this is just too much.

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Taking life one day at a time.

Cloggy

I doubt that the OP and the member that frist replied to the OP are for real....

So... Juist continue as you all were.. No harm done..

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Bottesini

See, we can have a meeting of the minds...

I think the OP was a fake also!

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CSign

I think most of us are in agreement on that one...

I stand by what I said though. For a legitimate newly diagnosed parent who is not informed about all things DHH, that would be very scary to continue reading "just wait and see" blah blah blah... That isn't encouraging, positive, or productive.

Bottesini

That's true.

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Cloggy

Food for thought...
DSCF38892 trimmed.mov - YouTube

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Cloggy

More food for thought

YouTube - Lotte in English, Nederlands & Norsk (Captionned)

YouTube - VIDEO0024.3gp ( Dutch, no caption)

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deafdyke

That's easy. B/c I'm HOH, and have pretty much dealt with the exact same stuff that CI HOH kids have dealt with. I talk with my orally raised CI and HA (and I have quite a few audilogically deaf HA users who were raised oral) friends, and they have dealt with the exact same stuff I have. Some of them are TEENS or little kids.....it's not just adults.

ContessaC

@DVroman7 - Sweetie, First of all let me say. I am SO sorry. Not because your baby is deaf, but because I understand the fear...the (sometimes) helpless tears when you think about your child's future and it is unclear.

Having said that, I am a mother of a BEAUTIFUL 5 year old boy who was born deaf. I will tell you what I tell others..."My child is perfect. My child can do ANYTHING your child can do...except hear, don't feel sorry for him" I have to give you major kudos for handling this without your baby's daddy. Seriously, hats off! Keep up with the gaining of info, it helps even if you don't realize it. I know there is a lot of info out there and as if evident by how crazy this thread got...their are many opinions and stances. The only who can decide which choice is right for your family, is you.

Here is the BEST advice I can hope to give you...and wish that someone had told me this before I began my journey with Conner....

1) Your baby is going to be FINE, she is going to be happy, smart and loved.

Here is a question for you...

- Have you ever met a deaf person? I mean, besides your daughter? For me, I don't really know WHY, but I was afraid to (I am ashamed to admit that now) Because of my own fear and ignorance it only made the weight of my fear heavier.

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~*~Contessa~*~

deafdyke

I think if more hearing parents realized "my kid can do anything except hear" we'd see a lot less grieving, and better decisions made by hearing parents.
I hate how parents mourn the "loss of a healthy normal kid", whatever that means. Dhh kids ride bikes, ski, think, earn ph.ds, write, cook, feed the cats and tons and tons of other normal activities. s for the label healthy...we're not sick, we're not patients. we simply cannot hear....and although we can't hear, we can adapt to that.

ContessaC

I honestly think that its a process. Parents of deaf children...are scared. Why? B/c for the most part ...the first deaf person a parent meets...is their own child. The doctors don't help either. Think about it, the first thing the doctor says is..."I'm sorry...you child(ren) has FAILED their hearing test" Right in that 1st sentence you have 2 negative words "sorry" as if being deaf is something bad or something to ashamed of and the word "Failed" WHAT?!?! My kid is already failing?!?!? I'm a terrible parent!!! I think that parents do need to mourn ---and then get the HELL over it and do the best things for the kid(s).

...Just my 2 cents

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~*~Contessa~*~

Cloggy

Interesting... a 35+ year old CI.
So.. He got it as a 5-year old child in 1977 or earlier...

Is it only me that has a problem with your imaginary friend that gives you "inside" information?

In 1977 CI just started.. and why do I have the feeling they did not implant children?
or this.

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Cloggy

How would be a good way to give that news?

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ContessaC

For a new parent? Possibly with a stiff drink!

But seriously? I don't think their is a "good" way to give that news. I remember when the nurse came in and told me about Conner...On the level, that lady almost got jacked. I remember my husband holding me back b/c I wanted to knock the teeth down her throat - How DARE she say that my beautiful baby was anything less than PERFECT!

But anyway...I think that the hospitals/doctors should have someone on hand or at least have some information to give out to parents so they can gain more information. I (and a few parents I've spoken to) were left with a TON of questions (none of which you remember to ask when you're sitting in front of the doctor b/c you're in shock) and too much contridicting information found online. Words like "Profound" and "ABR" terrified me in the beginning.

I remember saying to my sister, I wish they have a dummies guide to having a deaf child...b/c I felt like everyone around me (doctors/nurses/therapist) were speaking in another language. It made me feel even more alone, more vulnerable, and definately MORE stressed out...and it was all topped off with a good dose of post pardom depression.

I just think that when giving ANY news about children, doctors should come prepared with information that parents can take home when emotions aren't so high and look over. I think it would be an excellent idea to have deaf staff at more audiologist offices so parents can see active and contrubiting aspect of deaf culture. I remember having all these questions bombarding me..."What will Conner do for work?" "Who will marry and love my son, if he can't talk or hear?" (I am NOT saying these were rational concerns...just fears fed from lack of properly given information that could have been avoided)

...okay, I *think* I'm done ranting

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~*~Contessa~*~

deafdyke

Indeed the problem seems to be two fold....the fact that deafness is really low incidence, and the fact that its presented as a bad news sort of thing. Imagine if you got the news " hey guess what? Your child will be able to grow up bilingual and have the superpower of turning off their hearing. Here's a copy of the Silent Garden, info on American society for deaf children, asl resources etc etc etc.

deafdyke

Wanna know something cool contessa. My sister who has perfect hearing actually wants a deaf or hard of hearing kid. so do I. Heck, I think almost anyone who has ever met me would not feel sad if their kid turned out to be dhh. Haring parents have to understand that it's not the condition that's the problem...it's how society reacts to it. Heck, forty years ago being gay,lesbian or bi was demonized. My "second mother" has told me she was absolutely terrified to come out as a teen in the 70's. it took her a long long time to come to terms with it. she is now a very leftie type. Like you look at her, and you know shes GAY.She had a daughter, who came out at 15, and she thought that she was going to be one of those women who vacation in p town. Hannah was then really freaked out to realize she liked boys, when she was seventeen Most kids I know would have been really freaked out and agonized over being glb. ( bc it's so stigmatized)
Imagine if that sort of thing happened with dhh people. Imagine if hearing people didn't see being dhh as bad or a limitation or a deflect, but just another way of being.

ContessaC

I was shocked to discover that hearing loss/deafness is the highest birth "defect" (yes, that is how it was presented to me) in the WORLD.

@deafDyke - forgive me I don't know your name (sorry) But I think you're right. Imagine...perception is key. I think that if we could change the presentation of deaf/HoH to the hearing world...the world can and WILL change. The world and society are ever evolving. Things change, people change and so do views... Sometimes, we need to help them change and "nudge" them in the right direction.

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~*~Contessa~*~

Cloggy

Not at all..
Reactions of parents differ.
With us, Lotte didn't hear anything, and doing the ABR finally gave us the official message.
But we already knew she couldn't hear. Like you I'm sure, we tested Lotte in many ways.
Thing is that some parents want to hear "All is OK." and I'm sure some are so eager for it that the message "you child is deaf" is devastating.
Again, for us, it was a relief to get it confirmed and start moving on.
I guess we started our process of grieving already before we got the official answer. Of course we were sad about it, but not devastated.

I agree that the message should be given in some private setting. We got the message in the hallway of the hospital. Very unprofessional.

The message "I'm sorry...you child(ren) has FAILED their hearing test" is in itself fine, but I can imagine that with your expectations at the time, the word "failed" triggered a reaction.
And of course children do not fail a hearing test.. unless they try to fake one.
"I'm sorry to tell you your child is profoundly deaf" might have been a better choice of words.

Regarding information.. I think that any information that is given at that moment is not relevant. You need time to process the information, even when it was expected like with us.
But soon after that it's time for action. Get info, visit other people. If that is organised well, it makes a big difference.

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