NEW HERE/considering CI for 8yrs

[Guest guest]

Hello, I am a mother of a great 8yr old boy who was born profoundly

deaf. He had his first aids at 1yrs old. We have used total comm.

with him since then. He is in a great program and over the past 3

years with his digital aids has gotten some benifit.He actually says

things are too loud (which is why we find the aids turned all the

way down ).We see how well he uses the aids and it makes us wonder

more about how he'd do with an implant. We did have a evaul done and

they said he certainly would be a candidate.We still need the mri

and ct though. So now that much has been anwered.I quess i thought

if the aids gave some benefit that should be enough ya know should

we expect more? We are confused, he is doing so well now. He is

very bright does great in school etc. Would we be upsetting all

this? As of yesterday he is o.k. with possibly getting a CI.

I would love to hear from other's who have faced this question. Some

times it seems so simple yeah lets do it and then i think of other

reasons not to. AAGGHHH...thanks...Donna

[Guest guest]

Hi Donna,

My daughter is also 8 years old and has had a cochlear implant for 4

years now. This is a very difficult decision to make for parents.

Our dicision was a bit easier to make because my daughter had no

benefits with her aids, we had nothing to lose. Her audiogram was

identical with or without the aids which was nothing at 110db on high

frequencies and 85db on the 250 and 500 frequencies. Now 4 years

post implant her audiogram shows a 15 to 20db loss on every

frequency. That is a huge improvement for her. Friday she scored 96%

on an open set of words in a normal environment with some background

noise, 3 metres away, with mouth covered. It took her 4 years to get

to this point. She is prelingually implanted, at 4 she had no

speech. We used sign language before implantation and 1 year after

implantation she started school in an all oral school. She still

needs to work on her speech for it to be clearer but she is improving

every day.

In 1999, when my daughter was implanted they implanted only if there

was no benefits with hearing aids and now they think that the CI is

beneficial for people with a lesser hearing loss. My guess is if

your son is considered a candidate he would probably benefit from it,

but I don't know your son and only you as parents can make this big

decision. I can only tell you what it has given my daughter.

Best wishes,

Louise mother of (8, Clarion S Series) and Jessy (2, hearing)

> Hello, I am a mother of a great 8yr old boy who was born profoundly

> deaf. He had his first aids at 1yrs old. We have used total comm.

> with him since then. He is in a great program and over the past 3

> years with his digital aids has gotten some benifit.He actually

says

> things are too loud (which is why we find the aids turned all the

> way down ).We see how well he uses the aids and it makes us wonder

> more about how he'd do with an implant. We did have a evaul done

and

> they said he certainly would be a candidate.We still need the mri

> and ct though. So now that much has been anwered.I quess i thought

> if the aids gave some benefit that should be enough ya know should

> we expect more? We are confused, he is doing so well now. He is

> very bright does great in school etc. Would we be upsetting all

> this? As of yesterday he is o.k. with possibly getting a CI.

> I would love to hear from other's who have faced this question.

Some

> times it seems so simple yeah lets do it and then i think of other

> reasons not to. AAGGHHH...thanks...Donna

[Guest guest]

Thanks to all the replied to me, it feels so good to have others who

understand where im at. My son goes to a school for the deaf and

uses total comm. We have signed with him since 1yrs. If he is

implanted he would be fully supported there. I think he is a very

confident kid. He has a true sence of his identity as a deaf

person.He tests very well with his aids and FM unit. We know the

sound booth is not the real world though. With out his FM he is

down about 10-15 db,that puts him right under the speech banana.

He is profound in both ears. The Ci specialist did think he'd get

more benfit and that the CI would provide more comfort. What they

think may be happening is once hes at that threshold its very

uncomfortable. So if we could comfortably get him over that

threshold it would open him up to new sounds. I keep telling myself

if he hates it he will still have the one ear for a hearing aid.I

dont know how they decide which ear to implant but i beleive they

are both the same. I also have fears of how he will be accepted by

other deaf people. All's i know is we want the best for our son. We

dont feel we are trying to " FIX " him which is how some people view a

CI. I can handle any one who confronts me but i will beat up(not

really) any one who says anything to him! We are going to meet a

10yr boy who got implanted at 8yr i cant wait to talk with him.!I am

gathering as much info as i can ..i feel a little scattered though

and time is a issue. thanks again ...donna

ahoogroups.com, " Alice " <justagram@c...> wrote:

> Hi Donna,

>

> Welcome to the list. I congratulate you for coming here to ask

these questions. I know you are struggling because your son has

shown good use of his aids. I noted that you used the words " some

benefit. " Hearing aids can be loud and sometimes annoying but not

necessarily clear and that could be why he prefers them to be turned

down. All they do is increase the volume of your natural hearing.

You have a lot to think about and consider and have come to the

right place to ask.

>

> Let me ask you some questions which might help us to answer you.

When you had the eval done, did the center say that he would benefit

by the use of a cochlear implant? How much is he actually hearing

and is he maintstreamed into the school system or in some type of

special ed? It sounds as if he is doing very well in school and

that is an important piece of this equation. How does he feel about

his hearing loss and being around other children who hear normally

and with his hearing family members? What is his hearing loss in

both ears and how does he do in the testing booth with the aids on?

>

> These are just a few that I could think of. Others will certainly

join this thread with more input. I am convinced that a qualified

CI Center would not want to implant him if he is doing well with his

aids as they would rather allow him to hear with his own residual

hearing.

>

> If he is going to have a ci, he needs to be done as early as

possible so that he can adapt. It's much harder for an adult to do

this after years of severe to profound hearing loss.

>

> Alice

>

>

>

> I am a mother of a great 8yr old boy who was born profoundly

deaf. He had his first aids at 1yrs old. We have used total comm.

with him since then. He is in a great program and over the past 3

years with his digital aids has gotten some benifit.He is very

bright does great in school etc. Would we be upsetting all this? As

of yesterday he is o.k. with possibly getting a CI. Donna

>

>

[Guest guest]

In a message dated 11/24/03 6:15:51 PM, donnamriela@... writes:

> dont feel we are trying to " FIX " him

>

i agree a CI doesn't " fix " deafness my CI gives me more

opportunities in life it adds to my life i went from a black and

white

flat world to a 3D world of color this is how i see my own CI but

i'm still " that " deaf lady with all those kids who live in an old farm house

deaf i will always be my CI

allows for enrichment, depth, and sounds of bells ...

susan

[Guest guest]

Hello Donna,

Sorry it's taken me a few days to welcome you, but am behind as

usual.<smiles>

I know deciding whether or not to get a ci for a child is a difficult

decision and you want to do what is best for your child.

If the ci center said he's a candidate, chances are he would benefit

more from the ci than a hearing aid due to the fact that a hearing

aid only amplifies what he can already hear and a ci gives a whole

different way of hearing. If your son hears only a little, then that

is what is being amplified and it can get pretty annoyoing at times,

especially when you still can't understand what is being said and it

comes out a loud jumble of words that one doesn't recognise for the

most part. A least that's how it was with me)

Although it will take a lot of work and the implanted ear would need

to learn to hear all over again (much like a baby learning to talk)

if your son is going to get total support at his school, it might

make all the difference in the world. The support is a vital part of

the ci process, and the younger a child is when they are implanted,

the better chance they have at being successful. Granted, he may hate

the ci at first.. many will tell you that, but with patience,

persistence and practice, most have overcome that stage and are

totally in love with their ci.

Whatever your choice, I'm sure it will be the right one for your son

and as long as you are comfortable with your decision, that's what

counts.

Please keep asking questions. there's a lot of folks here to help you

along and I wish you all the best for your son to have this chance at

hearing.

Hugs and best wishes.

Silly MI

N24C hereditary progressive bilateral nerve deafness

10-31-01 implant date

11-26-01 activation date

[Guest guest]

Hi

Is it all right if I share your ci evaluation with my church? I have been

asking them for a long time to get me a sign lang interpreter but it doesn't

happen. I am sure they are expecting the ci to solve everything but it won't.

It will give me something extra to write about in my poetry!

Thank you for sharing that valuable insight!

Patty

> dont feel we are trying to " FIX " him

>

i agree a CI doesn't " fix " deafness my CI gives me more

opportunities in life it adds to my life i went from a black and

white

flat world to a 3D world of color this is how i see my own CI but

i'm still " that " deaf lady with all those kids who live in an old farm house

deaf i will always be my CI

allows for enrichment, depth, and sounds of bells ...

susan

[Guest guest]

i have to laugh which i should NOT do people's concept of deafness

often equates being deaf with not being able to think or do most anything normal

in life now it seems people hear of a CI and automatically think

everything is fixed!!! of geesh!!! whoever said this?? no one that i

know

of!

being able to hear is not the same as understanding what you hear or being

able to hear things clearly or understanding speech when i was hooked

up i did hear!!! oh wow and i thought it was heaven but i didn't

understand anything i heard and most of what i heard was variations of garble

i would think churches would be one of the few places that would go out of

their way to help a member i guess not huh? keep pushing for an

interpreter

you have a right to worship like other members good luck

susan

[Guest guest]

-that is a perfect way to describe what your CI does for you ! Thank

you so much!

-- In , stargazzingnite@a... wrote:

>

> In a message dated 11/24/03 6:15:51 PM, donnamriela@y... writes:

>

>

> > dont feel we are trying to " FIX " him

> >

> i agree a CI doesn't " fix " deafness my CI gives me

more

> opportunities in life it adds to my life i went from

a black and white

> flat world to a 3D world of color this is how i see my own

CI but

> i'm still " that " deaf lady with all those kids who live in an old

farm house

> deaf i will always be my CI

> allows for enrichment, depth, and sounds of bells ...

>

> susan

>

>

>