Grandmother of 19 month old who is profound deaf

[Guest guest]

I would like to talk to someone who might be in my postion. My

granddaughter is 19 months old and we are going in June to talk about

the cochlear implant. We are so confused over all I have read. We have

all can of programs talking to us to the point where I don't want to

see no more of them. I want to talk to someone who has been through

all of this including financial and was it worth it. She is my world

and I want what is best for here even though she cannot tell me what

she wants.

[Guest guest]

and Cheryl,

I assume that these are your names as I deduced from your e-mail address.

Welcome to CI Hear. There are many parents and grandparents in your

situation, seeking information. This place is a good resource.

Another resource to consider is your local Graham Bell Association

state chapter or checked into their website (www.agbell.org) for the

parents' section page:

http://agbell.org/DesktopDefault.aspx?p=For_Parents & linkid=2

You can join a list serv of parents and grandparents (they recognize how

valuable support is provided by grandparents) and ask all these questions

that you've been burning to ask.

There's a state coordinator volunteer who would be very delighted to speak

with you on the telephone. I usually contact the AG Bell Association

directly with the person who is the liaison to the Parents' Section, and

you'll be able to find the name and number of a couple of parents in your

town or state who has already experienced this process with their deaf child

or grandchild.

Best of luck,

Lehfeldt

prelingual profound

N24C 10/04, Freedom upgrade 3/07

On Fri, May 9, 2008 at 2:56 PM, morrischeryl77 <morrischeryl77@...>

wrote:

> I would like to talk to someone who might be in my postion. My

> granddaughter is 19 months old and we are going in June to talk about

> the cochlear implant. We are so confused over all I have read. We have

> all can of programs talking to us to the point where I don't want to

> see no more of them. I want to talk to someone who has been through

> all of this including financial and was it worth it. She is my world

> and I want what is best for here even though she cannot tell me what

> she wants.

>

>

>

[Guest guest]

Hi Grandma,

It is a hard decision to make, but one your granddaughter will thank

you for IN WORDS once she has her implant.

Social security/Medicare or medicaid will cover implants for children

her age. Which device to choose is always a big decision. The

reliability record of Cochlear is unsurpassed. And they have a processor

style for children that fits on their shoulder so they don't have to wear

it behind their ears until they are older. The same processor converts

to behind the ear.

There are 4 channels to program the processor (programming is how they

get the right setting of sounds to allow a little one to hear.) And it

can be done without your granddaughter having to participate. There is

Neural Response telemetry built in that shows your granddaughter is

hearing.

The local school board will pay for your granddaughter to have speech

therapy and audio verbal therapy so she will learn to listen and speak.

And the sooner you have this done, the better, so she can catch up with

other kids her age and be speaking when it's time for school.

What I like about the Nucleus brand is that it uses either disposable

batteries (which are covered by insurance) or rechargeables. No other

brand does that.

It has many ways to program the processor, so each person's program is as

individual as their fingerprint.

If you want more information about Nucleus products, write me off

forum. I've had mine for 12 years now. Talk on the phone, understand

speech without lipreading, and function like a hearing person.

What Lehfeldt told you is also very good information. Do

contact the local AGBell association. The membership is free for the

first year for parents or guardians. They can give you lots of

information to help you get the services you need for your granddaughter,

and FREE of cost. Like the speech therapy and such. You just need to

know who to go to in the area where you live, and AGBell can give you

that information.

Good luck,

morrischeryl77@... morrischeryl77

Fri May 9, 2008 6:24 pm (PDT)

I would like to talk to someone who might be in my postion. My

granddaughter is 19 months old and we are going in June to talk about

the cochlear implant. We are so confused over all I have read. We have

all can of programs talking to us to the point where I don't want to

see no more of them. I want to talk to someone who has been through

all of this including financial and was it worth it. She is my world

and I want what is best for here even though she cannot tell me what

she wants.

[Guest guest]

Hi,

There are also support forums out there that tend to cater to parents

or as in this case, grandparents of deaf children, including some

that took or are contemplating taking the CI route for their deaf

child.

So, if you are out there reading this and has the info, feel free to

post them in here.

Dan

>

> Hi Grandma,

> It is a hard decision to make, but one your granddaughter will

thank

> you for IN WORDS once she has her implant.

> Social security/Medicare or medicaid will cover implants for

children

> her age. Which device to choose is always a big decision. The

> reliability record of Cochlear is unsurpassed. And they have a

processor

> style for children that fits on their shoulder so they don't have

to wear

> it behind their ears until they are older. The same processor

converts

> to behind the ear.

> There are 4 channels to program the processor (programming is

how they

> get the right setting of sounds to allow a little one to hear.)

And it

> can be done without your granddaughter having to participate.

There is

> Neural Response telemetry built in that shows your granddaughter is

> hearing.

> The local school board will pay for your granddaughter to have

speech

> therapy and audio verbal therapy so she will learn to listen and

speak.

> And the sooner you have this done, the better, so she can catch up

with

> other kids her age and be speaking when it's time for school.

> What I like about the Nucleus brand is that it uses either

disposable

> batteries (which are covered by insurance) or rechargeables. No

other

> brand does that.

> It has many ways to program the processor, so each person's program

is as

> individual as their fingerprint.

> If you want more information about Nucleus products, write me off

> forum. I've had mine for 12 years now. Talk on the phone,

understand

> speech without lipreading, and function like a hearing person.

> What Lehfeldt told you is also very good information. Do

> contact the local AGBell association. The membership is free for

the

> first year for parents or guardians. They can give you lots of

> information to help you get the services you need for your

granddaughter,

> and FREE of cost. Like the speech therapy and such. You just need

to

> know who to go to in the area where you live, and AGBell can give

you

> that information.

> Good luck,

>

>

> morrischeryl77@... morrischeryl77

> Fri May 9, 2008 6:24 pm (PDT)

> I would like to talk to someone who might be in my postion. My

> granddaughter is 19 months old and we are going in June to talk

about

> the cochlear implant. We are so confused over all I have read. We

have

> all can of programs talking to us to the point where I don't want

to

> see no more of them. I want to talk to someone who has been through

> all of this including financial and was it worth it. She is my

world

> and I want what is best for here even though she cannot tell me

what

> she wants.

>

>

[Guest guest]

or Cheryl or Cheryl,

My name is . I am 23 years old. I was also born profoundly deaf.

To be honest, I grew up in a deaf program while being mainstreamed full

time, all way through K to 12.

I want to emphasize that it is OK for your granddaughter to have CI, but

there is absolutely nothing wrong for you to place your daughter in a

deaf program. It will really impact your daughter emotionally in a

positive light.

I have know several people who were " CI'ed " when they were really little

when they did not understand anything. It really screwed their emotions

for a long time. So I feel that it is best to teach your daughter sign

language first and find out what she wants as soon as possible.

You and most of people may disagree with me but that is what I would do

for your granddaughter. While being able to hear is a great thing, just

don't mess around with your graddaughter's emotions...

I am pretty sure there are information out there about this... right

now, I would strongly suggest you to look up at

www.deafbilingualcoalition.com. If you have any questions, don't

hestitate to contact me! I may be young, single, and don't have a

family but I can find many kinds of information for you. I look forward

to hearing from you if you are interested.

Thanks,

--

[Guest guest]

Hi , and Grandma,

The advantage of implanting a child as young as 19 months is that she

will learn language at the same time as her peers. And I'm talking about

oralism, spoken language. Signing is a whole other thing, and in order

for her to communicate she will have to have someone else who also signs.

In most cases where a child is born with a hearing loss to a family

that is oral, they want the child to be oral as well. To speak, rather

than to sign. There is no problem with being bilingual, I would

encourage it. But since most of the people in this country speak rather

than sign, it would be to the child's advantage to having spoken language

skills, especially when she is older and trying to compete for jobs and

so forth.

Waiting until a child is old enough to make the decision herself is

allowing the window of opportunity to pass her by. There is a time span

- usually before age 3 - when spoken language is more easily acquired.

So letting her be without stimulation at that time, is going to make it

much more difficult for her to learn to speak at a later time.With the

Cochlear implant, she will hear and acquire spoken language at the same

time her hearing peers do. If she waits until she's 10 or 15, she will

have lots more work and struggle to learn to speak and hear and

understand spoken language.

My name is . I am 23 years old. I was also born profoundly deaf.

To be honest, I grew up in a deaf program while being mainstreamed full

time, all way through K to 12.

I want to emphasize that it is OK for your granddaughter to have CI, but

there is absolutely nothing wrong for you to place your daughter in a

deaf program. It will really impact your daughter emotionally in a

positive light.

I have know several people who were " CI'ed " when they were really little

when they did not understand anything. It really screwed their emotions

for a long time. So I feel that it is best to teach your daughter sign

language first and find out what she wants as soon as possible.

You and most of people may disagree with me but that is what I would do

for your granddaughter. While being able to hear is a great thing, just

don't mess around with your graddaughter's emotions...

I am pretty sure there are information out there about this... right

now, I would strongly suggest you to look up at

www.deafbilingualcoalition.com. If you have any questions, don't

hestitate to contact me! I may be young, single, and don't have a

family but I can find many kinds of information for you. I look forward

to hearing from you if you are interested.

Thanks,

--

[Guest guest]

Hi and Grandma,

I agree with . I am profoundly deaf since birth. When I got the CI

at age 46, I realized how much I was missing. For the first time in my

life, I was hearing high frequencies. Bird songs, squeaks of door hinges,

floor boards creaking, the rubbing of hands on clothes or skin, /s/ and /sh/

-- I struggled with speech therapy for years and years trying to say words

with /s/ and /sh/ phonemes correctly -- the CI enabled me to nail these

sounds down flat in seconds.

I think my life would have been easier if I had the CI in my first three

years of my life. I wasn't fitted with a hearing aid, which wasn't very

good to start with, until I was 3 -- and then I played 'catch up' in my

ensuing years. I didn't know ASL until I was 19 years of age.

Chris

prelingual profoundly deaf

On Mon, May 12, 2008 at 7:06 PM, M Jansen <nucleus24@...> wrote:

> Hi , and Grandma,

> The advantage of implanting a child as young as 19 months is that she

> will learn language at the same time as her peers. And I'm talking about

> oralism, spoken language. Signing is a whole other thing, and in order

> for her to communicate she will have to have someone else who also signs.

> In most cases where a child is born with a hearing loss to a family

> that is oral, they want the child to be oral as well. To speak, rather

> than to sign. There is no problem with being bilingual, I would

> encourage it. But since most of the people in this country speak rather

> than sign, it would be to the child's advantage to having spoken language

> skills, especially when she is older and trying to compete for jobs and

> so forth.

> Waiting until a child is old enough to make the decision herself is

> allowing the window of opportunity to pass her by. There is a time span

> - usually before age 3 - when spoken language is more easily acquired.

> So letting her be without stimulation at that time, is going to make it

> much more difficult for her to learn to speak at a later time.With the

> Cochlear implant, she will hear and acquire spoken language at the same

> time her hearing peers do. If she waits until she's 10 or 15, she will

> have lots more work and struggle to learn to speak and hear and

> understand spoken language.

>

>

> My name is . I am 23 years old. I was also born profoundly deaf.

> To be honest, I grew up in a deaf program while being mainstreamed full

> time, all way through K to 12.

>

> I want to emphasize that it is OK for your granddaughter to have CI, but

> there is absolutely nothing wrong for you to place your daughter in a

> deaf program. It will really impact your daughter emotionally in a

> positive light.

>

> I have know several people who were " CI'ed " when they were really little

> when they did not understand anything. It really screwed their emotions

> for a long time. So I feel that it is best to teach your daughter sign

> language first and find out what she wants as soon as possible.

>

> You and most of people may disagree with me but that is what I would do

> for your granddaughter. While being able to hear is a great thing, just

> don't mess around with your graddaughter's emotions...

>

> I am pretty sure there are information out there about this... right

> now, I would strongly suggest you to look up at

> www.deafbilingualcoalition.com. If you have any questions, don't

> hestitate to contact me! I may be young, single, and don't have a

> family but I can find many kinds of information for you. I look forward

> to hearing from you if you are interested.

>

> Thanks,

> --

>

>

[Guest guest]

Chris-

I realize that you missed a lot of things before getting implanted. I

realize that too. But what I was saying is that I support both ASL and

CI. I just don't like the idea of having a kid going through a horrible

pain when they don't understand it.

Despite the fact that you missed a lot of things, how did you feel being

the " odd man out " growing up?

--

[Guest guest]

and Grandma-

Yes, that is a great benefit. But don't forget the human right aspect

of this issue.

For Grandma- I understand you want to have your granddaughter implanted

so she can hear. But children can actually acquire language earlier

through sign language than through " spoken " language. For further

information, see www.babysigns.com and www.kidsign.com.

Back to -

Bilingualism is strongly encouraged. But it seems to me that you want

to put a resistance on learning sign language. You are right, not many

people sign. But come to think of this... why are French and German

offered at schools when nobody in the US really uses them, excluding the

government officials.

Many more jobs are opening up to people who know sign language. I know

for sure, FBI is one of them. Sign language also has contributed a lot

in the American history.

Who said that a child cannot learn to speak without a CI? I know some

Deaf individuals, emphasize the capital D, who actually speak very

well. They were actually told that they speak better than HOH/oralists,

WITH a CI or HA.

So, if the child is taught sign languge by 3, maybe they will be able to

decide whether or not they want CIs.

To me, this whole process seems like the newest version of

Americanization.

CIs may be very beneficial, but the child still may get isolated/mocked

because she will have this funny looking thing on her ear and head.

Kids may even call her " magnet-head " or other names that may really pull

her/hi self-esteem down. In the deaf community, deaf people really

don't care if your kid got implanted or not because they know that the

kid is still deaf.

Comparing deaf schools to mainstreamed schools- I have to say deaf

programs/schools are actually more exclusive than the general

population. Deaf programs/schools offer speech therapy. I was offered

one all way through K to 12, through the same deaf program my entire

life. NTID even offers it.

Although, the oral kid may be very successful academically, but how will

be they socially- and emotionally-wise because there won't be much

people around them who will understand their barriers? Deaf kids do.

Oral or not, all deaf individuals go through pretty much the same

thing.

Think about one of your biggest challenges ever and were there anybody

around you that understood you.

--

[Guest guest]

Seems to me that is using CI Hear, which supposedly is a CI

support forum, as a platform to propagate her thoughts, opinions and

beliefs as stated in her post below.

Admittedly, I lost track, but for starters, I wonder if even

has a CI to begin with.

Dan

>

> and Grandma-

>

> Yes, that is a great benefit. But don't forget the human right

aspect

> of this issue.

>

> For Grandma- I understand you want to have your granddaughter

implanted

> so she can hear. But children can actually acquire language

earlier

> through sign language than through " spoken " language. For further

> information, see www.babysigns.com and www.kidsign.com.

>

> Back to -

>

> Bilingualism is strongly encouraged. But it seems to me that you

want

> to put a resistance on learning sign language. You are right, not

many

> people sign. But come to think of this... why are French and

German

> offered at schools when nobody in the US really uses them,

excluding the

> government officials.

>

> Many more jobs are opening up to people who know sign language. I

know

> for sure, FBI is one of them. Sign language also has contributed a

lot

> in the American history.

>

> Who said that a child cannot learn to speak without a CI? I know

some

> Deaf individuals, emphasize the capital D, who actually speak very

> well. They were actually told that they speak better than

HOH/oralists,

> WITH a CI or HA.

>

> So, if the child is taught sign languge by 3, maybe they will be

able to

> decide whether or not they want CIs.

>

> To me, this whole process seems like the newest version of

> Americanization.

>

> CIs may be very beneficial, but the child still may get

isolated/mocked

> because she will have this funny looking thing on her ear and

head.

> Kids may even call her " magnet-head " or other names that may really

pull

> her/hi self-esteem down. In the deaf community, deaf people really

> don't care if your kid got implanted or not because they know that

the

> kid is still deaf.

>

> Comparing deaf schools to mainstreamed schools- I have to say deaf

> programs/schools are actually more exclusive than the general

> population. Deaf programs/schools offer speech therapy. I was

offered

> one all way through K to 12, through the same deaf program my

entire

> life. NTID even offers it.

>

> Although, the oral kid may be very successful academically, but how

will

> be they socially- and emotionally-wise because there won't be much

> people around them who will understand their barriers? Deaf kids

do.

> Oral or not, all deaf individuals go through pretty much the same

> thing.

>

> Think about one of your biggest challenges ever and were there

anybody

> around you that understood you.

> --

>

[Guest guest]

Yes I do, Dan.

--

[Guest guest]

Dan-

Let me add this one too... I'm a bilateral CI recipient.

--

[Guest guest]

,

Then why all this talk on trying to discourage a grandmother who came

here for support from implanting her deaf grandchild ?

That's equivalent to a grandmother of a deaf child going over to a

signing support forum to learn more about signs only to be told by a

member in there not to take the signing route and to take the CI

route instead. Think about that for a second.

Dan

>

> Dan-

>

> Let me add this one too... I'm a bilateral CI recipient.

> --

>

[Guest guest]

Dan-

I never said that the granddaughter should not get implanted... I was

simply suggesting that the granddaughter should be taught sign language

before getting implanted because I don't think its fair for a small to

be put through an unbearable pain, probably their first worst pain

ever..., when they don't understand the concept of " pain " .

--

[Guest guest]

,

Do you have a CI? Just curious. You have mentioned unbearable pain

frequently. I had very little pain. The first time, I used Tylenol 3 for

the first day but I'm not sure I needed it. I used it because the doctor

suggested it. I don't remember any pain the 2nd time around. I don't

recall using any pain meds after my 2nd CI surgery. I personally do not

have a high tolerance to pain, either.

From: [mailto: ] On Behalf Of

Sent: Friday, May 16, 2008 12:12 PM

Subject: Re: Re: Grandmother of 19 month old who is profound deaf

Dan-

I never said that the granddaughter should not get implanted... I was

simply suggesting that the granddaughter should be taught sign language

before getting implanted because I don't think its fair for a small to

be put through an unbearable pain, probably their first worst pain

ever..., when they don't understand the concept of " pain " .

--

[Guest guest]

Hallo there,

I hope you got some good answers in the meantime. My daughter was 15 months

old when we discovered that she was profoundly deaf. It was a terrible day

for my parents! They wanted to blame everyone and everything. My mother

even blamed me because we did not find out sooner. To decide to go ahead

with the implant is not such a difficult decision, pray about it, and you

will get your answer. But please do not go overboard with your advice. It

was the best decision to go ahead with our implant for our daughter, we will

never regret doing it, and I believe your children will make the right

choice.

I think you are a wonderful grandmother, for trying to find out all you

can. My advice would be to go ahead, it will not be easy but more than

worth it.

Good luck,

Altha

On Fri, May 9, 2008 at 8:56 PM, morrischeryl77 <morrischeryl77@...>

wrote:

> I would like to talk to someone who might be in my postion. My

> granddaughter is 19 months old and we are going in June to talk about

> the cochlear implant. We are so confused over all I have read. We have

> all can of programs talking to us to the point where I don't want to

> see no more of them. I want to talk to someone who has been through

> all of this including financial and was it worth it. She is my world

> and I want what is best for here even though she cannot tell me what

> she wants.

>

>

>

[Guest guest]

I remember when we found out about our son's deafness and I knew it was all

part of God's plan for us and it was not up to me to fight it. I also

remember when I was a kid growing up in OH how my grandma would bring me

home those little cards with the manual alphabet on and how I was fascinated

from an early age with sign language. It all just kind of fit! We made the

decision for the CI with our son, and while he is now interested in learning

SL so he can communicate with his deaf friends who don't have CI's, he has

so many options available to him that otherwise he maybe wouldn't have had.

I cannot understand why there is so much blame going around--luckily, I

didn't experience that with my family.

Good luck!

--

On 5/18/08, Altha Reinecke <altha.reinecke@...> wrote:

>

> Hallo there,

>

> I hope you got some good answers in the meantime. My daughter was 15 months

> old when we discovered that she was profoundly deaf. It was a terrible day

> for my parents! They wanted to blame everyone and everything. My mother

> even blamed me because we did not find out sooner. To decide to go ahead

> with the implant is not such a difficult decision, pray about it, and you

> will get your answer. But please do not go overboard with your advice. It

> was the best decision to go ahead with our implant for our daughter, we

> will

> never regret doing it, and I believe your children will make the right

> choice.

>

> I think you are a wonderful grandmother, for trying to find out all you

> can. My advice would be to go ahead, it will not be easy but more than

> worth it.

>

> Good luck,

> Altha

>

> On Fri, May 9, 2008 at 8:56 PM, morrischeryl77

<morrischeryl77@...<morrischeryl77%40>

> >

> wrote:

>

> > I would like to talk to someone who might be in my postion. My

> > granddaughter is 19 months old and we are going in June to talk about

> > the cochlear implant. We are so confused over all I have read. We have

> > all can of programs talking to us to the point where I don't want to

> > see no more of them. I want to talk to someone who has been through

> > all of this including financial and was it worth it. She is my world

> > and I want what is best for here even though she cannot tell me what

> > she wants.

> >

> >

> >

>

>

[Guest guest]

-

Yes, I am bilaterally implanted. I don't really remember saying

anything about being in unbearable pain but yeah I was. It was my first

major surgery ever and i am an accident prone. So I usually have a

pretty high pain tolerance. And I did take advil and tylenol I

believe. I also iced my head.

--

[Guest guest]

,

I just assumed you had unbearable pain since you had mentioned a few

different times about why put children through that unbearable pain. I'd

have to go look through the emails but that's not really important. I just

picked up on the comment and was curious if that was the experience you had.

Sorry, that it was like that for you.

If you don't mind, I would like to ask you a few questions. I'm curious as

to whether you like your CI's? Are you getting a lot of listening benefit

from them - meaning, do you hear only environmental sounds or can you

actually use your CI's for listening to conversation? If you're not

comfortable answering, don't feel obligated.

Take care,

From: [mailto: ] On Behalf Of

Sent: Tuesday, May 20, 2008 1:19 AM

Subject: Re: Re: Grandmother of 19 month old who is profound deaf

-

Yes, I am bilaterally implanted. I don't really remember saying

anything about being in unbearable pain but yeah I was. It was my first

major surgery ever and i am an accident prone. So I usually have a

pretty high pain tolerance. And I did take advil and tylenol I

believe. I also iced my head.

--

[Guest guest]

Speaking of the " Grandmother of 19 month old who is profound deaf " ,

what happened to the grandmother ? We haven't heard from her since

her 1st post ? Hope she didn't get discouraged from posting or

lurking in here in the forum ?

Dan

>

> ,

>

> I just assumed you had unbearable pain since you had mentioned a few

> different times about why put children through that unbearable

pain. I'd

> have to go look through the emails but that's not really

important. I just

> picked up on the comment and was curious if that was the experience

you had.

> Sorry, that it was like that for you.

>

>

>

> If you don't mind, I would like to ask you a few questions. I'm

curious as

> to whether you like your CI's? Are you getting a lot of listening

benefit

> from them - meaning, do you hear only environmental sounds or can

you

> actually use your CI's for listening to conversation? If you're not

> comfortable answering, don't feel obligated.

>

> Take care,

>

>

>

>

> From: [mailto: ] On

Behalf Of

>

> Sent: Tuesday, May 20, 2008 1:19 AM

>

> Subject: Re: Re: Grandmother of 19 month old who is

profound deaf

>

>

>

> -

>

> Yes, I am bilaterally implanted. I don't really remember saying

> anything about being in unbearable pain but yeah I was. It was my

first

> major surgery ever and i am an accident prone. So I usually have a

> pretty high pain tolerance. And I did take advil and tylenol I

> believe. I also iced my head.

> --

>

>

>

>

>

>

[Guest guest]

,

What brand are your CI's ? And is it the same in both ears ?

Dan

>

> Dan-

>

> Let me add this one too... I'm a bilateral CI recipient.

> --

>

[Guest guest]

Nucleus 24 Espirit 3G, both ears.

--