Re: thought i'd introduce myself

[Guest guest]

In a message dated 1/16/2004 12:42:57 AM Eastern Standard Time,

cupojoy@... writes:

> As you know our minds are

> spinning with a million questions, many with no answers. What does

> this all mean? How do we go forward? All the ifs, whys and whens. We

> have been inundated with information and are just beginning to figure

> it all out. Wow, what a journey we are on.

,

Welcome to the group. It is a strange journey and we've all had our version

of the trip. This is a good place to come. The people are helpful and they're

willing to share advice or just listen you vent.

So ask questions, ask for opions, ask about the options we've all faced and

what we chose and why ... there's a wealth of info here.

Best -- Jill

[Guest guest]

Welcome to the group.

Everything is going to be fine.

What state do you live in?

Take care,

>>

_________________________________________________________________

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[Guest guest]

Welcome to the group.

Everything is going to be fine.

What state do you live in?

Take care,

>>

_________________________________________________________________

Scope out the new MSN Plus Internet Software — optimizes dial-up to the max!

http://join.msn.com/?pgmarket=en-us & page=byoa/plus & ST=1

[Guest guest]

,

The good news is that you are doing the toughest part now, learning about what

to do, how to do it, who to use. You will adapt and handle any challenges that

come along the way.

A great resource for us when we started this journey 2+ years ago was Sue

Schwartz's book " Choices in Deafness " . From there, we were able to determine

what methods we wanted to investigate further, and worked with the state Dept of

Public Health to determine what parent/infant programs existed in our area. Our

local early intervention office did not provide the kind of services we wanted,

so we worked with them to contract with a private auditory-verbal therapist.

Hadley is now 2 yrs and 4 months with a severe bilateral loss (70dB right, 75dB

left) due to Connexin 26. She was aided at 6 months, began auditory-verbal

therapy the very next day, and switched to digital hearing aids at 2 years. Our

last language assessment was done at her second birthday and she was clocking in

with the language of a 3 1/2-4 year old. She sight reads about a dozen words.

She tells detailed and complex stories. In short, she has normal, natural

development despite her significant hearing loss.

Good luck with this; you're taking the right steps!

Kerry

Mom to Hadley, 2.4, severe bilateral loss, Cx26, Siemens Triano aids, AVT

thought i'd introduce myself

Hi!

My name is and today I was accepted into the Listen Up

group...Thank you. This week it was confirmed to my husband and

me what we already suspected, that our sweet 3 1/2 month old daughter

is deaf. She has profound hearing loss. As you know our minds are

spinning with a million questions, many with no answers. What does

this all mean? How do we go forward? All the ifs, whys and whens. We

have been inundated with information and are just beginning to figure

it all out. Wow, what a journey we are on. I also have a (nearly)

2year old...who can hear but not obey!! Thank you for sharing your

knowledge and your life with us.

With hope,

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

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

[Guest guest]

,

Welcome to the group. I understand the overwhelming feelings that go along with

this, you feel like there is so much to know and find out but you feel like you

don't know anything. The good news is she is really young and you have time to

learn. I have a friend who's son is profoundly deaf, but they didn't find out

until he was older. The thing is they had been using baby sign with him since

he was very young. There is some that are called Sign With Your Baby that is

based on ASL, there is also English sign and cued speech. ASL is aimed at the

deaf, and meant to be it's own language not an English substitute, but once you

learn it speaking and signing becomes a lot easier. English sign is an exact

translation for English, they use words that are hard to understand for deaf

children, but if your goal is to have your daughter speak then it often works

great for them, because they learn the grammer of English. Cued speech is a

series of cues to help the deaf person understand what they are hearing with

amplification, that usually requires some residual hearing with or without

amplification.

Once you decide what your goals are for her you can move ahead and learn that

method. I suggest some form of visual communication even if you do plan on her

being a speaker, because it can really help. My friend who has the deaf son who

had no residual hearing with aids even, got a CI at one point, he was a little

older at 2 even though they had been trying for a long time his head is rather

small and they couldn't do it sooner. He now is 6 and he signs but he also is a

great speaker. The thing about a CI is, they can't hear it when it's off. They

can't wear it to bed, or they can't get it wet, so there are going to be times

when you have to communicate even when they can't hear. I think you should

seriously look into the CI, she is so young they could plan on doing it really

early and she would pick up speech really quick.

My situation is a little odd. My son has a mild high frequency hearing loss,

but doesn't understand any speech. He recently said his first word and I am

really pushing for an FM system to help him to get more. He knows some sign.

Because he has a lot of hearing even if it isn't very functional we chose a long

time ago what is called Total communication. Speech and sign. will use

sign more efficiantly for now, but I won't give up on the idea that he can use

his hearing which is why I am pushing so hard for an FM system. So while

has a mild hearing loss I consider him deaf since he doesn't understand anything

he hears, he can't use his hearing functionally. He is considered to have a

neural hearing loss, which is basically hearing loss of the brain, the brain is

not picking up the sound, and what sound it does pick up is severely distorted.

My view is to do whatever is going to make most comfortable in the future.

I don't want him to struggle as a speaker, and yet I do want him to speak so

this is why sign is our main priority right now. Once he gets that down I will

work on someone helping him use his hearing to understand what he is hearing.

The problem is because his loss only shows up on ABR the insurance companies and

state don't want to provide him services as a hearing impaired child which is

what AVT is and anyone who knows how to teach deaf children how to talk is what

we need but again we don't qualify for those services.

There are plenty of books out there that you could read through to decide what

mode of communication to go with. Also research on hearing aids and cochlear

implant's would be something that you should look into.

First thing is first, you got it really early and have time to let this all

process and decide how to move forward, so try to relax just a little. I know

that it's really hard to think that your daughter can't hear, but at some point

this will all seem so normal.

thought i'd introduce myself

Hi!

My name is and today I was accepted into the Listen Up

group...Thank you. This week it was confirmed to my husband and

me what we already suspected, that our sweet 3 1/2 month old daughter

is deaf. She has profound hearing loss. As you know our minds are

spinning with a million questions, many with no answers. What does

this all mean? How do we go forward? All the ifs, whys and whens. We

have been inundated with information and are just beginning to figure

it all out. Wow, what a journey we are on. I also have a (nearly)

2year old...who can hear but not obey!! Thank you for sharing your

knowledge and your life with us.

With hope,

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

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

[Guest guest]

,

Welcome to the group. I understand the overwhelming feelings that go along with

this, you feel like there is so much to know and find out but you feel like you

don't know anything. The good news is she is really young and you have time to

learn. I have a friend who's son is profoundly deaf, but they didn't find out

until he was older. The thing is they had been using baby sign with him since

he was very young. There is some that are called Sign With Your Baby that is

based on ASL, there is also English sign and cued speech. ASL is aimed at the

deaf, and meant to be it's own language not an English substitute, but once you

learn it speaking and signing becomes a lot easier. English sign is an exact

translation for English, they use words that are hard to understand for deaf

children, but if your goal is to have your daughter speak then it often works

great for them, because they learn the grammer of English. Cued speech is a

series of cues to help the deaf person understand what they are hearing with

amplification, that usually requires some residual hearing with or without

amplification.

Once you decide what your goals are for her you can move ahead and learn that

method. I suggest some form of visual communication even if you do plan on her

being a speaker, because it can really help. My friend who has the deaf son who

had no residual hearing with aids even, got a CI at one point, he was a little

older at 2 even though they had been trying for a long time his head is rather

small and they couldn't do it sooner. He now is 6 and he signs but he also is a

great speaker. The thing about a CI is, they can't hear it when it's off. They

can't wear it to bed, or they can't get it wet, so there are going to be times

when you have to communicate even when they can't hear. I think you should

seriously look into the CI, she is so young they could plan on doing it really

early and she would pick up speech really quick.

My situation is a little odd. My son has a mild high frequency hearing loss,

but doesn't understand any speech. He recently said his first word and I am

really pushing for an FM system to help him to get more. He knows some sign.

Because he has a lot of hearing even if it isn't very functional we chose a long

time ago what is called Total communication. Speech and sign. will use

sign more efficiantly for now, but I won't give up on the idea that he can use

his hearing which is why I am pushing so hard for an FM system. So while

has a mild hearing loss I consider him deaf since he doesn't understand anything

he hears, he can't use his hearing functionally. He is considered to have a

neural hearing loss, which is basically hearing loss of the brain, the brain is

not picking up the sound, and what sound it does pick up is severely distorted.

My view is to do whatever is going to make most comfortable in the future.

I don't want him to struggle as a speaker, and yet I do want him to speak so

this is why sign is our main priority right now. Once he gets that down I will

work on someone helping him use his hearing to understand what he is hearing.

The problem is because his loss only shows up on ABR the insurance companies and

state don't want to provide him services as a hearing impaired child which is

what AVT is and anyone who knows how to teach deaf children how to talk is what

we need but again we don't qualify for those services.

There are plenty of books out there that you could read through to decide what

mode of communication to go with. Also research on hearing aids and cochlear

implant's would be something that you should look into.

First thing is first, you got it really early and have time to let this all

process and decide how to move forward, so try to relax just a little. I know

that it's really hard to think that your daughter can't hear, but at some point

this will all seem so normal.

thought i'd introduce myself

Hi!

My name is and today I was accepted into the Listen Up

group...Thank you. This week it was confirmed to my husband and

me what we already suspected, that our sweet 3 1/2 month old daughter

is deaf. She has profound hearing loss. As you know our minds are

spinning with a million questions, many with no answers. What does

this all mean? How do we go forward? All the ifs, whys and whens. We

have been inundated with information and are just beginning to figure

it all out. Wow, what a journey we are on. I also have a (nearly)

2year old...who can hear but not obey!! Thank you for sharing your

knowledge and your life with us.

With hope,

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

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

[Guest guest]

,

I live in California...Oakland area.

>

> Welcome to the group.

>

> Everything is going to be fine.

>

> What state do you live in?

>

> Take care,

>

>

>

>

> >>

>

> _________________________________________________________________

> Scope out the new MSN Plus Internet Software — optimizes dial-up to

the max!

> http://join.msn.com/?pgmarket=en-us & page=byoa/plus & ST=1

[Guest guest]

Hi . My name is . I have a deaf son, . He was identified at

birth and it was confirmed at 2 months old that he had a severe to profound

loss. At 3 months he had hearing aids. I believe early intervention is key.

The fact that we knew so early and were able to adjust the way we communicated

with him really helped to foster language. We started with a total

communication approach, signing and speaking and being very expressive.

did receive

some benefit from his aids. He seemed to have a lot of receptive language

but was quite delayed in expressive. The funny thing is that now when I look

back I realize that my hearing impaired son was more advanced at 16 months old

than my now hearing son. My other son, , is almost 17 months and he

doesn't have any words yet. Anyway, was implanted at 20 months old.

Progress was slow and steady. As the months went by the language grew and these

days

it seems he is doing something new everyday. We are very proud of him and of

ourselves for all our hard work.

I joined this list shortly after was diagnosed and I had so many

questions. I just didn't know what to expect from this journey. I remember

wondering things like... how would I communicate with him? Would he ever speak?

Where would he go to school? Would he ever get married or have a girlfriend?

My

mind was racing. I don't even think of any of those questions anymore because

I am confident that will have numerous opportunities and will be

successful.

I spent a lot of time on the internet researching. I questioned all the

professionals. I always got second opinions. Sometimes I think my quest for

knowledge made it more confusing because I always questioned everyone's opinions

or advice. I had the background knowledge to ask the appropriate questions.

The professionals can sometimes be intimidated by this.

In the beginning things were very overwhelming, but I can tell you it gets

easier. Things are fairly comfortable now. Providing with a language rich

environment has come second nature to me that I don't even have to work at

it. It's just a way of life and has really benefited by it. Now my

biggest battles are dealing with his behavior. We are currently struggling to

find

ways to effectively deal with his non compliance, grabbing, pushing and

difficulties in learning to share and work with his brother and classmates.

is 3 years old and is now speaking in 5 - 6 word sentences. He is

learning new vocabulary everyday. I am often the only one who can understand

what

he says but I know that the articulation will come in time. What's important

is that he's communicating.

I wish you the best and go ahead and ask all your questions. That's what

we're here for.

's mom, 3 yrs, CI 7/30/02