Re: Newbie . . .

[Guest guest]

Hi - I'm Barbara, mom to Tom who is 14 and Sam 11 (he'll be 12 on

Thursday!). They both are deaf and both have cochlear implants. Both

have been implanted for less than a year.

My son Tom recently earned his black belt in taekwondo. I couldn't stop

crying thinking how I worried about him and wondering if he'd ever be

able to communicate with us 11 years ago when he was diagnosed - and

how proud I am of both my boys. It has been a lot of work but certainly

worth it. You're so lucky that your little guy had the benefit of being

diagnosed as a baby and that you're being so proactive with him so early

on. And of course, HE's so lucky!

I'm so glad you found us!

Hugs,

Barbara in NH

Cantwell wrote:

> Hello.

> My name is and I am a hearing parent of a three month old

> recently diagnosed as having a bilateral hearing impairment. He has already

> received amplification (ear bobs, as we call them in our house) and we

> are starting the process of looking into cochlear implant surgery. Not

> sure if we will have both ears done . . . still need to research that

> issue.

>

> Oddly enough, my mother is hearing impaired as a result of

> contracting German Measles at an early age and receiving nerve damage. So, I

am

> not a stranger to dealing with hearing loss. However, I find myself

> having an extremely difficult time dealing with my son's impairment. Not

> because he is hard of hearing, mind you, but because of my fear of the

> unknown regarding his future. If anyone out there can give me some

> insight on getting rid of this anxiety, I would really appreciate it.

>

> Also, I've received information on facilities that perform the

> cochlear implant surgeries in the State of Florida, but if anyone has

> personal experience at a particular one, I would appreciate some input.

>

> Thanks for letting me vent.

>

>

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

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

>

>

[Guest guest]

Welcome ,

I live in Florida, in the Orlando area.

My son Caleb is 7 years old. He has a mild sloping to profound,

bilateral, SNHL, and wears digital hearing aids and an FM system.

I don't really have any advice on how to deal with your anxiety about

your son's future, but I can tell you about Caleb, and maybe that will

help you.

He is a first grader, who, although he still has some trouble with

language and diction, speaks fairly well and is beginning to read. He

loves dancing and music, and is taking drum lessons this year. He does

ballet, tap and acro dancing and this is the second year he's made the

" Pee Wee " competitive dance company at the studio where he takes dance

classes. He's been in several shows and competitions, and absolutely

loves being on stage. In Pee Wee class he's surrounded by girls, but is

so likable that he has managed to woo them into forgetting that he has

cooties. At church, he helps me lead the Sunday school music time. His

favorite past time (besides practicing cart wheels, and playing ball

with Dad) is to go to Disney and ride Space Mountain. He's currently

fascinated by Mummies and Sponge Bob, both of which he loves to draw on

the magnadoodle. And he's best friends with his older brother (even

though I hear, " 's bossy me again " three or four times a day.)

My message is that Caleb is a typical, happy, 7 year old boy who happens

to have hearing loss.

You sound like you are doing everything possible to help your little

guy; and you've found this awesome list, where others will write and

tell you their stories. Not to mention, they'll be here to listen and

empathize with you when you need to vent.

Again, welcome to the list.

God bless,

Emery

[Guest guest]

Hey ,

Glad you found the list serve. You will find a wealth of info here.

This list is a true gold mine when it comes to all things hearing

loss related. On an aside, I just met a 7 year old boy with a

profound SNHL loss. He is oral and uses hearing aids. Although

he's a candidate for a CI, he speaks and sounds like a typical 10

year old! Yes, I said he is 7--he is amazing!

My 2 yr old daughter has a mild/mod SNHL that was caught at birth--

she is our joy. Sometimes it is hard to remember that she has a

hearing loss, as she is doesn't seem to miss a beat.

I always tell newbies the same thing--trust your gut! When it comes

to your kid, you are the expert. What works for one HOH/D kid

doesn't always work for another. Although the members of the list

share in the fact that one or more of our kids does not have typical

hearing—each of our kids has different abilities and needs even

within the same category of hearing loss. So what works for one

kid, doesn't always work well for another. There are no hard and

fast rules, which can be both frustrating and liberating.

Best,

[Guest guest]

Thank you for replying, . Your E-mailed helped. Caleb sounds like an

extremely active boy!! I think I'm just feeling a little overwhelmed. This is

my first child also, so I'm dealing with new baby issues as well.

How old was Caleb when you discovered his hearing loss? Have you considered

CIs or are you satisfied with the digital hearing aids and FM system for school?

Have a good day.

Cantwell

Emery tanya@...> wrote:

Welcome ,

I live in Florida, in the Orlando area.

My son Caleb is 7 years old. He has a mild sloping to profound,

bilateral, SNHL, and wears digital hearing aids and an FM system.

I don't really have any advice on how to deal with your anxiety about

your son's future, but I can tell you about Caleb, and maybe that will

help you.

He is a first grader, who, although he still has some trouble with

language and diction, speaks fairly well and is beginning to read. He

loves dancing and music, and is taking drum lessons this year. He does

ballet, tap and acro dancing and this is the second year he's made the

" Pee Wee " competitive dance company at the studio where he takes dance

classes. He's been in several shows and competitions, and absolutely

loves being on stage. In Pee Wee class he's surrounded by girls, but is

so likable that he has managed to woo them into forgetting that he has

cooties. At church, he helps me lead the Sunday school music time. His

favorite past time (besides practicing cart wheels, and playing ball

with Dad) is to go to Disney and ride Space Mountain. He's currently

fascinated by Mummies and Sponge Bob, both of which he loves to draw on

the magnadoodle. And he's best friends with his older brother (even

though I hear, " 's bossy me again " three or four times a day.)

My message is that Caleb is a typical, happy, 7 year old boy who happens

to have hearing loss.

You sound like you are doing everything possible to help your little

guy; and you've found this awesome list, where others will write and

tell you their stories. Not to mention, they'll be here to listen and

empathize with you when you need to vent.

Again, welcome to the list.

God bless,

Emery

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

Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small

Business.

[Guest guest]

Thank you for replying, Barbara. is also my first baby, so I'm dealing

with all kinds of unknowns right now. Maybe that's why I feel so overwhelmed.

I'm sure everything will be fine, but I am glad I found this list. I'm

fortunate enough to be able to stay at home with him, so I will do everything in

my power to ensure he leads the life of any other child.

Happy birthday to Sam!

Have a good day.

Cantwell

Barbara Mellert Barbara.T.Mellert@...> wrote:

Hi - I'm Barbara, mom to Tom who is 14 and Sam 11 (he'll be 12 on

Thursday!). They both are deaf and both have cochlear implants. Both

have been implanted for less than a year.

My son Tom recently earned his black belt in taekwondo. I couldn't stop

crying thinking how I worried about him and wondering if he'd ever be

able to communicate with us 11 years ago when he was diagnosed - and

how proud I am of both my boys. It has been a lot of work but certainly

worth it. You're so lucky that your little guy had the benefit of being

diagnosed as a baby and that you're being so proactive with him so early

on. And of course, HE's so lucky!

I'm so glad you found us!

Hugs,

Barbara in NH

Cantwell wrote:

> Hello.

> My name is and I am a hearing parent of a three month old

> recently diagnosed as having a bilateral hearing impairment. He has already

> received amplification (ear bobs, as we call them in our house) and we

> are starting the process of looking into cochlear implant surgery. Not

> sure if we will have both ears done . . . still need to research that

> issue.

>

> Oddly enough, my mother is hearing impaired as a result of

> contracting German Measles at an early age and receiving nerve damage. So, I

am

> not a stranger to dealing with hearing loss. However, I find myself

> having an extremely difficult time dealing with my son's impairment. Not

> because he is hard of hearing, mind you, but because of my fear of the

> unknown regarding his future. If anyone out there can give me some

> insight on getting rid of this anxiety, I would really appreciate it.

>

> Also, I've received information on facilities that perform the

> cochlear implant surgeries in the State of Florida, but if anyone has

> personal experience at a particular one, I would appreciate some input.

>

> Thanks for letting me vent.

>

>

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

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

>

>

[Guest guest]

Hi, ,

I just wanted to welcome you to the list; these days I mostly just lurk,

partly because the rest of life has just taken over, and the hearing loss

issues are not first and foremost in my mind anymore!

I have two children: Isabella is 11 and has a mild hearing loss, discovered

after her brother was born. Ben just turned 8; his loss was caught with

newborn screening. At the time we thought it was moderately-severe to

severe, but it is now (and has been for at least 7 years) severe to

profound. His loss is the result of connexin 26 mutation, which is a

mutation that results only in hearing loss (no other issues), and can be

progressive, though it¹s not conclusive when or in which mutations that

happens.

Those first months/years were overwhelming, for different reasons. At first,

it was about the equipment and not knowing how he would turn out. Boy, would

I have loved a crystal ball! He got aids at 3 months, was enrolled in Early

Intervention which provided speech therapy, and I enrolled in a

parent-infant group so I could connect with other moms of deaf babies. I

also enrolled in the Clinic¹s correspondence course for deaf

babies, which gave me plenty of ideas on how to promote language learning. I

took ASL classes, and enrolled Ben in a Total Communication program, since I

didn¹t know how he would eventually want to communicate. It was overwhelming

and exhausting, and I had a 3-year-old to boot. I was on information

overload!

At 3, he entered the school system, still slowly picking up language and

talking more and more. He spent 3 years in a special hearing/speech/language

class, then a year in a transition class. This year he¹s in his second year

of mainstream elementary school, just started second grade, reads fluently,

plays chess, plays soccer/hockey/baseball (depending on the season), has

friends, teases his sister, and is the most normal, regular, annoying,

charming kid you could imagine. He wears digital aids (Phonak Savias) and

uses a personal FM in school and occasionally at home, is a CI candidate

though he does so well with his aids that it¹s still just in the back of our

minds. However, after listening to Barbara relate the stories of her two

guys getting implants, I have to say, the idea is moving closer to the

front!

There are days now when I have to tell Ben to ³please stop talking!² As it

turns out, after comprehensive testing, my son prefers to get his

information through his ears, so he doesn¹t read lips all that well, instead

turning his ear your way to clarify what you¹re saying. He is such a strong

advocate for himself, has such a sharp wit and winning personality, that I

no longer worry about his future. Only that I can survive his getting there.

I know that you will get to that point, too, no matter which path your son

ends up taking. Having a child for the first time is overwhelming enough;

trying to figure out a hearing loss on top of that just complicates things.

Take the hearing loss one step at a time, and come to this group whenever

you need to . And in the meantime, really enjoy your little guy, because

even though it¹s such a cliché, they do grow very fast, and he will be a

grown-up boy before you even blink.

Take care,

Stefanie

[Guest guest]

,

In answer to your questions, when Caleb was born, there were some

complications. He had to be on a high speed ventilator and he was given

numerous drugs. As he recovered, he was given the newborn hearing

screening and failed. Then he was retested at about 6 weeks old, and we

assumed he passed, because we never heard anything different. Like you,

we were dealing with a lot of newborn issues and then some, as I had a 2

year old at home as well, and Caleb still had some other health

problems. We were told to look out for hearing loss, but as many on this

list will tell you - children find ways to cope and we didn't really see

a problem until around 9 months old. My other son spoke very early - and

Caleb seemed to be trying to follow as his brother, but we couldn't

understand a word he said. And he didn't babble all of his sounds, just

mostly " GA " .

We basically got everything squared away by the time he was 18 months.

He was fitted with analogue aids and began speech therapy. We were told

his loss was only mild to moderate, and that he had " too much hearing "

for an implant. It took us two more years and several therapists, not to

mention, a new audiologist to discover that he loss was actually much

worse then we thought. At 5, we were able to get him new digital aids

and at 6, we got him an FM. (thanks to both sets of grandparents working

together!)

We have seen incredible improvement in Caleb's speech and language since

we got the new technology.

When we found out that Caleb's loss was mild to /profound/, I asked my

audiologist about an implant. Actually, I continue to ask every time we

go because I know that the technology keeps improving, and new things

are in the making. My audiologist feels that Caleb still has too much

natural hearing in the lower frequencies to warrant an implant.

(Here's the technical version, if you're interested :-) ).

On the audiogram, his loss starts at less than a 10 dB at 250 Hz, slopes

to about a 60dB at 1000Hz, then goes from 70 dB down to 100 dB from

1500Hz to 8000Hz. Also, he scores at about 85% on word recognition

tests, aided, in the testing booth, with no backround noise.

I think he needs to have lower scores to qualify for an implant.

So.............although some sort of implant is a probability in his

future, for the time being, I guess we're satisfied with his aids.

It is so wonderful that you are able to get your son the help that he

needs now, while he's so young. You are doing a great job!

God Bless,

[Guest guest]

I think it's impossible not to have fear of the unknown regarding your son's

future. I guess remembering that the future can be tomorrow and nothing else

could help, but I still sometimes get caught in the trap of trying to look all

the way to when Neal is 30 or 50 or 80... I can tell you that if you are going

to have a child with a hearing impairment, now is a pretty good time. You're

starting early, which is a plus. There was no newborn screening when Neal was

born and we didn't realize he was deaf until he was 1 1/2. He didn't get his

implant until he was a little over 2 1/2. Even so, he is in a regular 1st grade

class and has planted himself firmly at the top of it academically. He reads

above grade level, has no problems with math, and is on the 5th hundred sight

words along with only three other kids in his class (the other 16 kids range

from the first ten words to the 3rd hundred words). I don't know what will

happen in the future, but in the present, Neal is making it in school no

differently than his sister did.

Rhonda Savage

Mom to Audrey, 9 1/2, hearing; and Neal, 7, CII at 2.9 years

" Hard does not mean impossible. "

[Guest guest]

I'm , and I have 2 hoh sons, ages 14 and 11.

We call them ear bobs too. When we first got them, the boys couldn't say

'hearing aids'. My inlaws had always referred to earrings as 'ear bobs'. I

decided that since we already had a word for the dangly things worn from the

ears, 'earrings', that from there forward 'ear bobs' would have a new

definition: hearing aids.

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

From: " Cantwell "

Hello.

My name is and I am a hearing parent of a three month old

recently diagnosed as having a bilateral hearing impairment. He has already

received amplification (ear bobs, as we call them in our house) and we

are starting the process of looking into cochlear implant surgery.

[Guest guest]

Hi,

My daughter is three and we have always called her hearing aids her

" pretties " . We wanted to use a word that she knew that was positive. She

has had them almost a year and has always wanted to wear them. I think she

likes that we call them pretty.

>

>Reply-To: Listen-Up

>To: Listen-Up >

>Subject: Re: Newbie . . .

>Date: Mon, 2 Oct 2006 22:45:46 -0700

>

>I'm , and I have 2 hoh sons, ages 14 and 11.

>

>We call them ear bobs too. When we first got them, the boys couldn't say

>'hearing aids'. My inlaws had always referred to earrings as 'ear bobs'.

>I

>decided that since we already had a word for the dangly things worn from

>the

>ears, 'earrings', that from there forward 'ear bobs' would have a new

>definition: hearing aids.

>

>

>

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

>From: " Cantwell "

>

>Hello.

> My name is and I am a hearing parent of a three month old

>recently diagnosed as having a bilateral hearing impairment. He has

>already

>received amplification (ear bobs, as we call them in our house) and we

>are starting the process of looking into cochlear implant surgery.

>

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