Re: speech

[Guest guest]

Michele,

If you are questioning to aid or not to aid. I would say your better to try

it now while Aubrie is still young. We tried to aid when she was

around a year. With all of the ear infections, it was impossible to find a

time that her ears weren't full of gunk and hurting. It was difficult to get

a good test on her because of the ear infections as well. There were other

health issues that I felt were more important and more life threatening so I

set the aids aside. I couldn't handle adding more stress to or

myself. Over the years, her hearing has always been in question. One test

will show profound, the next mild to moderate. (We are starting to think

that it is OVERLY selective hearing) Any way, last fall we had her fitted

again. She refuses to wear them. You can tell, when they are in, that she

is hearing different sounds, like the crickets and birds but it is so

overwhelming that she won't leave them in. I am finally able to get her to

wear them for 1 1/2 hours per day 3 times a week at most.

I wished I had stuck with the aids when she was smaller. Would it have made

a difference? I don't know. My advice (or opinion) is that if you are

questioning to aid Aubrie or not, I would do it. I wouldn't wait until all

of the sounds are so overwhelming that the aids become a struggle like

.

Sheryl, mom to Mitch 13 and 13 CHARGE

[Guest guest]

Michele,

Congratulations on the crawling first of all!! Woo hoo!! Kennedy is just

starting to pull herself up to her hands and knees. As for the oral/signing

thing (hot topic these days!! - so it should be) - Kennedy can say mama,

dada, papa, nana, ni-ni (for night night), bye bye, hi, ite (for light), and

probably a few others that I can't think of right now. She mouths a lot of

words I try to teach her (ie - more - she makes the " mo " look on her

mouth), and will usually try to mimic most any sign, with " light " and " more "

being her favorites at the moment. She probably can sign about 10 signs

right now. This is where we are at right now, hope this helps. I would

definitely go for the aid for Aubrie, it's worth a try and it might make a

world of difference, or it might not, but you won't know until you try! As

you can tell, this is something that is of concern to me as well, I really

want Kennedy to have some form of communication, whether it's sign, speech

or a combo of both. Whatever - just SOMETHING!!! Good luck, and the

parents of the older kids will probably be more help than I...

Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>First, after making you all jealous with our good fortune to have a

>Personal Assistant for Aubrie, I'll tell you that I just found out that

>our PA is leaving next month. She's going to work for a friend who's

>starting a new business. Back to the drawing board... it took me months

>to find Peg.

>

>My real purpose in writing is to ask about all the kids' speech. I was

>talking with our deaf therapist today about what to expect Aubrie's

>communication needs to be in one year when she's starting preschool.

>Aubrie's level of hearing impairment is still in question. Her best ear

>may have normal or near normal hearing. Her worst ear has mild-moderate

>loss. We haven't decided for sure if we will try an aid or not. Right

>now she is saying 3 words and signing 15 or so.

>

>What I am wondering is how many kids with CHARGE have speech as their

>primary communication? We talk about signing and deafness so much that

>I am assuming that all the kids are signing or atleast not speaking

>whether it's due to deafness, apraxia of speech, oral motor planning

>issues, or whatever. Maybe there are kids out there who speak well and

>I just don't know about them because that's not an issue we discuss. I

>am embarrassed to say that I didn't talk to any of the older kids enough

>to know how they communicate.

>

>I am so confused about the hearing aid or not issue and the

>communication thing. Thanks in advance for whatever words of wisdom you

>can share.

>

>BTW-- Aubrie is now crawling!! She can cross a room. She still chooses

>to scoot most of the time, but she can crawl when told to or when the

>situation requires it (like under something).

>

>Michele W

>mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

>westml@...

>

>

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

[Guest guest]

-

I think it's interesting how differently our girls are acquiring speech. Aubrie

is so much better with sign than speech

and yet she, presumably, has better hearing and has had more oral motor (atleast

feeding) experience. I forget what

Kennedy's hearing is with her aids. It's exciting that she is talking and

signing so much! That's a big improvement

just since July, isn't it?

I agree that I just want some kind of communication. But when I am trying to

figure out her needs for school, the type

of communication becomes an issue. I'm so confused about this that I've been

sitting here for a full minute not knowing

what to say next!! I've got to gather my thoughts and come back to it.

The aid issue is complicated by the fact that we're not sure if her best ear is

normal or not. Why would you put an aid

in an ear that's hearing fine? And if that one ear is hearing fine, is it

important to aid the other one? She's going

to hate everything about the aids, so why get into it if it's not absolutely

beneficial and important? To tell you the

truth, I've been going round and round on this for so long and gotten so much

conflicting advice that my head is

spinning.

Michele W

mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

-

Ok, I just read that Kennedy's hearing is 25db aided. Aubrie's is in

that range in her good ear without an aid. So seems to me she has the

potential to talk as well as Kennedy and yet she doesn't. Hmmm...

Michele W

mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

,

You met Aari in Houston, he has a mild (25-30db) loss in his right

ear and profound in his left (90-120+db) his primary mode of

communiation is speech with a back up in ASL. We aid his left

but that only brings it up to maybe 65db. He uses an FM system

in one class but not the other one, the one he uses it in is his reg

ed class where there are 20 other second graders and it just helps

him hear the teacher (opps.. he uses it in ST too).

Casey

Mom to Dawn 20 HH, Ken 10 ADHD, 7 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

re: speech

Michele:

These are a few quick ?'s for you to assess how your child is taking in

information. Every child will differ, so don't be disheartened when

comparing speech to Kennedy as there are many other skills to look at. If

there is sucess with alot of these ?'s without using aides, then it is

possible she may just need a sound filled environment to help her make full

potential use of residual hearing. Cognitive connections can be made about

the sound being experienced by having someone help her explore tactually and

visually the things that produce sound, including your own throat and lips.

Does she recognize sound vs. no sound in the envioronment ie. body reactions

differ when someone speaks, enters room, plays piano, etc. Does she turn to

sound input given from right, left, and above her? Can she localize sound

(know which direction to turn head to) from one foot, two feet, five feet,

ten feet? Will she search for sound source when source hidden. (hide toy

under pillow for example) Does she respond to a variey of sounds of

different toys? Variety of frequencies lets say in a bell pinwheel? Will

she respond to voiced speech initial sound presentations and try to imitate

them after being given, ( " ba ba " , " ma, ma " , etc...)? Do her other

vocalizations have recognizable speech sounds in them? Does she prefer or

recognize one familiar voice over another? Does she seem to respond to a

pattern on drum or pattern of speech, ie. move body, hand, head to a

rhythm? Will she startle to loud sounds? Does she activily seem to " look "

and " listen " when playing with a toy together that will produce sound?

Ann Gloyn, DB Specialist, Canada

>

>

> -

> I think it's interesting how differently our girls are acquiring speech.

Aubrie is so much better with sign than speech

> and yet she, presumably, has better hearing and has had more oral motor

(atleast feeding) experience. I forget what

> Kennedy's hearing is with her aids. It's exciting that she is talking and

signing so much! That's a big improvement

> just since July, isn't it?

>

> I agree that I just want some kind of communication. But when I am trying

to figure out her needs for school, the type

> of communication becomes an issue. I'm so confused about this that I've

been sitting here for a full minute not knowing

> what to say next!! I've got to gather my thoughts and come back to it.

>

> The aid issue is complicated by the fact that we're not sure if her best

ear is normal or not. Why would you put an aid

> in an ear that's hearing fine? And if that one ear is hearing fine, is it

important to aid the other one? She's going

> to hate everything about the aids, so why get into it if it's not

absolutely beneficial and important? To tell you the

> truth, I've been going round and round on this for so long and gotten so

much conflicting advice that my head is

> spinning.

>

> Michele W

> mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

> westml@...

>

[Guest guest]

Casey-

Why did you choose not to aid Aari's right ear? Just curious... Thanks

for giving me the rundown on him. It sure seems like there should be no

reason hearing-wise that Aubrie won't develop good speech. Of course,

who knows what other issues might be at play. After all this worry and

thought, she'll probably do wonderfully and I'll look back in a few

years and think it was all a waste.

Michele W

mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

Sheryl-

I was talking about getting kids used to aids this to our deaf therapist

and decided that we should have stuck a fake aid in her ear and

non-prescription glasses on her face from infancy since we knew this was

coming. Already it's a struggle to wear the glasses. I can't imagine

adding a hearing aid to that. As an infant, she tolerated the NG tape

on her cheek, so how back would an aid and glasses have been then. Of

course, like you said, it was not a top priority then, but I wish

someone would have told me what was to come.

Michele W

mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

Ann-

I think I could answer " yes " to all your questions. Aubrie uses her

hearing extremely well. She rarely shows any signs that she's not

hearing something, and then we don't know if it's just selective hearing

or a true problem. For example, she sometimes asks for more music when

her tape player is on, but I realized it may only be when the guy is

talking v. singing. So it's hard to say if she's not hearing the

talking or just doesn't like it and wants him to sing some more. She

overhears my conversations and signs the words she knows. She responds

to the TV and radio by signing words she knows and clapping with the

applause. She does appropriate movements to her favorite songs even

when we start the tape in the middle. She follows simple spoken

commands.

Michele W

mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

Hey Michele,

If Aubrie is like the rest of these CHARGErs, it seems that she just is

following her own time line. is jabbering more now then she ever has

and is saying and signing new words like crazy. She is 3 1/2. Just give

little Miss Aubrie every chance of communicating orally OR signed and she

will choose what she needs to do. Just my $.02

G

>

>Reply-To: CHARGEonelist

>To: CHARGE-List <CHARGEonelist>

>Subject: re: speech

>Date: Tue, 14 Sep 1999 21:35:14 -0500

>

>

>

>-

>Ok, I just read that Kennedy's hearing is 25db aided. Aubrie's is in

>that range in her good ear without an aid. So seems to me she has the

>potential to talk as well as Kennedy and yet she doesn't. Hmmm...

>

>Michele W

>mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

>westml@...

>

>

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

[Guest guest]

Michele,

We started with Signing as a baby/toddler. He went to a preschool

that was language based but the teacher would use visual and sign cues to

assist him. He has a lot of residual hearing. He has aids in both ears. In

the booth, he has tested down to 25db.

, now 7, is totally oral. He will occasionally sign but only words

like more, no, yes, and the like. The major issue for is to make sure

you have his attention and he can see your face (we have figured that he is

lip/face reading) and you can communicate with him.

Janet

Wife to Matt

Mom to & (CHaRGEr) 7, nne 2, and

Mom to 15 months.

Weymouth, Massachusetts, USA

[Guest guest]

Michele,

I give my son, a lot of credit for a lot of Kennedy's mimicking

abilities, which is probably why she is picking up more signs and speech.

He spends a LOT of time with her, and he even took a signing course at

school which was offered to kids, so he has a fair little amount of signs.

He is really great with her, and because of her mimicking him so much, she

tries to mimic me more now, and I think that's why she is getting some.

But, every child is different, and we don't know anything about their

possible speech " issues " yet. I wouldn't be worried about Aubrie's speech

yet, she probably communicates in many different ways, speech isn't the only

way. I have been taking a speech course and there's lots of things that

children do that we wouldn't probably even consider communication that are

indeed communication. I know how you feel when you get worried about the

whole communication issue, I feel after all the medical stuff, it's pretty

darn important for them to have an effective means of communicating. At

least we are " on to " this stuff early and doing all we can. I think that's

the best we can do for now..

Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>-

>I think it's interesting how differently our girls are acquiring speech.

Aubrie is so much better with sign than speech

>and yet she, presumably, has better hearing and has had more oral motor

(atleast feeding) experience. I forget what

>Kennedy's hearing is with her aids. It's exciting that she is talking and

signing so much! That's a big improvement

>just since July, isn't it?

>

>I agree that I just want some kind of communication. But when I am trying

to figure out her needs for school, the type

>of communication becomes an issue. I'm so confused about this that I've

been sitting here for a full minute not knowing

>what to say next!! I've got to gather my thoughts and come back to it.

>

>The aid issue is complicated by the fact that we're not sure if her best

ear is normal or not. Why would you put an aid

>in an ear that's hearing fine? And if that one ear is hearing fine, is it

important to aid the other one? She's going

>to hate everything about the aids, so why get into it if it's not

absolutely beneficial and important? To tell you the

>truth, I've been going round and round on this for so long and gotten so

much conflicting advice that my head is

>spinning.

>

>Michele W

>mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

>westml@...

>

>

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

[Guest guest]

,

ly it was money... no insurance for aids and his left need it

more... 25db loss is very minimal as 20db is normal... so we do it

this way.. he has an audiology exam every six months and if it ever

gets worse we wil also aid that ear..

And this year we are trying something new.. we are going to use

the FM system in both ears.. I just have to get a mold made of his

right ear and it hooks up to the FM system.

Casey

Mom to Dawn 20 HH, Ken 10 ADHD, 7 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

Michele:

Count me in as one of the ones who wishes I had aided my son sooner. 's

hearing loss was a mystery to all until he was about 2 1/2. At birth, he

tested profound, but by age 1 was testing mild to moderate bilaterally. Now,

we are pretty sure that his hearing loss is moderate at 50 to 60 db in both

ears. For a variety of reasons, I didn't push the hearing aids until he was

nearly 5 (denial, stress, resistance on 's part, etc). resisted

the aids at first, and I thought maybe he didn;t really need them because I

felt they were bothering them. I then decided to take a serious stance and

started a strict behavioral program to get him to wear them. Within one

month he was wearing them full time, and boy, what a difference. 's

hearing with the aids is in the normal range. I thought at first he would

start talking right away after being aided, but he has been aided for a year

and a half and is now starting to say a few words. He remains very delayed

in speech, but is really making some nice improvements lately. We introduced

sign language at about the same time that he started wearing the aids. I

bought a couple of ASL books at the time, and started teaching him some

signs, which he picked up rather quickly. He is now in a full time signing

program at school, and is signing pretty well.

However, even at this late stage in the game ( is 6 1/2), I still feel

that he is capable of having some speech. I feel that if I had pushed the

aids earlier, perhaps would be talking by now. I know I shouldn't beat

myself up for that, but I feel I heave really hindered his speech. I'm sorry

if this sounds disjointed, but my point is that the hearing aids can't hurt

if Aubrie is fitted properly and does not get too much amplification.

I also feel that in addition to the hearing loss probably has an

auditory processing difficulty, but that's another story.

Hope this helps in your decision making.

Ana Saruski, mom to , 6 1/2 CHARGE, and Jordan, 4

Miami Beach, FL

[Guest guest]

Ana-

You said you used a strict behavioral program to get to wear his

aids. Can you tell me more about how you did that? I need some

guidance about how to really *do* this -- with the aids and the

glasses. Thanks so much for sharing your situation with . I'm

already finding regrets (with my typical son, too) and have to remind

myself that we always do the best that we can at any given time. As

Oprah says, " When we know better, we do better. " Can't worry about the

times when we didn't know any better.

Michele W

mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

[Guest guest]

:

The approach I used with was to have him wear his hearing aids as a

condition to engaging in the activities that he wanted to do. For example,

if he wanted to go out I would sign, " First hearing aid, second go bye bye. "

I would the put the hearing aids on, and would get in the car. If he pulled

the hearing aid off in the car, I would pull over on the side of the road,

and go through the same routine. The first few days were pretty tough, but

after a couple of days he got the picture that he had to wear the aids if he

wanted to do the things he liked. It worked pretty quickly for us, and

believe me, can be VERY stubborn.

I must say that I didn't see much of a difference in his reaction hearing

things at a normal level for the first few weeks, but after that I began to

notice very significant changes in his respose to sound. Now, he is even

starting to respond to sounds when he is unaided, sounds he never responded

to before. I think that he now knows what to listen for, and turns his head,

for example, when I call his name in a normal conversation tone (Remember

's hearing loss is 50-60db bilaterally). Hope I've helped your dilemma.

Ana Saruski, mom to , 6 1/2 CHARGE, and Jordan, 4

Miami Beach, FL

[Guest guest]

,

I wanted to second something Ana said about noticing major changes in the

way they react to sound after they have had the aids on. Kennedy now

" hears " more, even when her aids are not on. I think having the aids on has

made her more aware of listening to sounds, even ones I don't think she can

hear.

Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>From: Anaesq@...

>

>:

>

>The approach I used with was to have him wear his hearing aids as a

>condition to engaging in the activities that he wanted to do. For example,

>if he wanted to go out I would sign, " First hearing aid, second go bye

bye. "

>I would the put the hearing aids on, and would get in the car. If he

pulled

>the hearing aid off in the car, I would pull over on the side of the road,

>and go through the same routine. The first few days were pretty tough, but

>after a couple of days he got the picture that he had to wear the aids if

he

>wanted to do the things he liked. It worked pretty quickly for us, and

>believe me, can be VERY stubborn.

>

>I must say that I didn't see much of a difference in his reaction hearing

>things at a normal level for the first few weeks, but after that I began to

>notice very significant changes in his respose to sound. Now, he is even

>starting to respond to sounds when he is unaided, sounds he never responded

>to before. I think that he now knows what to listen for, and turns his

head,

>for example, when I call his name in a normal conversation tone (Remember

>'s hearing loss is 50-60db bilaterally). Hope I've helped your

dilemma.

>

>Ana Saruski, mom to , 6 1/2 CHARGE, and Jordan, 4

>Miami Beach, FL

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

[Guest guest]

Our daughter, Hannah, is 4 1/2. She has profound hearing loss in lt ear and

mild in the rt. Her language is very, very good. Well, it is well above her

age level.

Very clear and expressive. People never believe she has deafness. We have

chosen to aid her with crossover aids. She also has a FM system. She uses

her aids in school. Does fine at home w/o them. She has an auditory

processing delay which seem to be a problem and we are working on this. The

aids were an option and I'm glad we chose them. Hannah says they really do

make a difference for her. How many kids out there have PE tubes to prevent

infections, not due to infections. Hannah has really only had a few

infections. Her tubes came out and the Dr sent us to get new ones and the

ENT said not to put them in. Lets just watch her and see how she

does.......any opinions out there????? I'm scared about future hearing loss

due to infections that go undiagnosed..... , wife of ,

mom to Hannah and (17 mths)

[Guest guest]

,

had tubes put in at 5 months when they repaired his cleft lip

as a preventitive measure for ear infections. He'd only had one ear

infection prior to that at 1 month. He is also weird in that those

tubes stayed in til he was almost 6yo. They have been out now for

almost a year and a half and hasn't had an ear infection.

Here's hoping you have a simular experience.

Casey

Mom to Dawn 20 HH, Ken 10 ADHD, 7 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

,

Crossover hearingaids are aids in both ears that are attached by a cord

behind the neck. She has the aid in the lt ear to pick up the sounds that

would normally come from that side. It transfers it over to the other ear.

It will help her in crossing streets and things like that. You can actually

wisper in her lt ear and she gets the secret!!!! When she wears the FM

system she only wears the rt with the antenna on it. As far as her ear

infections....no she is not easy to diagnose. She has gone in for hearing

tests and has been found to have an infection. The one plus is that our

audiologist is the wife of Hannah's agressive pediatrician. Plus she works

at Hannah's school and can check her if I need to. Next year she will

probably be in kindergarden and at a new school. I try not to worry about

the future but its hard not to with these kids....I don't think the ENT

realizes this, he probably thinks I'm another nerotic mother...OH WELL.....

[Guest guest]

How many kids out there have PE tubes to prevent

> infections, not due to infections. Hannah has really only had a few

> infections. Her tubes came out and the Dr sent us to get new ones and the

> ENT said not to put them in. Lets just watch her and see how she

> does.......any opinions out there????? I'm scared about future hearing loss

> due to infections that go undiagnosed..... , wife of ,

> mom to Hannah and (17 mths)

Hi !

had tubes in his ears because he had fluid which further

reduced his ability to hear. He had his first ear infection the day

before his tubes were scheduled to be replaced because they had

fallen out and he had fluid and reduced hearing again. They have

been out for nearly 2 years now and NO problems with fluid or

infections. He was only 2 years old when they came out. Every

kid is different, but there is a chance that Hannah would not need

the tubes again. We do need to monitor his ears for wax plugs

which also reduce hearing, but the fluid seems to be a thing of the

past.

Cheryl, , (6), (4, CHaRGE)

MI

[Guest guest]

In a message dated 09/14/1999 4:16:17 PM Pacific Daylight Time,

westml@... writes:

> Her best ear

> may have normal or near normal hearing. Her worst ear has mild-moderate

> loss. We haven't decided for sure if we will try an aid or not.

Michele,

We just found out that Destiny has about the same hearing as Aubrie. Before

we could get accurate results w/ headphones we thought her hearing was

mild/moderate loss in the right ear and moderate loss in the left. We put

aids on her and she has been wearing them consistently for 2 1/2 years. It

was when she was 4 we finally forced her to wear her aids all the time and

w/in a few weeks saw a BIG jump in her verbal ability. I didn't push the aids

sooner than 4 because it just wasn't worth the fight for me (probably not the

best decision for Destiny) and we knew she had some hearing w/o the aids.

Just last month we finally had a hearing test w/ the headphones on and it

showed very mild loss on the right (almost normal hearing she said) and a

moderate/severe loss on the left. W/o the headphones she was compensating w/

her right ear so the tests looked different. I asked the audio if we need to

adjust her aids and she said no, just let her turn them down--esp the

right--if she needs to. She's already doing that (no wonder my hearing

impaired child was saying everything was too loud w/ the aids in!). Now, I

let her set the volume where she needs it and don't give her a hard time

anymore when she adjusts them. (On a funny side note, a month ago the TV

volume was low. Destiny got confused and turned up her hearing aids until

they squealed. Then she realized it was the TV and not her!)

My advise to you is look into getting hearing aids. They certainly helped

Destiny even though her hearing loss is not that bad. Good luck w/ your

decision!

(Destiny 6 1/2 CHARgE, Zachary 4)

NYC

[Guest guest]

Patty wore hearing aids since she was around 2 or 3. She hated them,

they fell off a lot. I think she didn't like how they felt on her ears. We

got something, I think they were called huggies, which were clear circular

tubing you put the aide in and that kept them on her head. She did better

then. She still didn't like them but when you pick which battle you are

going to fight with the child, then you don't give up. She doesn't go without

them now-ever. It opened up more of the world for her.

I also had to keep an eye on her turning them off. She was such a

little bug, when I diciplined her she would turn them off. I thought she

couldn't hear me so I would talk right in front of her to read my lips. So

she would close her eyes. She was just a pip. I eventually realized she

could hear the Tone of my voice.

Otherwise, it wasn't long though that I realized even when she was little

that she needed control of the volume. Especially when there was fluid or

infected. She knew her hearing and what to do. Good luck, it's a tough

battle.

Bonnie

Bonnie

[Guest guest]

These children of ours have altered hearing; altered sight; altered touch

-proprioception, balance, co-ordination et al; altered taste ; and altered

sense of smell. These senses are all affected to varying degrees . What we

need to do is promote language by all and any of available means at our

disposal.

Warwick, Jackie ,Talisa 9 CHARGE and Alessi

>

>

>I appreciated hearing about Destiny and Patty's hearing. The

>overwhelming concensus on the list is to aid. Now I just need to

>convince myself and all the specialists involved that that's really what

>we should do for Aubrie. What a tough decision! This one's taking as

>much time for us as the Gtube/Nissen decision.

>

>Michele W

>mom to Aubrie (21 mos) CHaRgE and (7 yrs), wife to DJ, in IL

>westml@...

>

>

>>For information about the CHARGE Syndrome Foundation or to become a member

>please contact marion@....

Warwick, Jackie, Talisa and Alessi Burnham

[Guest guest]

Michele,

Is there a way you can test out a hearing aid for a couple of months to 1)

get used to the equipment yourself, 2) get Aubrie used to something new, 3)

see what you notice before making the committment to buy? We have done this

before for Austin. You may notice she seems to hear better or you may see

that it appears to 'hurt' her hearing by making it too loud. By providing

amplification, she may have a language growth spurt. Maybe she has some

muffled hearing right in the speech range. If she is anything like Austin,

she is very hard to accurately test. We just finally (last month and Austin

is almost 5) got a really good hearing test done. We know that with his new

aids he can localize to speech (and my cell. phone , it rang twice during

the test), toys, etc. It was so cool to see him search for soft sounds and

new sounds and familiar sounds and find them!!! With his aids, we've got him

hearing at a 25-30 db loss. We still have to find a way to get a little

better results but a lot depends on the fit of the earmolds.

I know for Austin his world has been more accessible with sound. When he was

having back to back ear infections, I am sure the child was in total silence.

He doesn't really speak yet, but he makes great sounds and does some

imitating, more with his new aids. I am hoping he will use a combination of

sign language and oral speech. We just offer anything we can.

Don't give up, you will come to the right decision and you will feel

comfortable knowing you looked at all options.

Good luck,

Jacque

Austin's mom