Re: Some basic questions, I think - LONG

[Guest guest]

Hi, Cherie,

I'm not as well-versed as some others on this list, but I'll attempt to

answer some of your questions!

on 8/13/05 11:10 AM, Cherie at cbagadiong@... wrote:

>

> Anyway, Grace will have an ABR hearing test in a week while she is

> under sedation. Do we get the results of that right after the test?

Yes, you should get these results right away.

> They will be doing ear molds too for HA's. How long does it take to

> get a pair of HA's? I'm assuming we are going to do loaners first.

> Do we rent these by the month? If Grace has SNHL, will HA's work for

> her? She's in the severe to profound range now.

You should be able to get hearing aids within a few days to a week; you can

try them out for 30-60 days before deciding to buy them. Or your audiologist

or local Children's Hospital may have loaners that you can borrow.

My son has a severe to profound loss, and has done very well with his aids.

Other children with less severe losses have had more difficulty. It all

depends on the child, which is why you get to try the aids. Sometimes one

pair will work better than another.

Why do

> kids lose their hearing? Has that been the case with your children

> or were they born deaf? Probably a mixture of both, I know.

My son was born with his hearing loss; some kids lose hearing later due to

many different issues. Your ENT should be able to help you determine what

kind of testing to do, if you want to know what is causing your daughter's

loss.

>

>I

> keep thinking that with HA's her favorite movies will just make more

> sense to her. But she doesn't know the language so will it frighten

> her? I just don't know what to expect or what HA's actually do to

> make you hear. Will she know her name is Grace when we call for her?

My guess is that she will remember some of the words she heard when she

still had hearing, and that she will remember her name and yours, especially

as you repeat them over and over.

>

>When we go to the store or out somewhere, I'm afraid I'm

> going to make her lose her self-esteem. She 3.5 so people expect to

> be able to talk to her and her to talk back. When they ask her

> questions, I answer for her or explain that she can't hear.

When my son was little, and people would ask him questions, I would always

feel obligated to explain that he couldn't hear, which is why his language

was so delayed. It's actually good for your daughter's self-esteem to see

you be so matter-of-fact about her hearing; then she won't be embarrassed by

it. Once she's wearing the hearing aids, it may become more obvious to

people why she isn't communicating the same way other kids her age do; then

you get to explain the aids!

>

> Is it

> sometimes the case that you use HA's until they're older and then do

> CI's, or is it apparent from the beginning that she may need CI's

> now?

This all depends on the child. If she doesn't benefit from the aids, and all

else looks good, she could certainly get a CI now. But there are other kids

who use aids for years before choosing to get a CI.

>

Cherie, you have a lot on your plate, but you've come to the right place for

answers, because there are plenty of people here who have walked this road

before. I hope they can answer your other questions as well.

Take care,

Stefanie

Mom to Ben, almost 7, severe to profound HOH, and Isabella, 10, mild loss

[Guest guest]

Hi Cherie.

Welcome.

I know how you feel. My son, , 6, started to lose his hearing

(for reasons unknown!) at the age of 2.9. By the time he was 4 he was

severe-profound. So we've done aids (2 sets) and implants (both

ears). I'll try to answer your questions as best I can, but mostly I

just want to say that I totally relate to the feeling of being

overwhelmed and the grief. Let me tell you, if you could lose weight

from crying, I'd be supermodel thin!! The good news is that it will

fade. I still have bad days, but they are few and far between. When

I get really down, I just make myself say, " I have at

home....he's not at St. Jude's Children Cancer Center, he's not at

Chicago's children's burn unit, he's not at a cemetary. He's gonna be

ok! " Litteraly, I would chant that....and it really did help.

Feel free to email me if you wish.

OK....answers.....

I'm not sure about the ABR or renting HA. We bought ours. Ear molds

takes about 20 minutes to make the mold and it's a wierd feeling for

sure. screamed and cried the first couple times and then just

loved it....the extra " Goo " he made into a rubber bouncy ball. Then

they send the molds away and you get them in about a week. If HA

don't work, you can be a candidate for CI. I'm not sure the

process...I think everyone is different. My very PERSONAL opinion is

that they are awesome!! loves them and they took his hearing up

to just a mild loss...almost normal!! We still have hearing

issues...noisy settings and such, but man, what a difference!

After got his first aids, we went outside and just sat. I'll

never forget it. He just sat really still and looked around. A plane

went by...he said.... " Mommy, is that a plane? " I said, " yes. " He

said, " I thought so...I remember that sound. "

Again....tears...could've lost 10 pounds right there. So it should

come back to her...like riding a bike!!

Don't worry about other people...people are always looking at

because of his implants...he really doesn't even notice it. I just

tell him to explain it to people....these are my cochlear implants and

they help me hear better. It's really no different than glasses. I

didn't make a big deal about them so he doesn't think they are a big

deal. I'm HOPING that in those 7, 8th grade years that he won't be

picked on because he's not self - conscious about them. I hope!!

We did our school's pre-school program that had another boy with a CI

in there. HE LOVED IT. Still did private therapy which was MUCH

better so it sounds like you are on the right track there.

As far as HA vs. CI, I'm totally for CI. I think they are easier to

deal with....no feedback like HA and in the long run if you may need

them, get it overwith now so they don't have to relearn things with

the different sounds of a CI...it doesn't amplify residual hearing, it

kinda creates a new type hearing.

I hope that helped you a little bit. This place is full of people who

will be a great deal of help for you.

Again, feel free to email if you want.

Hang in there. You sound like a great mom who is on the ball and

ready to help your child succeed...and that's really half the battle!!

mom to , 6, progressive loss 2.9, Right CI in 04, Left in 05

, 4, hearing and being such a good boy

, 9 months, hearing and already the queen bee

[Guest guest]

Hi Cherie,

Let me take each questions one step at a time. never had an ABR, so

I don't know if you get the results right away. Depending on where the hearing

aids are being ordered from it should take anywhere from 1 to 3 weeks. Molds

come back about a week after being made. You may be doing loaners if your audi

has them (not all places do). But once you get the aids you will have 30 days

to trial the aids and to decide if these work for her. (Very hard to do with a

young child. is 6 and still isn't giving us much info about the ones we

are trialing now). Our audi doesn't charge for loaners, not sure if that is

standard practice.

Yes, the aids will work for a SNHL, as this is the loss that has.

However, it's all depends on the child and their loss. 's has a moderate

loss. I know of kids with profound losses that do well with aids and others

that don't.

I don't know anything about the CI process as we don't have one and are no where

near to qualifying for one. The criteria for implant candidates seems to

constantly change. You would probably need to talk to an implant center to know

for sure if she would or would not qualify. If she gets no benefit from HA then

you could try a CI.

It's so hard not knowing what the future holds for our kids. I think many of us

here are just trying to do the best we can for our kids. I think part of a

child's success comes from parents who are willing to do whatever they can to

help their kids. Maybe that means getting private speech therapy, driving long

distances to get to an AVT therapist, or moving to a different location that can

offer better services. Whatever it is, when parents are involved the children

seems to do much better.

We didn't discover my daughter's loss until she was 2 1/2 because we thought she

could here. For my daughter she could hear....if you were close enough to her

or if the noise was loud enough. She had everyone fooled, and it was just luck

that someone finally asked if we had ever had her hearing tested. We are pretty

sure that was born with her hearing loss, but we have no way of knowing

for sure. There are various reasons for hearing loss to deterierate. All of the

kids that I know with deterierating loss seem to have Connexin 26. I think

there are also some syndromes that have deterierating loss as one of there

symptoms.

could watch movies but would only laugh at the physical humor. If it was

spoken, she didn't get it and would only laugh if we did. 3 years later,

still doesn't seem to really get most of the humor on TV unless she can see it

instead of hear it.

I don't think the language will frighten her. She once heard it, if she had

been speaking before. She may be shocked when she first hears it again, but I

don't think it would scare her. I can't say for certain that she will know her

name right away, but it would seem that it would come back quickly for her.

After was diagnosed and was wearing hearing aids, she wasn't that easy to

understand unless you were use to her. So often we would be out and about and a

sales clerk would ask her something that she should have known the answer for.

would respond sometimes in her gibberish if at all. I would answer for

her. Now as 6, I can tell you that her self-esteem has not been effected. She

goes up to people all the time and asks them questions and will basically talk

your ear off. I rarely explain to people that she has a hearing loss, unless I

felt it nessecary. Not because I was ashamed of it, but because I just didn't

always feel the need to get into that discussion. It's hard not to worry about

what others think. I'm plagued with it all the time with both of my kids. If

you are not comfortable with her " rude " sign language, maybe you could teach her

some simple signs to use to help her convey her thoughts until she is able to

use spoken langauge.

In her class, what mode of communicaiton do they use? You need to figure out

what YOU want for your daughter. Do you want her to be oral, use sign language,

cue, or a combination of those. If you don't care or let your school

know...they will do what they do with the other children and that may differ

from your goals. Your goals are not written in stone and can be changed as

needed, but it's something that needs to be discussed with your school.

I'm not sure which state you are in, but some states do offer finacial

assistance if you quailify. It's worth checking into, as some states are quite

generous.

You've certainly had a lot to deal with recently. In the beginning there are a

lot of appointments and phone calls, but they drop off after a while. After 3

1/2 years I only call the audi to make our bi-annual appointments and have

speech therapy once a week. And then every 4 months I have to jump through the

insurance hoops to keep the speech therapy. We only see our ENT once a year.

is a healthy child, so we are never at the ped for anything.

Debbie, mom to , 6, moderate SNHL and ,3, hearing....not listening

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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

Start your day with Yahoo! - make it your home page

[Guest guest]

Thank you for the information, Debbie. All these responses are so

helpful. I am very happy to hear (pun!) that HA's can work for kids

with SNHL. On Grace's hearing test sheet, that is what the

audiologist said she had. That concerns me. I guess the ABR will

give an accurate type of loss and to what extent.

I read more about CI's last night, and I have to say, they scare me.

I didn't know that it would ruin any residual hearing that may be

there. Since my Grace is only 3, how do we know what's going on in

her head and who are we to ruin any hearing that she may have? But I

do want her to hear so if HA's are not working, we will look into

CI's. What is the failure rate for CI surgery?

My husband was under the impression that CI's are just the next step

up and that we would do that in a few years regardless. Like buying

a cheap bike first to get the hang of it, and then going for the

Lance Armstrong edition.

We are in Cincinnati and have a large Children's hospital network.

When you all talk about your 'audiologist', are you talking about the

person who gave Grace her hearing test? We are seeing an ENT who

specializes in pediatric hearing loss and CI's and I think I would

trust him more than the hearing test lady. I have to get a better

understanding of the different people involved.

Grace will go to our school district's preschool as a special needs

child. We have an outstanding school system, with the community's

full support and all the tax dollars that go with it. I've been told

that the preschool program is excellent and that they have several

children with HA's and CI's. Grace will have one of each of those in

her class with her. They use an FM system too. She will get one

hour of speech therapy per week plus everyone involved with Grace

will know her issues and will continue to encourage speech and

language in all activities. Our insurance also covers 20 (or maybe

30?) speech therapy appointments per year and we will use those this

year once we get her hearing.

I looked into a private D/HOH school for 3yo to 2nd grade. It's

$14,000 per year, and Grace would go for a full day, 5 days a week.

Is that too much schooling for a 3yo? Not that we could afford the

$14,000 anyway but should we be looking at bombarding her with school

right now? I was thinking that between her school (4 afternoons per

week) and home, she would learn language like any little person. By

listening to it, by reading books to her and pointing to pictures, by

telling her what everything is so she learns the names of things. Am

I missing something? Isn't that how my son learned to speak? I am

assuming all this based on Grace being able to hear again.

If Grace can learn to speak, is there a need to teach her sign

language too? Other than to help us during this interim period? We

want our daughter to be a hearing and speaking person if that is

possible. What is Cue teaching? Our ENT mentioned twice " if you

want Grace to hear, I'm very confident that HA's or CI's will work

for her " . Can I ask why a parent would NOT want their child to

hear? Maybe I am missing something. That seems odd to me.

Debbie, funny that you say can hear but doesn't listen. So

typical for 3-year-olds. I don't think listening has anything to do

with ears actually!

Thanks for all the help. I know I am asking way too many questions.

I fear the unknown so I want to know everything instantly and that's

just not possible!

Cherie

Mom of hearing , 6, and Grace, 3.5, severe hearing loss but

probably wouldn't be listening anyway!

[Guest guest]

In a message dated 8/13/2005 11:12:07 A.M. Eastern Daylight Time,

cbagadiong@... writes:

But she doesn't know the language so will it frighten

her? I just don't know what to expect or what HA's actually do to

make you hear. Will she know her name is Grace when we call for her?

She'll remember and she'll learn more. Ian loss was less severe, " only " 35

dbs when we learned of it, and his speech was clear as any hearing person, but

he had stopped whispering. I didn't realize that until after he was aided

and he started to do it again. It made me cry to hear him do that.

I doubt the words will scare her, and given how much music is included in

kids' shows, I would think she'd find the new sounds delightful.

The way aids have been explained to me follows -- and anyone/everyone is

welcome to correct me!

Hearing aids do a couple things. For our Ian, whose loss is conductive, it

basically makes it louder to push the sound through the middle ear and get

vibrations to the cochlea. Analog aids tend to have more of this loud power

where the digital ones can be powerful and as well as clearer. We're buying

digitals this time around.

For a SNL the aids take the individual frequencies that are affected, then

amplify as well as clarify them. For some SNLs the sound is distorted at the

affected frequencies. I am not sure how exactly the aids address/correct the

distortion, but I believe they do. Something to do with sound compression? I'm

not as clear on the SNL variations because up until recently Ian's loss has

been treated as simply conductive. I do know that there are seemingly endless

variations on what an SNL can be and it varies per person.

So, that's the basics as I understand them. Not terribly informative, and

I'm sure someone else out there can do a much better job of explaining it all

Best -- Jill (jillcwood)

[Guest guest]

Hi Cherie,

when we had our sons sedated ABR ...the technician confimed that day

before the appt was even over that my son was profoundly deaf and

then sent a letter explaining step by step the rsults...

we immediatley began the process for ear molds / bi-lateral hearing

aids...did this for 3 years with no progress...i was frightened into

a stand still with not moving on with the CI from his

audiologist...because of his views on it...and i didn't have the

internet at that time in our lives...

I seen a documentary on discovery health one day covering the

subject of CI's and i immediatley began phone calls and began the

process of the CI...in total from start to finish..for us it took

about 3 months before surgery date...it all depends on how fast YOU

move...getting the paperwork from everyone they need and then

sending it back...

I am just now able to breathe with a little more ease ...My son can

say words..he has been implanted a little over a year now..and i

have totally began my healing process from being so drained and

upset with the public school system..that I have moved my entire

family of 5 ...3 hours north of our home town...so that my almost 6

year old can attend Illinois school for the Deaf...I know that this

is going to be so rewarding ...for Dakota ( my son) and the whole

family because here we have already began to met with other familys

with the same loss and we can see that we have made the right

decision..

Guidish

Mommy to Dakota 5 CI (4-2004),Caitlyn 8 MSNL( will be recieveing HA

soon)Caralina 9 hearing

[Guest guest]

Cherie -

Since my Grace is only 3, how do we know what's going on in

> her head and who are we to ruin any hearing that she may have? But

I

> do want her to hear so if HA's are not working, we will look into

> CI's. What is the failure rate for CI surgery?

Depends on the severity of the loss. A mild loss will not qualify a

kid for a CI, but a severe to profound loss generally does.

>

> My husband was under the impression that CI's are just the next

step

> up and that we would do that in a few years regardless. Like

buying

> a cheap bike first to get the hang of it, and then going for the

> Lance Armstrong edition.

They are not really the next step up. The residual hearing is often

destroyed...in our case Hayley's loss was 120db in the left so it

wasn't affecting anything. More like, if you see no improvement with

hearing aids then you may want to consider a CI. There are some

really good high powered aids out there, which may negate the " need "

for a CI>

>

> We are in Cincinnati and have a large Children's hospital network.

> When you all talk about your 'audiologist', are you talking about

the

> person who gave Grace her hearing test?

Yes

We are seeing an ENT who

> specializes in pediatric hearing loss and CI's and I think I would

> trust him more than the hearing test lady.

Don't trust him only because he has MD after his name. But if you're

more comfortable with him and his reputation is better thats another

story. The audi and ENT should work as a team.

I I've been told

> that the preschool program is excellent and that they have several

> children with HA's and CI's. Grace will have one of each of those

in

> her class with her. They use an FM system too. She will get one

> hour of speech therapy per week plus everyone involved with Grace

> will know her issues and will continue to encourage speech and

> language in all activities. Our insurance also covers 20 (or maybe

> 30?) speech therapy appointments per year and we will use those

this

> year once we get her hearing.

>

> I looked into a private D/HOH school for 3yo to 2nd grade.

This sounds really good. After 6 years of this list, and 9 years of

PDHH, I can tell you that this is a lot to be offered. Parent FIGHT

for this type of classroom!

It sounds really good but only you will know for sure. I would try

that and then go for the private school later.

> If Grace can learn to speak, is there a need to teach her sign

> language too? Other than to help us during this interim period?

This is up to you. But I would not put off letting her soak up

language and giving her a means to express herself and to understand

what you want her to do. Telling her you want her to take a bath is

way better than dragging her into the bathtub and sticking her in.

We still, after 11 years, expect that Hayley knows what we're doing

and when she gets upset, we're like - no wonder. Nobody told her we

were going to go have pizza or going to have her cavities filled.

Talk about frustration and anger in a kid. And she's entitled to

it.

> want our daughter to be a hearing and speaking person if that is

> possible.

I wish you could meet some of the kids from WPSD. YOu would not know

that because they dont' hear - that they don't speak! They make

themselves very clear (WPSD is a deaf school in Pittsburgh).

What is Cue teaching?

It is a way to teach phonics, but others know more.

Our ENT mentioned twice " if you

> want Grace to hear, I'm very confident that HA's or CI's will work

> for her " . Can I ask why a parent would NOT want their child to

> hear?

If a parent is deaf themselves or part of the deaf community, spoken

language is simply not that important - but they might put an

emphasis on written English. Sometimes a child might have other

issues, like autism or something, and getting them to understand

might be more important than them learning to speak. Becoming " oral "

is very very hard work. A/V therapy is hard work. And sometimes a

child just does not have the propensity for spoken language, but will

express himself beautifully in sign. Sometimes a family will

think ...hmmm, can play soccer and he has fun and he does really

well, or he can go to speech therapy 2 times a week. So its also

about choices. There is a whole deaf community out there. My

daughter is part of it. There are many deaf people who identify

themselves as Deaf. With deafness, there is a whole entire range of

attitudes and customs and choices. Oral, A/V, Sign, PSE, MCE, ASL -

you name it. I think its all about choices and what's important to

families. My Hayley learns better visually. If she were only taught

auditorily, she would still be in preschool right now. You will see

that there is no one method, or the best method. But there are good

methods for individual children and individual families.

I know I am asking way too many questions.

Your questions are good. Don't worry and ask away. That's what we're

here for.

[Guest guest]

> The thing about a CI is that it is not a magic solution. The person

is still

> deaf when they are not wearing their CI. The implanted part of the

receiver

> gets its information from the external part. Without that external

part

> receiving the sound, nothing gets to the implanted part.

>

Last night on Discovery Channel they had a vignette on a boy getting

his implant. They showed the actual surgery...which I tried to watch.

Since Hayley did have this surgery, it was interesting.

I like especially Jill where you talked about this lady who was deaf

and signed and now implanted. 30 of the kids at Hayley's school, I

understand, now have CIs.

[Guest guest]

Hi Cherie!

I totally thought the same thing regarding losing residual hearing!!

It really scared me too. We kept him in hearing aids as long as

possible, unfortunately, his hearing deteriorated to the point that

the HA didn't help him as much as a CI would. And, by that point, his

residual hearing wasn't really there anyway. THAT is when you get a

CI...when HA don't help as much as a CI would because there isn't

enough residual hearing anyway...which makes the decision at that

point easier. Does that make sense?

And as far as hearing....well, she's three...she won't really hear, I

mean LISTEN for another year anyway. LOL Just teasing!!

Finally, you will NEVER be asking too many questions. That is why

Jill made this site.....and why we love her soooooo much!! ;p

Mom to , 6, progressive loss age 2.9, right CI in 04/left in 05

, 4, hearing and starting to LISTEN

, 9 months, hearing and chunky!