Grandma is living in denial

[Guest guest]

I'm so angry right now I could just cry!! Some of my family, my

mother in particular is in such denial that there is a hearing

problem with my 3 yo Stella. When she starts ranting about Stella

being just fine, I usually just tell her she is wrong and walk away.

But this morning I ended up lashing out in a loud and mean way. I

just couldn't help myself. Our Audiologist called and said her

hearing aids were ready, but there is a paper work problem with

Medicaid. I told them its ok, we've waited this long we can wait a

few more days until they work it out. (we weren't supposed to get

them for another 10 days anyway) I hung up and excitedly shared the

news that the aids were ready. My Mom says " I just don't understand

it, I don't see any problem " Me --- " NO YOU DON'T WANT TO SEE IT.

YOUR SO DEEP IN DENIAL YOU WON'T EVEN ACCEPT THE FACT THAT SHE DOES

NOT RESPOND TO YOU EVEN WHEN YOUR SCREAMING HER NAME!!! "

Mom got all offended and mad at me. But its true. You can

yell " STELLA " all day long and she won't turn to look at you!! There

are some sounds she responds to but not many and we've been told that

the loss is profound in both ears. How could two ABRs under sedation

and a sound test in a booth all be wrong?!? They just can't be

completely wrong!! I don't want her to be hearing impaired any more

than any body else. BUT I have to accept the fact that there is a

problem if we are going to be able to deal with it. I suspect there

is a processing disorder as well but we won't know until after we

get those aids working for her.(agenisis Corpus Callosum) Its so

frustrating!!

ALSO…. I've been having Georgia Pines come to the house and my Mom is

all weird about that too. She wants to side track the advisor with BS

that isn't even relevant to my child or hearing and then gets all

pissy when we ignore the distraction. I mean they are here to help us

with Stella not have tea and discuss the days events.

I'm about to lose my mind on a daily basis with this woman and I

don't know what to do. Its not just the hearing issue. Its EVERYTHING

about her that drives me crazy! She moved in with us about 6 months

ago and I just can't deal with her! Sometimes I feel like I'd be

better off pitching a tent in the yard and not even coming in the

house because I know she is going to just drive me up the $@%^&&!!

wall!!

I know I sound mean and harsh. If you knew my Mom you might

understand though. I hope its ok that I have ranted and vented here.

I just don't have many people that I feel comfortable talking to

about this stuff and I thought maybe somebody else could give me some

words of wisdom….

Thanks, Vicki (feeling very, very sad right now!)

[Guest guest]

Vicki

Wow, that is a tough one. I have a few thoughts (being new to the

hearing impaired world myself and having family members question the

diagnosis).

My son is 7 months old and has been wearing his hearing aids for a

month. When we first got the diagnosis at 5 months, everyone in

family (and my husband's) became expert audiologists overnight and

starting conducting " highly scientific " hearing evals on Andy. I let

it continue for a week or so because I thought they needed to do it

for themselves. Their consensus was that he was fine (so that

backfired on me).

Basically, when they would say, " I just can't believe he can't hear

us that well " (his loss is mild to moderate in one ear and moderate

to severe in the other). I would just agree and say something

like " I know it's amazing, I can't believe it either because he

responds so well at times. However, remember yesterday when the dog

was barking outside.... " By validating what they were saying then

giving them reminders of all the times he wasn't hearing, I think

allowed them to work through whatever their issues were without

constantly saying " you're wrong " .

The second thing we did, was bring my mom and mother-in-law to an

audiologist appointment so she could explain it to them and let them

watch Andy do a booth hearing test (we have a great audiologist!). I

also sat with them and explained the audiogram. I know you are

probably thinking well you have easygoing grandparents. Not so, my

mom and mother-in-law are not easily convinced of anything if they

don't want to be, especially if you are talking about a problem with

one of their " perfect " grandchildren!

The biggest change came of course when he got the aids. There was

such a big difference that they just couldn't deny that there was a

problem since he almost immediately became a different baby in terms

of interaction and babbling once the aids were in. They all can see

it and now marvel how we couldn't see the problem before!

I hope that when Stella gets her aids, your mom will see the

differences. She may never admit it but hopefully you'll see her

resistance go down. Also, just a bit of advice that you may or may

not like, I found that when I got both grandmothers involved in how

to put the hearing aids in and clean them, they immediately seemed

better - there may be some kind of fear factor there too. I think

this may be especially important since your mom is living with you.

One last thought - my mom let slip one time " I wonder if people

think it's our fault, like we passed genes down to you and then to

Andy " Both grandmothers are racking their brains to remember if

anyone in either family had hearing problems (none found yet). I

think there is a guilt factor too and that may be part of why your

mom is lashing out or not accepting it. Maybe she's worried, she's

somehow to blame. We are going through genetics to see if we can

find a cause but our doctors think it's going to be unknown, just

some kind of fluke. Once I explained to both moms that we most

likely won't find a definate reason, they appeared to relax some.

Then I followed with even if we find a reason, there's no one to

blame...

Hopefully, some of this will be helpful to you. Although we live

within 15 minutes of both grandparents and see them all the time, I

cannot imagine either grandmother living with us.

Keep your head up.

>

> I'm so angry right now I could just cry!! Some of my family, my

> mother in particular is in such denial that there is a hearing

> problem with my 3 yo Stella. When she starts ranting about Stella

> being just fine, I usually just tell her she is wrong and walk

away.

> But this morning I ended up lashing out in a loud and mean way. I

> just couldn't help myself. Our Audiologist called and said her

> hearing aids were ready, but there is a paper work problem with

> Medicaid. I told them its ok, we've waited this long we can wait a

> few more days until they work it out. (we weren't supposed to get

> them for another 10 days anyway) I hung up and excitedly shared

the

> news that the aids were ready. My Mom says " I just don't

understand

> it, I don't see any problem " Me --- " NO YOU DON'T WANT TO SEE

IT.

> YOUR SO DEEP IN DENIAL YOU WON'T EVEN ACCEPT THE FACT THAT SHE

DOES

> NOT RESPOND TO YOU EVEN WHEN YOUR SCREAMING HER NAME!!! "

>

> Mom got all offended and mad at me. But its true. You can

> yell " STELLA " all day long and she won't turn to look at you!!

There

> are some sounds she responds to but not many and we've been told

that

> the loss is profound in both ears. How could two ABRs under

sedation

> and a sound test in a booth all be wrong?!? They just can't be

> completely wrong!! I don't want her to be hearing impaired any

more

> than any body else. BUT I have to accept the fact that there is a

> problem if we are going to be able to deal with it. I suspect

there

> is a processing disorder as well but we won't know until after we

> get those aids working for her.(agenisis Corpus Callosum) Its so

> frustrating!!

>

> ALSO…. I've been having Georgia Pines come to the house and my Mom

is

> all weird about that too. She wants to side track the advisor with

BS

> that isn't even relevant to my child or hearing and then gets all

> pissy when we ignore the distraction. I mean they are here to help

us

> with Stella not have tea and discuss the days events.

>

> I'm about to lose my mind on a daily basis with this woman and I

> don't know what to do. Its not just the hearing issue. Its

EVERYTHING

> about her that drives me crazy! She moved in with us about 6

months

> ago and I just can't deal with her! Sometimes I feel like I'd be

> better off pitching a tent in the yard and not even coming in the

> house because I know she is going to just drive me up the $@%

^&&!!

> wall!!

>

> I know I sound mean and harsh. If you knew my Mom you might

> understand though. I hope its ok that I have ranted and vented

here.

> I just don't have many people that I feel comfortable talking to

> about this stuff and I thought maybe somebody else could give me

some

> words of wisdom….

>

> Thanks, Vicki (feeling very, very sad right now!)

>

[Guest guest]

Hi Vicki,

It will get easier for everyone. My father is 80 and he lives with us. He

also had a difficult time accepting that , 4yo, was deaf. 18 months ago

was diagnosed. She has had her processors for 13 months. At first my

father insisted that she heard! Eventually like maybe 6 months and after her

surgeries LOL he accepted she might have some hearing loss. Just yesterday my

dad asked if there was any chance her hearing might be improving! I said " Dad

I have told you several times the implants DESTROYED whatever residual hearing

she had! " Try not to look to your mother for support when it comes to the

hearing loss and whenever the opportunity arises bring her attention to times

when its obvious your little girl does not hear. I just wanted to let you know

you are not alone.

Blessings

Grandma is living in denial

I'm so angry right now I could just cry!! Some of my family, my

mother in particular is in such denial that there is a hearing

problem with my 3 yo Stella. When she starts ranting about Stella

being just fine, I usually just tell her she is wrong and walk away.

But this morning I ended up lashing out in a loud and mean way. I

just couldn't help myself. Our Audiologist called and said her

hearing aids were ready, but there is a paper work problem with

Medicaid. I told them its ok, we've waited this long we can wait a

few more days until they work it out. (we weren't supposed to get

them for another 10 days anyway) I hung up and excitedly shared the

news that the aids were ready. My Mom says " I just don't understand

it, I don't see any problem " Me --- " NO YOU DON'T WANT TO SEE IT.

YOUR SO DEEP IN DENIAL YOU WON'T EVEN ACCEPT THE FACT THAT SHE DOES

NOT RESPOND TO YOU EVEN WHEN YOUR SCREAMING HER NAME!!! "

Mom got all offended and mad at me. But its true. You can

yell " STELLA " all day long and she won't turn to look at you!! There

are some sounds she responds to but not many and we've been told that

the loss is profound in both ears. How could two ABRs under sedation

and a sound test in a booth all be wrong?!? They just can't be

completely wrong!! I don't want her to be hearing impaired any more

than any body else. BUT I have to accept the fact that there is a

problem if we are going to be able to deal with it. I suspect there

is a processing disorder as well but we won't know until after we

get those aids working for her.(agenisis Corpus Callosum) Its so

frustrating!!

ALSO.. I've been having Georgia Pines come to the house and my Mom is

all weird about that too. She wants to side track the advisor with BS

that isn't even relevant to my child or hearing and then gets all

pissy when we ignore the distraction. I mean they are here to help us

with Stella not have tea and discuss the days events.

I'm about to lose my mind on a daily basis with this woman and I

don't know what to do. Its not just the hearing issue. Its EVERYTHING

about her that drives me crazy! She moved in with us about 6 months

ago and I just can't deal with her! Sometimes I feel like I'd be

better off pitching a tent in the yard and not even coming in the

house because I know she is going to just drive me up the $@%^&&!!

wall!!

I know I sound mean and harsh. If you knew my Mom you might

understand though. I hope its ok that I have ranted and vented here.

I just don't have many people that I feel comfortable talking to

about this stuff and I thought maybe somebody else could give me some

words of wisdom..

Thanks, Vicki (feeling very, very sad right now!)

[Guest guest]

You SHOULD be angry! It's not like you want your daughter to have a

profound loss. You need support, but your mother doesn't want to admit that

her granddaughter is anything less than perfect. Well, her hearing anyway.

I'm sure it is scary for her, but you have to live with it all day and it is

much more scary for you. I am sorry. We believe you, we really do. You

are being so responsible and loving to have taken this seriously, looked

into it in the first place, had two tests to confirm it and you are

educating yourself. When Stella gets the hearing aids and your mother sees

the difference, you're mother will catch on and tell you how wonderful you

are. I'm sorry there is that lapse in support.

My parents never questioned me about the hearing loss (but then again the

school didn't believe me and he wasn't finally diagnosed until he was 5) but

I had a similar experience. Bobby was tube fed for 4 years. He had a nasty

oral aversion because he was intubated for so long and had all kinds of

things shoved into his mouth when he was in the PICU for 3 months. So, I

had an NG tube to feed him (naso gastric...goes into the nose and down into

the stomach) for two years. I couldn't fathom bringing into the hospital

for a permanent Gtube surgery, because he alsmost died with the heart

surgery. These NG tubes are supposed to be temporary, for about 2 or 3

monhs at most, but I kept his for 2 years because I was so afraid of teh

hospital. It's unheard of.

Anyway, I finally had enough of him throwing it up, and getting it caught on

things, and retaping it back to his cheek, and him looking like a freak, so

I decided to go ahead with the Gtube surgery. This is after two years of

him not eating and using this NG tube for everything that went into his

stomach. Everything. And my parents knew that.

So I get the date for the surgery, tell my parents, and my father says to

me, knowing that this was an agonizing decision for me to finally make, " He

doesn't need that thing. They just want to poke more holes into him. " Talk

about a deflated baloon. I thought I was going to die.

It's got to be incredibly hard for them as outsiders to this whole thing.

They grieve not only for their grandchildren, but for their own child who

has to go through this. They are also not around all the time to get

confirmation time after time after time when our kids don't hear us, or when

Bobby would throw up his food, or for the million times I would try to feed

him and he'd scream and push the spoon away or gag to the point of turning

blue. It's not to excuse their behavior or comments, but once I realized

that they really do feel as helpless as we do, but even more so because they

can't make decisions, I felt a little more empathy. Still, their comments

cut like knives.

We're here for you and we truly believe you.

Trish, mom to Bobby, 6 yrs old, mod/sev loss in R ear, high freq loss in L,

due to Ototoxic meds given in ICU, fitted with Oticon tego pro BTE aids

I'm so angry right now I could just cry!! Some of my family, my

mother in particular is in such denial that there is a hearing

problem with my 3 yo Stella. When she starts ranting about Stella

being just fine, I usually just tell her she is wrong and walk away.

But this morning I ended up lashing out in a loud and mean way. I

just couldn't help myself. Our Audiologist called and said her

hearing aids were ready, but there is a paper work problem with

Medicaid. I told them its ok, we've waited this long we can wait a

few more days until they work it out. (we weren't supposed to get

them for another 10 days anyway) I hung up and excitedly shared the

news that the aids were ready. My Mom says " I just don't understand

it, I don't see any problem " Me --- " NO YOU DON'T WANT TO SEE IT.

YOUR SO DEEP IN DENIAL YOU WON'T EVEN ACCEPT THE FACT THAT SHE DOES

NOT RESPOND TO YOU EVEN WHEN YOUR SCREAMING HER NAME!!! "

[Guest guest]

" One last thought - my mom let slip one time " I wonder if people

think it's our fault, like we passed genes down to you and then to

Andy " Both grandmothers are racking their brains to remember if

anyone in either family had hearing problems (none found yet). I

think there is a guilt factor too and that may be part of why your

mom is lashing out or not accepting it. Maybe she's worried, she's

somehow to blame. We are going through genetics to see if we can

find a cause but our doctors think it's going to be unknown, just

some kind of fluke. Once I explained to both moms that we most

likely won't find a definate reason, they appeared to relax some.

Then I followed with even if we find a reason, there's no one to

blame... "

What a great point. I never thought of that. My parents must have wondered

if they handed down a gene responsible for Bobby's heart defect. Because I

sure wonder if it was my fault...

Trish

[Guest guest]

" let your mom take Stella into the booth the next time she has a

hearing eval. "

-She might not go for that but I'll try it.

" became expert audiologists overnight and

starting conducting " highly scientific " hearing evals on Andy "

- LOL, we had that happen to. At least I can look back and laugh

about it now. But at the time I didn't think it was so funny! I did

pretty good at biting my tongue most of the time though.

That brings to mind some Q's I have..... Will Stella be tested in the

booth again with the hearing aids on? How will we be able to tell if

the aids are set right?

Also, can any one give me an idea of what reactions are common among

kids when the first get the aids. Should I expect a big reaction from

her?

Thanks to those that have already responded. I appreciate your kind

words and encouragements.

[Guest guest]

Vickie - I'm so sorry you're going through this. It sounds like a bad

situation all the way around. :-(

I'm not sure if I can say eloquently what I'm thinking about this. I do

believe that most of us go through stages of grieving our kids' hearing

losses but as the primary caretaker, we probably go through it somewhat

faster since we're living with it day after day. I know Uncle Steve,

who is very close to both my boys, came in one day when the boys were

younger. Sam was playing in the sprinkler without his hearing aids and

Steve said " hello " to him and Sam didn't respond. Steve looked stunned

and said " he really can't hear me! " . I took it as less as questioning

me and more of an " ah ha " moment on his part - that his heart was

catching up with his brain. another time, our ToD took pictures of all

the kids in Sam's preschool to work on names with him - she also took a

picture of Sam who at the time had the ugly 'brown box' FM. Steve

looked at that picture and said " he looks like a deaf kid! " - which I

perceived as him going through another layer... It was like watching

what I'd gone through after the fact.

So I'm not excusing your mom - not at all - but it sounds like she's not

where you are with Stella's diagnosis. (I LOVE the name Stella, BTW)

And yes, once she settles with her hearing aids, she'll have audiology

appointments often at first - probably every three months - with my boys

it then stretched out to every six months. They always tested my guys

in the booth with and without their hearing aids; as they got older,

they were also tested with their FM in noise and not in noise...

Good luck - I'm sorry you have this on top of everything else. it

sounds like you're doing a wonderful job with Stella!

Barbara

Trish Whitehouse wrote:

> " One last thought - my mom let slip one time " I wonder if people

> think it's our fault, like we passed genes down to you and then to

> Andy " Both grandmothers are racking their brains to remember if

> anyone in either family had hearing problems (none found yet). I

> think there is a guilt factor too and that may be part of why your

> mom is lashing out or not accepting it. Maybe she's worried, she's

> somehow to blame. We are going through genetics to see if we can

> find a cause but our doctors think it's going to be unknown, just

> some kind of fluke. Once I explained to both moms that we most

> likely won't find a definate reason, they appeared to relax some.

> Then I followed with even if we find a reason, there's no one to

> blame... "

>

> What a great point. I never thought of that. My parents must have wondered

> if they handed down a gene responsible for Bobby's heart defect. Because I

> sure wonder if it was my fault...

>

> Trish

>

>

>

> 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]

Grandma is also in denial in this family as

well.....the other night we were getting ready to

leave and told my 6 year old to say bye bye to

grandma. It just so happened at that second that Jaden

decided to babababa. She swore he tried to say bye bye

grandma. And then again, a few weeks ago she swore

that he responded to a noise outside. She came in and

said how amazing it was for her to see him responding

to sounds. At that point is when I told her....no one

can tell me, the person who has been with this child

for every living second of everyday for the past

4years and 4 months that he can hear. I have witnessed

more then 20 booth testings with him and have seen

exactly what it is that he responds to. I have watched

hundreds of speech thereapy sessions and know what my

son is and is not capable of.

Jaden did not pass the ALGO at birth and was diagnosed

with Auditory Neuropathy at 6 weeks old. At 6 months,

through both testing, we knew that his loss was

profound. He was implanted at 2 1/2 years old and went

through a CI failure in which he was reimplanted at 3

years old. After a year at an Auditory/Oral school and

numerous meetings with Cochlear Reps., we know the

implant does not work for him. He is now in a great

Deaf/HOH preschool class. I spend a lot of time there

and can't brag enough about the class.

So, I know how you are feeling. It makes me so mad

because this is a reality that we have had to live out

and come to some conclusion within ourselves and to

have anyone come and try to deny that is so

frustrating. I have learned to ignore it and let her

think as she will. It will not change what or how we

are going about our daily lives with our children.

le

[Guest guest]

We had this problem with my mother, too. She was absolutely convinced that

because our son had *some* hearing, he couldn't possibly need hearing aids, and

she really tried to convince me that I was making it all up. Our son also has

ADHD and eating issues--he's a very picky eater because of oral defensiveness

he's had since he was an infant. She didn't believe in ADHD, and felt that I was

just offering him the wrong foods, or spoiling him by not making him eat a wider

variety of foods. Fortunately (!) she lives several hours away, in a different

state, so as long as I didn't bring up any of the issues in our phone

conversations, we could safely ignore the other's point of view.

When our son was about six, right after the diagnosis of ADHD, my mother

offered to let him spend a week with her over the summer break. I showed her how

to put in his hearings aids, gave her instructions for the medication he was

taking for the ADHD, and gave her a list of the foods he was most likely to eat.

She politely took everything, but in her heart of hearts, she was convinced that

she was going to prove me (and the doctors) wrong, and show us that she could

" fix " him herself when I wasn't around to meddle with things.

When I went to get him a week later, my mother and her husband were QUITE

ready to be rid of him from exasperation. The conversation between us went

something like:

My mom: " He never seemed to listen to us. We had to repeat everything over and

over again, and most of the time he just seemed to ignore everything we said. "

Me: " That's because you didn't put his hearing aids in at all after I left. He

does use the hearing aids to hear, and he needs them especially to hear people

talk to him. "

My mom: " He was in constant motion, climbing and throwing things, even though

we kept telling him not to touch things. "

Me: " I see that you didn't give him his ADHD medication at all this week. It

really does help him calm down and pay attention to what's going on around him. "

My mom: " I have a whole refrigerator full of food that I thought he would

like, but he wouldn't eat any of it! "

Me: " Is blue applesauce really on the list I gave you? "

My mother is now a reformed woman. She understands now that I really do

understand my son better than she does, and admits that the doctors are right

about all of these diagnoses.

She took him for a week a couple years later. She put in his hearing aids, and

gave him his medicine, and they had a very good week getting to know each other

better. (She still doesn't get the food issues, but I haven't figured it out yet

completely myself.)

Kiminy

vickilee30533 godawgs30518@...> wrote:

I'm so angry right now I could just cry!! Some of my family, my

mother in particular is in such denial that there is a hearing

problem with my 3 yo Stella. When she starts ranting about Stella

being just fine, I usually just tell her she is wrong and walk away.

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

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[Guest guest]

We had frequent testing until our son was about three. He's almost 12 now, and

we have his hearing tested about once a year.

When our son got his first loaner hearing aid (around 9 months old), it was

like a lightbulb got turned on. He did like being able to hear things better. He

went through a phase of pulling out the hearing aids just because he could, and

when that happened, we just took them away for an hour or so. It didn't take him

long to make the connection between wearing the hearing aids and being able to

hear better, so after about a month, he stopped taking them out because he liked

hearing everything.

Kiminy

vickilee30533 godawgs30518@...> wrote:

That brings to mind some Q's I have..... Will Stella be tested in the

booth again with the hearing aids on? How will we be able to tell if

the aids are set right?

Also, can any one give me an idea of what reactions are common among

kids when the first get the aids. Should I expect a big reaction from

her?

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

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[Guest guest]

Vicki, you really hit the nail on the head. Your mom IS in denial. And denial

is a stage of grief. Everyone grieves differently and at different rates and

different stages. So just know she is grieving too. But you probably need her

support right now, and not only are you not getting support, you are getting

blasted. But you need to take care of YOU first, so your support is going to

have to come from elsewhere. I went alone to the audiology visit where Maggie

was diagnosed. Then I had to take her and drive to my husband's office and tell

him. We really already knew she couldn't hear and the audiologist just

confirmed what we knew in our hearts, but it was still hard. And what was

really hard was being in the position of being the news giver to him. He

questioned everything I told him. So we had another appointment a week later

and I refused to go without him. That gave him the understanding of reality. I

guess hearing it from a doctor instead of a wife/nurse made the difference. So

someone suggested having your mom come along to an appointment. Might be a good

idea just be sure to have an exit strategy - so if she continues with more of

the same you don't have to spend the next hour in a car with her!! In our

family, my dad was the one who gave us all fits. He wasn't in denial he was

weepy! He just couldn't imagine his darling grand-daughter in huge ugly hearing

aids. When he finally saw them he was relieved! They were pretty small and she

obviously got a lot of benefit from them.

Hearing loss is invisible. And I think that has a lot to do with family members

in denial. They can't see it so they don't believe it. Its pretty easy to

ignore or deny what is invisible. If there are any things your daughter does or

doesn't do that helped you to " see " the hearing loss, try pointing those out to

your mom. If she is a reader, get her a book about kids with hearing loss.

Hugs to you,

[Guest guest]

Vicki, now that I have read your original post I am having serious sympathy

pains for you. I love my mother dearly but I couldn't live with her for 6 days

let alone 6 months. Sorry I didn't read the message before answering. Come

down and see me sometime, I'm in Macon.

[Guest guest]

" let your mom take Stella into the booth the next time she has a

hearing eval. "

This is a great idea if it will work...Brings everything full circle...even

see if she would be willing to have her hearing tested. Believe me, that

will make a believer out of you.

That brings to mind some Q's I have..... Will Stella be tested in the

booth again with the hearing aids on? How will we be able to tell if

the aids are set right?

Yes, she’ll be tested over and over again. I’m sure that they will use

various ways of testing. I know got bored easily with the testing

methods (dropping toys in a bucket etc)...but as soon as she got ‘older’

(she was diagnosed at 4)...things got better.

Also, can any one give me an idea of what reactions are common among

kids when the first get the aids. Should I expect a big reaction from

her?

Expect that the reactions will come pretty quickly...I remember when

got her second set of hearing aides (more bells and whistles etc)...we

opened the door of the audiologists to leave and a plane was flying

overhead...She was amazed to hear it! Never had heard that before. I also

remember one night when she went out to put the dog in her kennel (again

right after her new hearing aides)...she came running in the house claiming

that she had heard something and she was pretty sure it was a rattle snake

(we live in Montana)...My husband went out (after dark of course) to listen

and see if he could hear/see the snake...came back in, no snake...etc.

went back out, came back in, knowing that she could hear something, so

I went out...sure enough – there were crickets chirping (no snake)...She had

never heard them before...

Of course, my husband can’t hear anything...not all “male pattern deafness”

(selective hearing)...he’s done a lot of hunting, is a pilot, and runs

tractors...

Jan

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[Guest guest]

You asked about reactions to hearing aids. I can only tell you what

I've seen with Andy this past month.

He loved them (and at 6months)! He actually seems to get that he can

hear me when they are in. The only problem we have is that he goes

through cycles of consistently pulling out the right one.

I think I've figured it out that he is telling me it's time for new

ear molds. We are on our 3rd pair already. His ears are growing like

crazy apparently (we are averaging new molds once per month). I

think it starts feeling loose and he gets feedback so he tugs at it.

When the ear molds fit, he never touches them (except in the car or

if he's mad because I'm not playing with him).

I use (on advice of several parents from the group), Hanna Andersson

pilot caps to keep the aids out of reach. They are great because he

can't get to them when the hat is on so I use them in the car or

while we're waiting for the new molds. They are lightweight and

don't seem to affect the hearing quality.

Andy just had his first test with his aids on and he is hearing

speech at 15 dBs!! My understanding is that they will do booth tests

every few months for awhile. Our audiologist explained that she

knows the hearing aids are set right because she can program them

through the computer using his audiogram results? Too high tech for

me but I know it's working for now.

Good luck

Jenn

>

> " let your mom take Stella into the booth the next time she has a

> hearing eval. "

>

> This is a great idea if it will work...Brings everything full

circle...even

> see if she would be willing to have her hearing tested. Believe

me, that

> will make a believer out of you.

>

> That brings to mind some Q's I have..... Will Stella be tested in

the

> booth again with the hearing aids on? How will we be able to tell

if

> the aids are set right?

>

> Yes, she'll be tested over and over again. I'm sure that they

will use

> various ways of testing. I know got bored easily with the

testing

> methods (dropping toys in a bucket etc)...but as soon as she

got `older'

> (she was diagnosed at 4)...things got better.

>

> Also, can any one give me an idea of what reactions are common

among

> kids when the first get the aids. Should I expect a big reaction

from

> her?

>

> Expect that the reactions will come pretty quickly...I remember

when

> got her second set of hearing aides (more bells and whistles

etc)...we

> opened the door of the audiologists to leave and a plane was flying

> overhead...She was amazed to hear it! Never had heard that

before. I also

> remember one night when she went out to put the dog in her kennel

(again

> right after her new hearing aides)...she came running in the house

claiming

> that she had heard something and she was pretty sure it was a

rattle snake

> (we live in Montana)...My husband went out (after dark of course)

to listen

> and see if he could hear/see the snake...came back in, no

snake...etc.

> went back out, came back in, knowing that she could hear

something, so

> I went out...sure enough – there were crickets chirping (no

snake)...She had

> never heard them before...

>

> Of course, my husband can't hear anything...not all " male pattern

deafness "

> (selective hearing)...he's done a lot of hunting, is a pilot, and

runs

> tractors...

>

> Jan

>

>

>

>

>

>

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>

>

>

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> Checked by AVG Free Edition.

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>

[Guest guest]

In a message dated 9/1/2006 12:15:00 P.M. Central Standard Time,

Barbara.T.Mellert@... writes:

I carried the gene

that caused their deafness. i remember when Sam - my younger son - was

diagnosed with his hearing loss my first three thoughts were " I can't

believe both my kids are deaf " , then " how am I going to manage to pay

for two sets of hearing aids " and then " I DID this to you " .

It's amazing how people process guilt in different ways. I have a friend

who was actually relieved to discover that genetics was the cause-- because she

blamed herself for things that she did during pregnancy.

My husband went through a short period of cursing the genetic line on my

side (five generations of hearing loss), but it was simply because all three

kids were born hearing and then eventually became deaf/hard of hearing. This

was harder to take than if they were diagnosed at birth.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

[Guest guest]

My mom always thought I was born deaf in one ear because she had the

flu when she was pregnant with me. My dad and I would say no, if the

flu was the cause, I'd be deaf in both ears, not just one. But she

believed it. Now I have a daughter with the same loss in one ear. I

didn't have the flu. :-) We had genetic testing done and found out we

have a rare syndrome, which we got from my dad's side of the family.

I don't know if my mom feels any better or not.

I guess I have the same outlook as 's friend. I'd rather it be

genetic than something I did during pregnancy. Of course, if it was

caused by an illness, that's pretty much beyond one's control as well.

Either way, blaming ourselves is useless. As we all know, we can't

change it, we just have to figure out what to do about it.

>

>

>

> In a message dated 9/1/2006 12:15:00 P.M. Central Standard Time,

> Barbara.T.Mellert@... writes:

>

> I carried the gene

> that caused their deafness. i remember when Sam - my younger son - was

> diagnosed with his hearing loss my first three thoughts were " I can't

> believe both my kids are deaf " , then " how am I going to manage to pay

> for two sets of hearing aids " and then " I DID this to you " .

>

>

>

> It's amazing how people process guilt in different ways. I have a

friend

> who was actually relieved to discover that genetics was the cause--

because she

> blamed herself for things that she did during pregnancy.

> My husband went through a short period of cursing the genetic line

on my

> side (five generations of hearing loss), but it was simply because

all three

> kids were born hearing and then eventually became deaf/hard of

hearing. This

> was harder to take than if they were diagnosed at birth.

>

> Putz

> Illinois Families for Hands & Voices

> _www.handsandvoices.org_ (http://www.handsandvoices.org/)

> _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

> Email: support@...

>

>

>

[Guest guest]

What is this syndrome, please?

I've been practically deaf in one ear for as long as I

can remember. The other ear has normal hearing.

Doctors have never given me any reasons for the

discrepancy, although it has been noted on every

audiogram I've ever had, and I have pointed it out to

every doctor who has seen my son. The hearing loss has

been constant, though--it has not gotten any worse in

the last 40+ years as far as I can tell, but my last

audiogram was probably about 10 years ago.

At this point, the only cause we can determine for our

son's hearing loss (which was present at his first

hearing test at the age of four months, with profound

loss in one ear and severe loss in the other) is the

fact that I had strep throat during the pregancy, and

was treated with antibiotics. That's not to say that I

blame myself in the least--I certainly did not choose

to get strep throat late in the second trimester, but

once I had it, it would have been riskier for both me

and the baby to let it go untreated. We have done some

genetic testing for other likely causes, but all the

tests have come back negative.

Kiminy

--- chmorg cherwolmo@...> wrote:

> My mom always thought I was born deaf in one ear

> because she had the

> flu when she was pregnant with me. My dad and I

> would say no, if the

> flu was the cause, I'd be deaf in both ears, not

> just one. But she

> believed it. Now I have a daughter with the same

> loss in one ear. I

> didn't have the flu. :-) We had genetic testing done

> and found out we

> have a rare syndrome, which we got from my dad's

> side of the family.

>

__________________________________________________

[Guest guest]

If the flu was Cytomegula virus, a 3 day cold, then it often results in

unilateral hearing loss.

-------------- Original message --------------

What is this syndrome, please?

I've been practically deaf in one ear for as long as I

can remember. The other ear has normal hearing.

Doctors have never given me any reasons for the

discrepancy, although it has been noted on every

audiogram I've ever had, and I have pointed it out to

every doctor who has seen my son. The hearing loss has

been constant, though--it has not gotten any worse in

the last 40+ years as far as I can tell, but my last

audiogram was probably about 10 years ago.

At this point, the only cause we can determine for our

son's hearing loss (which was present at his first

hearing test at the age of four months, with profound

loss in one ear and severe loss in the other) is the

fact that I had strep throat during the pregancy, and

was treated with antibiotics. That's not to say that I

blame myself in the least--I certainly did not choose

to get strep throat late in the second trimester, but

once I had it, it would have been riskier for both me

and the baby to let it go untreated. We have done some

genetic testing for other likely causes, but all the

tests have come back negative.

Kiminy

--- chmorg cherwolmo@...> wrote:

> My mom always thought I was born deaf in one ear

> because she had the

> flu when she was pregnant with me. My dad and I

> would say no, if the

> flu was the cause, I'd be deaf in both ears, not

> just one. But she

> believed it. Now I have a daughter with the same

> loss in one ear. I

> didn't have the flu. :-) We had genetic testing done

> and found out we

> have a rare syndrome, which we got from my dad's

> side of the family.

>

__________________________________________________

[Guest guest]

Did we ever find out what the syndrome was? I also carried the gene that my

kids have that has resulted in the characteristics of there syndrome..

Waardenburg syndrome..leaving my youngest profoundly deaf bilaterally..93db

..with his Cochlear Implant ..he heres at 20 db..

I have come thru a lot in the years..and it was all worth it..especially

when I hear Dakota singing Happy Birthday to you...when he is in trouble

knowing that it brings a smile to my face..LOL

~Cathy~

-- Re: Grandma is living in denial

My mom always thought I was born deaf in one ear because she had the

flu when she was pregnant with me. My dad and I would say no, if the

flu was the cause, I'd be deaf in both ears, not just one. But she

believed it. Now I have a daughter with the same loss in one ear. I

didn't have the flu. :-) We had genetic testing done and found out we

have a rare syndrome, which we got from my dad's side of the family.

I don't know if my mom feels any better or not.

I guess I have the same outlook as 's friend. I'd rather it be

genetic than something I did during pregnancy. Of course, if it was

caused by an illness, that's pretty much beyond one's control as well.

Either way, blaming ourselves is useless. As we all know, we can't

change it, we just have to figure out what to do about it.

>

>

>

> In a message dated 9/1/2006 12:15:00 P.M. Central Standard Time,

> Barbara.T.Mellert@... writes:

>

> I carried the gene

> that caused their deafness. i remember when Sam - my younger son - was

> diagnosed with his hearing loss my first three thoughts were " I can't

> believe both my kids are deaf " , then " how am I going to manage to pay

> for two sets of hearing aids " and then " I DID this to you " .

>

>

>

> It's amazing how people process guilt in different ways. I have a

friend

> who was actually relieved to discover that genetics was the cause--

because she

> blamed herself for things that she did during pregnancy.

> My husband went through a short period of cursing the genetic line

on my

> side (five generations of hearing loss), but it was simply because

all three

> kids were born hearing and then eventually became deaf/hard of

hearing. This

> was harder to take than if they were diagnosed at birth.

>

> Putz

> Illinois Families for Hands & Voices

> _www.handsandvoices.org_ (http://www.handsandvoices.org/)

> _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

> Email: support@...

>

>

>

[Guest guest]

>

> I'm so angry right now I could just cry!! Some of my family, my

> mother in particular is in such denial that there is a hearing

> problem with my 3 yo Stella. When she starts ranting about Stella

> being just fine, I usually just tell her she is wrong and walk

away.

> But this morning I ended up lashing out in a loud and mean way. I

> just couldn't help myself. Our Audiologist called and said her

> hearing aids were ready, but there is a paper work problem with

> Medicaid. I told them its ok, we've waited this long we can wait a

> few more days until they work it out. (we weren't supposed to get

> them for another 10 days anyway) I hung up and excitedly shared the

> news that the aids were ready. My Mom says " I just don't understand

> it, I don't see any problem " Me --- " NO YOU DON'T WANT TO SEE

IT.

> YOUR SO DEEP IN DENIAL YOU WON'T EVEN ACCEPT THE FACT THAT SHE DOES

> NOT RESPOND TO YOU EVEN WHEN YOUR SCREAMING HER NAME!!! "

>

> Mom got all offended and mad at me. But its true. You can

> yell " STELLA " all day long and she won't turn to look at you!!

There

> are some sounds she responds to but not many and we've been told

that

> the loss is profound in both ears. How could two ABRs under

sedation

> and a sound test in a booth all be wrong?!? They just can't be

> completely wrong!! I don't want her to be hearing impaired any more

> than any body else. BUT I have to accept the fact that there is a

> problem if we are going to be able to deal with it. I suspect

there

> is a processing disorder as well but we won't know until after we

> get those aids working for her.(agenisis Corpus Callosum) Its so

> frustrating!!

>

> ALSO…. I've been having Georgia Pines come to the house and my Mom

is

> all weird about that too. She wants to side track the advisor with

BS

> that isn't even relevant to my child or hearing and then gets all

> pissy when we ignore the distraction. I mean they are here to help

us

> with Stella not have tea and discuss the days events.

>

> I'm about to lose my mind on a daily basis with this woman and I

> don't know what to do. Its not just the hearing issue. Its

EVERYTHING

> about her that drives me crazy! She moved in with us about 6 months

> ago and I just can't deal with her! Sometimes I feel like I'd be

> better off pitching a tent in the yard and not even coming in the

> house because I know she is going to just drive me up the $@%^&&!!

> wall!!

>

> I know I sound mean and harsh. If you knew my Mom you might

> understand though. I hope its ok that I have ranted and vented

here.

> I just don't have many people that I feel comfortable talking to

> about this stuff and I thought maybe somebody else could give me

some

> words of wisdom….

>

> Thanks, Vicki (feeling very, very sad right now!)

>

I think it could be a GRANDMA thing! B/c MY MOM is always

saying " Keele hears just fine.. she is perfect! " And she is to me..

but her hearing isnt perfect! (she 80% deaf in the Rt ear) She even

went with me to the ~many~ ABR's and then the sedated ABR @ 5mo old

and her CT scan.. my mom was there when they told me the bad news. I

was devistated... and everyone loves to say " It could be worse! " well

to me im thinkin " It could be better " ya know? and when i talk bout

FM syst. bla blah.. they dont want to believe she has a deficite.. I

have accepted it and my family just all think she'll be just fine and

compensate (which so far she talks and walks great) but what if she

hits that wall of " slow down " just stops pickin up words or goes to

school and fails or just cant hear and all the kida look at her funny

when she has to wear a FM ?? Im so scared for her..