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Amy,

You are not alone. From all the postings you can see we have all been

there. My daughter has a CI and people would at first comment how cute it

is that my 1 1/2 year old was wearing a fanny pack (not knowing it was her

processor). I usually did not mention anything since like others on this

list I did not want to embarrass them. I educate people now that ask about

her CI and is more than happy to show them how it works. I do

remember though about 9 months ago this lady (I use the term loosely) was

walking by my daughter and my daughter was talking. The lady looked back at

my daughter with a scowl and LOUDLY said " My GOD, that little girl has a

deep voice. " I stood there in amazement. I figured if she was going to

comment on my daughter in a negative way were everyone could hear I had to

respond. I responded in a LOUD voice, " Thank you for being considerate, my

daughter is deaf and is learning to speak. " She was embarrassed to say the

least. I tell my children, " If you do not have anything nice to say, do not

say anything at all. " (That goes for adults too.)

Take care,

Monika (Mom to Miranda 7- hearing, 2 yr 10mo - CI 7/31/01)

>

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When my son Ben was a baby, and first wearing his aids, people would

ask in amazement how we knew so early that he needed hearing aids.

Most people don't comment now (he's 4), although kids will ask about

them, and I will explain how they work. Otherwise, I don't make a big

deal about it unless someone is asking him something and he clearly

can't hear them; then I repeat for him. I have noticed that people

who get down on his level or face him to talk are the ones with

experience with deafness or hearing loss. And although most of the

time I don't mind educating people on the whole thing, sometimes I'm

too busy or crabby to want to bother!

I do find myself noticing other people's ears, and making a

connection if I notice a child with aids or a CI. And I definitely

notice that moms who have a child with special needs take to my son

pretty warmly, and will make a connection with me. It's like a whole

new level of parenting.

I have a good friend who's son wears aids; when he was younger, he

played baseball, and was on a new team with a fairly difficult coach.

When he went up to bat, he would take his aids out and give them to

his dad, so the batting helmet would fit better. Well, he's up at

bat, and the coach is yelling instructions at him, and of course he's

not responding, so the coach finally yells, " Hey, what's the matter,

you deaf?! " And his father opens his hands to show the aids and says,

" As a matter of fact, he is. "

It gave me a good laugh --

Stefanie

mom to Ben, 4, severe HOH

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On Tuesday, December 10, 2002, at 12:23 AM, Kerryn wrote:

>

> I was in a shoe store once when the salesman asked about 's HA's.

> I explained about her hearing loss but that luckily she could hear

> very well with her HA's. His response was " At least it's just a

> hearing loss, and not something like diabetes where'd you'd have to

> give her a needle every day " .  Not that you can compare two conditions

> anyway, but to me it is certainly not " just a hearing loss " and if he

> was only comparing it to having to give daily needles (he wasn't

> referring to the possible serious health consequences of diabetes),

> then I would happily swap! I didn't say anything however, as his

> response was obviously made out of ignorance more than an intention to

> be rude, but I was a bit taken aback by it nevertheless.

============

Oh, see, I'd take hearing loss above almost anything else I see out

there. My oldest, Ben, was diagnosed HOH at six weeks of age, and back

then we were in a weekly playgroup with a bunch of other moms and

firstborns. When we told the other families about Ben's hearing loss, I

could see how relieved they were to go home and make loud noises and

find that their child would startle or turn to the sound. They all felt

so glad that their child was " fine, " and I know that while they were

supportive of us, they felt pity for us that our tiny baby wasn't

" perfect. "

Fast forward almost 8 years now, and just about all these kids have

some problem or another, from learning and behavioral challenges to

chronic physical disorders and ailments. One dear friend had triplets

earlier this year, and as if that wasn't enough, found out that one of

them has cerebral palsy.

In reality, everyone has challenges. Like my great-grandmother used to

say, if everyone put their problems out on the clothesline every day,

at the end of the day, I'd take my own problems back every time.

Obviously no one chooses for their children to have problems, but I'll

take hearing loss over virtually everything else. It's fairly

solveable, it requires no medication or hospitalization, minimal

invasiveness, and although it requires a lot of work on the part of my

child and our family, it has built character, confidence and family

strength for us.

We were fortunate to learn early on about the hearing loss, and were

able to intervene very early as a result. I always appreciate having my

image of a " perfect child " shattered early on, and being able to focus

on getting help, rather than deluding myself into thinking that

everything is hunky-dory and having to have my world rocked when my

child entered school. Too much of a learning curve in attitude, and too

much time wasted feeling sorry for my situation at that point.

Just my opinion...

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> to me it is certainly not " just a hearing loss "

>

> his response was obviously

> made out of ignorance more than an intention to

> be rude, but I was a bit taken aback by it nevertheless.

Please know, before you read what I have to say on this, that this is not a

lecture - I certainly feel it could be taken that way. This is simply

telling you how I personally feel about this. I am well aware that there can

be and are differing opinions on this subject and however you feel about it,

you certainly have every right to feel that way. Nobody has a right to tell

you how you should feel about your child's hearing loss.

This is certainly a 'some people feel this way, some don't' subject. For me,

when JD was finally diagnosed, many people were taken aback when I would say

" If my son had to have something wrong with him, thank God it was only his

hearing " . To me, there are many more handicapping conditions to have than

hearing loss. An unloved child has a bigger handicap than my son because

they will never know true happiness.

I learned early on that this was not a popular thought, judging from all the

weird looks I received whenever I had occasion to say this. I still feel

this way today, after dealing with my son's loss for 15 years. I look at him

and I see a happy child, a child who is comfortable around others and who is

comfortable with who he is. I would far rather he only have his hearing loss

to deal with than the MS that I have to deal with.

Hugs,

Kay

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Yeah, this topic hit home for me too. I am still new to hearing loss

(Kate is 1 1/2) and so far have had people be either unaware of her aids

or very nice about it - rarely asking questions. When Kate was a baby I

felt like everyone was staring at her (they weren't), but now I think

it's interesting to watch the reactions of those who do notice. The most

unusual thing I've heard is " look how tiny those hearing aids are - I

didn't know they made them so small " - I think what was so surprising to

this lady is how small Kate is to be wearing aids; because she's pretty

tiny and if anything her aids look big on her. But I would rather have a

comment or a question than a pitying look.

It's been interesting to read about all your encounters with people, and

you all mentioned some good responses to use in these situations - I'll

try to remember them when I'm faced with similar comments ;) This

reminded me that our kids learn how to handle this stuff from US, their

parents. They will be answering questions long after they're out of our

protective reach.

- in CO, mom to:

-3 1/2; Kate-1 1/2 (mod., aided since 4m)

ps: Amy ... the Costco @ Park Meadows? We go there too!! - and way too

often I'm afraid ;)

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> I knew when I wrote about my experience I

> would probably be misunderstood

Welcome to the club. It doesn't happen to me so much in this group, but I

belong to a group composed only of board members for a local organization,

and every time I put something in writing, I seem to be misunderstood and

think, " OK, this is the time they throw me off the board. " But still, it has

provided us an opportunity to think on and exchange how many of us feel

about our child, and that's never a bad thing.

Hugs,

Kay

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I agree with what everyone else has already written about not wanting to make

the lady embarrassed, but I think if it were me in this situation, instead of

saying " he didn't hear you " , I would say " Sorry, my son is hearing impaired and

didn't hear you " . Then she wouldn't have got to the point where she thought you

just meant he was using selective hearing. The more open and easy going you are

about the hearing loss, usually you will find people respond the same and I

agree with , it is important to educate people, to help make it easier not

only for our kids as they go through life, but future parents/HI kids.

I was in a shoe store once when the salesman asked about 's HA's. I

explained about her hearing loss but that luckily she could hear very well with

her HA's. His response was " At least it's just a hearing loss, and not something

like diabetes where'd you'd have to give her a needle every day " . Not that you

can compare two conditions anyway, but to me it is certainly not " just a hearing

loss " and if he was only comparing it to having to give daily needles (he wasn't

referring to the possible serious health consequences of diabetes), then I would

happily swap! I didn't say anything however, as his response was obviously made

out of ignorance more than an intention to be rude, but I was a bit taken aback

by it nevertheless.

I guess it's one of the many things us parents have to deal with on this journey

of ups and downs, but fortunately I think most people are pretty understanding

and genuinely interested in learning more about hearing impairment etc.

On a positive note, a friend's 7 year old on first seeing 's HA's, asked

" what's in her ears? " I told him and he said " Does she ever take them out " . I

explained yes, for naps and bath time. He said " Will she have to wear them for

the rest of her life? " I said yes, but aren't we lucky to have such clever

things available to help her hear! (trying to be positive) And he said " yeah "

(with a most unconvinced look on his face mind you!). I was impressed with his

questions and his perception of the situation, especially considering his age. I

think it is a sign that kids these days are being made more aware of people's

differences and showing tolerance of them, rather than like in the past, when

disabilities weren't talked about so openly. Let's hope we can continue to

educate people in a positive way and help make the world an easier place for our

children.

Kerryn

(, mod loss, 2 years)

rude people question

I was in Costco with my 7 year old son the other day. He was messing with a

box or something, near the register. The woman checker said something to

him about not ruining the boxes because they needed them for groceries. My

son didn't respond. When I told her that he couldn't hear her she laughed

and said " they never can " . Then I said " No, he really can't hear you " and

she replied " Yeah, it's that selective hearing huh " and she kept laughing

about it.

I'm new to this and don't really know how to react to people in this

situation. Do I need to explain to EVERYONE that my son is HOH or do I just

let them assume he has no manners? What do you say to people?

Amy

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I knew when I wrote about my experience I would probably be misunderstood (as

often seems to happen when I put things in writing).

What I was trying to say was that if I had to choose between wearing

hearing aids for the rest of her life and never knowing 'normal hearing', to

having to have a needle once a day, I would choose the needle (not the

diabetes). I am fully aware of how lucky we are that it is " just a hearing

loss " . I know of kids with far worse conditions that have a much more

debilitating effect on their life compared with , and I wasn't doing the why

me thing. I was simply taken aback that someone who has no idea of what it is

like to be in my shoes, could make presumptions about how I should feel about it

or try to make out like it was no big deal. Everything in life is relative. I

have to listen to my friends complain about their kids not keeping a hat on or

pulling out their hair clips - to me, this just sounds so ridiculously trivial

compared to going through months of watching my child pull out hearing aids over

and over and over all day long, when everyone keeps telling me I must get her to

wear them! But then, in their lives, that is their biggest problem to deal with

at the time, so I guess they complain about it.

I have often said that I would have 10 's with her hearing loss, instead of

one child who is a brat. From birth, has always been so easy going, gets on

with everyone she meets, doesn't throw tantrums, and is just plain beautiful

inside and out, so I am the first person to say " thank goodness it's just a

hearing loss " . I just don't like it when other people make the same comment!

Hope I've cleared it up. Thank you everyone for your thoughts.

Kerryn

(, mod loss, 2)

Re: rude people question

> to me it is certainly not " just a hearing loss "

>

> his response was obviously

> made out of ignorance more than an intention to

> be rude, but I was a bit taken aback by it nevertheless.

Please know, before you read what I have to say on this, that this is not a

lecture - I certainly feel it could be taken that way. This is simply

telling you how I personally feel about this. I am well aware that there can

be and are differing opinions on this subject and however you feel about it,

you certainly have every right to feel that way. Nobody has a right to tell

you how you should feel about your child's hearing loss.

This is certainly a 'some people feel this way, some don't' subject. For me,

when JD was finally diagnosed, many people were taken aback when I would say

" If my son had to have something wrong with him, thank God it was only his

hearing " . To me, there are many more handicapping conditions to have than

hearing loss. An unloved child has a bigger handicap than my son because

they will never know true happiness.

I learned early on that this was not a popular thought, judging from all the

weird looks I received whenever I had occasion to say this. I still feel

this way today, after dealing with my son's loss for 15 years. I look at him

and I see a happy child, a child who is comfortable around others and who is

comfortable with who he is. I would far rather he only have his hearing loss

to deal with than the MS that I have to deal with.

Hugs,

Kay

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