Re: Questions from strangers

[Guest guest]

I agree with you, Mike. I am friendly and polite when people ask about

Aubrie. Most often, they'll ask how old she is so I just reply that

she's 3. If they ask more, I go on. Kind of like dealing with young

children about touchy subject, I only offer as much info as they ask for

and as they seem to be able to handle.

Because Aubrie is still young and cute, most people notice her and

comment on how darling she is. Young girls -- elementary through high

school -- are infatuated with her. I take the opportunity to open minds

and promote " disability awareness " whenever I can.

The most difficult situations are when my older son's friends ask

specific questions, like " Why are her ears like that? " or " Why does she

rock like that? " . I usually give the simple " Her ears were made like

that " or " Rocking makes her feel good when she's bored or upset " .

We are fortunate that we live in a small community where everyone knows

of us so we don't get much interaction with true strangers. I'm a bit

concerned about how things will change when Aubrie gets older and isn't

so adorable. Right now she's just a living doll. Surely, she'll go

through an awkward stage like all kids do. Then, I hope to remind

people of how they felt when she was younger and that she's still the

same adorable person -- her package is just a bit different.

You and I are parents of young children who haven't had many negative

experiences. I hope that we can keep our positive outlook and continue

to provide kind, informative responses to people in the future. I

wonder what we'll be saying to each other on this subject in 5 or 10

years?

Michele W

Aubrie's mom 3 yrs CHaRgE

[Guest guest]

Yes, you need to go with a gut feeling in my mind. I have been trying to

carry at least one of the new pamphlets that tell about CHARGE in my purse.

Since I do not have with me often I don't run into the question too

often but when I do I tell some about CHARGE and then I leave a pamphlet

with them if they seem genuinely interested.

Liz Young - Grandma to Ogan 8 1/2 - Mom to Marilyn Ogan. - Wabash,

IN

Questions from strangers

> The other night we were at a social event with our CHaRGEr, Danny, who was

> standing in his Pony walker. He is 3 but looks and acts a lot younger. A

> woman I did not know was attempting to interact with him. I walked up to

> them and she asked me if he had cerebral palsy. I said, " no, he doesn't

> have cerebral palsy. " She responded, " what happened to him? " I said, " he

> was born that way " and changed the subject.

>

> I had based my responses on a book I had read about dealing with

> disabilities. It had a chapter on dealing with questions from members of

> the public and suggested " Be polite, be brief, and be gone. " But then I

> started to think, gee, this woman is just trying to be nice. She is

showing

> an interest in Danny, which nobody else in the room is doing. So I told

her

> a little bit about Danny and CHARGE Syndrome, and I felt a lot better

about

> it.

>

> I have not been in this situation very much, and perhaps my attitude will

> change over time. But at this point, I feel like I've got to go with my

gut

> feeling in terms of people's motivations. If they are trying to reach

out,

> or are simply curious in a polite way, I feel like I should use the

> opportunity to teach them a little about my son. I suppose the setting

may

> make a difference: at a party where the point is to interact vs. in line

at

> the market, etc. But I don't think it makes sense to come up with " rules "

> or prepackaged responses in advance. I think we can all tell if somebody

is

> trying to be rude or hostile or are being nice or just curious, even if

they

> say the " wrong thing. " There may even be a potential for making something

> good out of rude questions, but I haven't thought that through yet.

>

> -Mike Schwartz in Ventura, California, father of 3-year-old twin boys

> (CHaRGE) and

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Mike,

I usually gauge the person who is asking as to whether it's genuine wanting to know or wanting to know because they are nosey (I've had this especially in the hospital). Usually they genuinely want to know, so I always grab that opportunity to educate yet another person about CHARGE!

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Questions from strangers

The other night we were at a social event with our CHaRGEr, Danny, who was standing in his Pony walker. He is 3 but looks and acts a lot younger. A woman I did not know was attempting to interact with him. I walked up to them and she asked me if he had cerebral palsy. I said, "no, he doesn’t have cerebral palsy." She responded, “what happened to him?” I said, “he was born that way” and changed the subject.I had based my responses on a book I had read about dealing with disabilities. It had a chapter on dealing with questions from members of the public and suggested “Be polite, be brief, and be gone.” But then I started to think, gee, this woman is just trying to be nice. She is showing an interest in Danny, which nobody else in the room is doing. So I told her a little bit about Danny and CHARGE Syndrome, and I felt a lot better about it.I have not been in this situation very much, and perhaps my attitude will change over time. But at this point, I feel like I’ve got to go with my gut feeling in terms of people’s motivations. If they are trying to reach out, or are simply curious in a polite way, I feel like I should use the opportunity to teach them a little about my son. I suppose the setting may make a difference: at a party where the point is to interact vs. in line at the market, etc. But I don’t think it makes sense to come up with “rules” or prepackaged responses in advance. I think we can all tell if somebody is trying to be rude or hostile or are being nice or just curious, even if they say the “wrong thing.” There may even be a potential for making something good out of rude questions, but I haven’t thought that through yet.-Mike Schwartz in Ventura, California, father of 3-year-old twin boys (CHaRGE) and _________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

I was at the hospital the other day waiting for my car (valet parked), and

we were at the entrance. Every single person that walked through that door

took a second and maybe even third look at my son. It drives me nuts. My

kid is going to get a big complex later on in life if this keeps up!

Questions from strangers

The other night we were at a social event with our CHaRGEr, Danny, who was

standing in his Pony walker. He is 3 but looks and acts a lot younger. A

woman I did not know was attempting to interact with him. I walked up to

them and she asked me if he had cerebral palsy. I said, " no, he doesn’t

have cerebral palsy. " She responded, “what happened to him?” I said, “he

was born that way” and changed the subject.

I had based my responses on a book I had read about dealing with

disabilities. It had a chapter on dealing with questions from members of

the public and suggested “Be polite, be brief, and be gone.” But then I

started to think, gee, this woman is just trying to be nice. She is showing

an interest in Danny, which nobody else in the room is doing. So I told her

a little bit about Danny and CHARGE Syndrome, and I felt a lot better about

it.

I have not been in this situation very much, and perhaps my attitude will

change over time. But at this point, I feel like I’ve got to go with my gut

feeling in terms of people’s motivations. If they are trying to reach out,

or are simply curious in a polite way, I feel like I should use the

opportunity to teach them a little about my son. I suppose the setting may

make a difference: at a party where the point is to interact vs. in line at

the market, etc. But I don’t think it makes sense to come up with “rules”

or prepackaged responses in advance. I think we can all tell if somebody is

trying to be rude or hostile or are being nice or just curious, even if they

say the “wrong thing.” There may even be a potential for making something

good out of rude questions, but I haven’t thought that through yet.

-Mike Schwartz in Ventura, California, father of 3-year-old twin boys

(CHaRGE) and

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

" 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

Yesterday and I were at Circuit city getting him his own I-Mac computer,

which is wonderful. This bozo that was helping us said to me (with

standnig right next to me) " So, what does he have? " At first I thought he

meant another computer, then I realized. I said, " I'll tell you in private

sometime when he's not here. " Duh, he was a stranger. Then he went on to

talk to me instead of about his stuff. I might write a letter, it was

so rude and inconsiderate, as if was stupid or something. Grrr. Barbra

Mousouris

[Guest guest]

Mike,

My son is now 7 and people have quit asking questions and now tend to stare

briefly. People would approach me when he was still a baby and toddler (he

had a trach and feeding tube then) and I appreciated those who were brave

enough to ask me about him. I would happily tell them a little about him

and would go into more detail if they asked. What I hated was when adults

would stare incessantly with their mouths open and not say a word. I am not

talking about a 30 second glance:o) I would then get defensive (in my son's

honor) and ask them if they had a staring problem. I know that was

inappropriate too, but an adult knows better than to stare for minutes--how

tacky. I loved it when someone would come up to me and ask me if he was

going to be all right. They were sincere. Anyway, I think you are doing

the right thing:o)

Kristy, mom to Tyler 7 (CHARGE) and 2

Questions from strangers

The other night we were at a social event with our CHaRGEr, Danny, who was

standing in his Pony walker. He is 3 but looks and acts a lot younger. A

woman I did not know was attempting to interact with him. I walked up to

them and she asked me if he had cerebral palsy. I said, " no, he doesn't

have cerebral palsy. " She responded, " what happened to him? " I said, " he

was born that way " and changed the subject.

I had based my responses on a book I had read about dealing with

disabilities. It had a chapter on dealing with questions from members of

the public and suggested " Be polite, be brief, and be gone. " But then I

started to think, gee, this woman is just trying to be nice. She is showing

an interest in Danny, which nobody else in the room is doing. So I told her

a little bit about Danny and CHARGE Syndrome, and I felt a lot better about

it.

I have not been in this situation very much, and perhaps my attitude will

change over time. But at this point, I feel like I've got to go with my gut

feeling in terms of people's motivations. If they are trying to reach out,

or are simply curious in a polite way, I feel like I should use the

opportunity to teach them a little about my son. I suppose the setting may

make a difference: at a party where the point is to interact vs. in line at

the market, etc. But I don't think it makes sense to come up with " rules "

or prepackaged responses in advance. I think we can all tell if somebody is

trying to be rude or hostile or are being nice or just curious, even if they

say the " wrong thing. " There may even be a potential for making something

good out of rude questions, but I haven't thought that through yet.

-Mike Schwartz in Ventura, California, father of 3-year-old twin boys

(CHaRGE) and

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

" 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

i may as well add my 2 cents! i get so tired of the stares as well.

depending on my mood and how gawkee their stares are is how i respond! we

live in a small quaint village, with lots of little shops etc, erika and walk

all the time through town, and the shops, when my husband takes her he comes

home and says " everyone knows erika! " now that they are used to seeing us

and know us they are very friendly and nice, its when we travel outside our

area, the mall etc that i get alot of stares. sometimes i stare back, until

they break the stare adn turn away embarresed. i have even asked them if

thre was a problem. (that is usally when i am feeling down, and the are

walking around yelling at there perfect child for running and screaming) i

try to be very upbeat adn smile, i am very proud of erika and how much she

has accomplished but sometimes oyu are envious of the " perfect familes "

cathie, mom to erika 5.7 yrs old CHARGEr

[Guest guest]

Michele,

I had to laugh out loud when you made the comment, " I worry about how things

will change when Aubrie is not so adorable... Come on now, we all know she

will ALWAYS be adorable !!!

;-)

Foley

re: Questions from strangers

> I agree with you, Mike. I am friendly and polite when people ask about

> Aubrie. Most often, they'll ask how old she is so I just reply that

> she's 3. If they ask more, I go on. Kind of like dealing with young

> children about touchy subject, I only offer as much info as they ask for

> and as they seem to be able to handle.

>

> Because Aubrie is still young and cute, most people notice her and

> comment on how darling she is. Young girls -- elementary through high

> school -- are infatuated with her. I take the opportunity to open minds

> and promote " disability awareness " whenever I can.

>

> The most difficult situations are when my older son's friends ask

> specific questions, like " Why are her ears like that? " or " Why does she

> rock like that? " . I usually give the simple " Her ears were made like

> that " or " Rocking makes her feel good when she's bored or upset " .

>

> We are fortunate that we live in a small community where everyone knows

> of us so we don't get much interaction with true strangers. I'm a bit

> concerned about how things will change when Aubrie gets older and isn't

> so adorable. Right now she's just a living doll. Surely, she'll go

> through an awkward stage like all kids do. Then, I hope to remind

> people of how they felt when she was younger and that she's still the

> same adorable person -- her package is just a bit different.

>

> You and I are parents of young children who haven't had many negative

> experiences. I hope that we can keep our positive outlook and continue

> to provide kind, informative responses to people in the future. I

> wonder what we'll be saying to each other on this subject in 5 or 10

> years?

>

> Michele W

> Aubrie's mom 3 yrs CHaRgE

>

>

>

> " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>

[Guest guest]

Well, I would add my 2cents, but with the exchange rate... i may have

to put a little extra! lol! jk!

People always comment on my eyes. For those of you who know me well,

I have broght this topic up before! I cant stand people saying my

eyes look weird. So they are a little on the yellowish side of hazel.

My sister (such a little sweet hart!) told me to say " their not

yellow, those are just speckles of gold " I have said that to people

and then I feel better.

THe other thing that drives me crazy is when people (my mother of all

people does this the most!) say I look sad. Now, I have slightly

droopy eyes and my smile is not compleatly noticable... in short I

look sad even when I am not! (you have to know what my smile looks

like). This is so irritating. Now why my mom does this I will never

know!

Chantelle

[Guest guest]

I would definitely call or write a letter Barbara, some sensitivity training is in order for that guy, a lot of companies would do the world good if they were taught how to deal with people, all people.

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Questions from strangers

Yesterday and I were at Circuit city getting him his own I-Mac computer, which is wonderful. This bozo that was helping us said to me (with standnig right next to me) "So, what does he have?" At first I thought he meant another computer, then I realized. I said," I'll tell you in private sometime when he's not here." Duh, he was a stranger. Then he went on to talk to me instead of about his stuff. I might write a letter, it was so rude and inconsiderate, as if was stupid or something. Grrr. Barbra Mousouris"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org