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Posted

n,

When my nephew with CP was younger, I remember another child asking him what

was wrong with his hand. He looked at his hand as if he were puzzled there

was something wrong with it, then shrugged and said, " I was just born with

it that way. " To him it was not wrong, it was just the way it was. The

child asking did not imply that it was something bad like the woman did, it

was his way of noticing that his hand didn't do what his hand could do.

That is the attitude I want to teach all of my children, it is the

difference in the asking. I want the other kids to learn that the things

that are different to them are natural to us and that they do not need to

shy away from us. I welcome their curiosity as an opportunity to teach

this.

I have had other kids at pools ask why Dylan still wears swim diapers - I

just say his nerves don't work so well, so he can't feel the pee. They

shrug and then they go back to playing in the water. They often stand and

watch with interest as I bolus him and sometimes they will ask about it. I

say something like, " when he drinks in his mouth, the milk goes in his lungs

instead of his stomach - like drowning - so his milk goes right in his

tummy.

For the woman who hasn't had that learning yet and thinks different is bad,

then I would smile at and direct my comments to the boy and say something

positive about , like doesn't hear or see very well, so she

likes to learn about things by how they feel in her mouth. Natural, matter

of fact and non-confrontational with the woman. Hopefully her child will at

least learn.

But we all agree when we hear that tone of voice, mama bear wants to come

out big time!

Kim

> Hello everyone,

> Yesterday, my daughter had an eye appointment, while we were in the

> waiting room, there was another woman there with her two grandchildren.

> was playing, and started to chew on some of the toys,(she is

> very oral)and I didn't think anything about it.....

>

> However, the one grandson asked his grandmother why was she doing that?

> The woman said There must be something WRONG with HER. I put the

> emphasis on the wrong because the way she said it. Not only was it the

> way she said it, it was the way she looked at , when she said

> it.

>

> She looked at my daughter as if she had the bubonic plague or

> something! I wanted to snap back at her, but I was afraid what I would

> say, once I opened my mouth. I just got up, went over to ,

> redirected her to another activity, got a antibacterial wipe, and

> cleaned the toy and dried it off.

>

> She still wouldn't let her grandson play with the toy, maybe she

> thought my daughter's germs were still on it. There was also another

> woman, she didn't say anything, but she also stared at . I was

> so glad when we left there.

>

> I would like to know, am I blowing this thing out of propportion?

> Would should I have said, that would have been deemed appropriate? I

> couldn't think of appropiate at the time, I was too mad! Has anyone

> here dealt with these type of situations and if so, what did you do?

> Maybe on top of everything that I have had to learn, about taking care

> of a CHARGE kid, maybe I need to take a class on how to deal with rude

> people....

>

> didn't notice anything, but I know that there will come a

> time that she will....I want to protect her as much as I can from

> people who are like that, but I know I won't always be there when it

> happens!

>

> Well,thanks for listening, I was upset and hurt, and I needed to tell

> somebody.

>

> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

Posted

n,

Unfortunately, there are a lot of people who are ignorant out there; I almost

feel sorry for their ignorance at this point. They don't " get " what is

important in life, they are just stuck in their little bubble of what they think

" normal " is - well a lot of those " so called " normal situations are nothing I'm

interested in being part of. Maybe not when Kennedy was two, but now, I would

definitely say something like " actually there's nothing wrong with her at all -

she just likes to chew on toys. " As for the other woman staring, I find the

best approach is just to try and make eye contact when she's staring and say

" she's beautiful, isn't she? " .

Sorry you're dealing with this - I don't even think about that stuff much

anymore; it may sound silly, but I actually pity people like that.

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

Posted

Even as an adult people still come up to me and ask things like " what's wrong

with you? " or my favorite " Were you in an accident or something? " . To the

question of something being wrong, I often say, " Nothing is wrong with me, but I

think there's something wrong with your manners. " That is a good slap in the

face to people on the appropriateness of their question. And to the accident

question I say " No, why is there something wrong? " .

I have only ever lost my temper once. It was a very ugly situation and the first

time anyone had ever come up to me. I was standing in line at a post office and

this elderly woman was infront of me and turned around to look at me and says

" Oh my, what happened to your face! " I just stood and ignored her. Then she

turns around and starts talking to other people saying things like " Oh that poor

girl, I dont think she realizes there's anything wrong with her, shame the

doctors cant help her " and so on. I finally got to the boiling point, turned and

faced her and said " F#$# off. " Well! She was quite in shock! She was furious!

She started saying to everyone " I cant believe the manners of her, she's so

rude " and blah blah. Well one guy turned to her and said " Lady, you deserved

that. " And then she just shut her mouth and wouldn't say another word. It felt

good everyone else was on my side. But certainly not one of my favorite moments.

I've learned when people stare to put the ball back in their court, " Is there

something I can help you with? " . And they realize they have been caught and turn

away. Its not always easy. I've started swimming three times a week and last

Friday I had a couple teenage girls in my lane who would actually stop and stare

at me as I swam by. I couldn't say anything to them as when I swim I cant hear

as I have to take my hearing aid out. Its not a fun thing to be always be stared

at and treated differently, but there certainly are ways to get people back on

track. And all else fails, I just walk away. Hope my rant somewhat helps!

Re: How to deal with rude people

n,

When my nephew with CP was younger, I remember another child asking him what

was wrong with his hand. He looked at his hand as if he were puzzled there

was something wrong with it, then shrugged and said, " I was just born with

it that way. " To him it was not wrong, it was just the way it was. The

child asking did not imply that it was something bad like the woman did, it

was his way of noticing that his hand didn't do what his hand could do.

That is the attitude I want to teach all of my children, it is the

difference in the asking. I want the other kids to learn that the things

that are different to them are natural to us and that they do not need to

shy away from us. I welcome their curiosity as an opportunity to teach

this.

I have had other kids at pools ask why Dylan still wears swim diapers - I

just say his nerves don't work so well, so he can't feel the pee. They

shrug and then they go back to playing in the water. They often stand and

watch with interest as I bolus him and sometimes they will ask about it. I

say something like, " when he drinks in his mouth, the milk goes in his lungs

instead of his stomach - like drowning - so his milk goes right in his

tummy.

For the woman who hasn't had that learning yet and thinks different is bad,

then I would smile at and direct my comments to the boy and say something

positive about , like doesn't hear or see very well, so she

likes to learn about things by how they feel in her mouth. Natural, matter

of fact and non-confrontational with the woman. Hopefully her child will at

least learn.

But we all agree when we hear that tone of voice, mama bear wants to come

out big time!

Kim

> Hello everyone,

> Yesterday, my daughter had an eye appointment, while we were in the

> waiting room, there was another woman there with her two grandchildren.

> was playing, and started to chew on some of the toys,(she is

> very oral)and I didn't think anything about it.....

>

> However, the one grandson asked his grandmother why was she doing that?

> The woman said There must be something WRONG with HER. I put the

> emphasis on the wrong because the way she said it. Not only was it the

> way she said it, it was the way she looked at , when she said

> it.

>

> She looked at my daughter as if she had the bubonic plague or

> something! I wanted to snap back at her, but I was afraid what I would

> say, once I opened my mouth. I just got up, went over to ,

> redirected her to another activity, got a antibacterial wipe, and

> cleaned the toy and dried it off.

>

> She still wouldn't let her grandson play with the toy, maybe she

> thought my daughter's germs were still on it. There was also another

> woman, she didn't say anything, but she also stared at . I was

> so glad when we left there.

>

> I would like to know, am I blowing this thing out of propportion?

> Would should I have said, that would have been deemed appropriate? I

> couldn't think of appropiate at the time, I was too mad! Has anyone

> here dealt with these type of situations and if so, what did you do?

> Maybe on top of everything that I have had to learn, about taking care

> of a CHARGE kid, maybe I need to take a class on how to deal with rude

> people....

>

> didn't notice anything, but I know that there will come a

> time that she will....I want to protect her as much as I can from

> people who are like that, but I know I won't always be there when it

> happens!

>

> Well,thanks for listening, I was upset and hurt, and I needed to tell

> somebody.

>

> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

Posted

i try not to let stuff like that get to me, but it is hard!!!! my

son has a trach also, so we get lots of stares when i have to suction

and stuff. i don't mind the questions and most people are actually

pretty nice, it is just those few bad apples that get your blood

pressure going, i have told people to please don't stare or i make

eye contact with them, most people smile, but some try to pretend

they weren't staring. my son is running everywhere and copying

everything everyone does, so he will go up to people in the waiting

room and try to play with them, most people are ok, but we have our

share of rude people. i have to make myself not say anything. i

feel like you do many times, i have not said something and i wished

that i have, but i have to remember that i am the lucky one, i get

see miracles in the making everytime he does something new, i get to

be part of this amazing child's world. people that are rude are the

ones who have no idea what really matters in life.

mom to anthony 2 yr old CHargEr

> n,

> Unfortunately, there are a lot of people who are ignorant out

there; I almost feel sorry for their ignorance at this point. They

don't " get " what is important in life, they are just stuck in their

little bubble of what they think " normal " is - well a lot of

those " so called " normal situations are nothing I'm interested in

being part of. Maybe not when Kennedy was two, but now, I would

definitely say something like " actually there's nothing wrong with

her at all - she just likes to chew on toys. " As for the other woman

staring, I find the best approach is just to try and make eye contact

when she's staring and say " she's beautiful, isn't she? " .

> Sorry you're dealing with this - I don't even think about that

stuff much anymore; it may sound silly, but I actually pity people

like that.

>

>

>

> Home: lisaweir@r...

> Work: lisa.weir@n...

> Phone:

> Web: http://ca.geocities.com/weirfamily@r...

>

>

>

>

>

>

>

>

>

>

Posted

>

> > Hello everyone,

> > Yesterday, my daughter had an eye appointment, while we were

in the

> > waiting room, there was another woman there with her two

grandchildren.

> > was playing, and started to chew on some of the toys,

(she is

> > very oral)and I didn't think anything about it.....

> >

> > However, the one grandson asked his grandmother why was she

doing that?

> > The woman said There must be something WRONG with HER. I put

the

> > emphasis on the wrong because the way she said it. Not only

was it the

> > way she said it, it was the way she looked at , when

she said

> > it.

> >

> > She looked at my daughter as if she had the bubonic plague or

> > something! I wanted to snap back at her, but I was afraid what

I would

> > say, once I opened my mouth. I just got up, went over to

,

> > redirected her to another activity, got a antibacterial wipe,

and

> > cleaned the toy and dried it off.

> >

> > She still wouldn't let her grandson play with the toy, maybe

she

> > thought my daughter's germs were still on it. There was also

another

> > woman, she didn't say anything, but she also stared at

. I was

> > so glad when we left there.

> >

> > I would like to know, am I blowing this thing out of

propportion?

> > Would should I have said, that would have been deemed

appropriate? I

> > couldn't think of appropiate at the time, I was too mad! Has

anyone

> > here dealt with these type of situations and if so, what did

you do?

> > Maybe on top of everything that I have had to learn, about

taking care

> > of a CHARGE kid, maybe I need to take a class on how to deal

with rude

> > people....

> >

> > didn't notice anything, but I know that there will

come a

> > time that she will....I want to protect her as much as I can

from

> > people who are like that, but I know I won't always be there

when it

> > happens!

> >

> > Well,thanks for listening, I was upset and hurt, and I needed

to tell

> > somebody.

> >

> > n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace

1

> >

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

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

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org. For CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca, or

> > email info@c...

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

Posted

I like the one " what happend to your manners " I did get to say that a

week or so ago when someone asked me about my eyes.

Did anyone ever get the question is it contagious? ive goten that one.

My responce was no, (and very sarcasticly) but your rudeness certainly

is. :)

Walking away is good too.

Chantelle

Posted

This is my most normal responce to anyone who is asking sincearly

whats wrong with me (asked in a nice way) and i will just smile and

say i was born that way. Ive even done it for the occasional rude

parent at my work cause i have to be polite, lol! Its if i get rude

comments outside of work then i will probably now say nothing, whats

wrong with your manners (*remembers to thank for that one!*)

Chantelle

> When my nephew with CP was younger, I remember another child asking

him what

> was wrong with his hand. He looked at his hand as if he were

puzzled there

> was something wrong with it, then shrugged and said, " I was just

born with

> it that way. "

Posted

Hey i agree with you. I pity those people too. I walk funny and

sometimes laugh in slightly innapropreate times so ive had questions.

Worst was my manager last year asked me if i was drunk. I said quite

tursly (and hurt) that i wasnt and i just had scoliosis making my

walking a bit off. That zipped her up and she has been really nice to

me ever since.

Posted

n,

I think you reacted properly. You knew you might fly off the handle and say

something you'd regret, so you chose to say nothing. You took the high road,

which is hard in a case like this!

Honestly (thankfully), we've not encountered too many rude people with

yet. But I know the time will come when we will, and I wish I could be prepared

for it and handle it correctly. I'd like to have the temperament to address it

politely but frankly, but I just know, given my personality, that I'll tend to

go on the defensive right away and give the person a good tongue-lashing! I'm

going to have to work on this!!

Don't let this woman's rudeness and shallowness bug you too much. There are

plenty of people like her in the world, but thankfully, there are others who are

accepting and kind.

, mom to ( 3 1/2)

__________________________________________________

Posted

Your message helped me! I treasure your CHARGE'r opinions - and all of your

opinions and comments from our CHARGE'r population. It helps me understand how

my child feels or may feel and how I need to help protect her and respect her.

Lori Myers

--------- Re: How to deal with rude people

>

>

> n,

>

> When my nephew with CP was younger, I remember another child asking him what

> was wrong with his hand. He looked at his hand as if he were puzzled there

> was something wrong with it, then shrugged and said, " I was just born with

> it that way. " To him it was not wrong, it was just the way it was. The

> child asking did not imply that it was something bad like the woman did, it

> was his way of noticing that his hand didn't do what his hand could do.

> That is the attitude I want to teach all of my children, it is the

> difference in the asking. I want the other kids to learn that the things

> that are different to them are natural to us and that they do not need to

> shy away from us. I welcome their curiosity as an opportunity to teach

> this.

>

> I have had other kids at pools ask why Dylan still wears swim diapers - I

> just say his nerves don't work so well, so he can't feel the pee. They

> shrug and then they go back to playing in the water. They often stand and

> watch with interest as I bolus him and sometimes they will ask about it. I

> say something like, " when he drinks in his mouth, the milk goes in his lungs

> instead of his stomach - like drowning - so his milk goes right in his

> tummy.

>

> For the woman who hasn't had that learning yet and thinks different is bad,

> then I would smile at and direct my comments to the boy and say something

> positive about , like doesn't hear or see very well, so she

> likes to learn about things by how they feel in her mouth. Natural, matter

> of fact and non-confrontational with the woman. Hopefully her child will at

> least learn.

>

> But we all agree when we hear that tone of voice, mama bear wants to come

> out big time!

>

> Kim

>

>

>

>

> > Hello everyone,

> > Yesterday, my daughter had an eye appointment, while we were in the

> > waiting room, there was another woman there with her two grandchildren.

> > was playing, and started to chew on some of the toys,(she is

> > very oral)and I didn't think anything about it.....

> >

> > However, the one grandson asked his grandmother why was she doing that?

> > The woman said There must be something WRONG with HER. I put the

> > emphasis on the wrong because the way she said it. Not only was it the

> > way she said it, it was the way she looked at , when she said

> > it.

> >

> > She looked at my daughter as if she had the bubonic plague or

> > something! I wanted to snap back at her, but I was afraid what I would

> > say, once I opened my mouth. I just got up, went over to ,

> > redirected her to another activity, got a antibacterial wipe, and

> > cleaned the toy and dried it off.

> >

> > She still wouldn't let her grandson play with the toy, maybe she

> > thought my daughter's germs were still on it. There was also another

> > woman, she didn't say anything, but she also stared at . I was

> > so glad when we left there.

> >

> > I would like to know, am I blowing this thing out of propportion?

> > Would should I have said, that would have been deemed appropriate? I

> > couldn't think of appropiate at the time, I was too mad! Has anyone

> > here dealt with these type of situations and if so, what did you do?

> > Maybe on top of everything that I have had to learn, about taking care

> > of a CHARGE kid, maybe I need to take a class on how to deal with rude

> > people....

> >

> > didn't notice anything, but I know that there will come a

> > time that she will....I want to protect her as much as I can from

> > people who are like that, but I know I won't always be there when it

> > happens!

> >

> > Well,thanks for listening, I was upset and hurt, and I needed to tell

> > somebody.

> >

> > n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

> >

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership in

> the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> > information and membership, please visit http://www.chargesyndrome.ca, or

> > email info@....

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

Posted

im still learning to just ignore, i still find it hard though, I was with my

friend who has a daughter with CHARGE a few months ago and we were in the

supermarket and some guy gave her daughter the biggest " what the hell is

wrong with YOU " look (shse like 4 and i dont thnk she lokos that different,

i think i look a lot " different " then her lol) i got so pissed off, started

saying to my friend i cant b elieve people do that, was amazed that she

could just ignore it, i wish i could just ignore it..

Posted

What annoys me to is sometimes people seem to think you just cant say

anything about it, I at a friends house a couple years ago and her niece who

was about 7 asked me what was wrong with my eye, she didtn say it in a mean

way or anything, she was just curious 7 year old asking nicely, My friend

was like SHHH DONT SAY THAT ITS RUDE that REALLY annoyed me that my friend

said that, im not sure whyu

anyway sorry for rambling lol

Posted

uh what the hell is wrong with a 2 year old child chewing on something? i

think u had a right to be angyr, i think tis great u jsut ignored it to, i

am very spontanious when i get angry, so i needa learn to shut my mouth

How to deal with rude people

> Hello everyone,

> Yesterday, my daughter had an eye appointment, while we were in the

> waiting room, there was another woman there with her two grandchildren.

> was playing, and started to chew on some of the toys,(she is

> very oral)and I didn't think anything about it.....

>

> However, the one grandson asked his grandmother why was she doing that?

> The woman said There must be something WRONG with HER. I put the

> emphasis on the wrong because the way she said it. Not only was it the

> way she said it, it was the way she looked at , when she said

> it.

>

> She looked at my daughter as if she had the bubonic plague or

> something! I wanted to snap back at her, but I was afraid what I would

> say, once I opened my mouth. I just got up, went over to ,

> redirected her to another activity, got a antibacterial wipe, and

> cleaned the toy and dried it off.

>

> She still wouldn't let her grandson play with the toy, maybe she

> thought my daughter's germs were still on it. There was also another

> woman, she didn't say anything, but she also stared at . I was

> so glad when we left there.

>

> I would like to know, am I blowing this thing out of propportion?

> Would should I have said, that would have been deemed appropriate? I

> couldn't think of appropiate at the time, I was too mad! Has anyone

> here dealt with these type of situations and if so, what did you do?

> Maybe on top of everything that I have had to learn, about taking care

> of a CHARGE kid, maybe I need to take a class on how to deal with rude

> people....

>

> didn't notice anything, but I know that there will come a

> time that she will....I want to protect her as much as I can from

> people who are like that, but I know I won't always be there when it

> happens!

>

> Well,thanks for listening, I was upset and hurt, and I needed to tell

> somebody.

>

> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

Posted

ha yeah christines whats wrong with ur manners is cool

Re: How to deal with rude people

> This is my most normal responce to anyone who is asking sincearly

> whats wrong with me (asked in a nice way) and i will just smile and

> say i was born that way. Ive even done it for the occasional rude

> parent at my work cause i have to be polite, lol! Its if i get rude

> comments outside of work then i will probably now say nothing, whats

> wrong with your manners (*remembers to thank for that one!*)

>

> Chantelle

>

>> When my nephew with CP was younger, I remember another child asking

> him what

>> was wrong with his hand. He looked at his hand as if he were

> puzzled there

>> was something wrong with it, then shrugged and said, " I was just

> born with

>> it that way. "

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

Posted

n,

I am so sorry for that. People can be harsh.

I for one would have looked directly at the woman and said there is nothing

WRONG with my daughter.

But then I would have kindly talked to her grandchildren and told them

something simple like there isn't anything wrong-just different. I would have

then

said something about the reason she was chewing on things and maybe give the

children some information in a way that they could grasp, depending on their

age, and said she has something called CHARGE Syndrome. Although the

grandmother is harsh the children don't have to be taught the same. They can

and do

grow up differently.

I also have to say in their defense I never let my children touch toys that

other children had in their mouths-any child. That's because of germs and

stuff.

Bonnie, mom to a 22, Patty CHARGE 20, and wife to

Posted

Hi n,

I know exactly how you are feeling. Hayley gets alot of stares especially

from adults and it becomes quite frustrating. I let the ones that go that

have a quick stare but the ones that continue to stare and/or you can tell

they are discussing her.. I go right over to them and polite say " Does she

have anything of yours? If so, I will get it and give it back " . By golly

they don't know what to do or say, then i just kiss my daughter and move

on or continue doing what we were doing. ( It is mainly when I am feeding

her via her PEG that she gets stared at)

mum to Hayley 17 months old

Australia

Hello everyone,

> Yesterday, my daughter had an eye appointment, while we were in the

> waiting room, there was another woman there with her two grandchildren.

> was playing, and started to chew on some of the toys,(she is

> very oral)and I didn't think anything about it.....

>

> However, the one grandson asked his grandmother why was she doing that?

> The woman said There must be something WRONG with HER. I put the

> emphasis on the wrong because the way she said it. Not only was it the

> way she said it, it was the way she looked at , when she said

> it.

>

> She looked at my daughter as if she had the bubonic plague or

> something! I wanted to snap back at her, but I was afraid what I would

> say, once I opened my mouth. I just got up, went over to ,

> redirected her to another activity, got a antibacterial wipe, and

> cleaned the toy and dried it off.

>

> She still wouldn't let her grandson play with the toy, maybe she

> thought my daughter's germs were still on it. There was also another

> woman, she didn't say anything, but she also stared at . I was

> so glad when we left there.

>

> I would like to know, am I blowing this thing out of propportion?

> Would should I have said, that would have been deemed appropriate? I

> couldn't think of appropiate at the time, I was too mad! Has anyone

> here dealt with these type of situations and if so, what did you do?

> Maybe on top of everything that I have had to learn, about taking care

> of a CHARGE kid, maybe I need to take a class on how to deal with rude

> people....

>

> didn't notice anything, but I know that there will come a

> time that she will....I want to protect her as much as I can from

> people who are like that, but I know I won't always be there when it

> happens!

>

> Well,thanks for listening, I was upset and hurt, and I needed to tell

> somebody.

>

> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

Posted

love love that one niclole love it ill reply to this tomorrwo its getting

late no ill quickly reply now gosh idiots ive had pelople look at me liek

what s up im like nothing if you dotn like this well go away now and its

true lol some of our teachers and aides critisise soem of the people in the

support unit for laughing when eating this one girl chews her food hole and

chokes well i believe its the way she is but no they say we arent going to

feed you yoru not hungry blah blah and they dont let her say yes i am kim

funny enough she has cp lol donno why i wanted you to know that but i did

ellen

>

> Hi n,

>

> I know exactly how you are feeling. Hayley gets alot of stares especially

> from adults and it becomes quite frustrating. I let the ones that go that

> have a quick stare but the ones that continue to stare and/or you can tell

> they are discussing her.. I go right over to them and polite say " Does she

> have anything of yours? If so, I will get it and give it back " . By golly

> they don't know what to do or say, then i just kiss my daughter and move

> on or continue doing what we were doing. ( It is mainly when I am feeding

> her via her PEG that she gets stared at)

>

> mum to Hayley 17 months old

> Australia

>

>

>

>

>

> Hello everyone,

> > Yesterday, my daughter had an eye appointment, while we were in the

> > waiting room, there was another woman there with her two grandchildren.

> > was playing, and started to chew on some of the toys,(she is

> > very oral)and I didn't think anything about it.....

> >

> > However, the one grandson asked his grandmother why was she doing that?

> > The woman said There must be something WRONG with HER. I put the

> > emphasis on the wrong because the way she said it. Not only was it the

> > way she said it, it was the way she looked at , when she said

> > it.

> >

> > She looked at my daughter as if she had the bubonic plague or

> > something! I wanted to snap back at her, but I was afraid what I would

> > say, once I opened my mouth. I just got up, went over to ,

> > redirected her to another activity, got a antibacterial wipe, and

> > cleaned the toy and dried it off.

> >

> > She still wouldn't let her grandson play with the toy, maybe she

> > thought my daughter's germs were still on it. There was also another

> > woman, she didn't say anything, but she also stared at . I was

> > so glad when we left there.

> >

> > I would like to know, am I blowing this thing out of propportion?

> > Would should I have said, that would have been deemed appropriate? I

> > couldn't think of appropiate at the time, I was too mad! Has anyone

> > here dealt with these type of situations and if so, what did you do?

> > Maybe on top of everything that I have had to learn, about taking care

> > of a CHARGE kid, maybe I need to take a class on how to deal with rude

> > people....

> >

> > didn't notice anything, but I know that there will come a

> > time that she will....I want to protect her as much as I can from

> > people who are like that, but I know I won't always be there when it

> > happens!

> >

> > Well,thanks for listening, I was upset and hurt, and I needed to tell

> > somebody.

> >

> > n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

> >

> >

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership

> in

> > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

> Canada

> > information and membership, please visit http://www.chargesyndrome.ca,

> or

> > email info@....

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

> 1-.

> >

Posted

Am I a typical aussie ellen lol

nicole

love love that one niclole love it ill reply to this tomorrwo its getting

> late no ill quickly reply now gosh idiots ive had pelople look at me liek

> what s up im like nothing if you dotn like this well go away now and its

> true lol some of our teachers and aides critisise soem of the people in

> the

> support unit for laughing when eating this one girl chews her food hole

> and

> chokes well i believe its the way she is but no they say we arent going to

> feed you yoru not hungry blah blah and they dont let her say yes i am kim

> funny enough she has cp lol donno why i wanted you to know that but i did

> ellen

>

>

>>

>> Hi n,

>>

>> I know exactly how you are feeling. Hayley gets alot of stares

>> especially

>> from adults and it becomes quite frustrating. I let the ones that go

>> that

>> have a quick stare but the ones that continue to stare and/or you can

>> tell

>> they are discussing her.. I go right over to them and polite say " Does

>> she

>> have anything of yours? If so, I will get it and give it back " . By golly

>> they don't know what to do or say, then i just kiss my daughter and move

>> on or continue doing what we were doing. ( It is mainly when I am

>> feeding

>> her via her PEG that she gets stared at)

>>

>> mum to Hayley 17 months old

>> Australia

>>

>>

>>

>>

>>

>> Hello everyone,

>> > Yesterday, my daughter had an eye appointment, while we were in the

>> > waiting room, there was another woman there with her two

>> grandchildren.

>> > was playing, and started to chew on some of the toys,(she is

>> > very oral)and I didn't think anything about it.....

>> >

>> > However, the one grandson asked his grandmother why was she doing

>> that?

>> > The woman said There must be something WRONG with HER. I put the

>> > emphasis on the wrong because the way she said it. Not only was it the

>> > way she said it, it was the way she looked at , when she said

>> > it.

>> >

>> > She looked at my daughter as if she had the bubonic plague or

>> > something! I wanted to snap back at her, but I was afraid what I would

>> > say, once I opened my mouth. I just got up, went over to ,

>> > redirected her to another activity, got a antibacterial wipe, and

>> > cleaned the toy and dried it off.

>> >

>> > She still wouldn't let her grandson play with the toy, maybe she

>> > thought my daughter's germs were still on it. There was also another

>> > woman, she didn't say anything, but she also stared at . I was

>> > so glad when we left there.

>> >

>> > I would like to know, am I blowing this thing out of propportion?

>> > Would should I have said, that would have been deemed appropriate? I

>> > couldn't think of appropiate at the time, I was too mad! Has anyone

>> > here dealt with these type of situations and if so, what did you do?

>> > Maybe on top of everything that I have had to learn, about taking care

>> > of a CHARGE kid, maybe I need to take a class on how to deal with rude

>> > people....

>> >

>> > didn't notice anything, but I know that there will come a

>> > time that she will....I want to protect her as much as I can from

>> > people who are like that, but I know I won't always be there when it

>> > happens!

>> >

>> > Well,thanks for listening, I was upset and hurt, and I needed to tell

>> > somebody.

>> >

>> > n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > Membership of this email support groups does not constitute membership

>> in

>> > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> > For information about the CHARGE Syndrome

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

>> > please contact marion@... or visit

>> > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

>> Canada

>> > information and membership, please visit http://www.chargesyndrome.ca,

>> or

>> > email info@....

>> > 8th International

>> > CHARGE Syndrome Conference, July, 2007. Information will be available

>> at

>> > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

>> 1-.

>> >

Posted

The woman in the post office, certainly went beyond simple ignorance to

definite rudeness and even beyond that into unexscusable behavior for

anyone. I am glad the others stood up for you!

Kim

> Even as an adult people still come up to me and ask things like " what's wrong

> with you? " or my favorite " Were you in an accident or something? " . To the

> question of something being wrong, I often say, " Nothing is wrong with me, but

> I think there's something wrong with your manners. " That is a good slap in the

> face to people on the appropriateness of their question. And to the accident

> question I say " No, why is there something wrong? " .

>

> I have only ever lost my temper once. It was a very ugly situation and the

> first time anyone had ever come up to me. I was standing in line at a post

> office and this elderly woman was infront of me and turned around to look at

> me and says " Oh my, what happened to your face! " I just stood and ignored her.

> Then she turns around and starts talking to other people saying things like

> " Oh that poor girl, I dont think she realizes there's anything wrong with her,

> shame the doctors cant help her " and so on. I finally got to the boiling

> point, turned and faced her and said " F#$# off. " Well! She was quite in shock!

> She was furious! She started saying to everyone " I cant believe the manners of

> her, she's so rude " and blah blah. Well one guy turned to her and said " Lady,

> you deserved that. " And then she just shut her mouth and wouldn't say another

> word. It felt good everyone else was on my side. But certainly not one of my

> favorite moments.

>

> I've learned when people stare to put the ball back in their court, " Is there

> something I can help you with? " . And they realize they have been caught and

> turn away. Its not always easy. I've started swimming three times a week and

> last Friday I had a couple teenage girls in my lane who would actually stop

> and stare at me as I swam by. I couldn't say anything to them as when I swim I

> cant hear as I have to take my hearing aid out. Its not a fun thing to be

> always be stared at and treated differently, but there certainly are ways to

> get people back on track. And all else fails, I just walk away. Hope my rant

> somewhat helps!

>

>

> Re: How to deal with rude people

>

>

> n,

>

> When my nephew with CP was younger, I remember another child asking him what

> was wrong with his hand. He looked at his hand as if he were puzzled there

> was something wrong with it, then shrugged and said, " I was just born with

> it that way. " To him it was not wrong, it was just the way it was. The

> child asking did not imply that it was something bad like the woman did, it

> was his way of noticing that his hand didn't do what his hand could do.

> That is the attitude I want to teach all of my children, it is the

> difference in the asking. I want the other kids to learn that the things

> that are different to them are natural to us and that they do not need to

> shy away from us. I welcome their curiosity as an opportunity to teach

> this.

>

> I have had other kids at pools ask why Dylan still wears swim diapers - I

> just say his nerves don't work so well, so he can't feel the pee. They

> shrug and then they go back to playing in the water. They often stand and

> watch with interest as I bolus him and sometimes they will ask about it. I

> say something like, " when he drinks in his mouth, the milk goes in his lungs

> instead of his stomach - like drowning - so his milk goes right in his

> tummy.

>

> For the woman who hasn't had that learning yet and thinks different is bad,

> then I would smile at and direct my comments to the boy and say something

> positive about , like doesn't hear or see very well, so she

> likes to learn about things by how they feel in her mouth. Natural, matter

> of fact and non-confrontational with the woman. Hopefully her child will at

> least learn.

>

> But we all agree when we hear that tone of voice, mama bear wants to come

> out big time!

>

> Kim

>

>

>

>

>> Hello everyone,

>> Yesterday, my daughter had an eye appointment, while we were in the

>> waiting room, there was another woman there with her two grandchildren.

>> was playing, and started to chew on some of the toys,(she is

>> very oral)and I didn't think anything about it.....

>>

>> However, the one grandson asked his grandmother why was she doing that?

>> The woman said There must be something WRONG with HER. I put the

>> emphasis on the wrong because the way she said it. Not only was it the

>> way she said it, it was the way she looked at , when she said

>> it.

>>

>> She looked at my daughter as if she had the bubonic plague or

>> something! I wanted to snap back at her, but I was afraid what I would

>> say, once I opened my mouth. I just got up, went over to ,

>> redirected her to another activity, got a antibacterial wipe, and

>> cleaned the toy and dried it off.

>>

>> She still wouldn't let her grandson play with the toy, maybe she

>> thought my daughter's germs were still on it. There was also another

>> woman, she didn't say anything, but she also stared at . I was

>> so glad when we left there.

>>

>> I would like to know, am I blowing this thing out of propportion?

>> Would should I have said, that would have been deemed appropriate? I

>> couldn't think of appropiate at the time, I was too mad! Has anyone

>> here dealt with these type of situations and if so, what did you do?

>> Maybe on top of everything that I have had to learn, about taking care

>> of a CHARGE kid, maybe I need to take a class on how to deal with rude

>> people....

>>

>> didn't notice anything, but I know that there will come a

>> time that she will....I want to protect her as much as I can from

>> people who are like that, but I know I won't always be there when it

>> happens!

>>

>> Well,thanks for listening, I was upset and hurt, and I needed to tell

>> somebody.

>>

>> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>>

>>

>>

>>

>>

>>

>>

>> Membership of this email support groups does not constitute membership in the

>> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> For information about the CHARGE Syndrome

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

>> please contact marion@... or visit

>> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

>> information and membership, please visit http://www.chargesyndrome.ca, or

>> email info@....

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org or by calling 1-.

>>

Posted

yep definate aussie niclole like me love yah hows haley going

>

> The woman in the post office, certainly went beyond simple ignorance to

> definite rudeness and even beyond that into unexscusable behavior for

> anyone. I am glad the others stood up for you!

>

> Kim

>

>

>

>

> > Even as an adult people still come up to me and ask things like " what's

> wrong

> > with you? " or my favorite " Were you in an accident or something? " . To

> the

> > question of something being wrong, I often say, " Nothing is wrong with

> me, but

> > I think there's something wrong with your manners. " That is a good slap

> in the

> > face to people on the appropriateness of their question. And to the

> accident

> > question I say " No, why is there something wrong? " .

> >

> > I have only ever lost my temper once. It was a very ugly situation and

> the

> > first time anyone had ever come up to me. I was standing in line at a

> post

> > office and this elderly woman was infront of me and turned around to

> look at

> > me and says " Oh my, what happened to your face! " I just stood and

> ignored her.

> > Then she turns around and starts talking to other people saying things

> like

> > " Oh that poor girl, I dont think she realizes there's anything wrong

> with her,

> > shame the doctors cant help her " and so on. I finally got to the boiling

> > point, turned and faced her and said " F#$# off. " Well! She was quite in

> shock!

> > She was furious! She started saying to everyone " I cant believe the

> manners of

> > her, she's so rude " and blah blah. Well one guy turned to her and said

> " Lady,

> > you deserved that. " And then she just shut her mouth and wouldn't say

> another

> > word. It felt good everyone else was on my side. But certainly not one

> of my

> > favorite moments.

> >

> > I've learned when people stare to put the ball back in their court, " Is

> there

> > something I can help you with? " . And they realize they have been caught

> and

> > turn away. Its not always easy. I've started swimming three times a week

> and

> > last Friday I had a couple teenage girls in my lane who would actually

> stop

> > and stare at me as I swam by. I couldn't say anything to them as when I

> swim I

> > cant hear as I have to take my hearing aid out. Its not a fun thing to

> be

> > always be stared at and treated differently, but there certainly are

> ways to

> > get people back on track. And all else fails, I just walk away. Hope my

> rant

> > somewhat helps!

> >

> >

> > Re: How to deal with rude people

> >

> >

> > n,

> >

> > When my nephew with CP was younger, I remember another child asking him

> what

> > was wrong with his hand. He looked at his hand as if he were puzzled

> there

> > was something wrong with it, then shrugged and said, " I was just born

> with

> > it that way. " To him it was not wrong, it was just the way it was. The

> > child asking did not imply that it was something bad like the woman did,

> it

> > was his way of noticing that his hand didn't do what his hand could do.

> > That is the attitude I want to teach all of my children, it is the

> > difference in the asking. I want the other kids to learn that the things

> > that are different to them are natural to us and that they do not need

> to

> > shy away from us. I welcome their curiosity as an opportunity to teach

> > this.

> >

> > I have had other kids at pools ask why Dylan still wears swim diapers -

> I

> > just say his nerves don't work so well, so he can't feel the pee. They

> > shrug and then they go back to playing in the water. They often stand

> and

> > watch with interest as I bolus him and sometimes they will ask about it.

> I

> > say something like, " when he drinks in his mouth, the milk goes in his

> lungs

> > instead of his stomach - like drowning - so his milk goes right in his

> > tummy.

> >

> > For the woman who hasn't had that learning yet and thinks different is

> bad,

> > then I would smile at and direct my comments to the boy and say

> something

> > positive about , like doesn't hear or see very well, so

> she

> > likes to learn about things by how they feel in her mouth. Natural,

> matter

> > of fact and non-confrontational with the woman. Hopefully her child will

> at

> > least learn.

> >

> > But we all agree when we hear that tone of voice, mama bear wants to

> come

> > out big time!

> >

> > Kim

> >

> >

> >

> >

> >> Hello everyone,

> >> Yesterday, my daughter had an eye appointment, while we were in the

> >> waiting room, there was another woman there with her two grandchildren.

> >> was playing, and started to chew on some of the toys,(she is

> >> very oral)and I didn't think anything about it.....

> >>

> >> However, the one grandson asked his grandmother why was she doing that?

> >> The woman said There must be something WRONG with HER. I put the

> >> emphasis on the wrong because the way she said it. Not only was it the

> >> way she said it, it was the way she looked at , when she said

> >> it.

> >>

> >> She looked at my daughter as if she had the bubonic plague or

> >> something! I wanted to snap back at her, but I was afraid what I would

> >> say, once I opened my mouth. I just got up, went over to ,

> >> redirected her to another activity, got a antibacterial wipe, and

> >> cleaned the toy and dried it off.

> >>

> >> She still wouldn't let her grandson play with the toy, maybe she

> >> thought my daughter's germs were still on it. There was also another

> >> woman, she didn't say anything, but she also stared at . I was

> >> so glad when we left there.

> >>

> >> I would like to know, am I blowing this thing out of propportion?

> >> Would should I have said, that would have been deemed appropriate? I

> >> couldn't think of appropiate at the time, I was too mad! Has anyone

> >> here dealt with these type of situations and if so, what did you do?

> >> Maybe on top of everything that I have had to learn, about taking care

> >> of a CHARGE kid, maybe I need to take a class on how to deal with rude

> >> people....

> >>

> >> didn't notice anything, but I know that there will come a

> >> time that she will....I want to protect her as much as I can from

> >> people who are like that, but I know I won't always be there when it

> >> happens!

> >>

> >> Well,thanks for listening, I was upset and hurt, and I needed to tell

> >> somebody.

> >>

> >> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

> >>

> >>

> >>

> >>

> >>

> >>

> >>

> >> Membership of this email support groups does not constitute membership

> in the

> >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >> For information about the CHARGE Syndrome

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

> >> please contact marion@... or visit

> >> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

> Canada

> >> information and membership, please visit http://www.chargesyndrome.ca,

> or

> >> email info@....

> >> 8th International

> >> CHARGE Syndrome Conference, July, 2007. Information will be available

> at

> >> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

> 1-.

> >>

Posted

:-)

Hayley not 100% well.. just spent 3 days in hospital as she was struggling

to breath over the weekend.

She is home but for how long I dont know... she has 72 hours to improve

otherwise she goes back in :-(

yep definate aussie niclole like me love yah hows haley going

>

>

>>

>> The woman in the post office, certainly went beyond simple ignorance to

>> definite rudeness and even beyond that into unexscusable behavior for

>> anyone. I am glad the others stood up for you!

>>

>> Kim

>>

>>

>>

>>

>> > Even as an adult people still come up to me and ask things like

>> " what's

>> wrong

>> > with you? " or my favorite " Were you in an accident or something? " . To

>> the

>> > question of something being wrong, I often say, " Nothing is wrong with

>> me, but

>> > I think there's something wrong with your manners. " That is a good

>> slap

>> in the

>> > face to people on the appropriateness of their question. And to the

>> accident

>> > question I say " No, why is there something wrong? " .

>> >

>> > I have only ever lost my temper once. It was a very ugly situation and

>> the

>> > first time anyone had ever come up to me. I was standing in line at a

>> post

>> > office and this elderly woman was infront of me and turned around to

>> look at

>> > me and says " Oh my, what happened to your face! " I just stood and

>> ignored her.

>> > Then she turns around and starts talking to other people saying things

>> like

>> > " Oh that poor girl, I dont think she realizes there's anything wrong

>> with her,

>> > shame the doctors cant help her " and so on. I finally got to the

>> boiling

>> > point, turned and faced her and said " F#$# off. " Well! She was quite

>> in

>> shock!

>> > She was furious! She started saying to everyone " I cant believe the

>> manners of

>> > her, she's so rude " and blah blah. Well one guy turned to her and said

>> " Lady,

>> > you deserved that. " And then she just shut her mouth and wouldn't say

>> another

>> > word. It felt good everyone else was on my side. But certainly not one

>> of my

>> > favorite moments.

>> >

>> > I've learned when people stare to put the ball back in their court,

>> " Is

>> there

>> > something I can help you with? " . And they realize they have been

>> caught

>> and

>> > turn away. Its not always easy. I've started swimming three times a

>> week

>> and

>> > last Friday I had a couple teenage girls in my lane who would actually

>> stop

>> > and stare at me as I swam by. I couldn't say anything to them as when

>> I

>> swim I

>> > cant hear as I have to take my hearing aid out. Its not a fun thing to

>> be

>> > always be stared at and treated differently, but there certainly are

>> ways to

>> > get people back on track. And all else fails, I just walk away. Hope

>> my

>> rant

>> > somewhat helps!

>> >

>> >

>> > Re: How to deal with rude people

>> >

>> >

>> > n,

>> >

>> > When my nephew with CP was younger, I remember another child asking

>> him

>> what

>> > was wrong with his hand. He looked at his hand as if he were puzzled

>> there

>> > was something wrong with it, then shrugged and said, " I was just born

>> with

>> > it that way. " To him it was not wrong, it was just the way it was. The

>> > child asking did not imply that it was something bad like the woman

>> did,

>> it

>> > was his way of noticing that his hand didn't do what his hand could

>> do.

>> > That is the attitude I want to teach all of my children, it is the

>> > difference in the asking. I want the other kids to learn that the

>> things

>> > that are different to them are natural to us and that they do not need

>> to

>> > shy away from us. I welcome their curiosity as an opportunity to teach

>> > this.

>> >

>> > I have had other kids at pools ask why Dylan still wears swim diapers

>> -

>> I

>> > just say his nerves don't work so well, so he can't feel the pee. They

>> > shrug and then they go back to playing in the water. They often stand

>> and

>> > watch with interest as I bolus him and sometimes they will ask about

>> it.

>> I

>> > say something like, " when he drinks in his mouth, the milk goes in his

>> lungs

>> > instead of his stomach - like drowning - so his milk goes right in his

>> > tummy.

>> >

>> > For the woman who hasn't had that learning yet and thinks different is

>> bad,

>> > then I would smile at and direct my comments to the boy and say

>> something

>> > positive about , like doesn't hear or see very well,

>> so

>> she

>> > likes to learn about things by how they feel in her mouth. Natural,

>> matter

>> > of fact and non-confrontational with the woman. Hopefully her child

>> will

>> at

>> > least learn.

>> >

>> > But we all agree when we hear that tone of voice, mama bear wants to

>> come

>> > out big time!

>> >

>> > Kim

>> >

>> >

>> >

>> >

>> >> Hello everyone,

>> >> Yesterday, my daughter had an eye appointment, while we were in the

>> >> waiting room, there was another woman there with her two

>> grandchildren.

>> >> was playing, and started to chew on some of the toys,(she is

>> >> very oral)and I didn't think anything about it.....

>> >>

>> >> However, the one grandson asked his grandmother why was she doing

>> that?

>> >> The woman said There must be something WRONG with HER. I put the

>> >> emphasis on the wrong because the way she said it. Not only was it

>> the

>> >> way she said it, it was the way she looked at , when she said

>> >> it.

>> >>

>> >> She looked at my daughter as if she had the bubonic plague or

>> >> something! I wanted to snap back at her, but I was afraid what I

>> would

>> >> say, once I opened my mouth. I just got up, went over to ,

>> >> redirected her to another activity, got a antibacterial wipe, and

>> >> cleaned the toy and dried it off.

>> >>

>> >> She still wouldn't let her grandson play with the toy, maybe she

>> >> thought my daughter's germs were still on it. There was also another

>> >> woman, she didn't say anything, but she also stared at . I

>> was

>> >> so glad when we left there.

>> >>

>> >> I would like to know, am I blowing this thing out of propportion?

>> >> Would should I have said, that would have been deemed appropriate? I

>> >> couldn't think of appropiate at the time, I was too mad! Has anyone

>> >> here dealt with these type of situations and if so, what did you do?

>> >> Maybe on top of everything that I have had to learn, about taking

>> care

>> >> of a CHARGE kid, maybe I need to take a class on how to deal with

>> rude

>> >> people....

>> >>

>> >> didn't notice anything, but I know that there will come a

>> >> time that she will....I want to protect her as much as I can from

>> >> people who are like that, but I know I won't always be there when it

>> >> happens!

>> >>

>> >> Well,thanks for listening, I was upset and hurt, and I needed to tell

>> >> somebody.

>> >>

>> >> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

>> >>

>> >>

>> >>

>> >>

>> >>

>> >>

>> >>

>> >> Membership of this email support groups does not constitute

>> membership

>> in the

>> >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> >> For information about the CHARGE Syndrome

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

>> >> please contact marion@... or visit

>> >> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

>> Canada

>> >> information and membership, please visit

>> http://www.chargesyndrome.ca,

>> or

>> >> email info@....

>> >> 8th International

>> >> CHARGE Syndrome Conference, July, 2007. Information will be available

>> at

>> >> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

>> 1-.

>> >>

Posted

oh no and then youll have to sleep come on msn when u can xxxxxxxxxxx

>

> :-)

>

> Hayley not 100% well.. just spent 3 days in hospital as she was struggling

> to breath over the weekend.

>

> She is home but for how long I dont know... she has 72 hours to improve

> otherwise she goes back in :-(

>

>

>

>

> yep definate aussie niclole like me love yah hows haley going

> >

> >

> >>

> >> The woman in the post office, certainly went beyond simple ignorance to

> >> definite rudeness and even beyond that into unexscusable behavior for

> >> anyone. I am glad the others stood up for you!

> >>

> >> Kim

> >>

> >>

> >>

> >>

> >> > Even as an adult people still come up to me and ask things like

> >> " what's

> >> wrong

> >> > with you? " or my favorite " Were you in an accident or something? " . To

> >> the

> >> > question of something being wrong, I often say, " Nothing is wrong

> with

> >> me, but

> >> > I think there's something wrong with your manners. " That is a good

> >> slap

> >> in the

> >> > face to people on the appropriateness of their question. And to the

> >> accident

> >> > question I say " No, why is there something wrong? " .

> >> >

> >> > I have only ever lost my temper once. It was a very ugly situation

> and

> >> the

> >> > first time anyone had ever come up to me. I was standing in line at a

> >> post

> >> > office and this elderly woman was infront of me and turned around to

> >> look at

> >> > me and says " Oh my, what happened to your face! " I just stood and

> >> ignored her.

> >> > Then she turns around and starts talking to other people saying

> things

> >> like

> >> > " Oh that poor girl, I dont think she realizes there's anything wrong

> >> with her,

> >> > shame the doctors cant help her " and so on. I finally got to the

> >> boiling

> >> > point, turned and faced her and said " F#$# off. " Well! She was quite

> >> in

> >> shock!

> >> > She was furious! She started saying to everyone " I cant believe the

> >> manners of

> >> > her, she's so rude " and blah blah. Well one guy turned to her and

> said

> >> " Lady,

> >> > you deserved that. " And then she just shut her mouth and wouldn't say

> >> another

> >> > word. It felt good everyone else was on my side. But certainly not

> one

> >> of my

> >> > favorite moments.

> >> >

> >> > I've learned when people stare to put the ball back in their court,

> >> " Is

> >> there

> >> > something I can help you with? " . And they realize they have been

> >> caught

> >> and

> >> > turn away. Its not always easy. I've started swimming three times a

> >> week

> >> and

> >> > last Friday I had a couple teenage girls in my lane who would

> actually

> >> stop

> >> > and stare at me as I swam by. I couldn't say anything to them as when

> >> I

> >> swim I

> >> > cant hear as I have to take my hearing aid out. Its not a fun thing

> to

> >> be

> >> > always be stared at and treated differently, but there certainly are

> >> ways to

> >> > get people back on track. And all else fails, I just walk away. Hope

> >> my

> >> rant

> >> > somewhat helps!

> >> >

> >> >

> >> > Re: How to deal with rude people

> >> >

> >> >

> >> > n,

> >> >

> >> > When my nephew with CP was younger, I remember another child asking

> >> him

> >> what

> >> > was wrong with his hand. He looked at his hand as if he were puzzled

> >> there

> >> > was something wrong with it, then shrugged and said, " I was just born

> >> with

> >> > it that way. " To him it was not wrong, it was just the way it was.

> The

> >> > child asking did not imply that it was something bad like the woman

> >> did,

> >> it

> >> > was his way of noticing that his hand didn't do what his hand could

> >> do.

> >> > That is the attitude I want to teach all of my children, it is the

> >> > difference in the asking. I want the other kids to learn that the

> >> things

> >> > that are different to them are natural to us and that they do not

> need

> >> to

> >> > shy away from us. I welcome their curiosity as an opportunity to

> teach

> >> > this.

> >> >

> >> > I have had other kids at pools ask why Dylan still wears swim diapers

> >> -

> >> I

> >> > just say his nerves don't work so well, so he can't feel the pee.

> They

> >> > shrug and then they go back to playing in the water. They often stand

> >> and

> >> > watch with interest as I bolus him and sometimes they will ask about

> >> it.

> >> I

> >> > say something like, " when he drinks in his mouth, the milk goes in

> his

> >> lungs

> >> > instead of his stomach - like drowning - so his milk goes right in

> his

> >> > tummy.

> >> >

> >> > For the woman who hasn't had that learning yet and thinks different

> is

> >> bad,

> >> > then I would smile at and direct my comments to the boy and say

> >> something

> >> > positive about , like doesn't hear or see very well,

> >> so

> >> she

> >> > likes to learn about things by how they feel in her mouth. Natural,

> >> matter

> >> > of fact and non-confrontational with the woman. Hopefully her child

> >> will

> >> at

> >> > least learn.

> >> >

> >> > But we all agree when we hear that tone of voice, mama bear wants to

> >> come

> >> > out big time!

> >> >

> >> > Kim

> >> >

> >> >

> >> >

> >> >

> >> >> Hello everyone,

> >> >> Yesterday, my daughter had an eye appointment, while we were in the

> >> >> waiting room, there was another woman there with her two

> >> grandchildren.

> >> >> was playing, and started to chew on some of the toys,(she

> is

> >> >> very oral)and I didn't think anything about it.....

> >> >>

> >> >> However, the one grandson asked his grandmother why was she doing

> >> that?

> >> >> The woman said There must be something WRONG with HER. I put the

> >> >> emphasis on the wrong because the way she said it. Not only was it

> >> the

> >> >> way she said it, it was the way she looked at , when she

> said

> >> >> it.

> >> >>

> >> >> She looked at my daughter as if she had the bubonic plague or

> >> >> something! I wanted to snap back at her, but I was afraid what I

> >> would

> >> >> say, once I opened my mouth. I just got up, went over to ,

> >> >> redirected her to another activity, got a antibacterial wipe, and

> >> >> cleaned the toy and dried it off.

> >> >>

> >> >> She still wouldn't let her grandson play with the toy, maybe she

> >> >> thought my daughter's germs were still on it. There was also another

> >> >> woman, she didn't say anything, but she also stared at . I

> >> was

> >> >> so glad when we left there.

> >> >>

> >> >> I would like to know, am I blowing this thing out of propportion?

> >> >> Would should I have said, that would have been deemed appropriate? I

> >> >> couldn't think of appropiate at the time, I was too mad! Has anyone

> >> >> here dealt with these type of situations and if so, what did you do?

> >> >> Maybe on top of everything that I have had to learn, about taking

> >> care

> >> >> of a CHARGE kid, maybe I need to take a class on how to deal with

> >> rude

> >> >> people....

> >> >>

> >> >> didn't notice anything, but I know that there will come a

> >> >> time that she will....I want to protect her as much as I can from

> >> >> people who are like that, but I know I won't always be there when it

> >> >> happens!

> >> >>

> >> >> Well,thanks for listening, I was upset and hurt, and I needed to

> tell

> >> >> somebody.

> >> >>

> >> >> n-mom to Zach 9, Jordan 6, 2-CHARGE, and Candace 1

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >>

> >> >> Membership of this email support groups does not constitute

> >> membership

> >> in the

> >> >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> >> >> For information about the CHARGE Syndrome

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

> >> >> please contact marion@... or visit

> >> >> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

> >> Canada

> >> >> information and membership, please visit

> >> http://www.chargesyndrome.ca,

> >> or

> >> >> email info@....

> >> >> 8th International

> >> >> CHARGE Syndrome Conference, July, 2007. Information will be

> available

> >> at

> >> >> www.chargesyndrome.org <http://www.chargesyndrome.org> <

> http://www.chargesyndrome.org> or by calling

> >> 1-.

> >> >>

Posted

Sending healthy thoughts Hayley's way. Hang in there...

Hugs -

Michele W

Aubrie's mom 7 yrs

Tebble wrote:

> :-)

>

> Hayley not 100% well.. just spent 3 days in hospital as she was struggling

> to breath over the weekend.

>

> She is home but for how long I dont know... she has 72 hours to improve

> otherwise she goes back in :-(

>

>

>

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

>

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