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Colleen,

You're so right.

But just between us-just to each other-we can still vent off some of that

frustration, yes? When, between us, we can turn it to laughter-it's so

darned therapeutic! I need it.

;-)

in Ma.

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I have been one to reply sarcastically to those who make rude

comments to or regarding my daughter. However I had recently been

part of a disabilities awareness meeting at my church. There where

different forms of disabilities represented and I sat and listened to

their bitterness. Yes, I was amazed at the bitterness. They were

talking about how their issues affected them and I realized that

although I have a daughter with special needs, I am still so ignorant

of other needs out there. I continue to make stupid comments on

occasion. I listened as one man in a wheelchair described how a

person parked too close to him and he could not access his wheelchair

ramp on his car. He had to wait for that person to come out to

his/her car. He then went on to describe how he kindly explained how

their parking too close to a handicap parking spot might affect

others. His response was if he show kindness in his explanation,

they might remember and think twice when parking so close. He felt

that if he was rude or unkind, that they would not have been so

receprive to hearing him out. He was one of the few in the meeting

that did not show bitterness.

We strive to educate others regarding CHARGE Syndrome, what it means

for families and how others may help. Do we want to isolate others

who are, yes ignorant, to our situations because we are frustrated

that they don't understand? Before my daughter was born, I was not

exposed to many people with disabilities. I did not have family

members or friends with these types of things. I was one who made

those dumb comments. I am so thankful I was able to hear this man's

kind story. It has changed my approach to responding to rudeness.

Not always...I have bad days! :) Yes, some people are just rude.

But most are like I was. They just have never had that experieince

and truly do not understand.

Colleen

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Colleen-

From the experience of getting Rasha around and simply envisioning

the possiblility of a wheelchair ramp I had the same experience in a

parking lot as the man in your story. It made me realize how much I

never noticed before and how much I still don't notice even though

I'm actually trying now.

I did put a few of those one liners in my back pocket though.

Almost anything rude said with the right tone can still leave people

smiling! :-)

Janay

>

> I have been one to reply sarcastically to those who make rude

> comments to or regarding my daughter. However I had recently been

> part of a disabilities awareness meeting at my church. There

where

> different forms of disabilities represented and I sat and listened

to

> their bitterness. Yes, I was amazed at the bitterness. They were

> talking about how their issues affected them and I realized that

> although I have a daughter with special needs, I am still so

ignorant

> of other needs out there. I continue to make stupid comments on

> occasion. I listened as one man in a wheelchair described how a

> person parked too close to him and he could not access his

wheelchair

> ramp on his car. He had to wait for that person to come out to

> his/her car. He then went on to describe how he kindly explained

how

> their parking too close to a handicap parking spot might affect

> others. His response was if he show kindness in his explanation,

> they might remember and think twice when parking so close. He

felt

> that if he was rude or unkind, that they would not have been so

> receprive to hearing him out. He was one of the few in the

meeting

> that did not show bitterness.

>

> We strive to educate others regarding CHARGE Syndrome, what it

means

> for families and how others may help. Do we want to isolate

others

> who are, yes ignorant, to our situations because we are frustrated

> that they don't understand? Before my daughter was born, I was

not

> exposed to many people with disabilities. I did not have family

> members or friends with these types of things. I was one who made

> those dumb comments. I am so thankful I was able to hear this

man's

> kind story. It has changed my approach to responding to rudeness.

> Not always...I have bad days! :) Yes, some people are just

rude.

> But most are like I was. They just have never had that

experieince

> and truly do not understand.

>

> Colleen

>

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Colleen-

You are so right. If we want people to understand and to value our families

and our kids, we need to act worthy. We need to respond kindly and

graciously and teach them. Most of us were ignorant once.

Thanks for sharing your experience so openly. Oh- another thought - don't

you want to avoid becoming bitter and cynical?? I sure do! When I catch

myself leaning that way, I quickly do an about-face and center myself back

in kindness and faith in the goodness of others.

Michele W

Aubrie's mom

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Casey, of course there is your classic story of the dr. who came into your room

shortly after 's birth and discussed name options. Oh boy! That got a

reaction from your mom for sure!!!

Mom to Kendra, and Camille

Re: Rude Comments

,

Some of the 'old' folks here know this story but it hopefully will give you an

idea how some CHARGE kids handle the comments. was about 9yo when he went

to a crainial-facial clinic appt, when it came to the ENT guys one resident said

he HAD to have his ear fixed " NOW " ( he has one 'normal' and one CHARGE ear) I

told him that the plastics guy had said to wait til he was fully grown for the

effect to be the best. The guy just kept going on and on about it.. So finally

he talks straight to and says " Don't you want to look like the other

kids? " looks the guy up and down and says " It doesn't bother me why does

it bother you? " The others in the room that had known since birth cracked

up.. the guy looked soooooo embarassed. is so OK with his looks and most

everything that goes one with CHARGE that sometimes I just forget he has it.

It will be OK and believe me Jake and your family will learn to handle it,

from the intrigued and wanting to learn type and the really obnoxious and rude

types.

Casey

Mom to Dawn 28 HH, ADD, Bi-polar, Ken 17 ADD, Dysgraphic and 15 in three

weeks CHARGE

__________________________________________________

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OH man - is almost FIFTEEN!!!! He was like, 8 yesterday!

Yikes...

>

> Casey, of course there is your classic story of the dr. who came into

> your room shortly after 's birth and discussed name options. Oh boy!

> That got a reaction from your mom for sure!!!

>

>

> Mom to Kendra, and Camille

> Re: Rude Comments

>

> ,

>

> Some of the 'old' folks here know this story but it hopefully will give

> you an idea how some CHARGE kids handle the comments. was about 9yo

> when he went to a crainial-facial clinic appt, when it came to the ENT guys

> one resident said he HAD to have his ear fixed " NOW " ( he has one 'normal'

> and one CHARGE ear) I told him that the plastics guy had said to wait til he

> was fully grown for the effect to be the best. The guy just kept going on

> and on about it.. So finally he talks straight to and says " Don't you

> want to look like the other kids? " looks the guy up and down and says

> " It doesn't bother me why does it bother you? " The others in the room that

> had known since birth cracked up.. the guy looked soooooo embarassed.

> is so OK with his looks and most everything that goes one with CHARGE

> that sometimes I just forget he has it.

>

> It will be OK and believe me Jake and your family will learn to handle it,

> from the intrigued and wanting to learn type and the really obnoxious and

> rude types.

>

> Casey

> Mom to Dawn 28 HH, ADD, Bi-polar, Ken 17 ADD, Dysgraphic and 15 in

> three weeks CHARGE

>

> __________________________________________________

>

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Ohhhh i forget this story, i remember it being mentioned but i forget

the story.

Chantelle

>

> Casey, of course there is your classic story of the dr. who came into

your room shortly after 's birth and discussed name options. Oh

boy! That got a reaction from your mom for sure!!!

>

>

> Mom to Kendra, and Camille

>

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