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In a message dated 8/16/00 7:49:18 AM Central Daylight Time, jbocci55@...

writes:

> We didn't know had ds either until he was 1 month old. I don't know

> what I would have done, had a perfect stranger broke the news to me!

Yikes!

>

> Scary thought.

>

> Jackie, Mom to 12ds, 9, and Bradley 6

HI :)

I really feel for my oldest daughter who made me a grandmother at a such

young age Heehee we both are watching her new baby (he's 3 months now) for

any disABILITY lol she's already asked me if I thought he had Autism...he

doesn't like his hands touched, Sight problems.........he wasn't focussing

good, Hearing problems....he wouldn't jump at noises or focus on us when we

spoke lololol now my family has lived in the disABILITY world for 8 yrs,

sooooo many of our friends have children with Autism, Neuro motor, DS, and

other disABILITIES so I guess it's natural for us to watch baby Tate like a

hawk. I look at it this way, with me keeping him now, he's getting great EI

Heehee he'll be signing soon :)

Kathy mom to Sara 8

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In a message dated 8/16/00 8:08:40 AM Central Daylight Time, devitb@...

writes:

> Joy,

>

> That's why it happened to my hubby and not me. He was polite and moved

on.

>

> I would have been upset and probably bit his head off.

> lol...I guess I am not as understanding as some of you folks!

>

> Bonnie from Long Island

> Mom to -10, twins and (ds)-2 1/2

HI Bonnie :)

It must be a Walmart thing lol once in MS I was shopping and I had an elderly

lady approach Sara, she was about a year then, looking like an tiny infant,

only weighing 11lbs (she had heart surgery two months before that). Well this

very rude OLD lady asked her age, when I told her she was a year, she asked

why she was so small, I again informed her nicely that she has DS and had

open heart surgery at 10 months, weighing on 10lbs. She rudely replied with

" Ohhhhhhh what did you do during your pregnancy " I was soooo upset I left in

tears. was with me (she was middle school age then) and she told that

old lady " you are ugly " I guess we know where Sara gets her sass from lol

Well, anyway this still bothers me to this day, but I have a much tougher

skin and I still do get a bit defensive when folks approach, Sara is the one

who is an extrovert with strangers and with her smiling personality we have

not experienced anything ugly since :) You will get a tougher skin Heehee

the schools do that to you :)

Kathy mom to Sara 8

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Nope, it's not a Walmart thing, LOL. I used to think it was a grocery store

thing! When Ramona was a year old, she was very tiny, only 9 pounds. Her

skin tone was on the purple side, a lovely light violet <g>, due to her heart

condition that was not repaired at that time. An elderly lady reproached me

that my daughter was cold, put some clothes on her (it was 90 degrees outside

and Ramona was wearing a diaper and tshirt). She refused to believe me when

I said she was overheated, not cold, and actually came up and grabbed her

foot. The shock on her face when she felt warm skin!

And this wasn't even one of our usual ds encounters. It just goes to show

that a lot of folks feel the need to get their 2 cents in, I guess. I had

more people come up when she was little and ask if I realized that she had ds

than I can remember right now! It's amazing. Even more amazing were the

ones that asked me if I had considered not keeping her! I began saying

" pardon me, SHE is not deaf, SHE is not stupid, and SHE is sitting right

here! " That usually got me an embarrassed apology...I just wanted them to

THINK about what they were saying. Btw, one of my best friends, who has an

adopted son of color, deals with this sort of inquiry all the time...the

question there is " Is he yours? " . We laughed together (a shaking our heads,

can you believe it laugh, but a laugh nevertheless) over these questions when

we realized we were giving the same answer.

Anyway, for years now, I've decided to treat these moments as an opportunity

to raise the consciousness of the questioner. They wouldn't have approached

if they weren't curious in some way, I think. Some folks are just clumsier

than others.

Take care,

mom to Ramona, almost 17ds, Elena 21, and Clara 24 (who just got engaged!)

In a message dated 08/16/2000 8:24:53 AM Pacific Daylight Time,

M4858@... writes:

<<

It must be a Walmart thing lol once in MS I was shopping and I had an

elderly

lady approach Sara, she was about a year then, looking like an tiny infant,

only weighing 11lbs (she had heart surgery two months before that). Well

this

very rude OLD lady asked her age, when I told her she was a year, she asked

why she was so small, I again informed her nicely that she has DS and had

open heart surgery at 10 months, weighing on 10lbs. She rudely replied with

" Ohhhhhhh what did you do during your pregnancy " I was soooo upset I left in

tears. was with me (she was middle school age then) and she told

that

old lady " you are ugly " I guess we know where Sara gets her sass from lol

>>

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Well, that is pretty strange...Nobody noticed Maggie had Down syndrome until

she was 2+ months old! I thought maybe she did but wouldn't admit it to

anyone...I figured doctors would know and she had seen plenty in addition to

weekly visits to the pediatrician!

I haven't had any comments from strangers...my mother-in-law however drops

some doosies on me from time to time though. Once she asked if Maggie has

chubbette arms cause of Down syndrome! Then just the other day we were at a

carnival and Sara (non Ds twin) was acting like a pain...well, as any bored

20 month old who has been in a stroller for 3 hours would...and she goes,

Thank God for Down syndrome in some instances. Meaning, at least Maggie was

being mellow. I quickly informed her that Maggie is quite capable of acting

up...dumb is you ask me!

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In a message dated 8/16/00 1:07:19 PM Eastern Daylight Time,

l.emileane@... writes:

<< When I was pregnant I didn't have an amnio so Meghans DS was a surprise. I

have often said that the only reason I would in retrospect have an amnio was

so that I could have had time to prepare myself for peoples comments (as in

" if you had known you could have done something about IT...as if I would

have wanted to terminate...grrr)....... people were so sad for us and we

weren't sad....

>>

at jaykobs last appt. we didnt see his reg ped(and never again will we see

this one) he looked at me and said that i have to go get genic testing.. Well

i nicely exp to him.. mike and i were not going to have this done. and even

if we knew about the ds before jaykob was born we would have never terminated

him.. we watched him grow from a lil spot on a us screen to having a heart

beat. and almost every month from then on... i could never live mylife

knowing i killed my baby..(i know that this might be someones else is choise

but not ares) and this is were mike and i stand.. if we do go on to have

another baby in the future. we are not going to do anything different..

hugs

stacee

mommy to a great lil guy

jaykob-tyler(ds) 5-10-00

step mom to

maygan & makallah 6

and mikey 2 1/2

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i read bonnie's mail about the comment from the man in walmart...i understand it

might have been an innocent statement, but i still find it an odd thing to say

to a stranger.

if someone said to me, " do you know your son has down syndrome? " - i'd have to

be sure to ask him a question or two! i'd surely at least be wondering, " why

does it concern him? "

for me, it might be easier if his words were, " does your son have down

syndrome? " - that to me would be, as the wizard of oz says, a horse of a

different color. then i might wonder if he had someone in his family with ds,

etc. and might even engage in conversation!

wonder what he would say to a woman in her 8th month of pregnancy?

sandy

mom to erick (5, ds) and his 2 big sisters

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I have not had to deal with stupid comments about

's ds because he doesn't have as many facial

features. Last night we went to the park and my

husband was pushing on the swing. I was

pushing Holly and a little girl her same age (6). For

those who don't know, we adopted and he is

African American and we are white. The little girl I

was pushing questioned where Holly's daddy was and

Holly said with no hesitation, he's right there

pushing my brother. The little girl said but he is

black, I don't really like black people. YIKES! I

know has 2 strikes against him having ds and

being a minority, but it still doesn't help when

someone makes a stupid comment.

Tracey~(4ds),Brent(10),Holly(6)

__________________________________________________

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When I was pregnant I didn't have an amnio so Meghans DS was a surprise. I

have often said that the only reason I would in retrospect have an amnio was

so that I could have had time to prepare myself for peoples comments (as in

" if you had known you could have done something about IT...as if I would

have wanted to terminate...grrr)....... people were so sad for us and we

weren't sad....

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In a message dated 8/16/00 11:11:16 AM Central Daylight Time,

lumenasan@... writes:

<< Btw, one of my best friends, who has an

adopted son of color, deals with this sort of inquiry all the time...the

question there is " Is he yours? " . >>

I got this one a couple times regarding daughter no. 2. I'm a burnette with

brown eyes. and she a very light light blond with blue eyes (brown is

dominant right?) . hehe I always said , YEP. :-) funny thing was this

light blond was born with black hair on her head. LOL

Joy

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In a message dated 8/16/2000 6:51:41 PM Eastern Daylight Time,

JTesmer799@... writes:

<<

<< Btw, one of my best friends, who has an

adopted son of color, deals with this sort of inquiry all the time...the

question there is " Is he yours? " . >> >>

This is such an issue with adoptive families. One of my coworkers adopted a

girl who is biracial. She inherited genes for blond hair (but its getting

darker) and blue eyes. She has dark skin and kinky hair. She attends the

same school as her brother. Recently someone asked her why she and her

brother look nothing alike and her reply was " He looks like my mother and I

look like my father " ..spoken truthfully :) Her daughter still visits with

her bio dad....my friend thinks it's important to address the transracial

issues that her daughter and self will have..not to mention keep some kind of

bonding with the bio family.

I have had alot of people ask me if I adopted !!! My response has

always been, " oh no, can't you tell he looks just like me? " I've had alot of

rude questions and comments in the past 7 years....I try to be diplomatic but

sometimes its hard.

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I believe most of you have seen pics of my twins. Robby is dark. Dark hair,

dark eyes, olive skin (he gets the best tan). Nick has strawberry blond

hair, gray eyes and is very fair. Now if my dh and I are together people

understand. But when it is just one of us no one can believe they are

brothers let alone twins!

Bonnie from Long Island

Mom to -10, twins and (ds)-2 1/2

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In a message dated 8/16/00 7:50:29 PM Eastern Daylight Time, devitb@...

writes:

<< I believe most of you have seen pics of my twins. Robby is dark. Dark

hair,

dark eyes, olive skin (he gets the best tan). Nick has strawberry blond

hair, gray eyes and is very fair. Now if my dh and I are together people

understand. But when it is just one of us no one can believe they are

brothers let alone twins! >>

i have to reply to this one.. my sister has twins 3 joie-lynne is a red head

and tall and skinny and dakota anne is blond and puggy and a gymnist.. where

joie can not stand to have her hands dirty.. now if you look at my family

noone has red hair.. and no one ever thinks they are twins.. funny how genics

work

stacee

mommy to a great lil guy

jaykob-tyler(ds) 5-10-00

step mom to

maygan & makallah 6

and mikey 2 1/2

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Hi Bonnie

What an incredibly ODD comment for a complete stranger to make! I don't

believe that man, well dressed though he was, had all his marbles!

My latest stock standard reply to all who dare make stupid comments to me

about the girls, actually any comment annoys me. I just say " I BEG your

pardon? " sounding terribly insulted.........the other party invariably

starts stuttering and stammering which gives us the window of opportunity to

walk away leaving them no opportunity to reply! Works a treat! LOL.

Carolyn

Mum to on, , Emma (Ds) 4 and Nicki (Ds) 3

www.geocities.com/nz_mom/sykesfamily.html

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In a message dated 8/16/00 7:14:42 PM Eastern Daylight Time,

c1ndysue1@... writes:

<< I've had a lot of

rude questions and comments in the past 7 years....I try to be diplomatic

but

sometimes its hard. >>

I cannot say that I have experienced too many rude comments over the years.

But the people who think they are congratulating me on my patience or

something when they comment about how " They didn't think they could handle

all I do. " This drives me nuts. I am not a saint and you have to have

patience for all your kids. He is my child for ever. It does not make me a

saint because I choose to be a good parent for all my children. All parents

should be the same. Pam

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Hi Pam,

Wow, that's another one I've heard SO many times, basically since the day

Ramona was born, and it used to drive me crazy. Sometimes it still does

(depending on the phase of the moon, lol). Anymore, I just tell them that

you never know what you can do until you are called upon to do it. After

all, I can remember a time when I couldn't imagine it, either. We humans

have depths that some of us just aren't lucky enough to discover...

Take care,

mom to Ramona 16ds, +two lovely young adult women

In a message dated 08/17/2000 5:12:01 AM Pacific Daylight Time,

MJenney@... writes:

<< I cannot say that I have experienced too many rude comments over the

years.

But the people who think they are congratulating me on my patience or

something when they comment about how " They didn't think they could handle

all I do. " This drives me nuts. I am not a saint and you have to have

patience for all your kids. He is my child for ever. It does not make me a

saint because I choose to be a good parent for all my children. All parents

should be the same. Pam >>

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In a message dated 8/17/00 10:48:19 AM Central Daylight Time,

Shelby_C@... writes:

<< . (so she is starting to really panic) and then he

very seriously and somberly begins to " break " the news that her son has

DS...... DUUUUUUUHHHHHH..... she told me she could have slapped him!!! Here

she is thinking he is going to tell her something is really terribly wrong

with her son...... not to mention......that the fact that he has DS is IN

THE CHART.......

....needless to say she will not be seeing that doctor again!

No offense to Len - who is a wonderful Doctor!!!!

Shelby :-) - Chicago - ICQ 39583211

(Mother of Caitlin 10, Kelsey 8, Jimmy 6, Colleen 4 (DS), 2.) >>

You can look at this another way...........at least he was making good

observations.

:-) depending on how thick the chart is he may not have read the right area,

my observations are they normally just look through the most recent papers

(if you go to urgent care there are no recent papers cause they don't

normally pull the file unless you call in and request it before you come

in...mayo is putting all this stuff on their computers now tho..plus the hard

copy) they don't write down down syndrome every time you go in for things

like infections.

Joy :-)

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In a message dated 8/17/00 11:04:20 AM Central Daylight Time,

JTesmer799@... writes:

> You can look at this another way...........at least he was making good

> observations.

> :-) depending on how thick the chart is he may not have read the right

area,

>

> my observations are they normally just look through the most recent papers

> (if you go to urgent care there are no recent papers cause they don't

> normally pull the file unless you call in and request it before you come

> in...mayo is putting all this stuff on their computers now tho..plus the

> hard

> copy) they don't write down down syndrome every time you go in for things

> like infections.

>

> Joy :-)

HI :)

We have a wonderful Ped. but he has cracked me up on several occasions. He

will listen to Sara's heart, under her shirt, his glasses would drop down and

the he would say " hmmmmmm Sara might have a heart defect " or " hmmm this

sounds like a murmur "

I then have to remind him, she's had asd, vsd and pd repair. He'll lift her

shirt and giggle. He always apologizes :) I really don't get offended as he

doesn't see her often, well except for that 3 months span where he saw her

weekly :)

We usually deal with the illness at hand, so I imagine he doesn't read her

whole file then. Now at physicals he knows her like the back of his hand :)

Kathy mom to Sara 8..............who wasn't sick the entire summer :)

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Gosh, I guess I/we must be lucky. So far, no one has

made any comments about the boys that were less than

friendly! The only time that I can recall a total

stranger commenting about them was when I had them

with me at 's (a craft store), when I wanted to

get some pictures of them matted and framed. The man

at the framing counter looked at them and their

pictures then said " I have a very special grand

daughter like your boys, let me show you her picture " .

He started to tell me all about her and told me how

sad he was that he missed out on the first 9 mos. of

her life due to his fear and ignorance of DS. His

eyes started misting up and he told me that at a

family gathering his daughter-in-law walked up to him

with the baby, plopped her in his lap and said " I'm

not going to let you ignore her any longer, get over

it " and walked away. Well, his heart melted the

minute she was in his arms and he's been making up for

lost time ever since! Made me lucky that our families

were so supportive when the boys were born!

I'd like to think that when I do get a stupid comment,

that I've mentally prepared my response to be one that

will educate instead of responding to ignorance. But,

human nature being what it is, we'll have to see how

that goes! However, I do kinda like Car's response!!

Isn't it dear abby (or is it miss manners, I can never

remember!) that says when people ask you something

rude to just look them in the eye and say " why do you

want to know? " Depending on the situation, that might

work too!

Judi

__________________________________________________

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> >>

> at jaykobs last appt. we didnt see his reg ped(and never again will we see

> this one) he looked at me and said that i have to go get genic testing..

Well

I can't recall any " Stupid Comment " about Colleen.... but a friend from EI

has a son with DS who has the mildest features I have ever seen.... and once

she was at the DOCTOR's office and her reg ped was out and she was seeing

this new guy...

Her son was about 3 years old.... and had an infection on his finger, sinus

infection and impetigo around his mouth/nose (maybe an ear infection too - I

can't remember).... and this doc comes in briefly examines and then tells

the mom to sit down.... (so she is starting to really panic) and then he

very seriously and somberly begins to " break " the news that her son has

DS...... DUUUUUUUHHHHHH..... she told me she could have slapped him!!! Here

she is thinking he is going to tell her something is really terribly wrong

with her son...... not to mention......that the fact that he has DS is IN

THE CHART.......

.....needless to say she will not be seeing that doctor again!

No offense to Len - who is a wonderful Doctor!!!!

Shelby :-) - Chicago - ICQ 39583211

(Mother of Caitlin 10, Kelsey 8, Jimmy 6, Colleen 4 (DS), 2.)

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my mom comes out with things sometimes too.. she doesn't think about the

things she says, but they bother me. I know she loves him, but she is

learning and sometimes she says things like " downsydrome kids are this " or

that... and I think " he is RYAN.. and does things like because that is

who he is, not because downsyndrome kids have this personality or that. I

have met many downsyndrome kids, and they certainly are all different!! I

hate when she labels them into one category.

Hugs n' Stuff,

Shar @>-----

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Bonnie,

To bad some people like to open their months and insert their foot,

the getleman should not have bothered to say anything.

I have not had any stupid comments made directly to me yet about

Tyler having DS, but I do have a funny story of a stupid comment

a gentleman made about my twins in general. I was a the grocery

store a couple of weeks ago during the week, and Tyler

were sitting next to each other is the grocery cart seat. We were

waiting in line to check out and this gentlemen ask how did you

get two that size? I started to answer when he suddenly said " oh

they must be twins " . Should have seen the look his wife gave him

when he ask how did I get two that size?, it was like have you left

your brain at the office and then she started laughing at him. I

think I may have given him the same puzzled look right before he

said are they twins. I think was rather embarrassed that he had

asked such a stupid question.

Hope everyone one gets a good laugh at this .

Katy mom to 31/2 and twins and Tyler(DS) 9 months

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I was in Target shopping for the dreaded school supplies (UGH!!!) yesterday

and As I was leaving an older man was walking in with two toe headed cuties.

One was a bit bigger than the other but they sure looked like twins. The

security guard who was also well into his 70's was talking with this man .

As I approached the man and the twins left and the security guard said

another set. Then he looked again and said " they are twins aren't they? "

You have ti understand that aside from Robby be a few inches taller and

couple of pounds heavier they are like night and day (not including one

having ds and one w/o ds).

I told him they were indeed twins and he said you got one big one and one

little one. HE said that the gentleman who just walked by had his twin

grandkids who were premature but one is so much bigger than the other. He

was right there was a substantial diference in their sizes. He thought is

was quite funny to see to set of twins coming and going with such differences

in sizes. He was very nice and friendly and I think he was just baffled by

seeing two sets of twins concurrently!!!

Bonnie from Long Island

Mom to -10, twins and (ds)-2 1/2

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Now that my twins are 13, no one believes me when I tell them they are twins!

I always have to assure them that I was there!!! lol is fully a

head taller than the Rudeman so they definitely dont look the same age. He

is in the high school this year and has to be classified as a freshman so

needless to say, sister is none too happy that he jumped right past her!!!!

Oh the trials and tribulations of teens!! Love to all.

mom to Rudy (ds) & 13 & TJ 17

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