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Gretchen:

Just getting back up from a knee scope to repair a miniscus tear and

was reading yours and everyones post regarding language such as

afflicted and suffering. I can send you a brochure published by

Arkansas People First which gives the politically correct terms to use

for people with disabilities and what terminology is considered

offensive in the disability community. If you're interested, let me

know where to send it.

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I'm sorry. I got turned off to this campaign way back when one of

the main DS organizations spent $1,000,000 just to try to get

everyone to say " kid with DS " instead of " DS kid " . There were many

many other better ways to help our kids than spending money and

effort on this nonsense in my opinion. I personally see no difference

in " kid with DS " or " DS kid " and feeling somewhat rebellious about

the whole thing I say it either way. I figure being the parent of a

DS kid gives me the right to say it any old way. I just fail to see

the significance. The whole list they gave of better ways to say

stuff --I don't see much difference either way. It's political

correctness gone wild and I just don't see it. Just say it the way

it is and don't obsess over how to tell the truth. And especially

don't spend money on it. JMHO.

Priscilla K

--- spritelyslp <spritelyslp@...> wrote:

> Hi guys!

>

> I just wanted to share this wonderful article I found on Karhie

> Snow's website. It's about

> people first language. our kids are not DS kids. They are kids

> first, regardless of any

> diagnosis. ( & it's not about being politically correct.) If we

> don't use language in this way, why

> would others? Just thoughts to ponder.

>

>

>

>

> http://disabilityisnatural.com/pdf/PFL.pdf

>

>

>

>

Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

__________________________________________________

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you know people say it is about being PC, but I find it to be out of respect for

the

humanity of our kids. I don't define my daughter by her diagnosis. She's my

daughter.

period. I understand why you got turned off to the whole issue, but why

discourage me &

others from helping change the way we throw around terms? I'm not spending

money, just

sharing an article. JMHO.

>

> > Hi guys!

> >

> > I just wanted to share this wonderful article I found on Karhie

> > Snow's website. It's about

> > people first language. our kids are not DS kids. They are kids

> > first, regardless of any

> > diagnosis. ( & it's not about being politically correct.) If we

> > don't use language in this way, why

> > would others? Just thoughts to ponder.

> >

> >

> >

> >

> > http://disabilityisnatural.com/pdf/PFL.pdf

> >

> >

> >

> >

>

>

> Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including

Evan, 10,

born with Down Syndrome and Spina Bifida

>

> " My strength is made perfect in weakness. "

> " My grace is sufficient. " II Corinthians 12:9 KJV

>

> __________________________________________________

>

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>

> > Hi guys!

> >

> > I just wanted to share this wonderful article I found on Karhie

> > Snow's website. It's about

> > people first language. our kids are not DS kids. They are kids

> > first, regardless of any

> > diagnosis. ( & it's not about being politically correct.) If we

> > don't use language in this way, why

> > would others? Just thoughts to ponder.

> >

> >

> >

> >

> > http://disabilityisnatural.com/pdf/PFL.pdf

> >

> >

> >

> >

>

> Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids

including Evan, 10,

born with Down Syndrome and Spina Bifida

>

> " My strength is made perfect in weakness. "

> " My grace is sufficient. " II Corinthians 12:9 KJV

>

> __________________________________________________

>

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I am not a big poster but I do have to give my opinion on this subject. I totally agree that we all should use and expect all people to use People First language.

My daughter is le and she is 5 years old, a girl, in kindergarten, a sister, funny, stubborn as a mule but she is not Down syndrome or diabetes she has Down syndrome and diabetes and they are a small part of who she is! I cringe when someone says she is DS or she is a downie or even the old ... she has Downs comment. Downs was the man who discovered the syndrome so to say she has Downs is crazy, IMO.

I do not correct the person/people who makes these comments, I usually just chalk it up to ignorance and say "Oh yeah, she has Down syndrome" or "She has diabetes" to the she is diabetic comment. This is only my opinion and if you agree great and if not that is fine too.

Anyway, this was written by the past editor of the Down Syndrome Association of Hampton Roads (formerly the Tidewater DS Association), if you want to read.

People First, Colorado Springs Down Syndrome Association

Thank you!

in VA

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I just don't think it makes a hill of beans difference is all I'm

saying. If you think it does, go for it, but I don't. We say " She's

a cancer patient " or " She has cancer, " and the meaning is identical

so I don't see the big deal with DS. But it's fine to post an article

about it --I was just expressing my opinion and it may not be yours.

That's fine. We can agree to disagree - politely. If you think it

matters, post. I might change my mind or you might change yours

sometime, who knows?

I will say that an older lady in our church a couple years ago still

didn't realize Evan was " mongoloid " . (He's 10 and she's known that

he has DS since his birth.) She had heard us say he had down

syndrome but had no idea and was totally shocked to know that meant

the old term she had always heard, " mongoloid " . She didn't know what

down syndrome meant! And of course I don't like terms like " idiot "

but the " mongoloid " really just meant they looked like the people

from Mongolia --it came to be a demeaning term I guess but so does

every term they use. " Retarded " became " mentally challenged " or

" special " or " special ed " or any number of other terms and they all

begin to mean the same thing after awhile and they try to change the

term because of what it has come to mean and the new term soon comes

to mean what the original did and it goes on and on. It's futile.

It is what it is and it really doesn't matter a whole lot what you

call it (excluding terms like " idiot " or " stupid " of course).

And I often use labels with Evan because I want people to be educated

and know and not be like some of the little honest kids who sometimes

ask me, " What's wrong with him? "

Since polls are so popular these days, it would kinda be interesting

to stop your average joe on the street and ask, " Do you think it

makes a difference if you refer to your child as a " child with down

syndrome " or " a down syndrome child " ? I might be wrong but I think

most would look at you like you were crazy. Anyone want to try it?

I just did the poll on my 28 year old daughter and she said, " Do you

want to be known as the " lady with brown hair " or the " brown haired

lady " ? " What's the difference? "

Priscilla K

--- Jill <thrill@...> wrote:

> I agree. I think the terminology WE, as parents and advocates for

> our kids, use does have an impact on others and sets the tone for

> our children. Politically correct or not, I want my children to be

> known as kids who have Down syndrome, not Down syndrome kids.

>

> Jill

> Mom to Mac (8 yrs, 3rd grade, Ds) and Kit (almost 5, preschool, Ds)

>

> Re: People First Language

>

>

>

> Priscilla,

> I agree to some extent with you that this isn't something that we

> should obsess about, but we should at least use the more

> respectable terms ourselves. Remember our children born several

> years ago used to be referred to as " Mongoloid Idiots " but their

> disability was the same as it is now and good people worked hard to

> first get the " idiot " part dropped and then fought for the more

> respected term of Ds. I'm sure you agree that that wasn't just

> another way to tell the truth.

>

> We're the ones to set examples for people that really don't

> understand and don't want to offend so will take our lead.

>

>

>

> Bonnie from Ohio

> Richbmom@...

> SAHM to 23 now living on her own, 10 and Aman da 6

> Ds, CHD, Bronchial Tube defects, gastroesophageal reflux with

> silent aspiration, slight Nystagmus, Alopecia Areata, and AAI,

> excellent gross motor skills. . . bet you can't catch her!!

> http://www.babiesonline.com/babies/a/amr/

>

>

Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

__________________________________________________

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OK, I'll jump in! What bugs me is when someone says "She is Downs". Maybe it is just the bad grammar. Because we wouldn't say "She is brown hair", or "she is cancer".

ette

--------- Re: People First Language> > > > Priscilla,> I agree to some extent with you that this isn't something that we> should obsess about, but we should at least use the more> respectable terms ourselves. Remember our children born several> years ago used to be referred to as "Mongoloid Idiots" but their> disability was the same as it is now and good people worked hard to> first get the "idiot" part dropped and then fought for the more> respected term of Ds. I'm sure you agree that that wasn't just> another way to tell the truth.> > We're the ones to set examples for people that really don't> understand and don't want to offend so will take our lead.> > > > Bonnie from Ohio > Richbmom

> SAHM to 23 now living on her own, 10 and Aman da 6> Ds, CHD, Bronchial Tube defects, gastroesophageal reflux with> silent aspiration, slight Nystagmus, Alopecia Areata, and AAI,> excellent gross motor skills. . . bet you can't catch her!! > http://www.babiesonline.com/babies/a/amr/> > Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV__________________________________________________

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I hate that, too. I do a thing every year and some of you may have heard a similar examples at workshops or conferences, where you describe one person in two ways--one being true, but negative, condescending, focuses on the "can'ts" and the other being the opposite--positive, upbeat, focusing on the "can's". I use Mac and do this with the 7th graders when we do a disability unit and we discuss language and how we have the power, just by the words we use, to bring people up or knock them down. The kids are always amazed that I would talk so negatively about Mac and have a hard time believing that what I say is true--but it sure does make an impact on them and if it makes even one kid out of 50 more aware of the language they hear and/or use I think it's a worthwhile lesson.

Jill

Re: People First Language> > > > Priscilla,> I agree to some extent with you that this isn't something that we> should obsess about, but we should at least use the more> respectable terms ourselves. Remember our children born several> years ago used to be referred to as "Mongoloid Idiots" but their> disability was the same as it is now and good people worked hard to> first get the "idiot" part dropped and then fought for the more> respected term of Ds. I'm sure you agree that that wasn't just> another way to tell the truth.> > We're the ones to set examples for people that really don't> understand and don't want to offend so will take our lead.> > > > Bonnie from Ohio > Richbmom > SAHM to 23 now living on her own, 10 and Aman da 6> Ds, CHD, Bronchial Tube defects, gastroesophageal reflux with> silent aspiration, slight Nystagmus, Alopecia Areata, and AAI,> excellent gross motor skills. . . bet you can't catch her!! > http://www.babiesonline.com/babies/a/amr/> > Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV__________________________________________________

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I guess I am a bit taken aback by all this after reading it all. I just thought, personally that since we are on a Down Syndrome E-mail here yakking with one another that we have to tell which one of our children (adult kids in my case) has Down Syndrome. DS is easy to type for sure. Well, my son Andy tells everyone, I mean everyone "I am Andy. I am a Down Syndrome boy!" Sometimes he tells everyone I have it, his Dad has it and his sisterss, nieces and nephew are also Down Syndrome. So, there you have it from him and he doesn't care unless someone calls him "retarded". Now, those are fighing words for us because it is demeaning. DS is not a demeaning term to us, and I guess we have been at this for almost 35 years so we are in the chill mode and never had it cross our minds that DS would be considered offensive. I promise not to refer to anyone elses child as DS! I only picked that up on this exchange! God Bless! Trish who is the proud

Mom of Andy who has Down Syndrome Priscilla <priskend1@...> wrote: I'm sorry. I got turned off to this campaign way back when one ofthe main DS organizations spent $1,000,000 just to try to geteveryone to say "kid with DS" instead of "DS kid". There were manymany other better ways to help our kids than spending money andeffort on this nonsense in my opinion. I personally see no differencein "kid with DS" or "DS kid" and feeling

somewhat rebellious aboutthe whole thing I say it either way. I figure being the parent of aDS kid gives me the right to say it any old way. I just fail to seethe significance. The whole list they gave of better ways to saystuff --I don't see much difference either way. It's politicalcorrectness gone wild and I just don't see it. Just say it the wayit is and don't obsess over how to tell the truth. And especiallydon't spend money on it. JMHO.Priscilla K--- spritelyslp <spritelyslp > wrote:> Hi guys!> > I just wanted to share this wonderful article I found on Karhie> Snow's website. It's about > people first language. our kids are not DS kids. They are kids> first, regardless of any > diagnosis. ( & it's not about being politically correct.) If we> don't use language in this way, why > would

others? Just thoughts to ponder.> > > > > http://disabilityisnatural.com/pdf/PFL.pdf> > > > Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including Evan, 10, born with Down Syndrome and Spina Bifida"My strength is made perfect in weakness." "My grace is sufficient." II Corinthians 12:9 KJV__________________________________________________

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I don't think any of us are ashamed of our kids with Ds--if we were--I doubt we'd be on this list. I also don't think having Ds is demeaning or offensive. I CHOSE my children through the miracle of adoption and I wouldn't change a thing about either of them (except for maybe my daughter's heart defect)--they are perfect and I am very blessed. However, in the big picture of things, as stated, Down syndrome is something they have, it is does not define what or who they are or what they can or can't do.

I've also had a teacher (and I'm also a teacher) say to me "I had one of those in my class before" as if they were a homogeneous breed of people--as we all know they are not. I asked "one of what?" and the teacher responded "A Downs kid". I didn't make a big deal about it and still don't...I just figure by my own words and actions others will pick up and realize there is so much more to my kids than just having Down syndrome. It's obvious they have Ds and I'm quite proud of that fact, but I don't announce it unless necessary. That was a debate I've had on and off the last few years. For example, when signing my son up for soccer and baseball (typical league) or when responding to a birthday party invite, I've debated whether or not to tell the person that he has Ds (these were phone calls and the people hadn't seen him yet). I've opted not to tell them and it's been fine and, I think, the best way to handle those situations. If I"m making a dr. appt. or something of that nature then I do let the people I know my kids have Ds upfront.

Times are a-changing, hopefully, for the better in most cases and this is one of those areas that has really become a hot topic in the past 15-20 years that I've been in special education. Sadly, in my experience, special educators (I'm one) are often the ones that make the most inappropriate and crass remarks when talking about children to families and other professionals and they are not aware of the People First movement that started with people with disabilities themselves, not parents, professionals or others.

Jill

Proud Mom to Mac & Kit, both adorable, funny, smart, ornery, loveable, etc., etc, who also happen to be Chinese, adopted and have Ds

Re: People First Language

I guess I am a bit taken aback by all this after reading it all. I just thought, personally that since we are on a Down Syndrome E-mail here yakking with one another that we have to tell which one of our children (adult kids in my case) has Down Syndrome. DS is easy to type for sure. Well, my son Andy tells everyone, I mean everyone "I am Andy. I am a Down Syndrome boy!" Sometimes he tells everyone I have it, his Dad has it and his sisterss, nieces and nephew are also Down Syndrome. So, there you have it from him and he doesn't care unless someone calls him "retarded". Now, those are fighing words for us because it is demeaning. DS is not a demeaning term to us, and I guess we have been at this for almost 35 years so we are in the chill mode and never had it cross our minds that DS would be considered offensive. I promise not to refer to anyone elses child as DS! I only picked that up on this exchange! God Bless! Trish who is the proud Mom of Andy who has Down Syndrome Priscilla <priskend1@...> wrote:

..

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I also don't post alot but had to chime in - first the term Downs is incorrect

because the scientist that discovered and named the syndrome was Langdon

Down (not Downs) and calling a person a Downs child implies that their diagnosis

is more important that the child. I am not at all embarrassed of my son but want

him treated appropriately. Should I introduce my kids -- this is , my

Down syndrome son and Hannah, my normal daughter -- I don't think so. Our

society has grown and changed in many ways since the beginning -- we don't use

other inappropriate names -- any of us use the " n " word ??? Well then why is

this any different?

And I do sometimes correct people -- usually what I do is repeat what they say

but in the correct terminology and watch the response. People closer, I will

just out right correct!

Should we think and advocate for People First Language - absolutely! Should it

be the primary focus and spend lots of money -absolutely not!

Okay -- I will climb off my soapbox now (this is a pet peeve of mine) -- JMOH

Fort Wayne

and VERY proud mother of 2 kids - one of which has Down syndrome

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

From: Jill <thrill@...>

Date: 2006/07/20 Thu PM 07:37:02 CDT

Down Syndrome Treatment

Subject: Re: People First Language

  I don't think any of us are ashamed of our kids with Ds--if we were--I doubt

we'd be on this list.  I also don't think having Ds is demeaning or offensive. 

I CHOSE my children through the miracle of adoption and I wouldn't change a

thing about either of them (except for maybe my daughter's heart defect)--they

are perfect and I am very blessed.  However, in the big picture of things, as

stated, Down syndrome is something they have, it is does not define what

or who they are or what they can or can't do.    I've also had a teacher (and

I'm also a teacher) say to me " I had one of <EM>those</EM> in my class before "

as if they were a homogeneous breed of people--as we all know they are not.  I

asked  " one of what? " and the teacher responded " A Downs kid " .  I didn't make a

big deal about it and still don't...I just figure by my own words and actions

others will pick up and realize there is so much more to my kids than just

having Down syndrome.  It's obvious they have Ds and I'm quite proud of that

fact, but I don't announce it unless necessary.  That was a debate I've had on

and off the last few years.  For example, when signing my son up for soccer and

baseball (typical league) or when responding to a birthday party invite,

I've debated whether or not to tell the person that he has Ds (these were phone

calls and the people hadn't seen him yet).  I've opted not to tell them and it's

been fine and, I think, the best way to handle those situations.  If I " m making

a dr. appt. or something of that nature then I do let the people I know my kids

have Ds upfront.     Times are a-changing, hopefully, for the better in most

cases and this is one of those areas that has really become a hot topic in the

past 15-20 years that I've been in special education.  Sadly,  in my experience,

special educators (I'm one) are often the ones that make the most inappropriate

and crass remarks when talking about children to families and other

professionals and they are not aware of the People First movement that started

with people with disabilities themselves, not parents, professionals or

others. JillProud Mom to Mac & Kit, both adorable, funny, smart, ornery,

loveable, etc., etc, who also happen to be Chinese, adopted and have Ds   -----

Original Message ----- From: Trish To:

Down Syndrome Treatment Sent: Thursday, July 20, 2006 5:59

PM Subject: Re: People First Language

I guess I am a bit taken aback by all this after reading it all. I just

thought, personally that since we are on a Down Syndrome E-mail here yakking

with one another that we have to tell which one of our children (adult kids in

my case) has Down Syndrome. DS is easy to type for sure. Well, my son Andy

tells everyone, I mean everyone " I am Andy. I am a Down Syndrome boy! "  

Sometimes he tells everyone I have it, his Dad has it and his sisterss, nieces

and nephew are also Down Syndrome. So, there you have it from him and he

doesn't care unless someone calls him " retarded " . Now, those are fighing words

for us because it is demeaning. DS is not  a demeaning term to us, and I guess

we have been at this for almost 35 years so we are in the chill mode and never

had it cross our minds that DS would be considered offensive. I promise not to

refer to anyone elses child as DS! I only picked that up on this exchange! God

Bless! Trish who is the proud Mom of Andy who has Down Syndrome 

Priscilla <priskend1@...> wrote:   .

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<<any of us use the "n" word ??? Well then why is this any different?>>

We already had this discussion a couple of weeks ago and it didn't "flare" then like I figured it would so it's nice that we could give it a second go-round. Just for the record I totally agree with Priscilla and I could really care less at this stage of the game. The above sentence is precisely why...we can't use the word negro or the nasty "N" word, now we can't use "black" and "AfroAmerican" is currently on it's way out because there are so many people "of color" who are not from Africa and resent this term.

This is really my big gripe...the "correct" language changes so rapidly and regularly that by the time you've got one term right and have spent zillions of dollars as they did here on changing the stationery, business cards, flyers etc. from "persons with delays" to "persons with disabilities"....(actually it may be the other way around) and 100s of government employees spend thousands of hours in conferences and on

committees to get it right....it then changes and we start all over again. I would be willing to bet what little money I have that "child with Down Syndrome" or "child with Autism" or child with Down Syndrome and Autism and Spina Bifida and a heart defect" are all going to go the way of "mongoloid" in our lifetimes. It's not the idea behind the language that bothers me at all...I do think it's important. I would just rather see more of the dollars spent on research and/or services and education.

Sherry mom to , a 17 yo beautiful young lady with DS and Autism and a heart defect and PMS

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Amazing the way there are so many opinions on this one huh ??

I have to say that I always use people first language. The reason is because I have personal experience what a difference this type of language means .

When I found out had Ds I was devastated ( I look back now and wonder why and feel guilty over it ) . Even though with my background I was still devastated .

I * thought* I knew was DS was but in actual fact I had not the slightest clue!! I had bought into the medical and psychological terminology and the common mis conceptions . I did not realise that at the time but it was the truth !! So when they sent in the counselling nurse to speak to me about Sam I thought she would have nothing to say that would give me hope for him and me too. She used people first language , she used correct terms and used positive language and it REALLY worked !!! I * did * feel better and for the first time had hope that would lead a fulfilling life !!! Now I know I *should* have known all this and also *should * have know what she was doing and I did to a degree I think . She was doing what I would do. I did not really analyse it in depth at the time . I could not be that objective !! ( still cant when it comes to Sam) Later on though I could see exactly what she did but it did not matter !!! Mission accomplished !!! I actually felt up to the challenges ahead and that and I could do this !!!! It was not really her message , it was how it was presented !!! Proper packaging made all the difference for me .Others had tried to say the same things to me but has failed . So that's why I use proper terms . I hope like Carol says it gives people food for thought !!! People honestly don't know they don't know !!!!

Like Carol I use the term downsie at home as a term of endearment !! I want Sam to be proud of having Downs !!! We actually had to stop using that term when Lucy my 20 month old grand daughter did flips to get out of her stroller to get to a group of adults with Downs one day recently . The whole time she was screaming "downsie" at the top of her lungs !!! Her mum was pretty red faced !!! lol Everywhere I go in schools in Ireland , people want to discriminate against Sam. They either don't want him or want to keep him in a preschool setting. ( he is 7 in November ) . So I know there is a lot of work in educating people still to be done !!!!

So yep !!! I use people first language !!! Sam is out there too much in the big bad world for me not too !!!!

..

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okay i am new to the group but I finally got my mom to understand why people first is important. She has felt like many, "what difference does it make.....you know what I mean" ( I couldn't care less but so many families do that I always try to be thoughtful and teach anyone that I can as I go) Anyway, we were on vacation and we were always catching shuttle buses. Well, my cousin ran across the parking lot yelling "kidney transplant...kidney transplant lady....hey wait the kidney transplant lady needs a ride...." My mom stopped in her tracks and said," What the bleep! I am a person what is she trying to do? "That was a horrible thing to do, so I move a little slower why would she yell that?" I am person and capable just a little slower?" I looked at my mom and cleared my throat (while holding my daughter w/ds) and lifted my eyebrows. Suddenly the light bulb went on and she got it. She said she felt humiliated, stupid, and not like a person. I wonder if our children sense the same thing. Thank you for listening.

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In a message dated 7/21/06 10:25:52 AM, rdavis900@... writes:

My mom stopped in her tracks and said," What the bleep!  I am a person what is she trying to do?  "That was a horrible thing to do, so I move a little slower why would she yell that?"  I am person and capable just a little slower?"  I looked at my mom and cleared my throat (while holding my daughter w/ds)  and lifted my eyebrows.  Suddenly the light bulb went on and she got it.  She said she felt humiliated, stupid, and not like a person.  I wonder if our children sense the same thing.  Thank you for listening.

WOW what an impressive story. It left an impression on her!

With all this discussion I asked our Olivia (10) last night if she knew she had Down Syndrome and what it was. She knew she had it but not what it was. She more often refers to her heart surgery and how the doctor "poked her" than DS. But last week she mentioned to someone she had down syndrome and the doctor poked her while she pointed to her heart scar.

I checked out the book "Accidents of Nature" with reluctance today. I really do not like the title, it reminds me of the lovely book Schriver wrote about a boy with DS entitled "What's Wrong with Timmy?" It is a lovely book for children to read and in the end the girl friend of Timmy's comes to the conclusion he is more like her than not. But I do not like the title.

Maybe I believe we are all equally valuable and all have different dis-abilities, some are just more visible than others. I want to emphasis the abilities and similarities without being Pollyannish or

unrealistic. It is a balancing act to say the least. I want to encourage (at times push) Olivia to do more and also realize she has built in limitations that I cannot change. Maybe it is like the old saying

accept what you cannot change and work to change what you can. Knowing the difference may be the key to how we empower our kids.

Just my musings for the day.

Joan

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I am glad the title didn't deter you. Look at the author- she herself is has a disability and the book is very unpollyannish... in fact the movie takes a bit of a hit in the book. ;-) I agree that story was very powerful. And I am sure some day WILL pick up on the unsaid 'message' with the terms DS kids....etc. She is pretty smart already. At any rate, I have more respect for her then to talk about her using her DS as the focal point. It's just a piece of who she is, not who she is. Carol in ILJoanElder@... wrote: In a message dated 7/21/06 10:25:52 AM, rdavis900@... writes: My mom stopped in her tracks and said," What the bleep! I am a person what is she trying to do? "That was a horrible thing to do, so I move a little slower why would she yell that?" I am person and capable just a little slower?" I looked at my mom and cleared my throat (while holding my daughter w/ds) and lifted my eyebrows. Suddenly the light bulb went on and she got it. She said she felt humiliated, stupid, and not like a person. I wonder if our children sense the same thing. Thank

you for listening.WOW what an impressive story. It left an impression on her! With all this discussion I asked our Olivia (10) last night if she knew she had Down Syndrome and what it was. She knew she had it but not what it was. She more often refers to her heart surgery and how the doctor "poked her" than DS. But last week she mentioned to someone she had down syndrome and the doctor poked her while she pointed to her heart scar.I checked out the book "Accidents of Nature" with reluctance today. I really do not like the title, it reminds me of the lovely book Schriver wrote about a boy with DS entitled "What's Wrong with Timmy?" It is a lovely book for children to read and in the end the girl friend of Timmy's comes to the conclusion he is more like her than not. But I do not like the title. Maybe I believe we are all equally valuable and all have different

dis-abilities, some are just more visible than others. I want to emphasis the abilities and similarities without being Pollyannish or unrealistic. It is a balancing act to say the least. I want to encourage (at times push) Olivia to do more and also realize she has built in limitations that I cannot change. Maybe it is like the old saying accept what you cannot change and work to change what you can. Knowing the difference may be the key to how we empower our kids.Just my musings for the day.Joan __________________________________________________

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I just wanted to share some things here about my Son. As I read all of these e-mails one thing struck me about my Andy. Andy just doesn't think the same way we do. Sometimes, I wish I could be just like him. Some things do bother him and we find out what it is when we hear him self talking. Now, he does that on his cell phone his Brother-in-law gave him. He loves feeling really important and being just like everyone else. Just like when he says he is going to get married (because his sisters are) and have children and homeschool them because his sisters do. We know announcing he is a Down Syndrome boy to those he meets really surprised us! So, he is happy with who he is and he just enjoys life without all those worries and stresses the rest of us endure. Well, I know he gets worried about storms and such and he has his own way of doing things. We refer to Andy as our kid just like we do our

daughters because to us, they are kids, our kids. Andy is our forever kid and he still doesn't realize he is grown up. That is fine with us because he is happy and that's what we want. We let him try things, within reason due to his neck surgery he is limited now. He is so active and we are just so thankful the Lord gave Andy to us! He is such a cutie and he sure makes life so much happier for the rest of us. His eldest niece told him the other day when she was upset that he makes her so happy! She wasn't feeling down any longer after her Uncle Andy went in to cheer her up. For sure we can't change some things but with our Children who have DS we can help them become all they can be and want to be. We sure have never given up on Andy or ever said he couldn't do it. We always try and he does try hard because he is a person too with dreams and hopes just like anyone else. Just some tidbits from the pages of our life with

our sweetiepie Cowboy Andy That's what he calls himself and boy does he look handsome in all his western wear! He and I will be looking for some more western shirts. He and his Dad sometimes get the same colorful western shirts that you can only get through Western Warehouse in the Southwest where we moved from. He loves to shop! Boy does he have great taste! Anyone who knows Andy knows what a humours person he is. To meet him is better to see the fantastic person he has grown to be. He is so personable and really loves to chat with people. No one is a stranger to him so we have to keep a watchful eye out for our very friendly guy. God Bless! Trish JoanElder@... wrote: In a message dated 7/21/06 10:25:52 AM, rdavis900@... writes: My mom stopped in her tracks and said," What the bleep! I am a person what is she trying to do? "That was a horrible thing to do, so I move a little slower why would she yell that?" I am person and capable just a little slower?" I looked at my mom and cleared my throat (while holding my daughter w/ds)

and lifted my eyebrows. Suddenly the light bulb went on and she got it. She said she felt humiliated, stupid, and not like a person. I wonder if our children sense the same thing. Thank you for listening.WOW what an impressive story. It left an impression on her! With all this discussion I asked our Olivia (10) last night if she knew she had Down Syndrome and what it was. She knew she had it but not what it was. She more often refers to her heart surgery and how the doctor "poked her" than DS. But last week she mentioned to someone she had down syndrome and the doctor poked her while she pointed to her heart scar.I checked out the book "Accidents of Nature" with reluctance today. I really do not like the title, it reminds me of the lovely book Schriver wrote about a boy with DS entitled "What's Wrong with Timmy?" It is a lovely book for children to

read and in the end the girl friend of Timmy's comes to the conclusion he is more like her than not. But I do not like the title. Maybe I believe we are all equally valuable and all have different dis-abilities, some are just more visible than others. I want to emphasis the abilities and similarities without being Pollyannish or unrealistic. It is a balancing act to say the least. I want to encourage (at times push) Olivia to do more and also realize she has built in limitations that I cannot change. Maybe it is like the old saying accept what you cannot change and work to change what you can. Knowing the difference may be the key to how we empower our kids.Just my musings for the day.Joan

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That's what I would call a "teachable moment"!

ette

-------------- Original message from rdavis900@...: --------------

okay i am new to the group but I finally got my mom to understand why people first is important. She has felt like many, "what difference does it make.....you know what I mean" ( I couldn't care less but so many families do that I always try to be thoughtful and teach anyone that I can as I go) Anyway, we were on vacation and we were always catching shuttle buses. Well, my cousin ran across the parking lot yelling "kidney transplant...kidney transplant lady....hey wait the kidney transplant lady needs a ride...." My mom stopped in her tracks and said," What the bleep! I am a person what is she trying to do? "That was a horrible thing to do, so I move a little slower why would she yell that?" I am person and capable just a little slower?" I looked at my mom and cleared my throat (while holding my daughter w/ds) and lifted my eyebrows. Suddenly the light bulb went on and she got it. She said she felt humiliated,

stupid, and not like a person. I wonder if our children sense the same thing. Thank you for listening.

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"I will say that an older lady in our church a couple years ago stilldidn't realize Evan was "mongoloid". (He's 10 and she's known thathe has DS since his birth.) "

Now, the Mongoloid word is definitely one that I react to -- no matter who says it. Once as a witness in court, a lawyer said, "Isn't it true you have a Mongoloid son?" I politely replied, "No. He is American." She sputtered and visibly tried to search for words. I just sat there waiting for the next question. I knew she was leading up to having me testify that the daughter-in-law in the divorce case had watched our son on occasion. Not true. I never left him with her. For some reason, I guess Ms. Lawyer figured if her client "watched" a special needs kid, she must be a good person, or a dependable person, or a wonderful person, etc. Really strange thinking in my opinion. Anyway, it was fun watching her try to regroup and figure out how to get to the question at hand. I certainly wasn't going to help her. She finally said, "Didn't my client watch your child for you on occasion?" Of course, the only child I had that needed to be watched, since the rest of them were grown, was Jeff. I could have really messed with her some more if I wanted by saying "which child?" But I let it go at that point and just said, "No, she did not."

One Sunday in church recently, our son Jeff was up front with the Pastor, and a man sitting behind us whispered to his wife, "That's the little retarded boy." My husband whipped his head around so fast, I almost got blown off the pew. He said "That's my son, and he has Down syndrome. He's not retarded." I was shocked because my DH is such a quiet, laid-back man who hates confrontation of any sort. I was proud of him though. I probably wouldn't have said anything myself, just let it go.

Just as a note, when I was a court reporter, twice I heard a witness say they had a "Down syndrome baby." One was in a deposition, and the dad said for some reason he had a "Down syndrome baby." On a break, I asked him how old his baby was, and he said 16. I told him I had a "child with Down syndrome" also, and we had a nice coversation. The other was in court, and on recess I asked the same question: "How old is your baby?" This time the "baby" was 19! Any of you ever heard people call their Ds child "baby"? Seems a bit odd to me. But then again my ex-husband one time said, "Do I need to remind you that you have 4 babies?" At the time, the kids were in high school and jr. high. Anyway, I don't get too ruffled over minor semantics, whether he's a Downs kid, or a kid with Down syndrome, or Down syndrome kid. I just refuse to accept the "M" word -- and I'm not fond of the "R" word either. Betty in TN

Re: People First Language

..

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"

Now, the Mongoloid word is definitely one that I react to -- no matter who says it. Once as a witness in court, a lawyer said, "Isn't it true you have a Mongoloid son?" I politely replied, "No. He is American."

What a good line, I have to remember that one!!

Kathy

..

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Same here. Another one that really bugs me, though, is “idiot”

Lots of people use that word very casually, it seems.

kathyR

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Betty Schmidt

Sent: Saturday, July 22, 2006

10:13 AM

Down Syndrome Treatment

Subject: Re:

People First Language

Anyway, I don't get too ruffled over minor semantics, whether he's a Downs kid, or a kid with Down syndrome, or Down syndrome

kid. I just refuse to accept the " M " word -- and I'm not fond

of the " R " word either. Betty in TN

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Trish being new to this group I have to say I absolutely love hearing stories about your son! Thank you for sharing who he was and who he has become! Marcy

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Does anyone have xm radio? I have to admit I love listening to the comedians. Yes even the adult version too. I was appalled and disgusted when some comedian impersonating "laura bush" came on about being nice to ret**** and on and on with that word and then she said especially people with DS! I couldn't believe it. This person not only was making jokes so not appropriate for any time in life and she went on and targeted people with DS! I know xm radio is open free speech but come on! I am not sensitive usually but this was just disgusting! Anyway, was wondering if anyone heard it, knows how to contact them so I can comment about this particular comedian? Thank you!

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I guess my main point in mentioning this is that sometimes you lose

people when you change the meaning of words. Other times people

don't know how to refer to you --my sister is a nurse and a lady got

real offended when she referred to or listed her as black --she told

her she was African American and that was when it was first being

used. It made me not sure what to call them either - I didn't want

to offend anyone. I think, as someone wrote me privately, that we

are too sensitive sometimes. I can just imagine some folks when told

to " put the child first, not the disability " --I bet many are

thinking, " Okay, but what in the world difference is it? " But they

go your way so as not to offend but are thinking how touchy you are.

And I still don't see any respect issue with calling my son a " down

syndrome child " vs. " a child with down syndrome " or " a brown-haired

lady " vs. " a lady with brown hair " . As far as I'm concerned it's

just not a problem. Maybe if I'd had to deal with the public schools

or something I'd see it more. Dunno.

Priscilla K

--- Betty Schmidt <cmcbetty@...> wrote:

> " I will say that an older lady in our church a couple years ago

> still

> didn't realize Evan was " mongoloid " . (He's 10 and she's known that

> he has DS since his birth.) "

>

> Now, the Mongoloid word is definitely one that I react to -- no

> matter who says it. Once as a witness in court, a lawyer said,

> " Isn't it true you have a Mongoloid son? " I politely replied, " No.

> He is American. " She sputtered and visibly tried to search for

> words. I just sat there waiting for the next question. I knew she

> was leading up to having me testify that the daughter-in-law in the

> divorce case had watched our son on occasion. Not true. I never

> left him with her. For some reason, I guess Ms. Lawyer figured if

> her client " watched " a special needs kid, she must be a good

> person, or a dependable person, or a wonderful person, etc. Really

> strange thinking in my opinion. Anyway, it was fun watching her

> try to regroup and figure out how to get to the question at hand.

> I certainly wasn't going to help her. She finally said, " Didn't my

> client watch your child for you on occasion? " Of course, the only

> child I had that needed to be watched, since the rest of them were

> grown, was Jeff. I could have really messed with her some more if

> I wanted by saying " which child? " But I let it go at that point

> and just said, " No, she did not. "

>

> One Sunday in church recently, our son Jeff was up front with the

> Pastor, and a man sitting behind us whispered to his wife, " That's

> the little retarded boy. " My husband whipped his head around so

> fast, I almost got blown off the pew. He said " That's my son, and

> he has Down syndrome. He's not retarded. " I was shocked because

> my DH is such a quiet, laid-back man who hates confrontation of any

> sort. I was proud of him though. I probably wouldn't have said

> anything myself, just let it go.

>

> Just as a note, when I was a court reporter, twice I heard a

> witness say they had a " Down syndrome baby. " One was in a

> deposition, and the dad said for some reason he had a " Down

> syndrome baby. " On a break, I asked him how old his baby was, and

> he said 16. I told him I had a " child with Down syndrome " also,

> and we had a nice coversation. The other was in court, and on

> recess I asked the same question: " How old is your baby? " This

> time the " baby " was 19! Any of you ever heard people call their Ds

> child " baby " ? Seems a bit odd to me. But then again my ex-husband

> one time said, " Do I need to remind you that you have 4 babies? "

> At the time, the kids were in high school and jr. high. Anyway, I

> don't get too ruffled over minor semantics, whether he's a Downs

> kid, or a kid with Down syndrome, or Down syndrome kid. I just

> refuse to accept the " M " word -- and I'm not fond of the " R " word

> either. Betty in TN

>

>

> Re: People First Language

>

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ugh!!!!!!!!!!!!!!!!!!!!!! That is frustrating. Even without our kiddos why can't people just be kind? All I know about this lady was she billed herself as "laura bush"

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