Re: Re: Now, Down Syndrome advice

[Guest guest]

was born in 1990. We weren't told not to have children, but that our

chance of having another Down's child would no go up. was 1 in (I think)

2800. They said my second child would be 1 out of 100. They also said the

chances would go up to 2-3 out of 100 when I hit 35. When they did the test

(alphafetal blood test) they put 's chance at something like 1 in 28,000.

I think 1990 was just depending on where you were. I figured it was because

Westerly, RI was in New York City's back yard. When I took home (in

1994), I faced a totally different reaction. My hometown is Cape Girardeau, MO,

about 2 hours south of St. Louis. I never realized how prejudiced my home town

was, racially as well as to disabilities. I actually had a mother steer her

child away from mine in a public playground. Yes, ignorance is still out there.

I guess she didn't want her child to " catch " Down Syndrome.

I think we will always face the ignorance. I know I am sort of glad that

looks Down's. We had a little boy in our church who was just autistic and

people tended to treat him as though he were just spoiled, that he could

communicate if he really wanted to. It wasn't anything they said, just a

feeling you got. The mom left our church, and has since left Hawaii and moved

on.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, PDD-NOS, and celiac disease

And , 20 months and strong-willed

Both homeschooled

See my poems on Themestream:

http://www.themestream.com/gspd_browse/author/view_author_info.gsp?auth_id=97650

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[Guest guest]

In a message dated 2/21/01 12:12:17 PM Eastern Standard Time,

hsmyangels@... writes:

> I think 1990 was just depending on where you were. I figured it was

because

> Westerly, RI was in New York City's back yard. When I took home (in

> 1994), I faced a totally different reaction. My hometown is Cape

Girardeau,

> MO, about 2 hours south of St. Louis. I never realized how prejudiced my

> home town was, racially as well as to disabilities. I actually had a

mother

> steer her child away from mine in a public playground. Yes, ignorance is

> still out there. I guess she didn't want her child to " catch " Down

Syndrome.

>

Loriann- I went back to my hometown in the early 80's and had some legal

matters to clear up after a death there of a relative. I found lawyers

responded to my questions by speaking to the male friend who accompanied me

and refused to take direction from a female!! I wonder

what it would be like to bring my son to an area that is stuck in a

time-warp! But I do want to add...When Jordan was small I used to leave the

city for the summers. We would go to a very small province where people are

not exposed to all that one is here in Canada's largest city. The first time

someone used the term " mongoloid " the hairs on my neck bristled. But I

learned a wonderful lesson from those people. They were all warm, loving and

accepting. Total strangers treated my child like he was their own. The

people in my city may use the politically correct jargon but they are just

words often devoid of value. Subsequent summers I'd barely be off the boat

and people would greet me, " Hello there! I see you've come home for the

summer. Come here Jordan. Let's be havin' you.... " I realized that

I was now known as " Jordan's mother! " And that an island known for calling

its own residents people " from away " till they lived there a

generation...was calling this our " home! " I'm sorry if I offend people when

I use the term mental-retardation but I do it purposely because it more

clearly explains my child's condition than any of the politically-correct

euphemisms people use....And because of that experience in Jordan's early

years where I was reminded that actions speak louder than words.

[Guest guest]

Hi Dodi,

I can relate to your " small town " experience. We have lived in a small,

rural town now for almost 4 years. To say that there are aspects of the

population that are " backwards " is an understatement! LOL However, the one

thing I have noticed is that is truly " included " in anything we

choose to include him in. The people, particularly the children, are very

accepting! I wouldn't say they are knowledgeable about disabilities and

heaven knows they aren't politically correct, but they are accepting and that

makes a world of difference! My daughter is offended when she hears

" retarded " but I think that's only because she associates it with the kids

teasing in school. We have tried to tell her over the years that it's just a

word and is legitimate in the right context. I think she has just made it

her personal " cause. " There are worse things! LOL

Terry

[Guest guest]

In a message dated 2/22/01 10:08:54 AM Eastern Standard Time,

Imaddenmom@... writes:

> I can relate to your " small town " experience. We have lived in a small,

> rural town now for almost 4 years. To say that there are aspects of the

> population that are " backwards " is an understatement! LOL However, the

one

>

> thing I have noticed is that is truly " included " in anything we

> choose to include him in. The people, particularly the children, are very

> accepting! I wouldn't say they are knowledgeable about disabilities and

> heaven knows they aren't politically correct, but they are accepting and

> that

> makes a world of difference!

Right on, Terry!

Same place I was talking about, I asked what programs were set up for the

special needs kids...and people looked at me with that

'she-must-be-a-poor-dumb-mainlander' look on their faces and said...they just

go to school with the rest of the kids...This was in the years when Toronto

parents were gung-ho on fighting for integration...so when I told a special

needs mom there that, she laughed and said, " Sounds like we're so far behind

that we're ahead! " And BTW...the best teacher Jordan has ever had was not

" knowledgeable about disabilities! " LOL She was an older woman and the board

gave her kids they told her wouldn't learn...and all the boys who

had that teacher left that school for high school reading...She didn't know

any better! She was there to teach! LOL (She's retired years now and I still

wish he was with her in the elementary school!) Dodi

[Guest guest]

Isn't funny how we come full circle? I remember when was about 6 or

7 and I was SO committed to " full inclusion " in a regular classroom. I

threatened a Section 504 (discrimination) complaint against a regular ed

principal who wouldn't let participate in his " inclusion time " in a

Kindergarten class on the first day of school....I worked for years towards

including him full time in a regular ed classroom. Now, here we are facing

high school and I am perfectly happy for him to be in the self-contained

special day class because I know that's the best place for HIM. Wow, so much

energy! LOL Wish I had it now! LOL I'm beginning to realize that

" acceptance " works both ways!

Terry

[Guest guest]

In a message dated 2/22/01 4:38:15 AM Eastern Standard Time,

Evesmother@... writes:

<< I'm sorry if I offend people when

I use the term mental-retardation but I do it purposely because it more

clearly explains my child's condition than any of the politically-correct

euphemisms people use. >>

I am quite comfortable with the term MR as well. I agree that it clearly

explains Maddie also. We've gotten into the MR discussion many times on the

DS listserv and it seems that most are offended by it's use. They prefer to

use DD (developmentally delayed). But my argument there is that delayed

implies catching up, or just being late. The truth is Maddie will never

catch up to what society deems *normal*. Now I can say that here, but after

saying it once on the DS listserv, I won't again.

Donna

[Guest guest]

In a message dated 2/22/01 12:47:03 PM Eastern Standard Time,

hsmyangels@... writes:

> I'm glad you've found that town. I think in that case (where they are warm

> and accepting of Jordon) that you could

Oooops! No. That was summers years ago. I haven't been there for a good 10

years. I live downtown in a large city...where if I dropped dead on the

street..they'd think I was homeless, and step over me! Dodi

[Guest guest]

Wow, I'm really surprised that there are that many people who are offended by

the MR term. I knew the DD term has been politically correct for several

years but I didn't realize that people were that offended.

Terry

[Guest guest]

In a message dated 2/22/01 1:38:24 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Wow, I'm really surprised that there are that many people who are offended

by

the MR term. I knew the DD term has been politically correct for several

years but I didn't realize that people were that offended.

Terry >>

Yea Terry. I remember this one mom whose son was in Maddie's EI class with

us. We did a Mom/Tot thing for a while and so we moms did tons of bonding.

Anyway, her son has Dandy Syndrome, hydrocephalus, epilepsy,

blind.........the list goes on and on. is not walking, talking,

communicating and he's the same age as Maddie, cept he's BIG and she has to

carry him. Hard life. But once someone said something about being

MR and she about had a bird!!! " is NOT MR, she hollered---the docs

say he is DD " . I was like... " Whoa!!! " She and I also had a conversation

once where she actually said to me that she felt sorry for me because Maddie

would live a long time and so I'd have the *burden* of caring for her

forever. WHAT!!!! I didn't have the heart to say anything to her because

her son's life expectancy is under 20---at the time I just thought--whatever

makes you feel better lady. It just felt very weird for me to have HER

feeling pity for ME. All along, I thought it was the other way around.

Donna

[Guest guest]

Wow, Donna, that would be a real shocker! What do you say to somebody like

that? Probably just as well I have become a homebody! LOL! I guess

everybody has their own way of coping!

Terry

[Guest guest]

Hi Dodi,

we usually don't have a prob. with acceptance but just a few months ago we went

to afamily member's house for her son's confirmation....one of the guest's

children asked his mother after looking at me and then at nick...why is he like

that? the mother who looked like she had just smelled something awful answered

him back by saying " i don't know but there is something wrong with that kid "

nice, huh? and you wonder why some kids grow up the way they do. We never mind

when kids or adults for that matter ask us questions because then we can explain

positively...but I really was offended by thi woman...I was less than 3 feet

away from her and she knew that nick was my son. I was speechless...which

believe me is not my usual state (you probably can tell by my long posts!)

Re: Re: Now, Down Syndrome advice

Hi Dodi,

I can relate to your " small town " experience. We have lived in a small,

rural town now for almost 4 years. To say that there are aspects of the

population that are " backwards " is an understatement! LOL However, the one

thing I have noticed is that is truly " included " in anything we

choose to include him in. The people, particularly the children, are very

accepting! I wouldn't say they are knowledgeable about disabilities and

heaven knows they aren't politically correct, but they are accepting and that

makes a world of difference! My daughter is offended when she hears

" retarded " but I think that's only because she associates it with the kids

teasing in school. We have tried to tell her over the years that it's just a

word and is legitimate in the right context. I think she has just made it

her personal " cause. " There are worse things! LOL

Terry

[Guest guest]

In a message dated 2/22/01 1:24:29 PM Eastern Standard Time, duffey48@...

writes:

<< I am quite comfortable with the term MR as well. I agree that it clearly

explains Maddie also. We've gotten into the MR discussion many times on

the

DS listserv and it seems that most are offended by it's use. They prefer

to

use DD (developmentally delayed). But my argument there is that delayed

implies catching up, or just being late. The truth is Maddie will never

catch up to what society deems *normal*. Now I can say that here, but

after

saying it once on the DS listserv, I won't again.

Donna

>>

I don't think all these politically correct things and inclusion mean that

people are accepting anymore than they were 20 years ago. I had a bunch of

kids here rehearsing for a play and one told a joke about a *retard*. None

of the kids realized that Seth was retarded. I stopped dead in my tracks

when I heard that word and got all the kids together and told them " Seth is

a retard and will hear that word a lot in his life, but he would never hear

it in his own house. " You should have seen the kids faces! LOL Guess they

couldn't believe I would call him that, but it sure got the point across very

well. LOL At gymnastics the other night one of the parents was mad at one

of the coaches over something and I heard her say she was going to bring in a

class of retards for a birthday party to make him suffer. She didn't see me

sitting on the back bench and someone nudged her. You should have seen the

look on her face! She is so kind to Seth, but I guess that's now how she

really feels. She asked all kinds of questions about his gymnastics birthday

party, but it must have been to get information for jokes. Maybe just

tolerance is enough for now. Maybe acceptance will follow in another 20

years.

Gail

[Guest guest]

I'm glad you've found that town. I think in that case (where they are warm and

accepting of Jordon) that you could gently explain that mongoloid is like using

the " N " word for " African-American " . But I'm with you, it bothers me that we

have to be so politically correct. I don't want to offend anyone on this list,

but I am just not sensitive to saying Down's child instead of child with Down's.

I know my son is more important than the diagnosis, but it's like saying I'm

's mom as opposed to calling me by MY name. It just doesn't matter to me.

's therapist (whom he just adores) is African-American. I had always

thought that sounded a little uppity. I mean I don't call myself

Irish-English-ish-Native-American. We all (at least those from America)

are Americans. But she said that calling that race Black is a misnomer, too,

since they aren't black, but dark brown. I guess it's just a matter of

respecting people who are sensitive to it. I guess that falls under the " don't

say or do anything that would cause a brother to stumble. "

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, PDD-NOS, and celiac disease

And , 20 months and strong-willed

Both homeschooled

See my poems on Themestream:

http://www.themestream.com/gspd_browse/author/view_author_info.gsp?auth_id=97650

Any earnings will go to charity

-------------------------------------------------------------

Sign up for ICQmail at http://www.icq.com/icqmail/signup.html

[Guest guest]

I'm glad you've found that town. I think in that case (where they are warm and

accepting of Jordon) that you could gently explain that mongoloid is like using

the " N " word for " African-American " . But I'm with you, it bothers me that we

have to be so politically correct. I don't want to offend anyone on this list,

but I am just not sensitive to saying Down's child instead of child with Down's.

I know my son is more important than the diagnosis, but it's like saying I'm

's mom as opposed to calling me by MY name. It just doesn't matter to me.

's therapist (whom he just adores) is African-American. I had always

thought that sounded a little uppity. I mean I don't call myself

Irish-English-ish-Native-American. We all (at least those from America)

are Americans. But she said that calling that race Black is a misnomer, too,

since they aren't black, but dark brown. I guess it's just a matter of

respecting people who are sensitive to it. I guess that falls under the " don't

say or do anything that would cause a brother to stumble. "

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, PDD-NOS, and celiac disease

And , 20 months and strong-willed

Both homeschooled

See my poems on Themestream:

http://www.themestream.com/gspd_browse/author/view_author_info.gsp?auth_id=97650

Any earnings will go to charity

-------------------------------------------------------------

Sign up for ICQmail at http://www.icq.com/icqmail/signup.html

[Guest guest]

That sounds like my approach with . I didn't know how to teach Down's kids

when I started homeschooling . I just kept experimenting until I saw

something click with him. And when you see that light come on, and something is

understood it's better than any narcotic on the market. I was hooked and I keep

switching methods until I find one that works.

Loriann

Wife to Dewight

Mom to , 10 years, Down Syndrome, PDD-NOS, and celiac disease

And , 20 months and strong-willed

Both homeschooled

See my poems on Themestream:

http://www.themestream.com/gspd_browse/author/view_author_info.gsp?auth_id=97650

Any earnings will go to charity

-------------------------------------------------------------

Sign up for ICQmail at http://www.icq.com/icqmail/signup.html

[Guest guest]

Hey Gail,

Makes me wish Sara had been there! LOL People can be such morons!

Terry

[Guest guest]

In a message dated 2/22/01 1:38:15 PM Eastern Standard Time,

Imaddenmom@... writes:

> Wow, I'm really surprised that there are that many people who are offended

by

>

> the MR term. I knew the DD term has been politically correct for several

> years but I didn't realize that people were that offended.

>

In Canada I can't remember all the terms that are used. I remember back early

80's the argument at one group was to change mentally-retarded to " mighty

remarkable! " LOL Then there are the developmentally-challenged,

the developmentally-delayed, the differently-abled, and so on ad nauseum.

There was a service group that had worked for years with the kids and the men

all wore jackets with the name of the branch and I-forget-what for the

mentally retarded. I found when I went to their picnic that only the older

parents and kids they had served for years were there..the parents of the

young ones boycotted them...I don't think it exists anymore..And people cry

for programs. Anyway..with such a plethora of terms being thrown around no

wonder teachers don't know where the kids are at!

[Guest guest]

In a message dated 2/22/01 6:30:26 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Hey Gail,

Makes me wish Sara had been there! LOL People can be such morons!

Terry

>>

Terry,

I am torn over just ignoring her. I feel like I didn't stick up for Seth by

saying her ignorance was showing or some smart remark, but I know she was

quite aware that everyone observed her ignorance. I guess I can forgive and

forget. I just never heard a remark like that since I've had Seth. I know

that's the general feeling, but to actually hear it out loud from someone who

pretended she liked Seth was a slap in the face. Oh well, such is life and

there are more important things to get upset over. LOL

Gail

[Guest guest]

What's a MR team? Is it like a IEP, or a ARD? If so

then I basically know what it is.

=====

Friends Till The End

__________________________________________________

[Guest guest]

Gail,

No doubt stupid things people say like that still hurt...alot! Seriously, I

think you acted really appropriately....like you said, she knew she screwed

up! Why should you take yourself to her level? She probably is more

embarrassed because you didn't say anything than if you had!!

Terry

[Guest guest]

If y'll know some stuff about MR- which I think is

metally retarted now, please say some stuff about it.

We're gonna learn about it in class this following

week.

--- duffey48@... wrote:

> In a message dated 2/22/01 4:38:15 AM Eastern

> Standard Time,

> Evesmother@... writes:

>

> << I'm sorry if I offend people when

> I use the term mental-retardation but I do it

> purposely because it more

> clearly explains my child's condition than any of

> the politically-correct

> euphemisms people use. >>

>

> I am quite comfortable with the term MR as well. I

> agree that it clearly

> explains Maddie also. We've gotten into the MR

> discussion many times on the

> DS listserv and it seems that most are offended by

> it's use. They prefer to

> use DD (developmentally delayed). But my argument

> there is that delayed

> implies catching up, or just being late. The truth

> is Maddie will never

> catch up to what society deems *normal*. Now I can

> say that here, but after

> saying it once on the DS listserv, I won't again.

> Donna

>

>

[Guest guest]

Yes it is amazing how we come full circle. I remember

when I wasn't even 3 my first special school, then I

went on to public school. I remember some teachers

that were my favorite, and then some other teachers,

family, and friends that have passed away thoughout my

life. . Anyways I was in mostly resorse classes and a

couple regualar classes.

--- Imaddenmom@... wrote:

> Isn't funny how we come full circle? I remember

> when was about 6 or

> 7 and I was SO committed to " full inclusion " in a

> regular classroom. I

> threatened a Section 504 (discrimination) complaint

> against a regular ed

> principal who wouldn't let participate in

> his " inclusion time " in a

> Kindergarten class on the first day of school....I

> worked for years towards

> including him full time in a regular ed classroom.

> Now, here we are facing

> high school and I am perfectly happy for him to be

> in the self-contained

> special day class because I know that's the best

> place for HIM. Wow, so much

> energy! LOL Wish I had it now! LOL I'm beginning

> to realize that

> " acceptance " works both ways!

> Terry

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

MR stand for mentally retarded, and IEP --idividual education program , ARC

Association for retarded citizens, many prefer to use the abbreviation than

actually saying the word ret... .--i find myself often finding ways to say

it other than it is or else if i do say it its usually in lower tone of

voice, like its a swear word, but one has to remember during our era of

growing up it was a pretty bad thing, and we havnt overcome that feeling all

of us as of yet. And it also depends on how its said, you know the tone etc,

shawna.

Re: Re: Now, Down Syndrome advice

> What's a MR team? Is it like a IEP, or a ARD? If so

> then I basically know what it is.

>

>

>

>

> =====

> Friends Till The End

>

> __________________________________________________

>

[Guest guest]

I ve cared for children and teen that are MR and found them to not be much

different than a child with ds or LD depepnding on how severe. With the

exception that they look like everyone else no distinguishing

characteristics, and usually have no idea the cause of it. A few do with

high temps from vaccines or illnesses.

Re: Re: Now, Down Syndrome advice

> If y'll know some stuff about MR- which I think is

> metally retarted now, please say some stuff about it.

> We're gonna learn about it in class this following

> week.

>

>

>

>

> --- duffey48@... wrote:

> > In a message dated 2/22/01 4:38:15 AM Eastern

> > Standard Time,

> > Evesmother@... writes:

> >

> > << I'm sorry if I offend people when

> > I use the term mental-retardation but I do it

> > purposely because it more

> > clearly explains my child's condition than any of

> > the politically-correct

> > euphemisms people use. >>

> >

> > I am quite comfortable with the term MR as well. I

> > agree that it clearly

> > explains Maddie also. We've gotten into the MR

> > discussion many times on the

> > DS listserv and it seems that most are offended by

> > it's use. They prefer to

> > use DD (developmentally delayed). But my argument

> > there is that delayed

> > implies catching up, or just being late. The truth

> > is Maddie will never

> > catch up to what society deems *normal*. Now I can

> > say that here, but after

> > saying it once on the DS listserv, I won't again.

> > Donna

> >

> >

[Guest guest]

In a message dated 2/23/01 6:44:58 PM Eastern Standard Time, ct616@...

writes:

<< mother who looked like she had just smelled something awful answered him

back by saying " i don't know but there is something wrong with that kid "

nice, huh? and you wonder why some kids grow up the way they do. >>

Cheri,

Plain, simple ignorance! Doesn't make it hurt any less, but makes forgiving

easier I guess. I hope I was never that way in my pre-Seth days. I'm sorry

you had to be hurt because of their ignorance.

Gail