Re: Stereotyped

September 4, 1999

Hi group,

We never know what we are going to face with any of our children. The fact

that they were born with a diagnois...makes it even more challenging. I

would not change a single thing about my little girl...she is already

" perfect " ...she is the " perfect " daughter that I dreamed of having!! She

is " normal " in my eyes. Sure she has a few developmental problems, mostly

dealing with stereotyping and other peoples fears. She is happy and healthy

and has a wonderful personality!! She is bubbly and I wish I could bottle

her giggle..its the greatest!! She has a smile that lights up any room and a

heart of pure gold!! Maybe math is a struggle and maybe there are a few

people out there who don't understand, but that is just something she will

have to face. My goal for Jolena isn't how well she does

academically...though I will always help her through that, it isn't weather

she can hold down a job or get married...though I hope she can, it isn't what

she cannot do..its what she can do!! Right now she is doing well in

school..just got another A+ on her spelling test yesterday..which is very

common..she is an excellent speller, reads very well, loves science and

social studies and learns things pretty quickly..with some help!! I also

want her to look in the mirror and love who she is...and right now she does

that!! She loves wearing pretty dresses and putting on makeup and can spend

much time in front of the mirror, as many girls her age do. I want her to

always feel good about herself...no matter what she hears from others!! Lets

face it...so called " normal " kids are teased for something at some point in

their lifes, but its the strong kids that can overcome this...and my goal is

for her to be one of the strong!! She loves music and dancing and goofing

off. She is a whiz at the computer and can beat you at many video

games--including Tetris..which shows her quick thinking capabilities!!! She

is a real fish in the water!! She will challenge you at almost any game

including chess and checkers!! Yes, she has a few problems here and

there.....but I think shes pretty darn terrific and I wouldn't change a

single thing about her--shes pretty wonderful just the way she is!!!

Not telling people because of your fears of rejection....or because of the

stereotyping...yes we face that from time to time...but I think after the

initial introduction then they are in awe of her...and she has taught many

people, patience and understanding...and the world certainly needs more of

that!! She has warmed peoples hearts with her smile and they watch in great

admiration of all she accomplishment. She has turned bullies to mush and

have taught them that being different isn't all that bad!! Jolena has many

friends and has been greatly accepted in our community!! She has become

everyones daughter...they are awed and inspired by her!! I used to wonder

if we made the right decision by telling people...I use to worry how she will

be judged...and yes it does happen once in a while..and thats too bad...but

all and all it has been a very rewarding experience for so many people and I

am glad I have shared her with the world...the world is a better place with

her in it!!!

Having a child in special ed..does have a stigma to it...but Jolena loves

going to her special ed class..she loves her teacher and the little boy that

goes there with her. She has never once been teased about going, in fact

others wish they could go...she has a wonderful caring loving mother type

special ed teacher that just adores her, and she feels lucky to get to leave

the class for an hour...sometimes I don't like it because then she misses

things in her regular ed...but she says mom I love it...sooo if she is happy

and it is helping her...so be it!! Soo many kids are pulled out for this

that and the other thing today..it is a pretty common thing, so not much

thought is even given to it these days!!

My oldest son is a 4.0 student without hardly any studing..things just come

easy for him, my middle son is more around A's, B's and C's..he struggles

much more and has to study to get good grades..let me add thats something he

really doesn't like to do. And then Jolena....she knows she has to study

everynight to get good grades...she got all A's and B's last year...with

assistance in Math. She would rather go to school to have fun..but is veryyy

proud of herself when she gets good grades, makes her feel veryyy proud of

herself and glad she studied..even though she gives mom a hard time about

it!! We try to keep study time short...kids need to be kids first...so we

try to keep things fun and interesting for her!! She is doing very well!!

Not that it is always easy..the beginning of the school years brings new

teachers and new adjustments..but we see it through and it always ends with a

very rewarding year..for both the students, teachers and Jolena!!

Deb (mom to Jolena 11 mds, Noah 14, Josh 17 (Jolena's brothers have known

from the day she was born...to them she is just Jolena..they have never

treated her any different than just their little sister...she is picked on

and bullied as much as any little girl would be..but they love her to

pieces---most of the time..hey shes their little sister...and she loves

them....most of the time..when they aren't being a pain!! They are very

protective of her...and she has lots of older friends and guardian angels

because of them too...that can never hurt a situation!! )

September 5, 1999

In a message dated 9/4/99 8:24:44 PM Eastern Daylight Time, CATTZ2755@...

writes:

<< Not telling people because of your fears of rejection....or because of the

stereotyping...yes we face that from time to time...but I think after the

initial introduction then they are in awe of her...and she has taught many

people, patience and understanding...and the world certainly needs more of

that!! >>

Hi Deb:

I found your post to be very thought provoking, and it really hit home with

me. I have struggled from very early on with whether or not to tell people

about 's diagnosis. From the beginning I was very open with people

about her diagnosis. Since we found out by amnio my whole family and close

friends knew about the mds before she born. My son was 3 and a half when

was born and he was told in a way that he could understand. I felt

he needed to know especially because we had a teacher and therapists coming

to our home. He knows that all children learn at different rates and his

sister may need extra help to learn. As a result of that he really doesn't

see kids with down syndrome as being all that different from anyone else.

There were times when I felt very proud to tell people that had

mds because I was proud of all that she accomplished and I wanted people to

realize that down syndrome wasn't a bad thing. But, I have also been in

circumstances where I have not disclosed her diagnosis, mainly to her dance

teacher, Sunday school teacher, gymnastics teacher and to the parents of the

2 friends she made in school last year. I also waited several months before

I told her kindergarten teacher because I wanted her to get to know

without the diagnosis. I applaud your honesty. I sometimes feel bad that I

have not chosen to tell some people, but I don't want her to be

underestimated.

I do agree with you that all children are made fun of from time to time, for

one reason or another, and it would be a great asset if we can teach them

ways to handle this and still be proud of who they are. That may be the most

important thing we can do for our kids.

ann (Mom to , MDS almost 6 yrs old and 9 yrs old)

September 5, 1999

----------

> The question was " If givin the choice, would he have wanted to know he

has

> MDS ? , " Well I have an answer to that would you like to hear it . . . .

September 5, 1999

Deb,

What an inspiring post. It is one of the very few that I actually printed

off to read later. I want my husband to read it too. He is very insistent

that we keep 's diagnosis from the school system. Thanks for sharing

all your years experience with us. I know I (and I'm sure everyone lurking

here) can learn an enormous amount from you.

Marie (Mom to 6 mds and her 9 yr. old sister)

>From: CATTZ2755@...

>

>Not telling people because of your fears of rejection....or because of the

>stereotyping...yes we face that from time to time...but I think after the

>initial introduction then they are in awe of her...and she has taught many

>people, patience and understanding...and the world certainly needs more of

>that!! She has warmed peoples hearts with her smile and they watch in

great

>admiration of all she accomplishment. She has turned bullies to mush and

>have taught them that being different isn't all that bad!! Jolena has

many

>friends and has been greatly accepted in our community!! She has become

>everyones daughter...they are awed and inspired by her!! I used to wonder

>if we made the right decision by telling people...I use to worry how she

will

>be judged...and yes it does happen once in a while..and thats too bad...but

>all and all it has been a very rewarding experience for so many people and

I

>am glad I have shared her with the world...the world is a better place with

>her in it!!!

>

>Having a child in special ed..does have a stigma to it...but Jolena loves

>going to her special ed class..she loves her teacher and the little boy

that

>goes there with her. She has never once been teased about going, in fact

>others wish they could go...she has a wonderful caring loving mother type

>special ed teacher that just adores her, and she feels lucky to get to

leave

>the class for an hour...sometimes I don't like it because then she misses

>things in her regular ed...but she says mom I love it...sooo if she is

happy

>and it is helping her...so be it!! Soo many kids are pulled out for this

>that and the other thing today..it is a pretty common thing, so not much

>thought is even given to it these days!!

>

September 5, 1999

Hello,

This is , mother of , I have told everyone about her problems,

because I want them to be aware of the situation, if any trouble or problems

arise. Which somethings have happened. I off hand can not think of them

but I know there were some. Funny thing is that the teachers in her classes

in high school never knew what her trouble was just that she was LD and that

was all without any reason they accepted that. Which I thought was funny

when I told them they said, we never looked. Hmmm, now does that say good

about the teacher or bad.

September 5, 1999

<<-----Original Message-----From: CATTZ2755@...

My goal for Jolena isn't how well she does academically...though I will

always help her through that, it isn't weather she can hold down a job or

get married...though I hope she can, it isn't what she cannot do..its what

she can do!! >>

Thank you so much Deb, for your awesome share! Your goal for Jolena is my

goal for too! I want her to be able to look at herself in the mirror

and honestly say, " I love you . "

I hope I haven't caused any negative feelings with some of the stuff I have

shared about how I feel about certain things! Please keep in mind that

is ONLY 7 weeks old and I have alot to learn, and alot of time to

make some proper life-long decisions for her! Ultimately, I WILL do what is

best for , NOT me.......whether they begin today or in a year from

now!

Bree

Mommy to (MDS), born July 17th, 1999, 2 sons (ages 11 & 9) and a

step-daughter (9).

September 5, 1999

Bree,

As parents of any children our thoughts of what will be, what we want to be

and what can be are sometimes great. But change is always going to happen.

What is good for some of us are not good for all of us. Just because we

are parents of sweet loving and caring children with a special title isnt

going to change. We always do the best for any child with or without the

MDS stamp. All of us want what is best for OUR children. I am a believer

this way, I no the worst, but if I get the better or even the best I am a

happier person. I dont wish the worst on anyone. Just some of my

thoughts.... Oops hope that sounds okay.

, Mother of 20 year old mds and Misty 22 year old

September 5, 1999

Deb,

Sounds like Jolena and would get along great. Two very motivated and

loving childern. I do hope that you did not take offence to the comments

that I made in my post yesterday about greaving. I have worked with

childern and families for the past 10+ years, and in my experience most

(but not all) have to go through the process. First comes the " No, it

can't be possible " = denial.... Then the " Why me, or why my child. " =

blame.... followed by possibly anger, at god, at yourself (did you do

something wrong) ect. Finally you reach the point of acceptance. When you

realize that your child is " perfect " just the way the are, and to hell with

what anyone else has to say about it. I have gone through this on more

than one occassion..... the loss of four pregancies, then the premature

births of my 2 surviving ones. Even knowing that they would be early did

not prepare me. I thought I was, but when the time finally came, I lost

it. I knew that the ideal delivery.... the baby being placed on the moms

chest, cuddling and bonding.... was not going to happen. Instead a

emergancy C-section, them being rushed off to NICU on vents and months in

the hospital. I had to come to accept the fact that I would never know the

experience of delivery that most moms know. That was a loss to me. But,

in return I have a complete 6+ hour video of their in-utero development

due to all the ultrasounds.... How may moms can say that! lol

It sounds like you have already reach the point of acceptance. But not

everyone is there yet. It is a road that must be traveled alone and at

your own pace. It has many hills and valleys, curves and straight

aways....where you think that the future is clear.... just to find a

suprise around the next bend.

, mom of and ... 2 of the most perfect childern in

the eys of mom. ( and dad and grandparents...lol)

----------

> From: CATTZ2755@...

> To: MosaicDSonelist

> Subject: Re: Stereotyped

> Date: Saturday, September 04, 1999 7:24 PM

>

> From: CATTZ2755@...

>

> Hi group,

>

> We never know what we are going to face with any of our children. The

fact

> that they were born with a diagnois...makes it even more challenging. I

> would not change a single thing about my little girl...she is already

> " perfect " ...she is the " perfect " daughter that I dreamed of having!!

She

> is " normal " in my eyes. Sure she has a few developmental problems,

mostly

> dealing with stereotyping and other peoples fears. She is happy and

healthy

> and has a wonderful personality!! She is bubbly and I wish I could

bottle

> her giggle..its the greatest!! She has a smile that lights up any room

and a

> heart of pure gold!! Maybe math is a struggle and maybe there are a few

> people out there who don't understand, but that is just something she

will

> have to face. My goal for Jolena isn't how well she does

> academically...though I will always help her through that, it isn't

weather

> she can hold down a job or get married...though I hope she can, it isn't

what

> she cannot do..its what she can do!! Right now she is doing well in

> school..just got another A+ on her spelling test yesterday..which is very

> common..she is an excellent speller, reads very well, loves science and

> social studies and learns things pretty quickly..with some help!! I

also

> want her to look in the mirror and love who she is...and right now she

does

> that!! She loves wearing pretty dresses and putting on makeup and can

spend

> much time in front of the mirror, as many girls her age do. I want her

to

> always feel good about herself...no matter what she hears from others!!

Lets

> face it...so called " normal " kids are teased for something at some point

in

> their lifes, but its the strong kids that can overcome this...and my goal

is

> for her to be one of the strong!! She loves music and dancing and

goofing

> off. She is a whiz at the computer and can beat you at many video

> games--including Tetris..which shows her quick thinking capabilities!!!

She

> is a real fish in the water!! She will challenge you at almost any game

> including chess and checkers!! Yes, she has a few problems here and

> there.....but I think shes pretty darn terrific and I wouldn't change a

> single thing about her--shes pretty wonderful just the way she is!!!

>

> Not telling people because of your fears of rejection....or because of

the

> stereotyping...yes we face that from time to time...but I think after the

> initial introduction then they are in awe of her...and she has taught

many

> people, patience and understanding...and the world certainly needs more

of

> that!! She has warmed peoples hearts with her smile and they watch in

great

> admiration of all she accomplishment. She has turned bullies to mush

and

> have taught them that being different isn't all that bad!! Jolena has

many

> friends and has been greatly accepted in our community!! She has become

> everyones daughter...they are awed and inspired by her!! I used to

wonder

> if we made the right decision by telling people...I use to worry how she

will

> be judged...and yes it does happen once in a while..and thats too

bad...but

> all and all it has been a very rewarding experience for so many people

and I

> am glad I have shared her with the world...the world is a better place

with

> her in it!!!

>

> Having a child in special ed..does have a stigma to it...but Jolena loves

> going to her special ed class..she loves her teacher and the little boy

that

> goes there with her. She has never once been teased about going, in fact

> others wish they could go...she has a wonderful caring loving mother type

> special ed teacher that just adores her, and she feels lucky to get to

leave

> the class for an hour...sometimes I don't like it because then she misses

> things in her regular ed...but she says mom I love it...sooo if she is

happy

> and it is helping her...so be it!! Soo many kids are pulled out for

this

> that and the other thing today..it is a pretty common thing, so not much

> thought is even given to it these days!!

>

> My oldest son is a 4.0 student without hardly any studing..things just

come

> easy for him, my middle son is more around A's, B's and C's..he struggles

> much more and has to study to get good grades..let me add thats something

he

> really doesn't like to do. And then Jolena....she knows she has to study

> everynight to get good grades...she got all A's and B's last year...with

> assistance in Math. She would rather go to school to have fun..but is

veryyy

> proud of herself when she gets good grades, makes her feel veryyy proud

of

> herself and glad she studied..even though she gives mom a hard time about

> it!! We try to keep study time short...kids need to be kids first...so

we

> try to keep things fun and interesting for her!! She is doing very

well!!

> Not that it is always easy..the beginning of the school years brings new

> teachers and new adjustments..but we see it through and it always ends

with a

> very rewarding year..for both the students, teachers and Jolena!!

>

> Deb (mom to Jolena 11 mds, Noah 14, Josh 17 (Jolena's brothers have known

> from the day she was born...to them she is just Jolena..they have never

> treated her any different than just their little sister...she is picked

on

> and bullied as much as any little girl would be..but they love her to

> pieces---most of the time..hey shes their little sister...and she loves

> them....most of the time..when they aren't being a pain!! They are very

> protective of her...and she has lots of older friends and guardian angels

> because of them too...that can never hurt a situation!! )

>

> ---------------------------

September 7, 1999

Hi all,

I wanted to add my two bits to the discussion about telling others about

our childrens' diagnosis. This issue might be a bit different for us -

although Luca does not have the physical features of DS you can definitely

tell there is something up with him :-). Also, I don't make a big

distinction between Mosaic DS and traditional DS - which I think also puts

me in the minority on this list. People with traditional DS have a wide

range of abilities just like people with Mosaic DS. I don't think that an

average of 12 points higher IQ (which is what one study found people with

MDS have as compared to people with traditional Trisomy 21) is particularly

significant. You will find that there are a lot of very high functioning

people with traditional DS as well. I don't have a problem telling people

about Luca's DS because I think it's important that people meet someone

with Down syndrome and have a positive experience with him/her.

Unfortunately many people have never actually met a person with DS and as a

result they have very distorted ideas of what having DS means. I think

meeting a great kid like Luca can help change that, but it wont happen if

we hide his diagnosis. The same is true for teachers - I understand the

concern that a teacher's preconceptions about the abilities of a person

with DS might cause him/her to lower expectations, but how can we hope to

change teacher's ideas of the abilities these kids have if we hide their

condition? Luca's teachers will know about his MDS, and they will also know

that they will hear from us if Luca is ever treated like someone who can't

learn. Luca does learn, and once a teacher who has never taught a child

with DS sees that, he/she will expect the same from other kids with DS. I

think the parents of kids with DS sort of have the responsibility to

educate the people around them about the amazing potential of kids with DS

- otherwise the stigma, and the misconceptions will continue. I would also

be concerned about making MDS seem like something to be ashamed of - I hope

Luca will be proud of who he is. Of course he will be teased but so was I -

I think almost all kids get teased school and live through it. Anyway, I

am getting kind of preachy so I will stop here. We are all different people

with different ways of dealing with some very complex issues. I just wanted

to share our approach :-).

Dan, Father to Luca 2 1/2 Mosaic Translocation DS 21q21q

September 8, 1999

>I suppose each of us have to travel the road and use our gut feeling to

>tell

>us what is best and hopefully one day people will not have such negative

>stereotypes of people who happen to have a few extra chromosomes.

How true ann!!! What works for me may not for another person, and what

is right for my child may not be for someone else's child, whether they have

ds or not. I have read with interest the postings about whether or not to

tell with great interest. This has been one of the questions we have

thought about quite a bit. I have had to really think through this issue as

it is comming up for me in the next few weeks as my daughter starts her

" formal " school education in Oct. After reading the posts and doing lots of

thinking about the different issues I still come back to the same place. I

don't want a teacher underestimating my child, and I don't want her to

constantly have to prove herself to others. At the present time, and I know

this may change with time, I don't think it would benefit my daughter to

have the teachers know her diagnosis. I am a very watchful parent with all

my kids educations and will be no different with Mahrya's. If the time

comes that it becomes apparent that she would benefit from the info being

made public of course I would share it. We started her in EI when she was 6

weeks old because of the diagnosis. We certainly will not neglect to get

her the help she needs, if that time arises. As far as the being ashamed of

the diagnosis, that really took some thought. Will she feel that it is

" bad " to tell people. I want to let her know we have the faith in her

judgement as she gets older to tell who SHE wants to tell. I believe in her

right to privacy, and she will know that is is smart enough to make the

decision of who to tell and when. This has all been very thought provoking,

and I am glad to see the differences of opinion, I think it helps us all to

clarify in our own minds what is best for our own children.

Luanne

mom to Mahrya (almost three), Ben 4, Alan 11, Sandy 13, Steve 15, Dan 16

September 8, 1999

Hi Dan:

I think you have brought up some very good points.

<>

<< I think the parents of kids with DS sort of have the responsibility to

educate the people around them about the amazing potential of kids with DS

- otherwise the stigma, and the misconceptions will continue. >>

<< I think it's important that people meet someone with Down syndrome and

have a positive experience with him/her. Unfortunately many people have never

actually met a person with DS and as a result they have very distorted ideas

of what having DS means.>>

When my daughter was born we did not know what to expect as far as her

development (and we're still not quite sure how things will go), and while we

hoped she might be high functioning we assumed she would have all the delays

associated with ds. From the time we received the results of the amnio, I

have no problem telling people my daughter had ds. We enrolled her in a

school that only taught children with down syndrome. They told us there was

not a big difference cognitively between mosaic and trisomy 21. It was only

after a year to two that she showed us she was not typical of the diagnosis.

She as the only child in her class walking at 13 months and talking 18

months, please don't think I'm bragging here, I'm not. The staff at ACDS who

were working with suggested when it was time for her to start

kindergarten we may not want the school to know of the ds. After she started

pre-school in a typical nursery school, where the director knew her

diagnosis, because my son was going to the same school at the time his sister

was born, one of the teachers questioned 's ability to keep up and I

assumed it was only because she knew of the diagnosis . This situation

started me thinking that maybe it wasn't a good idea for her teachers to know

about the MDS because it would color their perception of what she would be

able to achieve without giving her a chance first. I also wondered if they

didn't know would they see anything different about her as opposed to looking

for things because she has ds. I still struggle with this, but I have

decided that her teachers need to know, if not initially, then certainly

shortly after meeting . I feel they need the information because I

want them to keep a closer eye on her to make sure she is keeping up, and if

not then to get her the help she needs. The teachers who had in

that preschool were certainly amazed by what she was able to do, and I hope

that experience will change their views of what all children with down

syndrome can do if they are given a chance.

I think I'm starting to ramble here. I guess what I'm trying to say is that

I agree with alot of what you have said, only sometimes the experiences we

have color our views on whether it's best to have people know the diagnosis.

I suppose each of us have to travel the road and use our gut feeling to tell

us what is best and hopefully one day people will not have such negative

stereotypes of people who happen to have a few extra chromosomes.

ann (Mom to , MDS, almost 6 yrs old and 9 yrs old)

September 9, 1999

Very well put point of view.

, mom of and .... both of who are currently very ill.

(asthma, microplasma pnum. and bronchitis)

----------

>

> To: MosaicDSonelist

> Subject: Re: Stereotyped

> Date: Tuesday, September 07, 1999 4:28 PM

>

> Hi all,

>

> I wanted to add my two bits to the discussion about telling others about

> our childrens' diagnosis. This issue might be a bit different for us -

> although Luca does not have the physical features of DS you can

definitely

> tell there is something up with him :-). Also, I don't make a big

> distinction between Mosaic DS and traditional DS - which I think also

puts

> me in the minority on this list. People with traditional DS have a wide

> range of abilities just like people with Mosaic DS. I don't think that an

> average of 12 points higher IQ (which is what one study found people with

> MDS have as compared to people with traditional Trisomy 21) is

particularly

> significant. You will find that there are a lot of very high functioning

> people with traditional DS as well. I don't have a problem telling people

> about Luca's DS because I think it's important that people meet someone

> with Down syndrome and have a positive experience with him/her.

> Unfortunately many people have never actually met a person with DS and as

a

> result they have very distorted ideas of what having DS means. I think

> meeting a great kid like Luca can help change that, but it wont happen if

> we hide his diagnosis. The same is true for teachers - I understand the

> concern that a teacher's preconceptions about the abilities of a person

> with DS might cause him/her to lower expectations, but how can we hope to

> change teacher's ideas of the abilities these kids have if we hide their

> condition? Luca's teachers will know about his MDS, and they will also

know

> that they will hear from us if Luca is ever treated like someone who

can't

> learn. Luca does learn, and once a teacher who has never taught a child

> with DS sees that, he/she will expect the same from other kids with DS. I

> think the parents of kids with DS sort of have the responsibility to

> educate the people around them about the amazing potential of kids with

DS

> - otherwise the stigma, and the misconceptions will continue. I would

also

> be concerned about making MDS seem like something to be ashamed of - I

hope

> Luca will be proud of who he is. Of course he will be teased but so was I

-

> I think almost all kids get teased school and live through it. Anyway, I

> am getting kind of preachy so I will stop here. We are all different

people

> with different ways of dealing with some very complex issues. I just

wanted

> to share our approach :-).

>

> Dan, Father to Luca 2 1/2 Mosaic Translocation DS 21q21q

>

> ---------------------------

September 10, 1999

All: Seems to me that the Stereotyped and the To Tell or Not To tell

conversations are very similar. We (and especially our kids) live in such a

Catch-22 place. Services are attached to labels (diagnoses), and labels create

stereotypes.

I think I agree with Dan pretty much down the line. When KC was born, it never

occured to me not to tell people. I remember, upon hearing the pediatrician

confirm the diagnosis, an inner sensation very much like a light switch going

from off to on: " Oh, that's the way life is going to be in the future. "

Things changed immediately, and have been changed ever since. Not better, not

worse. Just this way. We were there with the teachers, aides, case managers,

other parents, relatives, friends right from the beginning with all the

information we could gather and share. " Yes, it's really true. This is what

our life is like. " Other families with special kids became our friends. Those

kids are grown now (or at least through high school), and many of us are still

friends. We all still follow each others successes and failures. As I think

of it now, I wonder if it was an attempt to normalize what was happening to us

at the time. Anyway, normal is what it has become. Once the light switch is

hit, you can't turn it back off.

Which leads me to an important point, I think. And it's a point that KC has

taught me. These questions, no matter how difficult and soul searching they

are for us, are easier for the parents than they are for the kids.

What do you want most in life? Better job, house, car, fewer bills, win the

lottery? Whatever it is, all of those things are available to us either

through hard work or good fortune. On the other hand, there is nothing more

that KC wants in the world than to change his chromosomes, and no amount of

hard work or good fortune is going to cause that to happen for him. It's hard

for me to imagine the psychic consequence of knowing that what I want more than

anything from life, will never, ever happen for me. I think it has hurt him

emotionally. I find him less able to persevere than I think he should be able

to be. I connect it to a belief that nothing will change anyway, so why try.

All of these conclusions argue for not being told, as he stated a few days

ago. And yet, to deny our true nature . . . whew, I just can't see how that

helps us.

At the risk of following the philosphical trail into some deep words from which

there is no exit, let me end with a practical point. I have come to believe

that middle school and high school is such a difficult experience for kids

these days -- none of my three who have finished have had the experience I had

as a teenager -- that if you slide off the normal curve even slightly, there is

very little or no support to get you back on. Services both come from and

create labels, yet they are our kids best hope for keeping up.

Take care everybody. I'm going on vacation for a week and a half so I won't be

able to correspond for that time. KC, being 19 1/2, will be home alone. We've

done this many times before (I travel some with work) and as long as he has

food and friends, he is just fine. In case you wonder, I worry about the same

things with KC while I am gone that I would worry about with any of my kids.

He and I talk plainly and candidly about expectations and he (almost) never

lets me down. There was the one time where the homeless friends stayed

overnight here while I was gone. His response, " What did you expect me to do?

Make them sleep on the street? " " Aargh, don't make me be mean to your

friends. I don't even know them. Just don't bring them here while I am

gone. " " But what should I do . . . " and so on.

Greg and KC. Plus Ben --20-- at Art School in Portland, Molly --18-- just

graduated from high school and waiting for winter term to start community

college, and Ellen -- 14 -- who started her high school experience this week.

September 10, 1999

I think it is important notttt to stereotype our children..ourselves. I have

seen sooo many parents get sooo wrapped up into this ds thing, by joining all

the groups and hanging around all the other ds parents and kids. We started

out in the beginning that way...and I just didn't get it. I never felt the

sadness that I saw in other parents, I never felt God had handed me something

awful, yes I was worried and afraid of her tomorrows...but we took it one day

at a time!! We went to a convention when she was about 3 months old...and

I was determined I would never again go to such a thing. I hated the way the

parents were all soo grouped together in their " sadness " -- I hated the way

the older children would stand up and tell their stories about how sad their

parents were when they were born, and I swore to myself and to my daughter

she would never hear those words from me, she would never know how painful

the first few days of her life were, I never want her to think of her birth

as a sadness, I never want her to think of herself as something awful, or

something different, by only hanging around people with labels themselves.

Yes, you need to search out the information...and no you don't want to

pretend this isn't a real thing, but I feel the more you can keep your life

the same...treat them just like any other baby and child and young adult.

They don't need to hear how sad you were, or how awful it is to have an extra

chromosome...because it isn't and it shouldn't be!! The world is made up of

alot different types of people...so what they have an extra chromosome, so

what if they may learn alittle slower, so what if they have to attend special

services...my daughter lovessss her speech and spec ed teachers..and going to

those classes makes her feel special in a good way..she has soo many

" mothers " ...and the important thing is....Is she happy? Do they accept

themselves for who they are? My hopes for our Jolena is that she will love

herself for who she is, she will accept the challenges that may come, with

her head up high and be proud of who she is..be proud of what she has

accomplished and what she may have to overcome. I will be there beside

her..loving her and bursting with pride!!!

Deb (mom to Jolena 11 mds, Noah 14, Josh 17)

September 10, 1999

, Your posts are always very informative. You write well, and your

thoughts are extremely organized. I am very glad to be able to read your

posts and learn from them.

I do have a thought provoking question that I would genuinely love to hear

your opinion on (or anyone else out there! <grin>)

You will have to pretend for a minute with me.....Pretend you have a child

named " JR " not diagnosed with anything................

What if you were told at birth that you had a perfect little baby boy. You

named him JR. Pretend that you did not know that JR had any delays WHAT SO

EVER, until he was about .....say 2 1/2 years old. Then you noticed some

speech problems. Pretend you now started early intervention with speech

therapy and placed JR in the birth to three program for " developmental

delays " associated with speech. Life goes on.......and you start OT and PT

in addition to the " school sponsored " three to five year old program,

because as JR got older, other quite small OT and PT delays started to

surface. All the teachers, all the therapists, all the administrators, and

all the family and friends already new your child as just JR. No one

including any of your doctors, family, or even yourself knew why your

precious JR had these small delays.

Then years after his birth, you continued your probing....you were trying to

find answers to JR's delays. You find out that JR's IQ is within normal

ranges.....you find out that none of JR's test reveal any name for his

delays...you find out that JR is not delayed enough to ever merit an

individual aid in the class-room. You are told that JR will be like

MILLIONS of other children with delays. That is, they JUST DON'T KNOW why

your child has delays. It just happens. You have more than one medical

doctor and therapist tell you this, so you told yourself........( " this is

the way life is going to be " )

A few more months pass, and THEN after about four years you find out through

blood work, (that you INSISTED on because of your own research and

insatiable search for answers), that JR has MDS. You are the only one that

now has a " name " to attach to the delays.

Now.......would you make a concerted effort, a planned attempt, to notify

each and every person working with and playing with JR for all these years.

Exactly how do you approach each teacher, each therapist, each friend, each

person........( " Oh by the way, we found out last week that JR has

DS????Totally out of the blue?????) Or could you be tempted to say to

yourself....Why should this change anything. What difference should it

make now that we have a " name " for JR's developmental delays. Would JR get

a better shot at life if he is just our same old, same special, same little

JR. What more could the school and therapists do, than what they are

already doing? What more could we as parents do, than what we are already

doing? What more could anyone do?

Ok....you can quit pretending now <grin> When I re-read this, I worry that

is sounds argumentative with you....PLEASE understand that it is NOT! I

have become very impressed with your and KC's insights, your life

experiences. I really am wondering if you think that any of this would have

made a difference in the ways you helped KC. (I realize it is all just

pretend for you! But you know, it is reality for me!) I wonder if it would

have made a difference to anyone on the list?

This could be any one of a number of children.......not just JR. It just

made the thoughts come so much easier to place a name on the child we all

love so much (our own). Try putting your child's name in JR's place and see

what thoughts it might generate. I am curious!

Marie (Mom to 6 mds, and her big sister 9)

-

>

>When KC was born, it never

>occured to me not to tell people. I remember, upon hearing the

pediatrician

>confirm the diagnosis, an inner sensation very much like a light switch

going

>from off to on: " Oh, that's the way life is going to be in the future. "

>Things changed immediately, and have been changed ever since. Not better,

not

>worse. Just this way.

September 10, 1999

I have to reply to this situation also. You know, when my son was born 6

years ago, the doctors bluntly told us our child was mds, no reasons why

this just happens. Thank you for having your baby with us and good

luck...So, now were two young people, never had a baby before, really do

not know what to expect. Well, with advice from others, trial and

errors,pushing and pulling, we made it finally to kindergarten. There

were a few things we will never do again, or recommend to anyone else to

do. There are a few things we should have done..but children with

disabilities do not come with instructions. ly, we dont know how it

feels to raise a normal child! This is all we know. Now, in 6 weeks we

will have a " normal " child and really nervous about that! So, we will

probably treat this next child as being different..not what we are used

to. So see, its really in how you look at things. How you deal with

life. None of us are right or wrong how we handle it, we just know we

have to. Thanks for letting me share my thoughts. Misty Mom to Cody 6

M. L. Murrell wrote:

>

> , Your posts are always very informative. You write well, and your

> thoughts are extremely organized. I am very glad to be able to read your

> posts and learn from them.

>

> I do have a thought provoking question that I would genuinely love to hear

> your opinion on (or anyone else out there! <grin>)

>

> You will have to pretend for a minute with me.....Pretend you have a child

> named " JR " not diagnosed with anything................

>

> What if you were told at birth that you had a perfect little baby boy. You

> named him JR. Pretend that you did not know that JR had any delays WHAT SO

> EVER, until he was about .....say 2 1/2 years old. Then you noticed some

> speech problems. Pretend you now started early intervention with speech

> therapy and placed JR in the birth to three program for " developmental

> delays " associated with speech. Life goes on.......and you start OT and PT

> in addition to the " school sponsored " three to five year old program,

> because as JR got older, other quite small OT and PT delays started to

> surface. All the teachers, all the therapists, all the administrators, and

> all the family and friends already new your child as just JR. No one

> including any of your doctors, family, or even yourself knew why your

> precious JR had these small delays.

>

> Then years after his birth, you continued your probing....you were trying to

> find answers to JR's delays. You find out that JR's IQ is within normal

> ranges.....you find out that none of JR's test reveal any name for his

> delays...you find out that JR is not delayed enough to ever merit an

> individual aid in the class-room. You are told that JR will be like

> MILLIONS of other children with delays. That is, they JUST DON'T KNOW why

> your child has delays. It just happens. You have more than one medical

> doctor and therapist tell you this, so you told yourself........( " this is

> the way life is going to be " )

>

> A few more months pass, and THEN after about four years you find out through

> blood work, (that you INSISTED on because of your own research and

> insatiable search for answers), that JR has MDS. You are the only one that

> now has a " name " to attach to the delays.

>

> Now.......would you make a concerted effort, a planned attempt, to notify

> each and every person working with and playing with JR for all these years.

> Exactly how do you approach each teacher, each therapist, each friend, each

> person........( " Oh by the way, we found out last week that JR has

> DS????Totally out of the blue?????) Or could you be tempted to say to

> yourself....Why should this change anything. What difference should it

> make now that we have a " name " for JR's developmental delays. Would JR get

> a better shot at life if he is just our same old, same special, same little

> JR. What more could the school and therapists do, than what they are

> already doing? What more could we as parents do, than what we are already

> doing? What more could anyone do?

>

> Ok....you can quit pretending now <grin> When I re-read this, I worry that

> is sounds argumentative with you....PLEASE understand that it is NOT! I

> have become very impressed with your and KC's insights, your life

> experiences. I really am wondering if you think that any of this would have

> made a difference in the ways you helped KC. (I realize it is all just

> pretend for you! But you know, it is reality for me!) I wonder if it would

> have made a difference to anyone on the list?

>

> This could be any one of a number of children.......not just JR. It just

> made the thoughts come so much easier to place a name on the child we all

> love so much (our own). Try putting your child's name in JR's place and see

> what thoughts it might generate. I am curious!

>

> Marie (Mom to 6 mds, and her big sister 9)

>

> -

>

> >

> >When KC was born, it never

> >occured to me not to tell people. I remember, upon hearing the

> pediatrician

> >confirm the diagnosis, an inner sensation very much like a light switch

> going

> >from off to on: " Oh, that's the way life is going to be in the future. "

> >Things changed immediately, and have been changed ever since. Not better,

> not

> >worse. Just this way.

>

> ---------------------------

September 11, 1999

Hi Deb,

I didn't find out that my daughter had MDS until she was about 2

months old. She is now 5 years old. I was not upset. I know that I felt a

little scared because I did not know anything about down syndrome. After she

had all her tests and everything was negative I started to collect info from

books and from the people at her Early Intervention. The one thing I

remember thinking was that she would never marry or have children. All the

things I planned for my baby was not to be because she was down syndrome.

Boy was I wrong. Now I know better. She can do and have anything a " normal "

person can if she puts her mind to it. And with me behind her I think

anything is possible. She is around all different types of children and she

learns from all of them. She loves school and she loves to learn new things.

I favorite thing she tells me all the time is " I do it myself " She is one

determined little girl. I feel blessed to have her. She came into my life

at a very low point. My ex husband left me 3 months before she was born. I

always said she was my savior during those times. Learning about her and MDS

kept my mind focused.

Most of the time I just think of her as a little girl. At times I notice the

MDS but not always. She is mostly like any kid. She loves to play with her

older brother Nicky who is 11 and older sister le who is 10. She plays

with a lot of my other kids friends, they all treat her great.

Take care,

Jeanne

September 11, 1999

Hi Misty,

I did not know had MDS until she was 2 months old. She was my

third child. I took care of her the same as my other two. I tried nursing

her and it didn't work it also didn't work with my first either and I didn't

try with my second. I still changed formula's same as with my other two.

She still napped same as they did, and ate the same baby food they did. The

only difference is that things took longer with her. What I am trying to say

is that a baby is a baby. They all need to be taken care of in the same way.

You will see when your baby gets here there will not be a difference. You

will love that baby the same and take care of that baby the same. It will

come naturally. I always was amazed that even though she was down syndrome I

still took care of her the same way as my other two.

Good Luck I hope this helped.

Jeanne (Mom to Nicky 11, le 10 and 5 years.)

September 15, 1999

Or could you be tempted to say to

> yourself....Why should this change anything. What difference should it

> make now that we have a " name " for JR's developmental delays. Would JR

get

> a better shot at life if he is just our same old, same special, same

little

> JR. What more could the school and therapists do, than what they are

> already doing? What more could we as parents do, than what we are

already

> doing? What more could anyone do?

>

How true.... If my supsicions are confirmed with , nothing will change.

We will not look at her differently, treat her differently, or expect

different performance from her. I am a scientist at heart, and therefore

like to deal with certianties. (which the logical part of me knows that

none exist!) I am doing this more for the knowledge, and so can be

aware of it as she matures. For a while I toyed with the idea of waiting

and letting decide if she wanted to be tested when she was old enough

to make the decission. Then some therapists that I work with, who are

great friends, pointed out that teenage years are difficult enough without

having to make decissions like that.

says " she is going to bake cupcakes at her Yia Yia's house, and spend

a night over there another day. " alexandra " And I got 3 A's in my

name! "

Sorry to regress, but she just wanted to type her name... need help to find

the keys, (n, d, r ) the others she knew.

She wants to type...

jdfgfgcnbmgjtjrtadxscvnfmhjg6hggkulmvbuyggbb6u

Anyway, she has no idea at this point what I suspect, but I believe that

as her mom, I owe it to her to make the choice, and not place that burden

on her.

For those of you wondering... Yia Yia is Greek for grandmother.

, mom of and

September 21, 1999

> Marie: Well now, that does present an interesting set of circumstances.

> To be honest, I'm stumped. I sit here looking at the screen, wondering

> exactly what the right thing to say is. I don't know.

Is it important to know the cause of things or do we just deal with things the

way they are? Why did I feel better being able to name KC's condition?

Especially when he feels so much worse having a name for it? Or is it not the

name that causes him pain, but the knowing that he has a condition that he would

like to change and never can?

Is it just simply the difference between clarity and ambiguity? Were it not for

a sharp eyed and inquisitive pediatrician, JR's story could be KC's very

easily. From a practical standpoint, what I fear is that we wouldn't have

sought out services for him at an early age (denial is a powerful force) and

then we would always wonder about the improvement that he missed out on.

What will you do with JR when you find services through the local developmental

disability office that you feel he really needs, but for which a diagnosis is

required? What do you do now?

This stuck-in-the-crack thing is really befuddling sometimes.

I'm going to have to keep this short this time. Sorry it took me so long to

respond. I got back in town on Sunday and am still recuperating from the

marathon walking sessions that sight seeing in DC requires. The apartment was

still standing, apparently none the worse for wear. It will take me several

days to respond to all the e-mail that arrived while I was gone. You've

probably received more intelligent responses to your initial question than this

one, I just haven't got to them yet.

Greg. KC's (19) dad, plus Ellen (14), Molly (18), and (20).