Disability community decries ' Treatment

[Guest guest]

Wow.... they have some great points too.

I am really curious as to how this all going to play out. Usually I have strong feelings either one or the other on things, but with this, I keep going back and forth. I can so plainly see how this would improve her over all life and is not just for the parent's- yet it was pretty drastic. But then her condition is pretty drastic...... OTH-just cause we can do this, does that make it right. And I did take offence at the comment about an adult in her condition being 'grotesque' vs it being more natural for her to remain in a child's body where being child like seems more 'natural'

This is a tough one. She sure seems happy over all though.

You haven't said which way you lean Kathy.....

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

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Disability community decries ' Treatment"

http://www.cnn. com/2007/ HEALTH/01/ 11/ashley. outcry/index. html

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[Guest guest]

Did you read the interview with the ethesist that was within the article? That had some good points, too. He seemed to stress that she would continue to age, just remain 4'5''. He also said this decision was only made after throughly assessing the parents and why they wanted this.

It is a tough call. Glad I don't have to make such decisions.

ette

--------- Disability community decries ' Treatment"

http://www.cnn. com/2007/ HEALTH/01/ 11/ashley. outcry/index. html

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[Guest guest]

I can see some points for both sides, too..at first, when I read

about it, I was horrified,,,and I still kind of lean towards the side of it

being an over the top way to deal with the situation-I know I am not in the

same situation, but I still don’t think that I would have done it if it

was my child.

I have to confess that I don’t like the name ‘pillow

angel’,either…but that’s just me.

KathyR

From:

Down Syndrome Treatment

[mailto:Down Syndrome Treatment ] On Behalf Of Carol in

IL ty

Sent: Friday, January 12, 2007 6:10 PM

Down Syndrome Treatment

Subject: Re: Disability community decries

' Treatment "

Wow....

they have some great points too.

I

am really curious as to how this all going to play out. Usually I have strong

feelings either one or the other on things, but with this, I keep going

back and forth. I can so plainly see how this would improve her over all life

and is not just for the parent's- yet it was pretty drastic. But then her

condition is pretty drastic...... OTH-just cause we can do this, does that make

it right. And I did take offence at the comment about an adult in her condition

being 'grotesque' vs it being more natural for her to remain in a child's body

where being child like seems more 'natural'

This

is a tough one. She sure seems happy over all though.

You

haven't said which way you lean Kathy.....

Carol

in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma,

subglottal stenosis, and DS.

My problem is not how I look. It's how you see me.

Join our Down

Syndrome information group -

Down Syndrome Treatment/

Listen to

oldest dd's music http://www.myspace.com/vennamusic

Disability community decries '

Treatment "

http://www.cnn. com/2007/ HEALTH/01/ 11/ashley. outcry/index.

html

[Guest guest]

Well I refer to as my Downi Angel on occasion but only in the privacy of my own home. :-) And I know there is no one on earth who expects more from her then I do.... but I agree they seemed to use it a bit much and group all the kids into that. Reminded me of a stuffed toy but then I am not them and I don't know them or their hearts. They sure seem to be wondeful, thoughtful parents.

I did read the ethicists questions. I too found it interesting that she is going to age normally, just be smaller.

I found it surprising that she is terrified of blood!

Glad we don't have to face such decisions either.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

[DownSyndromeInfoEx change] Disability community decries ' Treatment"

http://www.cnn. com/2007/ HEALTH/01/ 11/ashley. outcry/index. html

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[Guest guest]

On 1/12/07, Carol in IL <ps1272000@...> wrote:

I did read the ethicists questions. I too found it interesting that she is going to age normally, just be smaller.

I found it surprising that she is terrified of blood!

This surprises me too. They said she has the mind of a 3 month old, but it would take more cognitive ability to be afraid of blood. When someone can't speak or control their body it is difficult to tell if they have intelligence. She might have normal thoughts, but have no way of expressing it. I would suspect she is more aware than they think because she gets bored and watches TV. My daughter with CP sits for hours with nothing to do without complaint. She has no awareness of TV either. I play a radio for her to make *me* feel better. Don't think she is neglected though. I found a wonderful CNA to give her undivided attention for 5 hours a day and the state pays for it. She stays in the living room most of the day so we can say " hi " to her as we pass by. She is among us when we sit down to chat or watch TV. Her IEP gets her PT, OT, Speech, Vision and a Special Ed teacher here in the house every week through the public schools. (Vision and OT are only 2x/month, but Spec Ed is twice a week.) She goes with us to take kids to choir, Tae Kwon Do, basketball, & soccer. I do try to grocery shop without her though. Pushing her wheelchair and a cart requires a sibling assistant and we look like a train. The only things that keep her from being in a persistent vegative state is that she cries in pain and laughs with pleasure. She has begun laughing for no apparent reason and that scares me, but it is a joy to hear her happy.

You know, aging isn't comfortable or convenient, regardless of your abilities., mom to 5,including 2 with special needs,actually, they all have special needs, but 3 of them are less severe

11 y.o. has a lisp and craves respect9 y.o. has amblyopia, wears an eye patch and needs time alone after being social6 y.o. needs way more hugs than a normal child and must share sweets with her siblings3 y.o. has CP1 y.o. has DS

[Guest guest]

In a message dated 1/13/07 12:05:09 PM, priskend1@... writes:

In my opinion these situations

shouldn't be as much about the parents and their problems as it

should be about the child.

The child is an extension of these parents since she cannot voice her wishes. When Olivia was young we had an arrogant doctor rush to do a procedure on her that I did not feel was necessary when a simple steroid would have fixed the problem. I remember this Doc telling me he DID NOT care about me or my feelings and all he was doing was treating Olivia. We had to fight 2 other doctors during this time who wanted to do things to her that in the end I knew were not the best choices and I was supported by other specialists in the hospital.

That is the other extreme we do not want to see or approach. Each parent must make responsible decisions for their child, we call that advocating for those who cannot do it for themselves. Yes there make be abuses of this system, but for the most part I want my rights as a parent to be respected and honored when it comes to the decisions I WILL MAKE for my child, not some medical personal or worse yet some government official.

Joan

[Guest guest]

When was a tiny baby- newborn- she would cry when she smelled rubbing alcohol because she knew it meant pain would follow, so I think if she had bad experiences relating to blood- maybe lots of blood draws?- that she would make the connection. Even though developmentally she is a baby, she still has 9 years experience and babies do remember things.

So I don't know what that means.

, I am so happy you have stood your ground on this issues and posted your honest thoughts since you are in the same position. You have given me much to think about, even though I still don't know which side or even if I think my opinion should matter in this case and if it just shouldn't be between the parent and child.

The one thing I firmly believe is the parents did this *for* their daughter and not themselves. I think they would have had a harder time doing it had it been just for their benefit. If it was to help their daughter, I could see where making the decision would be easy.

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

Re: Disability community decries ' Treatment"

On 1/12/07, Carol in IL <ps1272000 (DOT) com> wrote:

I did read the ethicists questions. I too found it interesting that she is going to age normally, just be smaller.

I found it surprising that she is terrified of blood!

This surprises me too. They said she has the mind of a 3 month old, but it would take more cognitive ability to be afraid of blood. When someone can't speak or control their body it is difficult to tell if they have intelligence. She might have normal thoughts, but have no way of expressing it. I would suspect she is more aware than they think because she gets bored and watches TV. My daughter with CP sits for hours with nothing to do without complaint. She has no awareness of TV either. I play a radio for her to make *me* feel better. Don't think she is neglected though. I found a wonderful CNA to give her undivided attention for 5 hours a day and the state pays for it. She stays in the living room most of the day so we can say "hi" to her as we pass by. She is among us when we sit down to chat or watch TV. Her IEP gets her PT, OT, Speech, Vision and a Special Ed

teacher here in the house every week through the public schools. (Vision and OT are only 2x/month, but Spec Ed is twice a week.) She goes with us to take kids to choir, Tae Kwon Do, basketball, & soccer. I do try to grocery shop without her though. Pushing her wheelchair and a cart requires a sibling assistant and we look like a train. The only things that keep her from being in a persistent vegative state is that she cries in pain and laughs with pleasure. She has begun laughing for no apparent reason and that scares me, but it is a joy to hear her happy. You know, aging isn't comfortable or convenient, regardless of your abilities., mom to 5,including 2 with special needs,actually, they all have special needs, but 3 of them are less severe 11 y.o. has a lisp and craves respect9 y.o. has amblyopia, wears an eye patch and needs time alone after being social6 y.o. needs way more hugs than a normal child and must share

sweets with her siblings3 y.o. has CP1 y.o. has DS

Don't pick lemons.

See all the new 2007 cars at Autos.

[Guest guest]

RE: [DownSyndromeInfoEx change] Disability community decries' Treatment"I can see some points for both sides, too..at first, when I readabout it, I was horrified,,, and I still kind of lean towards theside of it being an over the top way to deal with the situation-Iknow I am not in the same situation, but I still don’t think that Iwould have done it if it was my child. I have to confess that I don’t like the name ‘pillowangel’,either… but that’s just me.KathyRPriscilla Kendrick, married 29 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____________ _________ _________ _________ _________ __

[Guest guest]

i am one of those who is on both sides of the fence with this one. i

emailed a dear friend and former co-worker of mine to get her opinion

on the family. she and i worked in a special school for those much

like " pillow angel " . it served students ages 3-21 & my friend worked

in the field for over 25 years. she also has a 40+ year old son with

cp. she was really the only person i know that can understand what

it is like to be a mother to a child with special needs. anyways,

here

is what she said, " I think society accepts them more when they are

young. When they get older they aren't so cute and sweet to the

public. I don't falt the family for what they did. I can feel the

love and how much they care in the article. " spend some time with

children just like ashley and you may understand why and how her

parents could

did this. many of our students experienced much un-needed pain as a

result of being a " woman " . the effect on quality of life is enormous

to say the least. i am with my friend on this, i don't fault the

parents either. it will be interesting to see how this all pans

out. my hope is as always the best for the family and more

importantly the child.-- In

Down Syndrome Treatment , " Kathy Ratkiewicz "

<Kathy_R@...> wrote:

>

> http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/index.html

>

[Guest guest]

I am so glad that you posted this. I am on the fence as well. I have to think that the parents are doing what they think is best. Who am I to judge as I am not in their shoes and have no idea what they go through on a day to day basis. Judy mymiraclepj <mlynnbryant@...> wrote: i am one of those who is on both sides of the fence with this one. i emailed a dear friend and former co-worker of mine to get her opinion on

the family. she and i worked in a special school for those much like "pillow angel". it served students ages 3-21 & my friend worked in the field for over 25 years. she also has a 40+ year old son with cp. she was really the only person i know that can understand what it is like to be a mother to a child with special needs. anyways, here is what she said, "I think society accepts them more when they are young. When they get older they aren't so cute and sweet to the public. I don't falt the family for what they did. I can feel the love and how much they care in the article." spend some time with children just like ashley and you may understand why and how her parents coulddid this. many of our students experienced much un-needed pain as a result of being a "woman". the effect on quality of life is enormous to say the least. i am with my friend on this, i don't fault the parents either. it will be interesting

to see how this all pans out. my hope is as always the best for the family and more importantly the child.-- In Down Syndrome Treatment , "Kathy Ratkiewicz" <Kathy_R@...> wrote:>> http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/index.html>

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[Guest guest]

Actually no, I'm not saying short is bad --unless someone did it to

you on purpose. You think I wouldn't be furious if my parents had

somehow made me short on purpose? There's a difference here. I

guess too I just think that natural (and normal) is usually better

--I know that's very arguable and of course we try to fix our kids

with DS all we can and bring them up to normalcy. And I do not

remember you being short, Carol!

The ortho is wanting to put screws in Evan's ankle growth plates to

limit the growth on one side while the other catches up and I'm

resisting this surgery cause I just don't like the sounds of it. In

fact I just travelled all day and I'm sitting here in St. Louis right

now with an appt. in the morning with another ortho to hopefully

avoid this surgery and fix his feet with casting and braces. Don't

even know if it's possible or if I may be forced to come home and

think about the other.

Obviously there are many people on both sides of this issue for it to

be stirring up a controversy. My mind goes back to Evan's open heart

surgery 10 years ago. There was a girl there, 16, mom to a baby girl

born prematurely with DS and she had major heart problems. We

watched her making the decision to " let the baby go " and it just was

a revelation to me to hear her talk about how hard the decision was

and how difficult. It came to me then that she actually chose the

easy road --for her. It was going to be a much harder road to keep

the baby and fight for it. JMHO. I could be wrong but that was just

a strong feeling I had at the time and I think too many times they

want to talk about the hard " difficult " decision when really they

chose the easy way out. I just have to wonder if this decision isn't

like that too --easier for the parents and I just --something within

me just rebels at this decision. Sorry. Could be wrong but just the

fact that it's stirring up folks shows it's simply not cut and dried

one way or another.

And yes, the DS associations " say " they are there to help folks with

DS have a better life, etc. etc. yada yada yads BUT how would we feel

if some group our kids belonged to, like their soccer team or

football team or something, the leaders came out and said, " Now we

don't want anyone to think we are for or against abortion. We won't

say if these football players should have been aborted or not. We

also wouldn't want to tell any pregnant person who thinks they might

have a football player in their belly that they shouldn't consider

aborting. "

How ridiculous is that? Would we want our kids to play football for

this group? Yet that's what the DS groups are doing with their

stance on abortion. And yes, the pro abortion arguments don't make

sense anyway.

Priscilla

>>>>>> Posted by: " Carol in IL "

ps1272000@...

----- Original Message ----

From: Priscilla <priskend1@...>

I think I'd have to approach it from the angle of what I would want

done to me if I were that poor girl. In my opinion these situations

shouldn't be as much about the parents and their problems as it

should be about the child. I wouldn't want this to happen to me. I

think too, that what about hope for the future? What if some

treatment or something in the future might help me? I'd want my body

intact as possible just in case. JMHO.

>>>>>Carol: Hold on there Priscilla! Are you saying short is somehow

bad??? ;-) As a short person I can say if something came along to

improve brain function, she wouldn't mind her short body and breasts

can always be restored. I don't think there is much hope in the near

future for that... it would realy be betting on a long shot.

The only that keeps me from condeming this is it seems the parents

did this for her comfort and care. Who of us would make our kids

suffer even TINY pain if there were no gain? Her dd is very aware of

pain, and I think they want to avoid it for her. It just would n't

seem to be consistant with how they have been caring for her all

along.>>>>>>>

Priscilla: Also re the DS association stand on abortion. What's

wrong with them

just stating that they think people with DS can have a happy

productive life and concentrating on all the positive things for

crying out loud? They don't have to get all that involved in the

abortion argument but could at least act like they think babies with

DS are human and have worth. Yeah. I know --goes back to the

abortion argument but still . . . if a DS association can't argue

kids with DS should live, then why do they even exist? Maybe the

association should be aborted --I wouldn't give them a dime and

don't. JHMO.

>>>>Carol: Isn't that what they have been doing???>>>>>

Priscilla K

Priscilla Kendrick, married 29 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

__________________________________________________