Couric & Co.
September 10, 2008 5:41 PM

Katie Couric's Notebook: Down Syndrome

You've probably seen pictures of Sarah Palin and her husband with their five month-old son. He's one of the 5,000 babies born in this country each year with Down Syndrome. It's a heart-breaking diagnosis for any parent ... hopes and dreams suddenly shattered. It means their won't be able to live independently as an adult.

Advocacy groups are using Palin's candidacy as a chance to educate Americans about this genetic disorder, and that includes advising doctors to give expectant couples the entire picture, and not just one option.

In many cases, a woman who is told she's carrying a baby with Down Syndrome terminates her pregnancy. That can be an agonizing choice, but the parents of children with Down Syndrome say doctors do need to give parents all the information they need and deserve so they can make the choice that's right for them.
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katie couric ,
down syndrome ,
sarah palin
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Katie Couric's Notebook

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by boston1954 September 10, 2008 6:29 PM PDT
I may be wrong but I believe it is called Downes Syndrome.
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by evelkarocky September 10, 2008 7:02 PM PDT
hey kattie no offence but that little comment about it is not clear if mcain would fund any special needs , for the kids with down syndrom, or something else that is just as bad.cmon!you know better than that and that is some **** poor reporting.you are better than that.
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by nyteshift777 September 10, 2008 7:04 PM PDT
hey katie
Last year when I was visiting a local antique store a downs syndrome lady walked by. I was standing outside of the store looking at antiques on the sidewalk and this lady (only 4 ft tall) came up to me and asked if she could pray with me.. So I said sure..She took my hands and started her prayers..and then thanked me and strolled away...
I was touched to the heart by her gesture and I must say that her action changed my life..Ive been a christian for some time but this had to be one of my more profound christian experiences that I ever had.
Downs syndrome people are still people..to throw them away by abortion, rejection, or by humiliating them in public is a more devestaing crime and injustice to humanity. God has his finger on those who are broken hearted,.,,,but is even more close to those who are disabled, or have a dysfunction that hampers them from "normal" living. This is proven in this wonderful downs syndrome lady who walks the streets in her daily routine in Marshfield wis.

thanks
d.r.
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by q1234biteme September 10, 2008 7:04 PM PDT
Why did Sara Palin have a decision otherwise known as "choice"concerning the birth of her baby. She is anti-abortion, correct?
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by evelkarocky September 10, 2008 7:04 PM PDT
ok i cant spell to good.but i know what is rite sorry for my stupidity
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by burrowclanva September 10, 2008 7:10 PM PDT
As the parent of a beautiful 9 month old with Down (yes, it is Down Syndrome!) I appreciate the piece that aired tonight. For those of us who have chosen to bring these precious Godly babies into our lives, it helps educate expectant parents who desperately seek unbiased information. I was richly blessed to have a very honest, supportive maternal fetal medicine team at VCU Medical Center that reassured me that my baby would be a gift to our family. Despite the slightly liberal spin, I still appreciate getting the conversation going.
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by merette-2009 September 10, 2008 7:16 PM PDT
I find it very funny that the only time anyone seems to care about all the children born with down syndrome is now that Palin is running for vice president. Why is that? Many children are born every day with some form of handicap and get no recoginition no form of help to the parents, but because Palin is running for office now you care and run the story, well as Obama said put lipstick on a pig its still a pig. If your poor and have a handicapped child you get no recoginition, but run for office and its in the spotlight.
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by may20bride September 10, 2008 7:55 PM PDT
The correct term is Down Syndrome. I for one am glad that Down Syndrome is being put in the limelight. I''m hoping it will change some peoples minds that the diagnosis is not a death sentence for the individual or their families. With early intervention and school programs where the children are mainstreamed, they can accomplish allot. There are different degrees of Down Syndrome from mild to severe. Every person with D.S. shouldn''t be placed in the same category either. MS Couric is incorrect at stating that a person with d.s. will not be able to live independently as an adult. There are people that live alone with assistance and people that have room mates that also have down syndrome. They take buses to and from work and fly on planes unassisted. I have a five year old son with Down Syndrome and I can tell you it hasn''t been a cake walk. There will always be challenges. But you know what? Life is a challenge. We all have them. Some more than others. But we also experience pure joy every time a milestone is achieved. The milestones others take for granted.I''m also hoping this exposure will bring even more needed funding that the researchers need for finding new treatments and educating people more so they don''t think the only choice they have is to dispose of these children.
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by may20bride September 10, 2008 7:57 PM PDT
The correct term is Down Syndrome. I for one am glad that Down Syndrome is being put in the limelight. I''m hoping it will change some peoples minds that the diagnosis is not a death sentence for the individual or their families. With early intervention and school programs where the children are mainstreamed, they can accomplish allot. There are different degrees of Down Syndrome from mild to severe. Every person with D.S. shouldn''t be placed in the same category either. MS Couric is incorrect at stating that a person with d.s. will not be able to live independently as an adult. There are people that live alone with assistance and people that have room mates that also have down syndrome. They take buses to and from work and fly on planes unassisted. I have a five year old son with Down Syndrome and I can tell you it hasn''t been a cake walk. There will always be challenges. But you know what? Life is a challenge. We all have them. Some more than others. But we also experience pure joy every time a milestone is achieved. The milestones others take for granted.I''m also hoping this exposure will bring even more needed funding that the researchers need for finding new treatments and educating people more so they don''t think the only choice they have is to dispose of these children.
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by nchips-2009 September 10, 2008 8:07 PM PDT
Dear Katie,Thanks for the info about children that are born with Down Syndrome. Please everyone remember the word children first....I know first hand because I have a son with Down Syndrome. Parents can find out about this syndrome by going on line.The info is endless and far more than I ever had.My son is 25 and I can assure you that children with Down Syndrome are just as different as other children. One thing that I did not appreciate was Sarah Palin parading her son on national tv. I thought she was despicable.Her child is not a toy and a play for votes. She ought to be ashamed of herself.She certainly will not win my support because of her actions.


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by tgraziosi1 September 10, 2008 8:49 PM PDT
My twin son was born with Down syndrome in May of 2008. I could not have had more support. We knew very early and as a family agreed to move forward with the pregnancy. I was fully aware of all my options and was always proactively approached for support. I can not speak more highly of my doctors from Newton Wellesley Hospital, Children%u2019s and Brigham and Women%u2019s. I guess you never realized that living in Massachusetts had so many benefits until you need them. I don''t know if I agree with your news cast. I would hate for people to reconsider their decision based on the lack of support that some my have received. We couldn''t be more in love with our son and wouldn''t change one thing. Theresa Waltham, MA
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by geobing September 10, 2008 9:52 PM PDT
Chosing to keep a Down Syndrome baby, is considered a very altruistic gesture. These parents can be admired for their resolve to raise a valuable citizen with disaabilities who can contribute to society. However, parents rarely think of what will happen to that now grown up citizen with the child''s mind who will inevitably need some level of support, care, and normalcy once the parents have passed. That duty usually falls to a willing sibling who also sacrificed things in life growing up with the handicapped sister or brother, even if it wasn''t considered a burden at the time. Developmentally disabled people unfortunately are never totally self-sufficient, and although there are wonderful programs for them, it can be difficult for the family member who takes on the responsibility. It''s like having a child who never grows up and is a tremendous and time consuming responsibility. I commend and support parents who take on the raising of a special child, I just wish parents could be made aware of the challenges that arise years later for the other members of the family before making this life-changing decision.
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by lovemybaby1 September 10, 2008 11:18 PM PDT
Gov. Palin was in "no condition" to become pregnant? Are you kidding? Who are you to decide who is in "condition" to become pregnant? Just because you would not love and care for a special needs child does not mean that the whole world should not become pregnant after 40. And for your information the majority of Down Syndrome babies are born to women under 40. But I should have known you were clueless when you used the word "major" genetic disorder. I have a daughter with Down Syndrome and she is in excellent health. Each person deserves a life of dignity and your brand of "fit only" reaks of Nazi overtones. Please stop commenting about things you know nothing about.
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by justbefree1 September 11, 2008 12:29 AM PDT
Katie,

You are a woman and a mother. I think that you handled this subject matter poorly. I think that the choice to have a baby with Down Syndrome is a very personal choice. Sara Palin wasn''t interview for this story. I think you could have covered the subject matter without using her as an example.

I support a woman''s right to choose to abort a baby she doesn''t want and to CHOOSE TO KEEP a baby she does want.

My husband has always felt that CBS had a political bias and I really felt that watching your newscast tonight.

I think that Sara Palin''s personal life has been given far more negative attention from the media that Obama/Biden''s.

Keep it real Katie.
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by petersemkiw September 11, 2008 12:57 AM PDT
There''s Something About Sarah.....
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by inverness84 September 11, 2008 2:59 AM PDT
Thank you for your report on Down Syndrome. I come from a family of physicians and always thought doctors knew everything until our daughter was born with DS 20 years ago. Thank you for pointing out that doctors are frequently the worst enemies of people with DS. Please note also the hypocrisy of doctors advising termination for fetuses with DS (judging them, like Hitler did, to be "lives unworthy of life") and then promoting the birth of infants with cerebral palsy (a potentially far more debilitating handicap than DS but one that cannot be detected prior to birth) through "designer" multiple births.

Physician: first do no harm.
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by cpm7 September 11, 2008 6:22 AM PDT
The TRUTH - It''s NOT a DIFFICULT DECISION!

This piece was surprising in how irresponsibly negatively biased it was. The negative statement of Ms. Couric about the "difficult choice", was followed by her statement that people with DS will never live independently, followed by a physician listing all the negative aspects of Down Syndrome as a "fait accompli" -- and the tenor was set. These pronouncements are specious - they have grains of truth but aren''t the whole truth. All of the medical issues are treatable. Many people with DS do live independently- & they actually bring MANY, MANY benefits to both society and the families that they join. Families with members who have DS enjoy greater unity, lower divorce rates, lower rates of violence. Societies benefit from the artistic, spiritual, and vocational talents of those with DS. Oh, and they don''t lie, cheat, and steal...

"A Difficult Choice"? B.S.! Regardless of the spin of this story== it WASN''T a difficult choice for the Palin''s, it wasn''t for my family, and it wasn''t for thousands of others.

Having a child with DS won''t be difficult decision either -- for those who are fully informed by more responsible journalism than this piece. Hint- look for sources without a political ax to grind.
Reply to this comment
by cpm7 September 11, 2008 6:23 AM PDT
The TRUTH - It''s NOT a DIFFICULT DECISION!

This piece was surprising in how irresponsibly negatively biased it was. The negative statement of Ms. Couric about the "difficult choice", was followed by her statement that people with DS will never live independently, followed by a physician listing all the negative aspects of Down Syndrome as a "fait accompli" -- and the tenor was set. These pronouncements are specious - they have grains of truth but aren''t the whole truth. All of the medical issues are treatable. Many people with DS do live independently- & they actually bring MANY, MANY benefits to both society and the families that they join. Families with members who have DS enjoy greater unity, lower divorce rates, lower rates of violence. Societies benefit from the artistic, spiritual, and vocational talents of those with DS. Oh, and they don''t lie, cheat, and steal...

"A Difficult Choice"? B.S.! Regardless of the spin of this story== it WASN''T a difficult choice for the Palin''s, it wasn''t for my family, and it wasn''t for thousands of others.

Having a child with DS won''t be difficult decision either -- for those who are fully informed by more responsible journalism than this piece. Hint- look for sources without a political ax to grind.
Reply to this comment
by cpm7 September 11, 2008 6:31 AM PDT
The TRUTH - It''s NOT a DIFFICULT DECISION!

This piece was surprising in how irresponsibly negatively biased it was. The negative statement of Ms. Couric about the "difficult choice", was followed by her statement that people with DS will never live independently, followed by a physician listing all the negative aspects of Down Syndrome as a "fait accompli" -- and the tenor was set.

These pronouncements are specious - they have grains of truth but aren''t the whole truth. All of the medical issues are treatable. Many people with DS do live independently- & they actually bring MANY, MANY benefits to both society and the families that they join. Families with members who have DS enjoy greater unity, lower divorce rates, lower rates of violence. Societies benefit from the artistic, spiritual, and vocational talents of those with DS. Oh, and they don''t lie, cheat, and steal...

"A Difficult Choice"? B.S.! Regardless of the spin of this story== it WASN''T a difficult choice for the Palin''s, it wasn''t for my family, and it wasn''t for thousands of others.

Having a child with DS won''t be difficult decision either -- for those who are fully informed by more responsible journalism than this piece. Hint- look for sources without a political ax to grind.
Reply to this comment
by cpm7 September 11, 2008 6:55 AM PDT
The TRUTH - It''s NOT a DIFFICULT DECISION!

This piece was surprising in how irresponsibly negatively biased it was. The negative statement of Ms. Couric about the "difficult choice", was followed by her statement that people with DS will never live independently, followed by a physician listing all the negative aspects of Down Syndrome as a "fait accompli" -- and the tenor was set.

These pronouncements are specious - they have grains of truth but aren''t the whole truth. All of the medical issues are treatable. Many people with DS do live independently- & they actually bring MANY, MANY benefits to both society and the families that they join. Families with members who have DS enjoy greater unity, lower divorce rates, lower rates of violence. Societies benefit from the artistic, spiritual, and vocational talents of those with DS. Oh, and they don''t lie, cheat, and steal...

"A Difficult Choice"? B.S.! Regardless of the spin of this story== it WASN''T a difficult choice for the Palin''s, it wasn''t for my family, and it wasn''t for thousands of others.

Having a child with DS won''t be difficult decision either -- for those who are fully informed by more responsible journalism than this piece. Hint- look for sources without a political ax to grind.
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by terria9 September 11, 2008 9:07 AM PDT
This notebook entry on Down syndrome is negative, inaccurate and out of date.

I demand a re-write.
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by wickerparkbo September 11, 2008 9:38 AM PDT
katie ... when are you going to express publically your justifiable anger in being so outrageously used and misrepresented by the mccain campaign in that offensive commercial?

john mccain''s approve that ad. do you?
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by lindadave1 September 11, 2008 10:09 AM PDT
Katie Couric! Shame on you! "Agonizing choice", "Hopes and dreams shattered". This is irresponsible reporting! Your words are what make expectant parents fear the sweet baby that is growing inside of their mother''s womb! My son who has Down syndrome (Yes, I knew prenatally)is the most beautiful person that I have ever been around. He brings peace, joy and love to those he meets. Isn''t that what our world needs!? Peace. Joy. Love.
Katie, you need to spend time with families who have children with Down syndrome. You will find the challenges are not with the child but with society and the systems that surround the child. Katie, I challege you to report on what can be done to accept and support people who have Down syndrome. There is a very good article that you can do a search for on the internet called "If People with Down Syndrome Ruled the World". You have the responsibility to make your wrong, right. When you educate yourself on Down syndrome you will find there is NEVER really a CHOICE to be made. Choice can be a very bad word and when it comes to ending life, it is the most evil of words.
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by dsadvocate-2009 September 11, 2008 10:42 AM PDT
That was a really bad piece...factually incorrect, biased and just blah...wasn''t she resigning a few months back? The ratings are already in the toilet, someone needs to flush.
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by joseph8221 September 11, 2008 11:37 AM PDT
Katie, you are mother, but you appeared moronic with your views
as to our feelings when we knew that our children in our wombs have down syndrome? The high rate of percentage of pregnacy being aborted coz of the fear of the unknown given by the doctors
in taking care of the children with special needs.

I knew that my son has down syndrome I did not go for abortion, otherwise it is plain and simple SELECTIVE PREGNACY!

aLL BECAUSE THE CHILD HAS SPECIAL NEEDS, WE HAVE TO ABORT THEM? dONT BE PART OF STUPIDITY!
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by joseph8221 September 11, 2008 11:41 AM PDT
Those who go for aborting their pregancy of children with down syndrome are committing selective pregnancy, all under the pretext of right of choice! Baloney!

The child life begins with themoment of conception. The child has intra uterine life. He is entitled to, as we have to give him the best in life, and get out and see the wonders of this world!

My son Joseph is ten years of age with down syndrome. He answers the phone in the morning whenever I call my wife.He is doing great in school.He brings priceless joy to us, and our community.
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by joseph8221 September 11, 2008 11:46 AM PDT
Katie, you have committed diservice to our children with down syndrome. why not feauture mothers with just delivered baby and those in pregnancy, and those kids in school, and working.
Your mind is still corrupted by your environment for these kids used to be called as mentally retarded-mongoloids! But recent advances in intervetion and care make them useful and productive members of our society; they can even vote!

Please, rectify your wrong, or we will boycott your program, too! Same with we are doing with Oprah!
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by joseph8221 September 11, 2008 11:48 AM PDT
Starting today, I will launch for boycott of your newscast.

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by maryland443 September 11, 2008 12:46 PM PDT
I object to the piece because, like many other stories in the media right now, it is actually giving unfair coverage (and subtle kudos) to Sarah Palin. Sure, she has a baby with Down Syndrome. But so what? Can we now have an equally complimentary story about Biden''s struggle after his family was killed in a car wreck, or specifically how "heroic" it is when people move on from major grief like he did? If we''re going to give Palin credit for something so arbitrary, let''s give Biden equal time for something similarly accidental. Or let''s have a pice on successful adult children of single parent homes, like Obama. Let''s be fair. (Or be a news organization that feels no need to fairly represent both sides.)

With that said, if Palin and McCain were elected, there would be nothing heroic about choosing to have a baby with Down syndrome, because every pregnancy would have to be brought to term. There would be no choice in the matter at all. You aren''t a hero if you had no choice.

And to put it bluntly -- we shouldn''t romanticize people with Down syndrome. Life is harder if you have Downs, or if a family member has it. Let''s not sugarcoat it.
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by dsmomnj September 11, 2008 1:19 PM PDT
This blog needs to be rewritten. A person with Down syndrome is not, unlike The doc from Albert Einstein College of Medicine claimed last night, relegated to a life of dependence in this day and age. Each person with Ds is unique, and many adults with Ds hold down jobs (and companies LOVE the dedication that people with developmental disabilities tend to show in the workforce), and some actually do live quite independently. That number is growing as a new generation of kids with Ds, who have been raised in loving homes and given proper education, become young adults.

Katie, your program NEEDS to do better justice to people with Ds. I know you''re planning other stories on Ds, too, and I sincerely hope that the Ds community will be heard loud and clear. PEOPLE WITH DOWN SYNDROME ARE CAPABLE PEOPLE, AND THEIR FAMILIES ACCEPT THEM FULLY. The medical community holds a strong bias against letting babies with Ds be born, and they look at our kids as needing to be "fixed." You come to my house and tell me what you think needs to be fixed about my daughter. You spend time with us, and see how "shattered" we are.
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by guamarcy September 11, 2008 1:57 PM PDT
I had two of my four children in my forties. When I was pregnant with my youngest, the blood screening indicated that my child might have Downs. I opted to have a amnio, not to abort the child but to plan to fly out of Guam before her birth so that my special needs baby would have access to the best medical care in California. Because I knew that there are inherent risks as a mother of "advanced maternal age" (alert on my file) and that a Downs baby often has other congenital conditions, I could not (airline rules) and should not (my concern for my baby) fly after my 7th month. Fortunately, I naturally delivered a healthy and beautiful baby girl on Guam on 2/15/97.

I tell my story because I have been puzzled since first hearing about Palin, how she could possibly have risked her baby by flying to Texas during the last month of her pregnancy with Trigg and why she hid the news that he would have Downs Syndrome from her children, notably Willow who independently recognized his condition after the birth.

I am also puzzled why Katie did not make any disclaimer last night about the McCain''s (re "lipstick on a pig" ad) unauthorized used of Katie''s clip re sexism in politics???
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by bethj3 September 11, 2008 2:00 PM PDT
On the program you stated that there were 400,000+ people in the U.S. with Down syndrome, and that 5000 babies with Down syndrome are born each year. These numbers seem to me to be mutually inconsistent - assuming a constant birth rate, that''s 80 years to get to 400,000, with NO deaths - yet even 25 years ago life expectancy for children with this syndrome was far lower than it is today. Although the number of annual births probably hasn''t been constant, even a much higher birth rate would have to be balanced against a higher death rate in making this calculation. Can someone tell me where the 400,000 estimate comes from?
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by ericdrexil September 11, 2008 3:22 PM PDT
Who has the right to proclaim a life worth living? My son is 19 and has challenges with many activities. He loves life. I love him. If I knew he would be in this condition I would do exactly as I have done. He is still learning. Wish I could say the same for you.
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by wcwr1 September 11, 2008 4:19 PM PDT
maryland443, electing the McCain-Palin ticket will not overturn Roe vs Wade. If only it were so.
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by wcwr1 September 11, 2008 4:21 PM PDT
God chooses. We should obey Her choices.
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by bjd4 September 11, 2008 5:37 PM PDT
Dear "Maryland443":

While I agree with you about equal coverage, who are YOU to say it''s harder for those living with Down syndrome or for their families?

While it may indeed be more challenging early on - and that depends on each situation - PLEASE DON''T GENERALIZE OUR FAMILIES INTO YOUR LITTLE BOX, HUH?
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by bjd4 September 11, 2008 5:40 PM PDT
Dear "Joseph8221"....

Re: your comment: "Why not feature mothers with just delivered babies and those in pregnancy, and those kids in school, and working."

I, TOO, WOULD LIKE TO SEE ON CBS - OR ANY OTHER NEWS STATION - A PANEL OF PARENTS OF CHILDREN OF ALL AGES WITH DS AND HAVE THEM GET OUR VIEWS DIRECTLY - THAT WOULD BE ABSOLUTELY ENLIGHTENING TO MANY!!!
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by q1234biteme September 11, 2008 7:02 PM PDT
isn''t she(Palin)anti-abortion? :x
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by cpm7 September 11, 2008 11:34 PM PDT
For a much more balanced piece on raising a child with Down Syndrome listen to this:

http://www.wnyc.org/shows/bl/episodes/2008/09/09/segments/108539
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by ttbear1 September 12, 2008 9:04 PM PDT
As a mother of a little boy with down syndrome--I just want to say how much of a blessing he has been to me and our family. Sure the news is heart-breaking--your dreams are shattered---until you see that sweet face and help them grow and learn---reaching the same milestones as other children---just a little later. He is the sweetest child--unconditional love for everyone--hugs and kisses--not ever being embarrassed of how much his parents LOVE him. New dreams are in place--because honestly--do typical children do all the things we want them to :)Children will do what is expected and encouraged---if we as parents do not expect our children to accomplish things they won''t. Children w/DS need to be encouraged and challenged--just like typically developing children.
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