Down Syndrome Information Exchange

Faith the Science Fair Winner

2009-03-18T23:17:00.002-05:00

a friend posted the following 'brag' to the DownSyndromeInfoExchange listserv:
Faith won honorable mention at the county wide science fair!!

First she had to win for her class, then the science teacher chose the 4th grade school wide winner, then her project went to the mall for county wide judging, there are 12 elementary schools.

She aptly named her project "Ice Age: The Meltdown", of course everything is a movie to her! She melted ice in no water, salt water, and plain water. She helped type up the board and cut them apart and glued them on. Plain water melted the fastest. Big sister, Joy and I resisted perfecting the project board!

She also did so well at the big awards ceremony. It was in the middle school cafeteria with lots of people. The crowds and noise are very hard for her, so she wore her headphones. When her name was called she walked by herself from the back of the room to the stage at the front. She stood up there with the other kids and came back to her seat when dismissed.

We are so very proud of her! Now when asked what she wants to be when she grows up, she says "a scientist!"
Paulette
posted by KathyR

ACTION ALERT

2009-03-03T19:39:00.002-06:00

This is an action alert from the NDSS, but anyone can call in…it is not just for people w/down syndrome..this bill has huge implications for individuals with disabilities and their families…it was just introduced last week. Please call your members of Congress..pass the message on to family, friends, neighbors, your church, etc..anyone can call in.
________________________________________
Call Your Members of Congress Today! Take Action!

Ask Them to Cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205)

The Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) was introduced last week in both the Senate and House. The ABLE Act will give individuals with Down syndrome and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities.

The ABLE Act will allow individuals with Down syndrome to create a disability savings account that would accrue interest tax-free. The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.

Asset development is one step towards improved economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving assets.

Talking Points to Call Your Senators and Representative:

I am calling to ask my [Senator/Representative] to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA).

The legislation encourages persons with disabilities to save in order to live an independent and meaningful life while reducing their dependency on public benefits.

This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay certain expenses, including: medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.

If your boss is interested in signing on as a cosponsor, please contact:
• o Bryn McDonough (202-224-6324) in Senator Robert Casey's office
• o Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office

If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at: http://capwiz.com/ndss/mlm/signup/
________________________________________

National Down Syndrome Society
666 Broadway, New York, NY 10012
Phone: (800) 221-4602; Fax: (212) 979-2873
Web site: http://www.ndss.org

NDSS National Policy Center
5505 Connecticut Avenue, N.W. # 239
Washington, DC 20015-2601
Phone: (800) 743-5657
e-mail: advocacy@ndss.org
________________________________________

2009-01-20T21:46:00.005-06:00

Jon and Company is a specialty clothing company that was started by Annette Liike, mother of Jon (6), who has Down syndrome. Annette was finding it difficult to find clothing for her son that fit well and encouraged independence in dressing, while remaining stylish. The clothing that was easy to put on was usually not very trend conscious, and the clothing that was trendy, was not very easy to put on. Annette realized that she was not alone, so she started her search for someone who could help her design a clothing line for individuals with Down syndrome, which promotes their individual dressing needs and upholds the styles of today. Annette discovered neighbor and friend Yvette Quigley, had a background in costume design and was very interested in designing garments to help kids become more independent. Both women quickly got to work on a clothing line that offers functional and affordable clothing made to fit people with Down syndrome and other disabilities. They offer closures that present ease in dressing for those who present challenges in dexterity, yet have considered a range of abilities by offering many choices on the clothing such as Velcro, magnetic snaps, elastic and buttons. To ensure the quality of our garments we have tested them on Jon our six year old model. In addition to his wearing the items to play they have been machine washed many times making sure that the garments will endure the stress that children just by their nature put on clothing. The result is affordable, stylish clothing that fits well and lasts until they outgrow them. Any questions that you have can be answered by calling Jon and Company at 248-624-7800. Special requests and custom orders are also available.

Two Articles...what a contrast in attitudes

2008-11-30T16:42:00.011-06:00

Minette Marrin has just written one of the most condescending/snarky articles (here) about people with Down syndrome that I have read in a long time. Her beef is with people who call the deliberate targeting of unborn babies with Down syndrome 'eugenics'...such an 'ugly' word, she says. So judgmental. Parents of kids with Down syndrome, she says, say that they have been blessed by their child, but Ms Marrin objects to that, because she feels condemned by their comments. Does anyone else see the irony here? She believes that 'eugenics' is an ugly word, yet she wholeheartedly endorses the abortion of babies based on a diagnosis of Down syndrome. If that isn't eugenics, what is? And if it is ok to abort a baby based on a diagnosis, why is it wrong to call it what it is?
She goes on to say that in her experience, a 'damaged baby equals a damaged family.'I beg to differ. Your experience is what you make it...from what I have seen, the vast majority of families have been changed for the better by the experience of having a family member with Ds. Many of those families have children with significant challenges, but the parents still feel blessed to have the child in their lives.
It always amazes me how people with no personal experience in raising a child w/Down syndrome feel qualified to tell us what it is 'really' like. How they are convinced that we must be either deluded or lying to actually believe that our childrens' lives are worthy, and how much better off everyone would be if we had simply done the 'right' thing and terminated our pregnancies.I am sorry to be so harsh in my comments, but I have had enough of people telling me that my son should not have been allowed to live. I am tired of people pretending that the act of 'termination' they are referring to so approvingly is just a 'choice', instead of the deliberate taking of another human's life. I am tired of people telling me that it is judgmental to use the word 'eugenics' when unborn babies are targeted for extinction based on a prenatal diagnosis of Down syndrome. And I am especially tired of the smug attitude that it is somehow morally superior to 'support a woman's right to choose' rather than to say, flat out, that the very act of abortion is immoral.

India Knight has written a great rebuttal to Minette's article. It was really refreshing to see how completely India exposed Minette's article for what it is: the musings of a cold-hearted, selfish individual frantically trying to convince her readers(and, I suspect, herself) that it is somehow morally superior to kill babies with disabilities rather than accept these children as a persons worthy of our love and respect.
India's article here:
posted by KathyR

Do People With Down syndrome Suffer?

2008-11-26T21:43:00.003-06:00

Kristy has an excellent new post about this on her blog, Mosaic Moments

Posted by KathyR

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

2008-11-26T09:10:00.003-06:00

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a "treatment" for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.

Other versions

* Traducción al español
* Deutsche Übersetzung
* Traduction française

We are a group of healthcare professionals, scientists and support organizations who care for and about people with Down syndrome. We wish to provide families with information about a proposed "treatment" for Down syndrome. We recognize that all parents wish to improve the lives of their children with Down syndrome and are interested in treatments, therapies and interventions that can help. We respect these wishes. At the same time, we are concerned that these "treatments" are potentially dangerous.

We are all aware of the advances that have been made in the basic science of memory and cognition in animal models of Down syndrome and are hopeful that these studies may lead to new ways to improve the lives of people who live with the condition.

Physicians and biomedical scientists evaluate potential interventions on the basis of safety and benefits to patients. As we describe below, the "treatments" that the Changing Minds Foundation recommends have not passed either test: there is no information whether these compounds are safe for children, especially young children. Furthermore, there is no evidence to support the claims for benefits that have been made.

Because we care about your children, we strongly urge families to consider this information when considering the claims for this "treatment".
The protocol

An organization called the Changing Minds Foundation is promoting a "new treatment for Down syndrome" that leads to "life changing" results. The "treatment" includes regular doses of Fluoxetine (Prozac), Dexmethylphenidate (Focalin XR) and Ginkgo biloba, Phosphatidylcholine, ‘Body Bio Balanced Oil’ and folinic acid. Some of these substances are associated with potential harmful side-effects. Some of these side-effects are of particular concern for people with Down syndrome and younger children.

Fluoxetine (Prozac) is used to treat depression, obsessive-compulsive disorder, bulimia nervosa and panic disorder. Dexmethylphenidate (Focalin XR) is used for the treatment of attention deficit and hyperactivity disorder (ADHD). Their use should be initiated and monitored by an appropriately qualified physician and should be limited to applications and treatments formally reviewed and approved by appropriate governmental and medical drug regulatory agencies.
Evidence of effects and safety

There is no scientific evidence to support the use of any of this protocol with people with Down syndrome of any age in order to improve memory or any other aspect of cognition. Nor is there any evidence that this protocol is safe for routine use with people who have Down syndrome.

The few studies referenced in support of this protocol are studies of mice. These mice have been engineered to carry extra copies of some genes similar to genes found on human chromosome 21. (People who have Down syndrome have an additional copy of this chromosome). These studies may or may not be good indicators of aspects of memory and learning for people who have Down syndrome. Studies in mice alone are not sufficient to support use of this (or any) protocol in children or adults with Down syndrome.

The Changing Minds Foundation promotional videos do not prove the claims of benefit from the protocol. While the people shown are clearly doing well, none of the individuals shown are functioning beyond the wide range seen in others with the syndrome. Claimed changes following ‘treatment’ could be the result of many factors. Only a controlled trial can give clear evidence of treatment effects.
Scientific progress

Scientific research has improved our understanding of Down syndrome considerably over the past 30 years. This has led to the better healthcare and education received by many people with Down syndrome today. Many scientists and organizations continue to work to improve our knowledge and understanding of effective ways to improve quality of life for people who live with Down syndrome.

Although the pace of further progress is often slow and this can be frustrating, only careful research and rigorous controlled trials can provide the evidence necessary to demonstrate that a therapy is useful and safe.
Further information
Ginkgo

Although bilobalide, a component of Ginkgo Biloba, has been shown to be a GABA antagonist, the activity has been tested only in isolated cells and in only one subtype of GABA receptors. No controlled studies have been done in animals or humans to establish safe doses, or to prove the claimed benefits.

* http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-ginkgo.html

Fluoxetine (Prozac)

The action of fluoxetine on the growth of new nerve cells seen in one part of the brain of Ts65Dn mice has not been replicated in humans. Published case reports suggest that medications like Prozac used in pregnancy can harm the fetus. The potential impact on developing minds of babies and young children is unknown. A general, or uncontrolled, increase in nerve cell growth is not necessarily a good thing, especially over long periods of time.

* http://www.nlm.nih.gov/medlineplus/druginfo/meds/a689006.html

Dexmethylphenidate (Focalin XR)

The use of stimulant medication should be carefully considered for children with unusual heart structures, which includes about half of children with Down syndrome. Again, use is not recommended for babies or very young children.

* http://www.nlm.nih.gov/medlineplus/druginfo/meds/a603014.html

Folinic acid

Folinic acid supplementation has been shown to have no significant effects for infants and children with Down syndrome on a range of developmental measures.

* http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-folate.html
* http://www.bmj.com/cgi/content/full/336/7644/594

‘Off label’ use

Families and healthcare professionals should understand that use of the protocol at this time is essentially experimental, with none of the benefits of a controlled trial. Monitoring for adverse effects would be the responsibility of the prescribing physician, with no one collecting that information to determine real risks. Similarly, positive effects would not be collected in a credible way that could be used by healthcare professionals to gauge the value of the treatments.

While there is no current evidence of the treatment's effectiveness for people with Down syndrome, there are significant risks of harm.
This statement is endorsed by the following scientists and clinicians:

* Roel Borstlap, Paediatrican n.p., Stichting Downsyndroom, The Netherlands.
* Sue Buckley OBE. Director of Science and Research, Down Syndrome Education International and Emeritus Professor of Developmental Disability, University of Portsmouth, UK.
* William I Cohen, MD. Developmental-Behavioral Pediatrician, Director, Down Syndrome Center of Western PA Children's Hospital of Pittsburgh of UPMC, Professor of Pediatrics and Psychiatry, University of Pittsburgh School of Medicine, USA.
* Sindoor S Desai, BDS, Cleveland, New York, USA.
* Jesús Flórez, MD, PhD. Professor of Pharmacology, University of Cantabria School of Medicine, Santander, Spain.
* Sallie Freeman, Ph.D. Professor Emeritus. Down Syndrome Clinic Advisor, Department of Human Genetics, Emory University School of Medicine, Georgia, USA.
* Edward J Goldson, MD. Pediatrician, The Children's Hospital, Aurora, Colorado, USA.
* Lilliam Gonzalez de Pijem, MD. Pediatric Endocrinologist. Puerto Rico Down Syndrome Association, San Juan, Puerto Rico.
* Joan E Guthrie Medlen, RD, LD. Vice President Down Syndrome Education USA, Director, Disability Compass, Publisher, Phronesis Publishing, Author, The Down Syndrome Nutrition Handbook.
* Rob Hanson, MD, PhD. Pediatric Cancer and Hematology Center, St. John's Mercy Medical Center, St. Louis, Missouri, USA.
* Michael M Harpold, PhD, Chief Executive Officer, Down Syndrome Research and Treatment Foundation, USA.
* Jacqueline London, Professor of Molecular and Pathological Biochemistry, University Paris-Diderot, Paris, France.
* Acisclo M Marxuach, MD. Fundación Puertorriqueña Síndrome Down, San Juan, Puerto Rico.
* Philip J Mattheis, MD. Associate Professor, Cincinnati Children's Hospital Medical Center, Ohio, USA.
* William C Mobley MD, PhD. Professor, Department of Neurology and Neurological Sciences and Director, Center for Research and Treatment of Down Syndrome, Stanford University, California, USA.
* David Patterson, PhD. Professor, Department of Biological Sciences, Eleanor Roosevelt Insitute, University of Denver, Colorado, USA.
* Alberto Rasore-Quartino, Professor, Unit of Neonatology, Galliera Hospital, Genoa, Italy.
* David S Smith, MD. Program Director, Down Syndrome Clinic of Wisconsin Children's Hospital, Wisconsin, USA.
* Dr Renaud Touraine, CHU-Hôpital Nord, Service de Génétique, Saint Etienne, France
* Jeannie Visootsak, MD, FAAP. Assistant Professor, Developmental-Behavioral Pediatrics, Department of Human Genetics & Pediatrics, Emory University School of Medicine, Georgia, USA.
* Patricia White, MD, Chair, Board of Directors, Down Syndrome Research and Treatment Foundation, USA.

This statement is endorsed by the following organizations:

* Association Francaise pour la Recherche sur la Trisomie 21, France.
* Association of Parents and Friends of Children with Down Syndrome, Prague, Czech Republic.
* Centrul de Resurse Sindrom Down, Bucharest, Romania.
* Deutsches Down-Syndrom InfoCenter, Hammerhöhe, Lauf, Germany.
* Down Syndrome Education International.
* Down Syndrome Education USA.
* Down Syndrome International.
* Down Syndrome New South Wales, Australia.
* Down Syndrome Research and Treatment Foundation, USA.
* Down Syndrome Research Foundation, Vancouver, Canada.
* European Down Syndrome Association.
* Fundación Iberoamericana Down21, Spain.
* Fundación Síndrome de Down de Cantabria, Spain.
* National Down Syndrome Congress, USA.
* National Down Syndrome Society, USA.
* Stichting Downsyndroom, The Netherlands.
* Trisomie 21 France.

Distribution of this statement

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome is licensed under a Creative Commons Attribution-No Derivative Works 3.0 Unported License. In summary, this means that you are free to share, copy, distribute and transmit this statement as long as you do not alter it. For any reuse or distribution, you must make clear to others these terms.
Posted by Carol

New DSRTF Research Innovation Grant

2008-11-26T08:42:00.001-06:00

The Down Syndrome Research and Treatment Foundation continues it’s commitment to funding the most cutting edge research to improve cognition with the recent announcement for a new $250,000 extension for 2008-2009 of the DSRTF Research Innovation Grant to researchers at Johns Hopkins University School of Medicine. This additional new grant funding will significantly extend and continue the research progress begun under the 2007-2008 DSRTF Research Innovation Grant. The Johns Hopkins Down Syndrome Research Group is now pursuing two promising avenues toward therapeutic approaches for Down syndrome.

“With this new DSRTF Research Innovation Grant extension, the DSRTF continues to execute a major paradigm-shift in Down syndrome research through promoting and assuring new collaborations, attraction of new world-class research talent and rapid response to nurture and fund major new discoveries,” says Dr. Michael Harpold , Chief Executive Officer of DSRTF. “The continued funding of these Johns Hopkins School of Medicine researchers through this significant new grant, now totaling $500,000, not only allows this promising research to advance the evaluation of potential new drugs, but also enhances the momentum for discovering additional new drug targets at an unprecedented level.”

The goal is clear – the identification of treatments aimed at improving learning, memory, speech and even the late in life neurological decline experienced by those with Down syndrome.

I want to thank all of our loyal supporters who make this critical research possible and to keep you advised as to how your generous donations are being put to work. To read more about the Johns Hopkins research, please click on the following link. DSTRF News

Thanks again and have a great Thanksgiving.

Jack Dean

DSRTF-NJ

25 McLean Blvd.

Paterson, NJ 07514

973-523-8630 x 101

jdean@powbat.com
Posted by Carol

Spotlight on Sam Sartoris

2008-11-05T19:03:00.003-06:00

Pontiac, Ill. -

October is Down Syndrome Awareness Month and if a Pontiac woman had her way she would have plenty to say in a public forum.
The woman is Mary Ann Sartoris and she is the mother of Sam Sartoris, who was born with Down syndrome.
"If I had a band box to stand on and tell the world something I would speak directly to physicians all over the world. Sam was born 15 years ago and I remember full-well what physicians told me before his birth," said Sartoris. "The only things the doctors and specialists told me was the negative and that I had the option to terminate the pregnancy.
"I don't know what specialists or any physicians tell their patients now but I hope it has a positive take," she said. "I can understand explaining what could be the negatives but give equal time to the positives. The positives absolutely outweigh the negatives."
She said when she speaks of her son the words joy, love and compassion come to mind.
"Sam sees everyone as equal. He loves everyone without exception. There are no differences between people because he finds joy in every person he meets," said Sartoris. "He has taught us all just how non-judgmental a person can be."
Sam recently celebrated his 15th birthday with a trip to Disney World. He said his favorite part of the amusement park was the parades. He said he loves all parades.
The Florida trip was taken as a way for Sam to celebrate and have some fun because his mother said he will be facing some additional heart surgeries for leaking heart valves.
"It seems impossible that 15 years have breezed by and Sam continues to be the light of our lives," she said. "To date Sam has undergone 22 surgeries yet he still loves to go see his doctors and the many nurses and staff who have been part of his life."
She said Sam is an amazing young man and as a mother she has cried endless tears over scary medical situations in the hospital and at home.
"I can say with certainty that the number of tears do not compare to the number of smiles he brings to me everyday. He continues to teach us new things about Down syndrome and life all the time," she said.
She said that early on Sam's doctors told her and her husband, Vince, that Sam would learn to walk and talk but it would take a little longer than their three other children.
"Sam took his first steps two days after his fourth birthday. He also, with the help of speech therapy, is talking better each day and he loves to go shopping and pay for items with his own money," said Sartoris.
Other favorites of Sam's are playing golf with his father and visiting zoos.
"Eastland Mall has a new putt-putt golf course and I am betting that will be something fun Sam and I can do during the upcoming winter when it is too cold for him to play outdoors,"she said.
She said another favorite thing of her son is keeping score for guys playing basketball and always wanting to get into the game.
"Sam learned to serve on the altar at St. Mary's by watching his brothers and learning from them. After his brothers went off to college Seth Lyons asked Sam to serve with him," she said. "Now that Seth has left for college Mark, Paul and Mike Panno and Max Eppel are serving with Sam and giving him a little help. This is just a small example of the wonderful young people we have in our community.
"We are so thankful and proud of the community we live in and all the help and love it has provided us. Sam would love to get to know everyone he comes in contact with. I truly believe the best way to learn about Down syndrome is to know someone and spend time with someone who was born with Down syndrome," she said.
Sartoris said her public forum on Down syndrome would also include telling everyone who would listen a special message from her heart.
"Take time to talk to your children about ways to show respect to all individuals with disabilities and explain that these special people are a very important part of God's plan. As we celebrate Down Syndrome Awareness Month and Respect Life Month, get to know a member of your community who was born with Down syndrome. You may be lucky enough to make a life-long friend."
link here

The McCain-Palin Press Release: Palin Commitment To Children With Special Needs

2008-10-24T11:09:00.003-05:00

For Immediate Release Contact: Press Office Friday, October 24, 2008 703-650-5550

The McCain-Palin Commitment To Children With Special Needs "To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House." -- Governor Sarah Palin, 9/4/08
Today, Governor Sarah Palin Outlined The McCain-Palin Commitment To Children With Special Needs. John McCain and Sarah Palin believe we must continue to challenge our education system to expand access to students with disabilities and provide them with a meaningful and high-quality education. Only 52 percent of students with disabilities graduate with a regular high school diploma, and 33 percent of students with disabilities drop out of the education system entirely. John McCain and Sarah Palin believe we can, and must, do better. A McCain-Palin Administration will do better, with a Vice President who understands the issue first-hand working to implement these major reforms.
The McCain-Palin Commitment: More Choice
· Allow Parents Of Students With Disabilities To Choose The Best School For Their Child. Parents should be able to send their child, especially a child with a disability, to a school of their choice so that they can get the best education possible. Using the Florida McKay scholarship as a model starting point, the McCain Administration will allow states to develop programs that allow parents to choose public or private schools, with federal funding following the child. The McCain-Palin team will also expect states to hold these schools accountable for their results. This proposal carries no cost beyond IDEA funding. States should be allowed to develop these programs with their federal IDEA funds and state and local funds.
· Make Explicit That Federal Funds Are Fully Portable. John McCain and Sarah Palin believe parents of students with disabilities should be allowed to use federal funds at any qualified school of their choice, public or private, religious or secular without forcing them into an administrative process. Currently, the district or the specific school can make such a recommendation. This initiative will allow the parents to make the choice and recommendations themselves. The McCain administration will work to make this a reality.
The McCain-Palin Commitment: Fully Fund The Individuals With Disabilities Education Act (IDEA)
· The McCain Administration Will Fully Fund The IDEA. Special Education has been a federal issue since 1975, when President Ford signed the law now known as the Individuals with Disabilities Education Act -- IDEA. While IDEA has been improved and strengthened over the years, its primary funding commitment has never been met.
· Full Federal Funding Of IDEA Is Estimated At $26 Billion Annually Compared To The Current Level Of $10.9 Billion. Using a phased-in increase of $3 billion annually in order to reach the full funding in five years will cost an additional $45 billion over five years. Full funding for IDEA means the federal government would pay 40 percent of the costs of the K-12 special education program.
The McCain-Palin Commitment: Reform And Refocus
· Provide Information And Assistance To Families Of Infants And Toddlers With Special Needs And Up-To-Date Information For Medical Professionals. The Parent Training and Information (PTI) Centers and Community Parent Information Centers (CPRCs) provide needed information and assistance. Unfortunately, to date, their focus has been parents of school age children; the McCain Administration will refocus IDEA so that the Centers must expand to parents with children ages 0-3. In addition, the McCain Administration will call for the Centers to provide access to better information for medical professionals about improvements in resources and the availability of assistance. In turn, these medical professionals will be able to provide better information to parents. This can be done with no additional cost beyond IDEA funding as it merely refocuses existing funding.
· Increase Funding For States To Improve Services To Families With Infants And Toddlers. Almost 80 percent of families with special needs children from birth through three years old serve their children at home under the IDEA program. Parents and families will benefit from improved programs and resources to maximize their child's potential in the early years under a McCain Administration. Currently, this part of IDEA is minimally funded. · Improve Services To Students With Disabilities In High Schools And Community Colleges. The McCain Administration will modernize the Vocational Rehabilitation Act to improve services to students with disabilities in high schools and community colleges. Require states to demonstrate proven outcomes for students with disabilities that lead to gainful employment when they graduate. When the Vocational Rehabilitation Act is modernized, funding should be refocused to incentivize proven outcomes for students with disabilities.

posted by KathyR

Remarks By Governor Sarah Palin On The McCain-Palin Commitment To Children With Special Needs

2008-10-24T10:51:00.004-05:00

videos of speech here and here
October 24, 2008

ARLINGTON, VA -- Governor Sarah Palin today delivered the following remarks as prepared for delivery in Pittsburgh, PA, at 9:00 a.m. ET:

Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I'm grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children's Hospital of Pittsburgh, Autism-link, the Children's Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives.

John McCain and I have talked about the missions he'd like me to focus on should I become vice president, and our nation's energy independence and government reform are among them. But there is another mission that's especially close to my heart, and that is to help families of children with special needs. And today, we'll talk about three policy proposals that are going to help us fulfill our country's commitment to these children: more choices for parents, fully funding IDEA, and efforts to reform and refocus.

Too often, even in our own day, children with special needs have been set apart and excluded. Too often, state and federal laws add to their challenges, instead of removing barriers and opening new paths of opportunity. Too often, they are made to feel that there is no place for them in the life of our country, that they don't count or have nothing to contribute. This attitude is a grave disservice to these beautiful children, to their families, and to our country -- and I will work to change it.

One of the most wonderful experiences in this campaign has been to see all the families of children with special needs who come out to rallies and events just like this. We have a bond there. We know that children with special needs inspire a special love. You bring your sons and daughters with you, because you are proud of them, as I am of my son.

My little fella sleeps during most of these rallies, even when they get pretty rowdy. He would be amazed to know how many folks come out to see him instead of me.

When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose.

And what's been confirmed in me is every child has something to contribute to the world, if we give them that chance. You know that there are the world's standards of perfection, and then there are God's, and these are the final measure. Every child is beautiful before God, and dear to Him for their own sake. And the truest measure of any society is how it treats those who are most vulnerable.

As for our baby boy, Trig, for Todd and me he is only more precious because he is vulnerable. In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed.

Of course, many other families are much further along a similar path -- including my best friend who happens to be my sister, Heather, and her 13-year old son Karcher, who has autism. Heather and I have worked on this for over a decade. Heather is an advocate for children with autism in Alaska. And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students.

Heather and I have been blessed with a large, strong family network. Our family helps make sure that Trig and Karcher have what they need. But not everyone is lucky enough to have that strong network of support. And the experiences of those millions of Americans point the way to better policy in the care of children with special needs.

One of the most common experiences is the struggle of parents to find the best and earliest care for their children. The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need. Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy.

Many of you parents here have been through the drill: You sit down with teachers and counselors to work out the IEP -- an individual education plan for your child. The school may be trying its best, but they're overstretched. They may keep telling you that your child is "progressing well," and no extra services are required. They keep telling you that -- but you know better.

You know that your children are not getting all of the help they need, at a time when they need it most. The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters. And when our public school system fails to render help and equal opportunity -- and even prevents parents from seeking it elsewhere that is unacceptable.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents'. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice -- public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective -- because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.

That's why John and I will direct the Department of Education to clarify the statute administratively. We'll make explicit that when state funds are portable, federal funds are fully portable. We're going to make sure parents have choices and children receive the education they deserve.

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act. To his great credit, it was President Gerald Ford who signed the legislation that became the IDEA -- establishing new standards of respect and inclusion for young Americans with disabilities. From that day to this, however, the federal government's obligations under the IDEA have not been adequately met. And portions of IDEA funding have actually decreased since 2005.

This is a matter of how we prioritize the money that we spend. We've got a three trillion dollar budget, and Congress spends some 18 billion dollars a year on earmarks for political pet projects. That's more than the shortfall to fully fund the IDEA. And where does a lot of that earmark money end up? It goes to projects having little or nothing to do with the public good -- things like fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark. In our administration, we're going to reform and refocus. We're going to get our federal priorities straight, and fulfill our country's commitment to give every child opportunity and hope in life.

For many parents of children with disabilities, the most valuable thing of all is information. Early identification of a cognitive or other disorder, especially autism, can make a life-changing difference. That's why we're going to strengthen NIH. We're going to work on long-term cures, and in the short-term, we're going to work on giving these families better information.

Once a condition is known, parents need the best and latest information on what to expect and how to respond. This service is also provided for under the IDEA. And we will make sure that every family has a place to go for support and medical guidance. The existing programs and community centers focus on school-age children -- overlooking the need for assistance before school-age.

But it would make a lot more sense for these centers to focus as well on infants and toddlers. This is not only a critical stage for diagnosis; it can also be a crucial time to prepare the family for all that may lie ahead. Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation. As Todd and I and Heather know, there's no substitute for the friendship of those who have been where we are now.

The IDEA is also intended to serve teens and young adults with special needs. And here, too, there is an opportunity to reform and extend the reach of federal support under the IDEA. By modernizing a current law, the Vocational Rehabilitation Act, we can better serve students with disabilities in our high schools and community colleges. This will require reform by the states as well. Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities. And the result we will expect is simple: that every special-needs student be given a chance to learn the skills to work, and enjoy the freedom to live independently if that is their choice.

As families across America know, the care of special-needs children requires long-term planning, and especially financial planning. A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort.

Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements. They fear that Senator Obama's tax increase will have serious and harmful consequences -- and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused.

Our opponent has an ideological commitment to higher taxes. And though he makes adjustments on his tax plan pronouncements seemingly by the day, his commitment to increase taxes remains the same. John McCain and I have just the opposite commitment. We intend to lower taxes, promote growth, and protect the earnings and savings of American families.

Not long ago, I spent some time at a place in Cleveland called the Michael T. George Center, a beautiful home for adults with Down Syndrome and other disabilities. I met Michael George, too, a boy of five with Down Syndrome. Michael is a healthy, sweet, joy-filled little man -- and I saw in him all the things I wish for Trig in just a few years.

Michael's parents, Tony and Kris George, are advocates for children with special needs in their community. They are thinking far ahead, in their own boy's life and in the lives of others. They named the center after their son. It's a public-private partnership. This welcoming place -- and so many others like it -- shows the good heart of America. They are places of hope. They are the works of people who believe that every life matters, everyone has something to contribute, and every child should have things to look forward to, and achievements to point to with pride and joy. As many of you know better than I, it can be a hard path, and yet all the more joyful and productive when the barriers are overcome.

John McCain and I have a vision in which every child is loved and cherished, and that is the spirit I want to bring to Washington. To the families and caregivers of special-needs children all across this country, I do have a message: For years, you sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Thank you all, and God bless you."

added by KathyR

new advocacy group: International Down Syndrome Coalition for Life

2008-10-23T16:28:00.009-05:00

I am very pleased to share the following news with you all: Diane Grover (Hidden Treasures the Trisomy 21 Journey and Erin and Mary Ellen's Excellent Adventures)
has started a new, pro-life Ds advocacy group.

Diane wrote: Here's what I said to the NDSC:

"I want to share a new organization with you. It is called the
International Down Syndrome Coaltion For Life. We are a group that
formed out of a need for those of us in the Ds community, who are pro
life, to have a voice.
We greatly respect that you all can not take a stance on this
issue, and we support you in that decision. In response, we have
formed a coalition of parents, professionals, and physicians who are
pro life, who do want to tell the world that all life is precious,
including our kids!
We are non partison and non religious. Our common threads are
that we are part of the ds community and we promote the dignity and
respect for all life.
We just thought you may like to know this is available to others
who might want to know it is out there. We hope to be able to be a
voice from a pro life perspective."

The NDSC is supportive of our decision to form, and I am glad.
Hopefully they will encourage those who call them about this issue to
contact us. We are excited about this new venture, and we hope that
if anyone is interested in helping us, they will contact us. God
bless. Diane
International Down Syndrome Coalition for Life

If you are interested in becoming a member or helping out in any capacity, just go to the website to send a message.
Thanks
KathyR

Makin' Waves

2008-10-22T19:48:00.017-05:00

Last January,some teens and young adults from my local support group were invited to sing the choruses for a new CD that Leonardo was making...as you can see, they had a great time. My son Danny wasn't an official member of the chorus, but he had fun "playing" his guitar and singing backup (ok, the mic wasn't turned on....but he thought he was a rock star anyway;-)

The CD, Makin' Waves, was released yesterday in time to help celebrate Down Syndrome Awareness Month.
To order the CD, go here:http://www.leonardomusic.com/index.cfm
Here's more information about Leonardo:
Hello Friends,

Leonardo here, Parents’ Choice Award winning kids/family musician announcing the release of my new CD Makin’ Waves. It features a chorus of youths from the South Bend, IN area DS group, including my brother Mario, singing along with me!

I am reaching out to DS groups nationwide to get the word out and have included a Press Release below if you would like to pass it on to members or include it in your newsletter. (feel free to edit). Even from the beginning, this project started “makin’ waves” when a local TV news crew filmed an amazing story about the recording process. See my website for clip.

SPRING TOUR: March is Developmental Disabilities Awareness month, and the end of winter, so why not hit the road to raise awareness and bring a concert/dance party to local communities nationwide. If we have met at conferences or Buddy Walks (I performed at 6 this year!) then you know what I do. I mentioned the idea at my booth at this years NDSCC conference in Boston and had very positive responses, especially from Texas and New England!

My visits can be a family night performance, classroom visit, library event, backyard bash…anything goes. I have set up a forum on my website to make the planning and communication easier..feel free to contact me directly with questions. And if we can’t fit it all into March I’ll just keep traveling. I really hope this will happen. I know I will be in the KS/OK area in early Feb.

Thank you very much!
Leonardo Biciunas(click here for Leonardo's website

312-399-5124

Shifting Perspectives

2008-10-21T21:15:00.004-05:00

In the catalogue to this show Carol Boys, the Chief Executive of the DSA
says:

“Surprisingly there are still a number of myths to be dispelled about Down’s syndrome and even now I am still asked the question: ‘Does Down’s syndrome exist in every race’?”
more information at the link below...very interesting stories from families from all parts of the world, different faiths, etc.
Rest of article here:

Football Legend Would Pick His Son with Down Syndrome Over ‘Normal’ Child

2008-10-21T20:15:00.002-05:00

CNSNews.com) – Legendary football coach Gene Stallings made history as the youngest college coach at the helm of his alma mater, Texas A&M, and a perfect 12-0 season during his reign at the University of Alabama. But he says raising his son Johnny was his greatest reward.
“My life wouldn’t have been nearly as rich without Johnny, no question about it,” Stallings told CNSNews.com of his son, who was born with Down syndrome in 1962.
rest of article and pictures here:

Gift of Faith

2008-10-17T18:08:00.006-05:00

by Paulette Beurrier, as told to Ava Pennington

"Oh, no! That can’t be right!” I stared, disbelieving, as the test strip turned blue.

I had spent my life trying to follow God’s rules, being a good wife to my husband Jim, and a good mother to Joy and Tim. I attended church every Sunday, and volunteered in the nursery. But when I needed Him most, it seemed God had failed me.

Menopause or Morning Sickness?
By the time my two children were teenagers, I looked forward to new paths of serving God. My high-school kids didn’t need me as much, and after years of volunteering with children, I considered teaching adults, writing, a prayer ministry … so many options. Finally, I could serve God in a capacity that didn’t involve the title “Mom.”

That summer I felt closer to God than ever.

A few months later, physical changes at age 42 fueled suspicions of the onset of menopause. After three months of morning sickness and fatigue, I faced reality. I had expected to be diagnosed with hot flashes. Instead, I was diagnosed with a high-risk pregnancy.

I could reach only one conclusion: God was punishing me. I sought validation from friends. What they called encouragement (“We’ll pray for you,” “Eventually you’ll see God’s will in this”) I found annoying. No one commiserated with my irritation at God’s timing. In fact, everyone else viewed this turn of events as a blessing.

Life or Death?
Although unhappy about my pregnancy, I never considered other options. Even Jim immediately understood that this baby was a gift from God. We needed to accept her, no matter what. A battery of tests, therefore, seemed unnecessary, despite my age. The birthing center, however, refused to proceed without a “normal” amniocentesis. The results arrived by telephone, blunt and to the point: “The baby is a girl. Unfortunately, she has Down Syndrome.”

That afternoon we sat with the midwife at the Women’s Center. Knowing she was a Christian didn’t make her words any easier to hear. “I know you’re not interested, but I’m required to offer termination.”

I can’t begin to describe my feelings as I sat there with a 28-week-old baby growing inside me, feeling her move and kick, knowing she had everything she needed to live, and yet hearing her “termination” discussed — a euphemism for killing my baby.

The midwife reassured us that our child would be able to grow and develop; she could have her own future, and that future could include living on her own.

The termination offer marked the low point of my pregnancy. I have never gotten over the irony that once you say “no” to termination, the medical community goes into overdrive to protect a high-risk pregnancy.

Interventions and Complications
Faith entered our world weighing three pounds via an emergency Cesarean section. I strained to hear her first cry — it sounded more like the mew of a baby kitten. She spent her first five weeks in the hospital.

Physical and speech therapy began soon after her homecoming. Physical therapy strengthened weak muscle tone, teaching her how to roll over and how to hold her head up. Mouth exercises helped her eat, correcting a weak suck and preventing food from dribbling out of her mouth. Faith also had a heart problem requiring two surgeries in her first eight months.

A “normal” life — if there is such a thing — had been torn from me. I felt ill-prepared for what replaced it. I needed to learn so much. How would we pay the medical bills? What did “early intervention therapy” mean? When the experts disagreed, how would I know what my baby needed? I became an amateur cardiologist, physical therapist, speech therapist and nutritional therapist overnight.

It seemed the God I loved and served had turned on me. He had failed to protect my unborn child from an extra chromosome that permanently labels her “disabled.” Angry with God, I experienced a huge spiritual deficit. I stopped going to church. I felt spiritually empty.

But God knew I couldn’t just walk away. I stayed in a mom’s prayer group. Even though I refused to talk to God, I asked other people to pray for Faith. Anger with God consumed me, but I thought good Christian women didn’t say those things. The stigma of publicly declaring that God had failed me quickly passed, however, after I first spoke the words and realized I wouldn’t be hit by lightning. God was big enough to handle my anger.

Things moved from bad to worse by the time Faith turned 3 years old. The federal program paying for her therapies ended. The public school’s developmentally-delayed program arranged to take over, but lacked the resources to meet Faith’s needs. Medical deductibles ate up the little we had set aside for Joy’s education. Then Jim lost his job after more than 26 years. Our health insurance vanished.

Why Me?
I shook my spiritual fist at God. How much more did He think we could handle? I thought I had Him pegged.

But then ... Medicaid covered Faith’s therapies. She received free health insurance. Joy’s college provided a full scholarship, based on family income. Jim found a better job than the one he lost. God showed us, over and over again, that no matter what the circumstances He never lets go of His children.

My relationship with God is much more transparent. “Churchianity” has been stripped away. I cry out to Him in honest emotion on a daily basis, aware that I cannot handle the responsibility He has entrusted to me. The best thing I can do is simply admit that I can’t handle it, but God can … and does … and will.

Tiny, three-pound baby Faith pushed her way into our hearts 10 years ago. She belongs to us — on loan from God. It doesn’t matter what our life was like before she arrived. What matters most is that she’s here, she’s a treasured part of our family, and we love her.

For the first three years of Faith’s life, I asked, “Why me?” I thought God was punishing me, but I couldn’t have been more wrong. He wasn’t punishing me. He was — and is — entrusting me with the precious gift of Faith.

How Can Obama Lead a People, if He Can't Recognize a Person?

2008-10-15T21:48:00.005-05:00

As "Mama" says, "How can Obama lead a people, if he can't recognize a person?
from "Mama Says" blogspot:
http://milehimama.blogspot.com/2008/09/obama-campaign-sign-sharin-love.html

Eugenic Abortion’: With Pre-Natal Testing, 9 in 10 Down Syndrome Babies Aborted

2008-10-13T22:15:00.002-05:00

Penny Starr, of CNS News, writes:
"One survey of 499 primary care physicians treating women carrying these babies, however, indicated that only 4 percent actively encourage women to bring Down syndrome babies to term."

"Dr. Will Johnston, president of Canadian Physicians for Life, reacted to ACOG’s pre-natal testing endorsement as another step toward eugenics.

“The progress of eugenic abortion into the heart of our society is a classic example of “mission creep,’ ” Johnson said in an article posted on the group’s Web site in February 2007. “In the 1960s, we were told that legal abortion would be a rare tragic act in cases of exceptional hardship. In the ‘70s abortion began to be both decried and accepted as birth control. In the ‘80s respected geneticists pointed out that it was cheaper to hunt for and abort Down’s babies than to raise them. By the ‘90s that observation had been widely put into action. Now we are refining and extending our eugenic vision, with new tests and abortion as our central tools.”
the rest of the article is here:
http://www.cnsnews.com/public/content/article.aspx?RsrcID=37421

The Trig Palin Effect :An interview with Ann Robertson in the Washington Times

2008-10-12T18:38:00.006-05:00

Sunday, October 12, 2008
ALLOTT: The Trig Palin effect
Daniel Allott
COMMENTARY:

Sarah Palin is not the only one. Right now 400,000 mothers are going
through the same experiences every day - the simple joys, the
profound challenges, the unexpected blessings. Ann Robertson is one
of them. Like Mrs. Palin, Mrs. Robertson recently gave birth to a
child with Down syndrome.

When Mrs. Robertson heard Mrs. Palin was selected as the Republican
Party's nominee for vice president, her emotions jumped quickly,
from surprise, to joy, to tears. "Whether or not people are going to
vote for her, we [mothers of children with DS] all were excited,"
she said.

October is National Down Syndrome Awareness month. But nothing has
done as much recently to raise the public's awareness of Down
syndrome as events a month earlier. Alaska Gov. Sarah Palin's
political rise has placed the glaring spotlight of the media on the
entire Palin family, and not least on its youngest member, 6-month-
old Trig, who was born with Down syndrome.

Mrs. Palin's emergence has also cast a soft, revealing light on a
hitherto neglected issue: Down syndrome abortions. America's
epidemic of Down syndrome abortions disregards not only the sanctity
of human life but also the profound contributions that persons with
Down syndrome offer to the lives of those they touch.

Increasingly sophisticated prenatal genetic screening (involving
sonograms and blood tests) can detect Down syndrome as early as the
first trimester of pregnancy. These tests - what George F. Will has
called "search and destroy mission*" - have helped produce an up to
90 percent abortion rate for children with Down syndrome.

This horrendously high abortion rate is due in part to a medical
establishment with a decidedly pro-abortion prejudice against babies
with disabilities. Parents informed their child will be born with a
disability are often shown pitiful videos of the challenges of
rearing disabled children after they hear the "bad news" from
doctors.

When I sat down with Ms. Robertson, she told me her experiences with
the medical community were "mixed." Eschewing invasive pre-natal
tests for Down syndrome, Ann first learned her daughter, Bonnie, had
the condition immediately after giving birth in a Fairfax County,
Va., hospital. The first words of a member of the delivering staff
were, "Did you get a blood test?"

Mrs. Robertson said her nurses were very supportive. Many told her
what a blessing Bonnie was, and some even visited her on their free
time to offer encouragement. But the neonatal pediatrician and
genetic counselor gave her the feeling that it was, in Ann's
words, "all my fault. The attitude was, 'you didn't deal with it
when you could have, so you have to deal with it now.' "

Such negativity is hardly unique. Numerous academic studies have
shown physicians are overwhelmingly negative in communicating
prenatal and post-natal diagnoses of Down syndrome. As Brian Skotko,
a physician at Children's hospital Boston, Boston Medical, wrote in
a study published in Pediatrics, "Doctors have gotten better over
time, but it's been a very slow change, and they've really gone from
terrible to just bad."

When she heard about Bonnie's condition, Ann felt "pretty scared at
first." But her fears were rooted in not knowing what to expect. "I
couldn't tell you the last time I had seen a child with Down
syndrome before Bonnie was born," Mrs. Robertson recalled. "The
sadness came from the unknown."

Fear of the unknown is precisely what legislators are attempting to
alleviate with a new federal law. The Prenatally and Postnatally
Diagnosed Conditions Awareness Act would require that families who
receive a diagnosis of Down syndrome or other genetic condition be
provided with up-to-date information about the nature of the
condition - including the positive aspects of raising a child with a
disability and connection with support services and networks that
could offer help.

Co-sponsored by Sens. Sam Brownback, Kansas Republican, and Edward
Kennedy, Massachusetts Democrat, the legislation would also create
of a national registry of families willing to adopt children with
genetic conditions. In late September, Congress passed the
Prenatally and Postnatally Diagnosed Conditions Awareness Act. It
now heads to the president's desk to become law.

In Ann's case, after a few weeks of trepidation following Bonnie's
birth, she decided in a single moment "That's it! No more tears, no
more grieving." Reassured by a pro-life doctor, who told her that "a
child is a child no matter what condition they come out in," her
supportive husband, Brian, and her Catholic faith, Ann chose to
accept Bonnie unconditionally, to love her the way she is and to
embrace the challenges.

Many women choose to abort unborn children with developmental
disabilities. But for Ann, the only choice was whether she would
accept and love the child she had been given by God. "Life was
already chosen," Ann told me. "My choice was love and acceptance. I
wasted time grieving for the child I didn't have instead of
accepting the child God gave me."

Ann and Brian have been transformed since Bonnie came into their
lives. "We don't take anything for granted. Every little thing
becomes great and joyful." They have learned not to focus on the
world's idea of accomplishment. "What's important," said Ann, "is
that this is a child with dignity whose every single accomplishment,
from the small things to the large things, is celebrated because we
know what it took for our child to do it."

Bonnie has helped Ann understand "what human dignity is all about"
and taught her that "being vulnerable is not a bad thing. That being
dependent is not a bad thing." In a world that hates dependency and
shuns vulnerability, people with Down syndrome, Ann believes, are "a
wake-up call to our consciences."

As our conversation returned to the Palins, Mrs. Robertson
recalled, "When [Sarah Palin] mentioned special needs families in
her [Republican Convention] speech, I knew she was looking at me,
and was talking to us personally. It was like a sigh of relief mixed
with gratitude that finally someone recognizes we exist."

Daniel Allott is senior writer at American Values, a Washington,
D.C., area public policy organization. He is a former community
support provider for persons with developmental disabilities.
http://www.washingtontimes.com/news/2008/oct/12/the-trig-palin-effect
__._,_.___

Governor Palin's remarks about her son, Trig, and the culture of life

2008-10-12T18:33:00.005-05:00

Remarks at Johnstown, PA rally on Oct.12,2008

"In this same spirit, as defenders of the culture of life, John
McCain and I believe in the goodness and potential of every innocent
life. I believe the truest measure of any society is how it treats
those who are least able to defend and speak for themselves. And
who is more vulnerable, or more innocent, than a child?

When I learned that my son Trig would have special needs, I had to
prepare my heart for the challenges to come. At first I was scared,
and Todd and I had to ask for strength and understanding. But I can
tell you a few things I've learned already.

Yes, every innocent life matters. Everyone belongs in the circle of
protection. Every child has something to contribute to the world,
if we give them that chance. There are the world's standards of
perfection … and then there are God's, and these are the final
measure. Every child is beautiful before God, and dear to Him for
their own sake.

As for our beautiful baby boy, for Todd and me, he is only more
precious because he is vulnerable. In some ways, I think we stand
to learn more from him than he does from us. When we hold Trig and
care for him, we don't feel scared anymore. We feel blessed.

It's hard to think of many issues that could possibly be more
important than who is protected in law and who isn't – who is
granted life and who is denied it. So when our opponent, Senator
Obama, speaks about questions of life, I listen very carefully.

I listened when he defended his unconditional support for unlimited
abortions. He said that a woman shouldn't have to be – quote –
"punished with a baby." He said that right here in Johnstown –
"punished with a baby" – and it's about time we called him on it.
The more I hear from Senator Obama, the more I understand why he is
so vague and evasive on the subject. Americans need to see his
record for what it is. It's not negative or mean-spirited to talk
to about his record. Whatever party you belong to, there are facts
you need to know.

Senator Obama has voted against bills to end partial-birth
abortion. In the Illinois Senate, a bipartisan majority passed
legislation against that practice. Senator Obama opposed that
bill. He voted against it in committee, and voted "present" on the
Senate floor. In that legislature, "present" is how you vote when
you're against something, but don't want to be held to account.

Senator Daniel Patrick Moynihan, a Democrat, described partial-birth
abortion as "too close to infanticide." Barack Obama thinks it's a
constitutional right, but he is wrong.

Most troubling, as a state senator, Barack Obama wouldn't even stand
up for the rights of infants born alive during an abortion. These
infants – often babies with special needs – are simply left to die.

In 2002, Congress unanimously passed a federal law to require
medical care for those babies who survive an abortion. They're
living, breathing babies, but Senator Obama describes them as "pre-
viable." This merciful law was called the Born Alive Infants
Protection Act. Illinois had a version of the same law. Obama
voted against it.

Asked about this vote, Senator Obama assured a reporter that he'd
have voted "yes" on that bill if it had contained language similar
to the federal version of the Born Alive Act. There's just one
little problem with that story: the language of both the state and
federal bills was identical.

In short, Senator Obama is a politician who has long since left
behind even the middle ground on the issue of life. He has sided
with those who won't even protect a child born alive. And this
exposes the emptiness of his promises to move beyond the "old
politics."

In both parties, Americans have many concerns to be weighed in the
votes they cast on November fourth. In times like these, with wars
and a financial crisis, it's easy to forget even as deep and abiding
a concern as the right to life. And it seems our opponent hopes
that you will forget. Like so much else in his agenda, he hopes you
won't notice how radical his ideas and record are until it's too
late.

But let there be no misunderstanding about the stakes.

A vote for Barack Obama is a vote for activist courts that will
continue to smother the open and democratic debate we need on this
issue, at both the state and federal level. A vote for Barack Obama
would give the ultimate power over the issue of life to a politician
who has never once done anything to protect the unborn. As Senator
Obama told Pastor Rick Warren, it's above his pay grade.

For a candidate who talks so often about "hope," he offers no hope
at all in meeting this great challenge to the conscience of
America. There is a growing consensus in our country that we can
overcome narrow partisanship on this issue, and bring all the
resources of a generous country to the aid of both women in need and
the child waiting to be born. We need more of the compassion and
idealism that our opponent's own party, at its best, once stood
for. We need the clarity and conviction of leaders like the late
Governor Bob Casey.

He represented a humanity that speaks to all of us – no matter what
our party, our background, our faith, or our gender. And no matter
your position on this sensitive subject, I hope that spirit will
guide you on Election Day. I ask you to vote for McCain-Palin on
the November fourth, and help us to bring this country together in
the rational discussion of compassion and life."
(Posted to DSIE listserv by Ann Robertson)
Kathy

The Retard Speech

2008-10-09T11:23:00.001-05:00

The Retard Speech

I want to tell you a quick story before I start. I was
walking through hallways, not minding my own business, listening to
the conversations around me. As I passed the front door on my way to
my English classroom, I heard the dialogue between two friends
nearby. For reasons of privacy, I would rather not give away their
race or gender. So the one girl leans to the other, pointing to the
back of a young man washing the glass panes of the front door, and
says, "Oh my gaw! I think it is so cute that our school brings in
the black kids from around the district to wash our windows!" The
other girl looked up, widened her slanted Asian eyes and called to
the window washer, easily loud enough for him to hear, "Hey, Negro!
You missed a spot!" The young man did not turn around. The first
girl smiled a bland smile that all white girls - hell, all white
people - have and walked on. A group of Mexicans stood by and
laughed that high pitch laugh that all of them have.
So now it's your turn. What do you think the black window
washer did? What would you do in that situation? Do you think he
turned and calmly explained the fallacies of racism and showed the
girls the error of their way? That's the one thing that makes
racism, or any discrimination, less powerful in my mind. No matter
how biased or bigoted a comment or action may be, the guy can turn
around and explain why racism is wrong and, if worst comes to worst,
punch em in the face. Discrimination against those who can defend
themselves, obviously, cannot survive. What would be far worse is if
we discriminated against those who cannot defend themselves.
What then, could be worse than racism? Look around you and
thank God that we don't live in a world that discriminates and
despises those who cannot defend themselves. Thank God that every
one of us in this room, in this school hates racism and sexism and by
that logic discrimination in general. Thank God that every one in
this institution is dedicated to the ideal of mutual respect and love
for our fellow human beings. Then pinch yourself for living in a
dream. Then pinch the hypocrites sitting next to you. Then pinch
the hypocrite that is you. Pinch yourself once for each time you
have looked at one of your fellow human beings with a mental handicap
and laughed. Pinch yourself for each and every time you denounced
discrimination only to turn and hate those around you without the
ability to defend themselves, the only ones around you without the
ability to defend themselves. Pinch yourself for each time you have
called someone else a "retard".
If you have been wondering about my opening story, I'll tell
you that it didn't happen, not as I described it. Can you guess what
I changed? No, it wasn't the focused hate on one person, and no it
wasn't the slanted Asian eyes or cookie cutter features white people
have or that shrill Hispanic hyena laugh (yeah, it hurts when people
make assumptions about your person and use them against you doesn't
it?). The girl didn't say "hey Negro." There was no black person.
It was a mentally handicapped boy washing the windows. It was "Hey
retard." I removed the word retard. I removed the word that
destroys the dignity of our most innocent. I removed the single most
hateful word in the entire English language.
I don't understand why we use the word; I don't think I ever will.
In such an era of political correctness, why is it that retard is
still ok? Why do we allow it? Why don't we stop using the word?
Maybe students can't handle stopping- I hope that offends you
students, it was meant to - but I don't think the adults, here can
either. Students, look at your teacher, look at every member of this
faculty. I am willing to bet that every one of them would throw a
fit if they heard the word faggot or nigger - hell the word Negro -
used in their classroom. But how many of them would raise a finger
against the word retard? How many of them have? Teachers, feel free
to raise your hand or call attention to yourself through some other
means if you have. That's what I thought. Clearly, this obviously
isn't a problem contained within our age group.
So why am I doing this? Why do I risk being misunderstood
and resented by this school's student body and staff? Because I know
how much you can learn from people, all people, even - no, not even,
especially - the mentally handicapped. I know this because every
morning I wake up and I come downstairs and I sit across from my
sister, quietly eating her cheerio's. And as I sit down she sets her
spoon down on the table and she looks at me, her strawberry blonde
hair hanging over her freckled face almost completely hides the
question mark shaped scar above her ear from her brain surgery two
Christmases ago. She looks at me and she smiles. She has a
beautiful smile; it lights up her face. Her two front teeth are
faintly stained from the years of intense epilepsy medication but I
don't notice that anymore. I lean over to her and say, "Good
morning, Olivia." She stares at me for a moment and says
quickly, "Good morning, Soeren," and goes back to her cheerio's. I
sit there for a minute, thinking about what to say. "What are you
going to do at school today, Olivia?" She looks up again. "Gonna
see Mista Bee!" she replies loudly, hugging herself slightly and
looking up. Mr. B. is her gym teacher and perhaps her favorite man
outside of our family on the entire planet and Olivia is thoroughly
convinced that she will be having gym class every day of the week. I
like to view it as wishful thinking. She finishes her cheerio's and
grabs her favorite blue backpack and waits for her bus driver, Miss
Debbie, who, like clockwork, arrives at our house at exactly
7'o'clock each morning. She gives me a quick hug goodbye and runs
excitedly to the bus, ecstatic for another day of school.
And I watch the bus disappear around the turn and I can't help but
remember the jokes. The short bus. The retard rocket. No matter
what she does, no matter how much she loves those around her, she
will always be the butt of some immature kid's joke. She will always
be the butt of some mature kid's joke. She will always be the butt
of some "adult"'s joke. By no fault of her own, she will spend her
entire life being stared at and judged. Despite the fact that she
will never hate, never judge, never make fun of, never hurt, she will
never be accepted. That's why I'm doing this. I'm doing this
because I don't think you understand how much you hurt others when
you hate. And maybe you don't realize that you hate. But that's
what is; your pre-emptive dismissal of them, your dehumanization of
them, your mockery of them, it's nothing but another form of hate.
It's more hateful than racism, more hateful than sexism, more hateful
than anything. I'm doing this so that each and every one of you,
student or teacher, thinks before the next time you use the
word "retard", before the next time you shrug off someone else's use
of the word "retard". Think of the people you hurt, both the
mentally handicapped and those who love them. If you have to, think
of my sister. Think about how she can find more happiness in the
blowing of a bubble and watching it float away than most of will in
our entire lives. Think about how she will always love everyone
unconditionally. Think about how she will never hate. Then think
about which one of you is "retarded".
Maybe this has become more of an issue today because society is
changing, slowly, to be sure, but changing nonetheless. The mentally
handicapped aren't being locked in their family's basement anymore.
The mentally handicapped aren't rotting like criminals in
institutions. Our fellow human beings are walking among us,
attending school with us, entering the work force with us, asking for
nothing but acceptance, giving nothing but love. As we become more
accepting and less hateful, more and more handicapped individuals
will finally be able to participate in the society that has shunned
them for so long. You will see more of them working in places you
go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than
anything, one of these people that you see will be my sister.
I want to leave you with one last thought. I didn't ask to have a
mentally handicapped sister. She didn't choose to be mentally
handicapped. But I wouldn't trade it for anything. I have learned
infinitely more from her simple words and love than I have from any
classroom of "higher education". I only hope that, one-day, each of
you will open your hearts enough to experience true unconditional
love, because that is all any of them want to give. I hope that,
someday, someone will love you as much as Olivia loves me. I hope
that, someday, you will love somebody as much as I love her. I love
you, Olivia.

Soeren Palumbo

What to say

2008-10-07T21:26:00.000-05:00

Ok, we have ideas posted about what *not* to say...how about what you think people *should* say when talking to parents about their child with Ds?
What helped you when your child was born?
What do you wish had been said?
What helps you now, as your child gets older?
This is your chance to educate the world;-)
(well, maybe not the world..this is just a small blog;-) but it's another way to get your message out there, so post away, please.
10/8 a parent said:"The best thing someone said to me was, 'Rest assured, she will give you more joy than heartache.'"

Kathy

Compassion Deficit Syndrome

2008-10-07T20:54:00.000-05:00

As Carol pointed out, some in the media seem to have an unusual way of commemorating Down Syndrome Awareness Month. A few years ago, I wrote the following essay in response to yet another article about that year's version of a "new and improved" prenatal test for Down syndrome:

Compassion Deficit Syndrome

CDS Identified as Factor in Death of Millions
By Kathy Ratkiewicz

People who suffer from the disorder known as "compassion deficit syndrome"(CDS), which affects a great many individuals in our society, and has been a decisive factor in the death of millions, tend to have jaded world-views.

Instead of seeing children with Down syndrome as beautiful little people with almond-shaped eyes and winning smiles, they see "things" who "suffer from mental retardation" and are "deformed." Instead of seeing children, they see "choices"; instead of recognizing the humanity of people with disabilities, they tend to see them as "burdens" to be thrown off at all costs.

Unlike other syndromes, those who suffer from CDS are not born with the syndrome fully intact; it develops gradually. There are no generalized physical characteristics, but they do share common mental characteristics: over time their brains apparently malfunction to the extent that they believe that the best way to deal with people with other types of "handicaps" is to kill them. A striking characteristic of the syndrome is that those afflicted by it do not recognize the fact that they are, in fact, more disabled than the people they deem unworthy of life.

The real danger in the syndrome, however, lies in the fact that the brain malfunction serves to trick the CDS sufferer into believing that what he advocates is a desirable course of action; in some cases, the malfunction has progressed to such an extent that the CDS sufferer even believes that what he is advocating is an acceptable, moral, and even desirable solution to the problem of "unwanted" children or individuals.

They do have their creative sides, however. In order to accomplish their goal of ridding the world of ‘unwanted' individuals, those afflicted with CDS tend to use words fraught with mystery, words like "fetus" and "termination" when referring to "unborn babies" and "abortion." "Quality of life" also gets a lot of use, and CDS sufferers are extremely gifted in bringing it into discussions, no matter how great a stretch is needed to make it "fit."

They spin great swelling stories about children with disabilities: for example, they tend to lean heavily toward using the words "suffer," "retarded" and "deformity" whenever possible to try to help convince expectant parents that the "loving option" is to "terminate the pregnancy" of a "down syndrome fetus." They also excel in the medical arts, devising tests-not for the purpose of healing individuals, as would be the natural inclination of those not afflicted with CDS-but for the express purpose of eliminating those whom they have decided are not worthy of life.

Another almost universal feature of those afflicted with CDS is that they see themselves as compassionate, sensible and practical in their approach to unborn babies with disabilities. They speak of their "concern" for the child and parents, should the child be born "disabled." They speak of "options" and may say, "We only want what is best for you and your baby." They see themselves as compassionate when they are glad that new methods of detecting "deformities" in-utero are found-not so that they can cure the baby-but for the single purpose of giving mothers the "choice" of getting a "safe" abortion.

In reality, their hearts have become so hardened that they are incapable of understanding the joy that can be found in parenting a child with disabilities, as they focus on -and exaggerate- the negative aspects. A further, almost diagnostic characteristic of CDS, is the apparent inability of those afflicted with it to understand the concepts of nurturing, selfless love, and basic respect for life. They do not understand that you can accept and love a child, simply because he IS.

At present, since there is no known physical cure for those afflicted with CDS, the best approach is prevention. There is evidence to suggest that teaching children moral absolutes such as "Thou shalt not kill," and "Do unto others as you would have them to do unto you," are some of the best means at hand to stop the spread of this deadly syndrome. That-and lots of prayer.

A Word About the Playlist

2008-10-07T13:50:00.001-05:00

The playlist here is a compilation of music suggested by the parents on our list serv. This music has touched their lives with regards to Down Syndrome in one way or another and they wanted to share it with you all.

Some of them were demanded by my daughter, you can guess which ones they might be. ;-)

There is no langauge that speaks to the heart like music... enjoy. :-)

Happy Down Syndrome Awareness Month

2008-10-07T07:29:00.001-05:00

It's October and that means it's Down Syndrome Awareness month! One would think it's a time to focus on the many accomplishments made by those who have Down Syndrome. A month dedicated to dispelling all the myths and extol the joys of having a person with Down Syndrome in your life.... that was the intent anyway.

Instead, every October, to 'celebrate' the month the media chooses this time to announce the latest development in search and destroy tactics against those yet born who have Down Syndrome.

The world's prejudice runs so deep, this is not even noted as the slap in the face that it is.

We have come so far, yet we have so far to go!

Carol

What not to say....

2008-10-06T11:01:00.000-05:00

A friend or acquaintance tells you that their new baby has down syndrome and you are stunned and at a lost for words. Your first instinct will be to offer your sympathy and feel sorry for the new parents, but please don't!

I would encourage you to say the very same things that all parents want to hear- CONGRATULATIONS! Boy or girl? How much did he weigh? Does he look more like mom or dad? Is he healthy? If not, then you could safely say, " I am sorry to hear that, how can I help you?"
Then be willing to volunteer to bring a meal to two, offer to take other children for day or even an afternoon. If the other siblings are older, offer to take them with your family on outings.

This is not to say that you should ignore the DS or the fact that the mother is most likely struggling with all kinds of mixed emotions at this point! Be ready to listen with an open mind. If you are a close friend, be ready to offer support and also hope. The internet is a wonderful place to find all kinds of stories about families who want you to know that this child is a huge blessing.

Here are some things parents on the DSIE list serv have heard from others over the years:

"I know people don't mean it wrong or hurtful when they say it, but... I am just so tired of hearing, "God knew what he was doing when he gave you Hunter, because I just couldn't handle it". Like he SUCH a burden and we are just so good at carrying that burden... Sometimes when I've had a trying day and feel mean, LOL, I just look at them and don't say a word."
Patty

"I haven't heard it for awhile, but I've never felt comfortable when people say......'they are so good in music.' (can't remember the exact quote)

I'm a pianist and have a daughter (also piano) and son (drummer), so I always thought that if Josiah was good at music, he would come by it naturally. He doesn't have any more interest in music than typical children. He does like to listen to it."

Shirley

"The most bizarre comment I ever got was from someone who had a lot of cats…and they became really inbred, some of the kittens had eye problems or were missing a paw…and this person told me, “Now I know what it feels like to have a child with a disability.""
Kathy

My take is a little different, being as we adopted Sean, but my two favs (NOT) are:

1. You will surely have a crown in heaven for taking in one of those kids.

2. You spent all that money to adopt and you chose HIM? Why?

Or the....... They are always such happy people. Um excuse me, must not know Sean! Or he missed that memo.

He is like every other 9 yr old I know. Moody

Julie

"My pet hate is " they are so lovable " . Well most of the time yes but not when they have have hidden my keys yet again because they love me ripping the house apart looking for them!! Or when they come down the stairs for dinner covered from head to toe in chocolate from their hidden stash ( provided by older sibs ) . Or best of all when they wait for your priests visit to make a grand entrance completely naked. Right then not so lovable LOL"

Catherine

"When Sam was a few weeks old I had him out shopping when a "friend " stopped me and asked to see the baby ( he was right there in the buggy in front of me playing with his cookie monster toy !!! ) . She looked at him and said in total surprise ??"oh does play with toys like a real baby ?? " I mumbled something and ran away but would have loved to have said " yes but only when I put his batteries in " and while I am at it Can I help you find someone to tighten those loose screws of yours??"

Catherine

"My least favorite thing was from my husband's own sister: "I really admire you for loving her" "
Kathy

"Here is one that peeves me......

"Well, they are always so loving and happy."

They look incredulous when I laugh at them and ask them wherever could
they have ever gotten that. Then I take the opportunity to remind
them that my daughter is a KIDS and just like ALL KIDS she is happy,
sad, cranky, loving, goofy, snotty...... ..

GRRRRRRRRR! LOL"

Cindy

Some other points parents brought up : don't ask 'How retarded is he ?', don't favor the typical sibs or exclude the child with DS. Please don't send parents a sympathy card after the birth- this happened to us.

Carol

Preconceived Ideas

2008-10-06T08:01:00.000-05:00

I don't know why, but I am still taken by surprise when people reveal their prejudice regarding Christine.

Maybe it's because it's so far away from my thinking now. When she was first born all I could see in her face was the DS. I would have been hard pressed to identify her as one of my own children, even though she is number 7. Now, 8 years later, I have a hard time seeing the DS, not only in her, but others with DS as well. It has disappeared into the back ground of my day to day living.

So when we were shopping for a birthday gift for an upcoming party she was invited to, I was caught off guard, not just once, but twice!

It happened to be Homecoming week in our schools and Christine is on the junior Cheer Squad. As is the custom, the girls all wear their uniforms to school to show team spirit. Not taking time to change, that is what she wore shopping as well.

One very nice lady, wanting to offer her public support to us, commented on the uniform. But instead of assuming she was actually a cheerleader, she assumed ( despite the very official look of the uniform with our school logo etc) that Christine was pretending to be a cheerleader.

Now I know she didn't mean any harm and I am sure she was trying to be nice. But I was offended and since it surprised me, mama bear took over and I blame her for the sarcastic response I lobbed at the unsuspecting woman. She felt the sting and immediately started to justify her comments by saying it's October and with Halloween being so close she just assumed Christine was pretending to be a cheerleader... blah blah blah......I had stopped listening.

I was still pondering this interaction as we were walking out of the store when yet another well meaning woman made the SAME assumption!

I don't mean to be cold or cruel, but I fail to see how placing people with a disability into a little box is supportive? They had already decided she was not capable of being a cheerleader and was merely living out her dreams within the realm of her own private world,when nothing could be further from the truth.

Carol

Prenatal Diagnosis

2008-10-05T12:35:00.000-05:00

Did you just receive a prenatal diagnosis for Down Syndrome? Are you searching the internet for answers and a glimpse down the new path you are on? Here is a great web site dedicated just to you! http://www.prenatalpartnersforlife.org/.

We would also encourage you to join our list serv, ask questions, lurk and hear what life is really like with Down Syndrome.

Carol

Beautiful Awareness Jewelry

2008-10-05T00:43:00.000-05:00

Look at the beautiful Down Syndrome Awareness jewelry made by Bead*Dazzle Jewelry !! I have to say she has the most creative designs I have ever seen.

Carol

Welcome to our new home away from home!

2008-10-05T00:04:00.000-05:00

The DSIE list serv was started by three moms who believe that it is impossible to make an informed decision without knowing all of the facts. We were simply tired of being told what we could, or could not talk about on other list servs, so we started DSIE with the premise that adults are fully capable of calmly and politely discussing any topic relative to down syndrome when given a little freedom to do so.

We have not been disappointed and have a wonderful list serv full of incredibly helpful people who are always ready and willing to help.

In an effort to reach as many people as possible with all the wonderful information, we decided it's time to join the blogging community. We will be posting things of interest and also add all the wonderful information from the DSIE listserv. We look forward to learning from all of you reading here as well.

Kathy & Carol

Down Syndrome Information Exchange

Faith the Science Fair Winner

ACTION ALERT

Two Articles...what a contrast in attitudes

Do People With Down syndrome Suffer?

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

New DSRTF Research Innovation Grant

Spotlight on Sam Sartoris

The McCain-Palin Press Release: Palin Commitment To Children With Special Needs

Remarks By Governor Sarah Palin On The McCain-Palin Commitment To Children With Special Needs

new advocacy group: International Down Syndrome Coalition for Life

Makin' Waves

Shifting Perspectives

Football Legend Would Pick His Son with Down Syndrome Over ‘Normal’ Child

Gift of Faith

How Can Obama Lead a People, if He Can't Recognize a Person?

Eugenic Abortion’: With Pre-Natal Testing, 9 in 10 Down Syndrome Babies Aborted

The Trig Palin Effect :An interview with Ann Robertson in the Washington Times

Governor Palin's remarks about her son, Trig, and the culture of life

The Retard Speech

What *to* say

Compassion Deficit Syndrome

Compassion Deficit Syndrome

A Word About the Playlist

Happy Down Syndrome Awareness Month

What *not* to say....

Preconceived Ideas

Prenatal Diagnosis

Beautiful Awareness Jewelry

Welcome to our new home away from home!

What to say

What not to say....