NDSS merchandise

from the NDSS December e-newsletter:

Last month we introduced Shop NDSS partner Rhyme & Reason Clothing and announced that NDSS signature t-shirts would be coming soon.  The wait is over!  We are proud to unveil a collection of men's, women's and kids' t-shirts featuring 3:21 on the front, symbolic of the third copy of chromosome 21 in Trisomy 21, and the NDSS logo on the back.

Adult shirts are $25 each and kids' shirts are $15 each. $5 will be donated to NDSS for every signature shirt purchased.

Guys will love the fit and feel of this t-shirt, made from 100% cotton with anti-pilling finish. It is so comfortable it will become an instant favorite, and its subtle message will make them feel good about wearing it as often as their favorite jeans (okay, maybe not that often).

The quality and fit of the women's t-shirt will make it the one that spends more time outside the drawer than in it, and wearing it will help to spread the word that people with Down syndrome are valued and loved members of our society. The flattering style and color options suit all sizes and skin tones. The women's shirts are made from 95% cotton, 5% lycra with an anti-pilling finish.

Whether they're learning to tell time or setting their own alarm clocks, kids will love knowing the 'secret' meaning behind 3:21 and will enjoy sharing this info with their friends. It's always the right time to learn to accept and include someone with Down syndrome! These t-shirts are made from 100% cotton with anti-pilling finish.

Rhyme & Reason clothing can only be purchased online. Standard shipping time is 3-5 business days. For all items other than NDSS signature t-shirts, customers who use the code NDSS25 will receive 25% off their purchase and free shipping from now until the end of the year. 10% of these purchases will be donated to NDSS. 

Click here to visit the Rhyme & Reason website.

Click here to view more photos of the NDSS Signature t-shirts on Facebook.

 

Time's Story on Prenatal Testing and Our Future

Down Syndrome: With Breakthroughs in Testing, a Tough Choice Gets Even More Complex

from Time:

Perhaps the most important thing you need to know about Melanie Perkins McLaughlin is that she's not pro-life or pro-choice or pro anything — other than pro-information.

When a distraught pregnant woman phones a Massachusetts hotline for Down syndrome, agonizing over what to do with an unexpected prenatal diagnosis, she will be routed to Perkins McLaughlin, who went through the same awful calculations in 2007. When Perkins McLaughlin learned halfway through her pregnancy that her daughter would have Down syndrome, she nearly decided to end the pregnancy for fear of what it would do to her marriage and her two older children.

As part of her decision-making process, she met with two families, each with a 5-year-old with Down syndrome. One child chattered away and played hide-and-seek with Perkins McLaughlin's own kids, whom she'd brought along. The other child was non-verbal. Both sets of parents told Perkins McLaughlin, a documentary filmmaker who lives near Boston, that they loved their kids just as they were; even if they could pluck that extra 21st chromosome from each and every cell, they wouldn't change a thing. "I figured they were saying that," she recalls, "only because they didn't have a choice."

But now, increasingly, parents do. Recent advances in prenatal screening are upending the way pregnant women learn about the genetic makeup of their unborn babies. In October, a San Diego biotech company began offering an exceptionally accurate maternal blood test for Down syndrome that can be administered as early as 10 weeks, long before a woman looks visibly pregnant. A study published last month in the journal Genetics in Medicine found that the DNA-based test, called MaterniT21, identifies 98.6% of Down syndrome pregnancies, with a false-positive rate of 0.2%, an achievement that study author and Brown University professor Jacob Canick hailed as a "major step for prenatal diagnosis."

Even without the new test, births of babies with Down syndrome have been decreasing even as they should have been on the rise: they dropped 15% between 1989 and 2005 due to more sophisticated prenatal screening even though increasing maternal age means they should have increased 34%, according to an article published in 2009 in the Archives of Disease in Childhood. Parents of children with Down syndrome are beginning to wonder whether the services and accommodations they've fought hard for could fade away if kids like theirs are slowly weeded out of the population. "You want a perfect baby, and the easiest thing to do is to eliminate a child that won't fit into that mold," says Theresa Howard, a N.J. ad copywriter who found out after her daughter, Lydia, was born in 2006 that she had Down syndrome.

The most common chromosomal disorder, Down syndrome — also called trisomy 21 because the fetus carries an extra copy of the 21st chromosome — has historically been diagnosed only through amniocentesis or chorionic villus sampling, both invasive procedures that carry a scary, if small, risk of miscarriage. Only 2% of all U.S. pregnant women have those tests, although the percentage can shoot to 60% when women receive questionable screening results or are labeled "high risk" because they're older than 35. But since most Down syndrome babies are born to younger women, because they're the ones giving birth most often, the majority of the 6,000 babies born with Down syndrome each year in the U.S. are complete surprises.

Some doctors predict that will change, now that there's an easy and risk-free way to identify Down syndrome early. Many women who may have been reluctant to risk a miscarriage with other tests are eager to try the new test. "I have been getting emails for months and months from people all over the world," says Marcy Graham, spokeswoman for Sequenom, the company that developed the MaterniT21 test. "There is so much anxiety around the thought of having a child anyway, and there's something about having this needle put in their stomach that's really terrifying."

Insured women will pay $235 to learn their chances of having a baby with Down syndrome; the test will otherwise cost $1,900.

But with women learning more about the genetic contents of their womb than ever before, a growing number of expectant parents will be faced with wrenching ethical dilemmas when the news is not what they expected. What is the value of a life? What can a person with a disability contribute to humanity? Which disabilities are tolerable and which are not?

Most people with Down syndrome have what are considered mild to moderate intellectual disabilities. There is no national registry for people with Down syndrome, so there are no reliable statistics on how many affected people would be classified as "high-functioning." For Amy Julia Becker, who has written a book about life with her daughter, Penny, who has Down syndrome, coming to terms with her daughter's intellectual limitations has taken time. "I went to Princeton, I graduated Phi Beta Kappa, I have always been smart," she says. "I didn't realize how much I assumed I'd have a daughter just like me. Having Penny really challenged me to rethink what it means to be a whole and full human being."

In her book, A Good and Perfect Gift, Becker transcribes a journal entry written soon after Penny was born: "Can she live a full life without without ever solving a quadratic equation? Without reading Dostoyevsky? I'm pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I'm pretty sure I can't."

But many expectant parents don't feel that way. Up to 90% of women who know in advance of a Down syndrome diagnosis choose to end the pregnancy, according to the few studies that have tracked this. The new test is not being marketed only to women who would end a Down syndrome pregnancy, say advocates of testing. Mothers who plan to have the baby may also want to know ahead of time in order to prepare emotionally and medically; half of infants with Down syndrome, for example, are born with heart defects. "I don't think it's all search-and-destroy," says Canick. "That is an awful way of looking at this."

But parents of children with Down syndrome are skeptical of the intent of early screening. "There is a real disconnect between hospitals, administrators and OB/GYN doctors' understanding of what has changed for children with Down syndrome over the years," says Howard, whose daughter, Lydia, starts conversations with strangers and cracks jokes in her inclusive preschool. "There was encouragement to get screened with the understanding that I would terminate because that's what most people do."

It's true that mothers who learn soon after delivery that their babies have Down syndrome describe being overwhelmed with sorrow and disbelief on what they'd presumed would a joyous day. Howard cried every day for nine months after Lydia was born. Perkins McLaughlin says it took her eight hours after her C-section to muster the nerve to go visit her daughter, Gracie, in the neonatal intensive care unit. "There are people out there who feel the test is great," says Perkins McLaughlin. "In some ways, it is great. But it is scary too. Will more people terminate because it's earlier in the pregnancy and why not just try again? I don't know what I would have done if I had found out at 10 weeks."

Gracie is now 3 1/2. In the two years since Perkins McLaughin, now 44, has served as a parent mentor for the Massachusetts Down Syndrome Congress, she's told the dozen or so conflicted pregnant women who have contacted her that Gracie is bright: she started signing at six months and had accumulated 100 signs by age 2, prompting her grandmother to ask, Are you sure she has Down syndrome? She loves music, dancing and her older brother and sister. Perkins McLaughin tells them how Gracie has added perspective to her life, softening her Type-A edges. "She's not going to do quantum physics, but I don't do quantum physics," says Perkins McLaughin. "Gracie has showed me in a profound way that I am not in control of everything. I have a bumper sticker that says, Grace Happens."

As a parent mentor, Perkins McLaughlin is trained to remain "very neutral," says Maureen Gallagher, executive director of the Congress. Mentors offer current information about Down syndrome, sharing that life expectancy has increased from 25 to 60 years, that early intervention and a shift in educational approaches mainstreams many kids with Down syndrome in typical classrooms, that young adults are no longer institutionalized.

To help provide more context for women who receive a prenatal diagnosis, Brian Skotko, a doctor in the Down syndrome program at Children's Hospital Boston who also chairs the clinical advisory board for the National Down Syndrome Society, recently published three surveys — of people with Down syndrome, their parents and siblings — in the American Journal of Medical Genetics.

It's quite possible that parents who don't feel positive about their children chose not to participate — after all, what mother or father would feel comfortable admitting they don't love their child? — but of the more than 2,000 parents who responded, 99% said they loved their child with Down syndrome. Just 4% said they regretted having their child, and 5% reported feeling embarrassed. Among siblings age 12 and older, 4% said they'd trade their brother or sister with Down syndrome for another; 88% said they felt they were better people because of their sibling. A third study analyzed responses from 284 people with Down syndrome: 99% said they were happy with their lives; 4% expressed sadness.

"When expectant mothers get a prenatal diagnosis of Down syndrome, it is an alarming moment," says Skotko. "They question, Can I love a child with Down syndrome? Can my other children? While families certainly recognize there are unique challenges that come with having a family member with Down syndrome, overall they say it is a positive and even rewarding experience."

That's a message that advocacy organizations are eager to spread. For years, they've lobbied for their children to be recognized as contributing members of society. If fewer babies with Down syndrome are born, they worry that research about the condition will taper off.  "We feel a sense of urgency now more than ever," says Gallagher.

In anticipation of a surge of calls from women who can now easily learn early in pregnancy that their fetus has Down syndrome, she has assembled a core group of parents, like Perkins McLaughin, who also got a prenatal diagnosis. "We respect people's right to choose," says Gallagher, "but it's important for them to understand the implications because this is just the beginning — there will be other tests."

Bonnie Rochman is a reporter at TIME. Find her on Twitter at @brochman. You can also continue the discussion on TIME's Facebook page and on Twitter at @TIME.

Celiac, Gluten and Down syndrome

People with Down syndrome are more likely to have Celiac Disease (CD) requiring a gluten-free diet. Below is a compliation of articles on this topic.


From Down Syndrome: Health Issues:

• Studies in the 1990s indicated that children with DS are at a higher risk to develop CD than the general population. The reasons for that aren't entirely clear, but since children with DS are at a greater risk from auto-immune diseases, that CD represents another one of these type of diseases.
• Children with DS who develop CD may actually have few symptoms at all, leading to what is called "silent" CD.
• Since CD can show few to none symptoms in children with DS, why worry about it? Because if left untreated, CD can cause decreased growth in height in children. Untreated CD can also cause a type of cancer in the intestine called lymphoma. This cancer is a rare but serious outcome that appears in the later adult years.
• Treatment is both simple and difficult: a gluten-free diet. All wheat, barley and rye products are off limits. Currently, it is recommended that oats be also eliminated from the diet at the beginning. They can be replaced in the diet as soon as the patient is doing better. In many cases, the symptoms of CD may lessen in as early as 2 weeks. The older the child, the longer it takes to come under control. CD is a lifelong disease; symptoms may from time to time subside to the point of the CD appearing to be gone, but the person must continue on the diet to avoid illness. The person may need vitamin supplementation to complete the diet.

from Celiac.com:

• Children with Down Syndrome should be screened for celiac disease because there is a 10% incidence of the autoimmune disorder in this population. Screening for and treating celiac disease can improve the quality of life for children with Down Syndrome.

from Pediatrics:

• Screening for a disease is appropriate if the disease has serious consequences, if before onset of the disease there is a detectable latent phase, and there exists a treatment that is more effective at an earlier stage. In patients with symptomatic celiac disease, a gluten-free diet for as little as 5 years can reduce or prevent gut lymphoma. Thus, with respect to gut lymphoma, celiac disease can be considered a premalignant condition. Furthermore, in a substantial proportion of cancer patients, the underlying celiac disease is not recognized until around the time of cancer diagnosis. Therefore, it would seem intuitive that identification and treatment of celiac disease at an earlier, asymptomatic stage would be even more effective.
• The authors site growth failure as one of the common findings at diagnosis of celiac disease in children with Down syndrome. Impairment of linear growth becomes evident late in the course of a disease. One would expect that screening and, therefore, earlier treatment would prevent growth failure.

from dsmig.org:

• If the person is more than 2 years old when the diagnosis is established the condition will be lifelong. Those diagnosed before age 2 years may have other conditions which mimic coeliac disease and therefore should be rechecked with further gluten challenge before school entry.

from Bella Online:

• Relatives of people with celiac disease, sometimes called celiac sprue, have a higher possibility of gluten intolerance but may not be aware they are affected.
• Joan Medlen, RD, author of The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles, is a leading resource for families of children with celiac disease. Know that you are not alone in dealing with the challenges celiac disease and gluten free living introduces into your child's life - there are well informed professionals and parents who are reaching out to others, remembering the adjustments they made in the early months after diagnosis.
• It is natural for families of children with the dual diagnosis of Down syndrome and celiac disease to feel anxious or occasionally overwhelmed in the weeks following diagnosis. Your child may find changes in routines and diet difficult, but it's common for them to feel much better within weeks of starting gluten free living.
• Frustration with extended family, staff at school, daycare or recreation programs can make it difficult to work out the changes that are needed for the health and well being of the child with CD. Sharing articles and medical information, and eventually writing up a one page information sheet for substitute teachers and parents of your child's friends, will help educate and inform the whole community.

from NDSS:

• The incidence of celiac disease in children with DS ranges from 10% to 16%.  One reason children with Down syndrome have this disease is because of increased susceptibility to autoimmune diseases. In children with Down syndrome who are genetically predisposed to celiac disease, exposure to gluten causes an immunologic reaction in the lining of the small bowel resulting in flattening and thinning of the normal hair like projections (villi) of the lining. This is the part of the intestine which is the absorptive surface of the small bowel.

from Woman Gone Wise:

• In my initial research of the gluten-free diet and special needs kids,  I learned kids who crave these gluten-laden foods have most likely become addicted to them.  There is an opiate effect that occurs and many parents have reported their own children went through withdrawal like symptoms when initially eliminating gluten.  Many children with autism had a surge in their behavior. The withdrawal effects are similar to addicts withdrawing from a narcotic.
• New textures, flours made of rice and beans, crumbly breads; are all things families typically learn to adjust to with this new diet.  But then the behavior came.  Wild behavior.  AJ began tossing items across the room.  He couldn’t keep his clothes on.  He ran across the hall as quickly as he could, throwing his body into the door, then ran through the family room throwing his body into the back door.  He ran back and forth and back and forth slamming himself into the doors and walls.  His pain tolerance was even higher than usual.
• I almost became frantic, until I remembered the possible withdrawal symptoms.  I reread every word and it was describing our boy.  Not every child with autism reacts with heightened symptoms, I believe it is a small percentage, and of course our family hits the jackpot again.  I kept him home from school the first week until his body adjusted and calmed down. 

also from Woman Gone Wise:

How will your child learn to make healthy new choices?

• Make an accessible food cupboard or basket for your child.  Put their name on the cupboard and celebrate the cupboard as his or her own.
• Label packages.  Highlight the words “Gluten Free” on the food packages with a highlighter or tape your own colorful label on the gluten-free product.
• Label choices.  Make a picture board of healthy and fun gluten-free choices: fruit, crackers, yogurt, etc.  Tape the picture board on the outside or inside of the cupboard as your child is learning new dietary choices.
• Label the refrigerator.  Dedicate a bin or shelf in the refrigerator which remains exclusively accessible for your child.  Clearly and colorfully label the shelf or bin.
• Look for labels in the grocery store.  Go shopping together and read the gluten-free labels on food products.  When your child takes an item from the shelf ask, “Is this food gluten-free?”  Use your finger to point out the words “gluten-free”.  Then celebrate, “Yea! This looks yummy!  These crackers are good for you.  Let’s put it in the cart”.   The repetition of reading labels together will help your child get in the habit of looking for the familiar “gluten-free” words until one day he or she will be able to do it on their own.

International Day of Persons with Disabilities - December 3rd

from Disability.gov:

On the eve of December 3, the International Day of Persons with Disabilities, it is worth noting that 2011 also marks the 30^th anniversary of the International Year of Persons with Disabilities. Much has happened to advance the rights, equality and inclusion of persons with disabilities since the International Year was adopted by the United Nations (UN) in 1981. International Decades of Disabled Persons have been adopted by the UN, the Asia Pacific region, the Americas and the African region, advancing activities to combat discrimination on the basis of disability.

In 1990, with its adoption of the Americans with Disabilities Act (ADA), the United States became the first country in the world to adopt national civil rights legislation unequivocally banning discrimination against persons with disabilities. A global pioneer, the ADA has inspired adoption of disability rights legislation around the world, including the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is the first international treaty to comprehensively address the rights of persons with disabilities, and has unified the global community with a common language of disability rights.

In celebrating this year’s International Day, and in a spirit of reflection, the State Department is hosting a screening of the Independent Lens film, “Lives Worth Living.” This documentary charts the history and rise of the disability rights movement in the United States. It shows how far we have come in striving for a society where persons with disabilities can live their lives on their own terms, through access to education, employment, transportation, political participation and other fundamental spheres of life. It also demonstrates the power of unity, and how historically marginalized members of civil society can claim their place as agents of change in championing rights and freedoms, not only for themselves but for all people.

Such themes have been repeated over the past year, as we have witnessed civil society standing up for freedom and democracy in the Middle East and elsewhere. Secretary Clinton has referred to civil society as one of the “essential elements of a free nation,” and noted that “societies move forward when the citizens that make up these groups are empowered to transform common interests into common actions that serve the common good.”

As we contemplate the next 30 years, it is worth considering how we in the U.S. disability community can continue to unite our common interests into common actions to serve the common good of persons with disabilities, both here and abroad. We still have progress to make at home, but for many persons with disabilities abroad the barriers they face have much in common with the barriers faced by persons with disabilities in the United States 30 or more years ago. We have much to share with and learn from our colleagues around the world, as we work together to make the rights articulated in the CRPD a reality in the daily lives of children, youth and adults with disabilities. It is work that we at the State Department are dedicated to, and on this International Day of Persons with Disabilities, we hope that you will commit to joining us in this endeavor.

Judith Heumann serves as the Special Advisor for International Disability Rights, the first such advisorto be appointed at the Department of State. The position of Special Advisor was created following U.S. signature of the Convention on the Rights of Persons with Disabilities (CRPD) and resides in the Bureau of Democracy, Human Rights and Labor (DRL). As the senior-level disability human rights position at the State Department, the Special Advisor leads on disability human rights issues across the Department. The Special Advisor also coordinates the interagency process for the ratification of the CRPD ; ensures that foreign assistance incorporates persons with disabilities; leads on disability human rights issues; ensures that the needs of persons with disabilities are addressed in international emergency situations; and conducts public diplomacy, including with civil society, on disability issues.

Please visit http://www.state.gov/r/pa/ei/biog/144458.htm and http://www.facebook.com/SAHeumann for more information.

NDSS Call for Awards 2012

from the NDSS: NDSS Call for Awards 2012	More Info
Accepting Nominations for the Annual Buddy Walk on Washington
Down syndrome Community: As part of our annual Buddy Walk® on Washington, the National Down Syndrome Society seeks to honor those in the Down syndrome community that work tirelessly throughout the year as advocates, leaders and change makers in the area of public policy and advocacy for people with Down syndrome. Each year, we present an award to: A self-advocate An individual leader (this could be an affiliate leader, parent/family member, professional, expert etc.) A Down syndrome advocacy group (this could be a Buddy Walk, GAC, committee, affiliate, etc.) Currently, we are requesting nominations for our 2012 awards!  If you wish to nominate an individual or group, please do the following: 1)      Submit an email nomination to Sara Weir (sweir@ndss.org) by December 15 2)      Nomination should include the following: Your name and contact information Nominee along with organization or individual contact information Brief summary explaining why this person/organization should receive the award For a list of 2010 and 2011 NDSS honorees, please check out:   http://www.ndss.org/index.php?option=com_content&view=article&id=263&Itemid=136 Winners will be decided by committee and notified of the award.  Awards are presented at the Buddy Walk® on Washington in Washington, D.C. on February 29, 2012.  Ideally, the award recipient will be able to accept the award personally.  If you have any questions or concerns, please email Sara Weir (sweir@ndss.org).  We look forward to receiving your nominations.