Student with Down syndrome inducted into National Honor Society

Well Done Sarah, Well Done. ______________________________________ Rising to the occasion again: Student with Down syndrome inducted into National Honor Society at Blue Valley North By GRACE HOBSON The Kansas City Star Sarah Sherman is no more special than any of the 141 other students inducted Thursday night into Blue Valley North High School’s chapter of the National Honor Society. Her 3.75 grade-point average is high, yes, but they all have at least the required 3.5. Every one of the students worked hard to pull the grades while participating in school activities and logging at least 40 hours of community service. She is, however, the only one who has Down syndrome. As she was called to walk across the Blue Valley North stage at Thursday night’s ceremony, her achievement was not singled out. Her name carried no extra weight on the program. She blended in. She belonged. “That’s the part of it that’s the greatest achievement,” said Nancy Pence, the faculty co-sponsor of the National Honor Society. “That she’s a part of this group.” The society’s national headquarters doesn’t keep statistics on how many students with Down syndrome have been inducted into the elite honor society. But Sarah’s achievement is unusual enough that she is the first in Pence’s seven years as a sponsor, and the only inductee with Down syndrome that Carter Burns has known in more than 30 years of being a principal. Unusual but not surprising to Sarah’s teachers. Or her parents. They’ve watched their little girl surpass expectations all her life. She’s so social, she runs into friends wherever she goes. So good at memorizing facts, she’s a “Jeopardy” whiz. She’s been in three school musicals. She taught herself sign language. “People would look at us like, ‘She can’t be doing that,’ ” said her mother, Pam Sherman. “She can. She did.” Sarah never considers what she can’t do. She just knows what she can do. “I learned from experience hard work does pay off,” Sarah said. “I feel if I persevere, the work will get done, and hard work does pay off.” The 17-year-old junior has had to work hard for everything she has accomplished, starting as a baby with the basics, like sitting up. Her mother spent hours on occupational, physical and speech therapies to help her reach developmental milestones. Early on, her parents learned they were lucky. Sarah didn’t have many of the health problems that thwart progress for many children with Down syndrome, a series of birth defects caused by an extra chromosome. Babies with Down syndrome are born with cognitive impairment, low muscle tone and other health problems. Jim Sherman remembers when they had to feed baby Sarah hourly because two holes in her heart left her too weak to drink much from a bottle. One night when he got up to take his turn, he peeked into her bassinet and found her babbling and playing with her feet in her face. “I thought, ‘This is all right,’ ” Jim said. Two weeks later, the cardiologist said the holes had healed themselves. “From that point on, it’s been good,” Jim said. Sarah proved to be a bright and eager learner. She knew her alphabet at 3; when she was in kindergarten, a teacher didn’t buy that Sarah could know her letters. She struggled to learn to read, but when she was 7 or 8, her parents noticed a new fluency. They discovered why: Sarah had learned to turn on subtitles on her favorite musicals, including “The Sound of Music,” and used them to help her read. For years Jim has made index cards to teach his daughter, a visual learner. In grade school, Sarah would put the cards in a circle and sit in the middle, making up sentences with the words from the cards, Pam said. “Hard work does pay off,” said Sarah Sherman, who was inducted into the National Honor Society on Thursday night. After the ceremony, the Blue Valley North junior thanked her aunt Deb McAnulty for attending. “We have thousands of index cards,” Pam said. “We have boxes and boxes.” In addition to history and anatomy, Sarah takes general education reading and acting. She works with special education teachers for math, has a peer tutor during a study skills class and is a peer tutor for a senior with Down syndrome. A paraprofessional or teacher accompanies her to anatomy and history to help take notes because Sarah’s fingers can’t always keep up. She takes her tests apart from other students to give her more time because she processes information more slowly. On multiple-choice tests, the answers are pared because her brain has a hard time sorting; she’s better at simply supplying the answer. She aces her coursework. “We really push the envelope on Sarah, and she always rises to the occasion,” said Dana Steinwart, one of Sarah’s special education teachers. Sarah works hard to make it happen. She does some homework after school, but weekends, when she’s fresher, are devoted to studying. During breaks, she hangs out on Facebook or finds other diversions. “She likes to sing and dance, so we hear a lot of that when she’s supposed to be studying,” Pam said with a laugh. Sarah set a goal of being inducted into the National Honor Society, just as her big sister was. She had the grades. She volunteered with Meals on Wheels, at her grandparents’ church and at a nursing home doing sign language with a resident who is hearing-impaired, and she kept track of her hours until she hit the magic 40. She got the requisite teacher recommendations. “I didn’t even know if I was going to get in,” Sarah said. “I’m really excited about that.” But her parents say it never occurred to her she wouldn’t make it. Why wouldn’t she? “She doesn’t doubt for one minute that she can do what she tells you she wants to do,” Pam said. “There isn’t anything in her head that says, “Ooooo, don’t try that. You might fail.’ She doesn’t doubt for one second.” After accepting her honor society sash Thursday night, Sarah got an onstage hug from chapter co-president Drew Gaddie, her good friend. “I try hard not to cry when those things happen,” Sarah’s mother said after the ceremony. “I had to try not to cry, too,” Sarah said. Upon spotting fellow inductee Elizabeth Campbell, Sarah bounded over with an embrace. “Congratulations!” said Elizabeth, a junior. “We did it!” Sarah responded. Sarah wants to be a nurse, and her parents think she can probably work in the medical field, maybe as a sign language interpreter. They don’t know whether Sarah will want to go away to college or perhaps start with some online college courses. Just as they did with Sarah’s sister, Jenny, they will support her as she chases her future. “We want her to pursue her dreams, just like we want Jenny to,” Pam said. “We want her to be healthy and happy. “The rest is easy after that.” To reach Grace Hobson, call 816-234-7715 or send e-mail to ghobson@kcstar.com.

So you wanna Dash with Nash? 2009 DSI Buddy Walk® -Indy- October 10th!

The 2009 DSI Buddy Walk is Saturday, October 10th, 2009 Celebration Plaza, White River State Park - Downtown Indianapolis Join Team Dash with Nash! We are taking part in the Buddy Walk®, as an affliate of the National Down Syndrome Society, to raise money for Down Syndrome Indiana, an organization near and dear to our hearts. The Buddy Walk® has three primary goals: * To promote acceptance and inclusion of people with Down syndrome* To raise funds locally and nationally for education, research and advocacy programs, and; * To enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice. Please join our team and/or make a donation by visiting DASH WITH NASH You can donate online with a credit card or shoot me an email and send a check via snail mail, but it needs to be in by October 3rd to go to our team total. For more information about the Buddy Walk click here Thank you!

In Light of Palin's selection as VP- Press Release about Down syndrome

Hot off the press, for the press. Feel free to pass it on to local media! FOR IMMEDIATE RELEASE National Down syndrome Society and National Down syndrome Congress Contact: Sarah Schleider 212-763-4369/ 917 921 9889 (cell) sschleider@ndss.org Governor Sarah Palin of Alaska has been selected as John McCain’s choice for Vice Presidential nominee of the Republican Party. Governor Sarah Palin recently gave birth to her son who has Down syndrome. The Palins knew before their son’s birth that he would have Down syndrome. Below are tips for the proper use of language for ‘Down syndrome’. The National Down Syndrome Society and the National Down Syndrome Congress encourages all media to use the below language: · Down vs. Down’s. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome” as well. · People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.” · Down syndrome is a condition or a syndrome, not a disease. · People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it. · It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability” or “cognitive impairment.” Down Syndrome Myths and Truths Myth: Down syndrome is a rare genetic disorder. Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome. Myth: People with Down syndrome have a short life span. Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome. Myth: Most children with Down syndrome are born to older parents. Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother. Myth: People with Down syndrome are severely “retarded.” Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. Myth: Most people with Down syndrome are institutionalized. Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. Myth: Parents will not find community support in bringing up their child with Down syndrome. Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. Myth: Children with Down syndrome must be placed in segregated special education programs. Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees. Myth: Adults with Down syndrome are unemployable. Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication. Myth: People with Down syndrome are always happy. Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior. Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage. Truth: People with Down syndrome date, socialize, form ongoing relationships and marry. Myth: Down syndrome can never be cured. Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future. For more information visit: http://www.ndss.org/ or http://www.ndsccenter.org/

Remembering Annette and the 2007 Indiana Buddy Walk

Today is the 6 month Anniversary of our friend Annette's death. In honor of Annette, I submitted an article for our DSI Buddy Walk Newsletter, as the request was to provide an article about what the Buddy Walk meant to our families. While I could have written about how I brought Nash to our first Buddy Walk in 2001 when he was 6 months old, and I was just overpowered with anxiety, fear and joy and all of the aforementioned emotions, I chose to write about one magical Buddy Walk; last year in October of 2007. My draft: Buddy Walk 2007 and Memories of Annette Our family consists of three, plus a few hundred or so, since the birth of our son Nash in February 2001 thanks to the members of the IDSF, now DSI family, and those we have met via internet support boards. When Nash was born, and his diagnosis of Trisomy 21 official, we bought books, cried a bunch, loved on our son, and went on-line. My support was my loving husband Jeff, our families, a box of tissues and a group of gals originally on a parentsplace.com Down syndrome board, which later evolved into the tri21online.com discussion group. On this board, I was able to somewhat covertly discuss my fears, dreams and issue-of-the-day, share my love of internet research and my findings to all those that will listen, make some friendships that still, to this day, feel stronger than genetic family ties. The strength of the bond among those of us with children with Down syndrome is inexplicable to those not officially members of our exclusive club; those with a family member with Down syndrome. The strength of this bond was evident at the 2007 Buddy Walk. Annette Lammer and her husband Tom became friends with Jeff and me via the internet in early 2001 when Annette and I met on-line. Their son Ryan also has Down syndrome and is Nash’s age, born within a week of each other. Our friendship grew as we shared triumphs and disappointments, and finally met each other in person. These meetings are known as “IRL’s” in the online communities, or “In Real Life” meetings. The IRL’s were held in various locals, and the last one with Annette was at our home in Indiana for the 2007 Buddy Walk. We had over 80 people attend the IRL at our house in Noblesville after the Buddy Walk from all over the country, including Annette and family from Canada. But I knew this was much more than an IRL. It was a gathering of friends for Annette who all share that special bond of having a child with Down syndrome, as we didn’t know how long we would be blessed with her friendship and presence here on earth. Annette was diagnosed with synovial sarcoma in February 2006, five years from when her son Ryan was born. She passed away on December 16, 2007, just two months after that wonderful gathering at the Buddy Walk. So you see, the Buddy Walk is a special event for many of us; a place to gather family, friends and those special in our lives. It’s for educators, therapists, friends and family to show their support for Down syndrome Awareness. It’s an event to celebrate, and for us that knew Annette, to remember. And we will be doing just that for the 2008 Buddy Walk in Indianapolis. Celebrating and remembering. We hope you all join us! Annette at the 2007 Buddy Walk- God Speed Annette, we miss you. Annette and family on the right at the end Please leave a link to your Buddy Walk or IRL experience in your response for us to enjoy, expecially if it pertains to our much loved, much missed Annette.

Noblesville principal awarded DSI STAR award

Nash's principal, Mr. Bob Harvey, was awarded the DSI STAR award and there is a write up in our paper. Its a great award to promote those in your community that promote inclusion! Oh, I got one too. hee ---------------------------------------------------------------------------- Noblesville principal awarded DSI STAR Submitted by Lisa Tokarz-Gutierrez Posted: May 29, 2008 Bob Harvey and Lisa Tokarz-Gutierrez Noblesville's White River Elementary principal Bob Harvey was recognized by Down Syndrome Indiana (DSI) at the DSI (formerly the Indiana Down Syndrome Foundation) annual meeting May 7th. Harvey received a 2008 STAR award, which honors individuals, corporations, or groups whose long term achievements and/or contributions further the Down Syndrome Indiana mission. DSI is dedicated to enhancing the lives of individuals with Down syndrome and holds as it's stated mission " to serve as a conduit of information, support and advocacy for individuals with Down syndrome and their families, to promote growth and inclusion in the community." Harvey is a shining example of a principal who works with parents, teachers, and support staff - all in the best interest of the child- in order to achieve a successful, inclusive educational environment, according to the DSI award nomination. His motto is "Every Child, Every Day --Challenge and Success! " Other recipients of the 2008 DSI STAR award include Dr. John Brown, Dr. Mark Turrentine ,Cynthia Cobb, Beth DeHoff, Bob Gatto & the Texas Roadhouse, The Ray Glowner Family, Mark Hublar, Jan Steck Huffman, Robbin Lyons, Midwest Orthotics, Dr. Kathleen Stanton-Nichols, and Dr. Brian Skotko. For more information about Down syndrome or DSI events go to www.indianadsf.org Lisa Tokarz-Gutierrez, Executive director of Down Syndrome Indiana. Contact Tokarz-Gutierrez at (317) 925-7617.

NASCAR driver David Ragan's brother Adam inspires the team

NASCAR driver David Ragan's brother Adam inspires the team. Adam happens to have Down syndrome. Watch this UTUBE video- Adam & David Ragan's ESPN2 Spotlight: Adam works for Speedway Motor Sports handling Nascar merchandise. Here is more........ No, that's not Andy Taylor and Barney Fife next to the 1960 Ford Fairlane 500 -- it's David Ragan and brother Adam. photo by David Newton

Nash's Natter

We have always discussed with Nash his having Down syndrome. Sometimes its in passing like "she has Down syndrome too, just like you. Isn't that cool?" or I will explain how I know sometimes it gets more difficult to learn and to talk to his friends because he has Down syndrome, or about characteristics, as its like his brown hair, hazel eyes, etc... I feel its important not to dwell on it, but incorporate it. I feel I would do that also if we adopted a child; talk about how he/she was born in our hearts, etc. so with that said, Nash knows he has Down syndrome, and lately talks about it more. He asks for shows and says "Corky has Down syndrome, he's cool". Or when asking to see Child King; "I want Jeremy, Down syndrome." He picked up the copy of Mr. Blue Sky (TM I need to send that to you, remind me) and he said "Down syndrome movie". He sees pictures of our kids from the Tri21 board and says "William has Down syndrome". Well, we drove into the Ft Worth Zoo and there was a young gal of Asian descent at the ticket booth. Nash yells out "SHE HAS DOWN SYNDROME"!! OMG. THEN, we go out to eat at Chili's and Jeff and I were pretty sure an adorable boy in the boy behind us had Down syndrome, but Nash confirmed it when he said " HE IS DOWN SYNDROME" and pointed to him. Now we need to work on Political Correctness and Person First Language!

~Happy World Down syndrome Day~

March 21, or 3-21 is World Down syndrome Day. Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. Singapore was selected to launch the inaugural WDSD in 2006. The event, held at the CHIJ Secondary School in Toa Payoh, in the heartlands of Singapore was very successful and well attended. Many other organisations worldwide joined in the celebrations with events and activities in their respective countries. This year the theme for 21 March 2008 is "Aim High Enough", to continue creating awareness about Down syndrome and promote acceptance of diversity.

March is Disability Awareness Month

World Down Syndrome Day and Kelly's Upside Down Ball

On March 21st, World Down Syndrome day, Robbin will be donating her hair to Locks of Love in honor of her daughter Kelly at Kelly's Upside Down Ball. But you can help decide, does she give it all and leave BALD or does she get to keep a little on top? Yes, it's up to you to vote! Does she shave it or save it? It's $1 per vote and all the money goes to Kelly's Upside Down Ball to help the families of individuals who have a dual diagnoses of Down syndrome and cancer in Indiana. Wanna vote? Go to HERE Where it says donation purpose scroll to "in Honor Of" then type in save it or shave it for who and KUSDB for the event. At the ball we'll announce which side wins and if Shave It wins, Robbin will shaved it off right there! Help grow this fund by sending this blog link to all your friends and family. It's only a dollar for a great cause! Her goal is to raise at least $1000.00 but she could do so much more with your help- she has grown her hair since the last Ball a year ago. We always tell kids with leukemia that it's no big deal to lose your hair, it grows right back. Well she is out to prove it! So let's have some fun, help a good cause and cut for a cause! To learn more about Kelly's Upside Down ball Click Here. **** NOTE: There were technical difficulties with the donation site but I have been told hey have been fixed**********

Just believe.........

An ambassador against fear

The triple-screen test, baby has down syndrome, termination, ultrasound, karyotyping,amniocentesis, chorionic villi sampling (CVS), percutaneous umbilical blood sampling (PUBS),trisomy 21, Down syndrome, duodenal atresia, heart defect, brachycephaly, mild ventriculomegaly, macroglossia, abnormal facies, nuchal edema, echogenic or hyperechoic bowel, pyelectasis, shortening of the limbs. Did you google some of the terms above which can be "markers" for Down syndrome to find out more information because you may be facing a prenatal diagnosis of Down syndrome and are scared? Please read on.....and contact me for a free GIFTS book, detailed at the side bar. Educate yourself- for your family, for your unborn child. An ambassador against fear By Beverly Beckham March 2, 2008 This is what "internationally renowned" Sherman J. Silber, M.D., writes in his "completely revised and updated" book "How to Get Pregnant," published by Little Brown and Co. last August: "The biggest fear of most pregnant women is that their child will be abnormal, and the most common abnormality they worry about is Down syndrome. . . . These children are severely retarded mentally, and they usually die before their thirtieth birthday." He also writes: "We can prevent couples from having to face the horror of giving birth to children with otherwise devastating genetic defects such as Down syndrome, cystic fibrosis, muscular dystrophy, mental retardation, etc., that terrify every woman who ever gets pregnant." Silber's book has sold more than 400,000 copies. It's been translated into Spanish, German, and Russian. He's been on "Oprah," "Good Morning America," and NPR. Silber may be popular, but he is wrong. "Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Some are so mildly affected that they live independently and are gainfully employed," says the National Institutes of Health, the federal agency that speaks with authority on this issue. "Most of the health problems associated with Down syndrome can be treated, and life expectancy is now about 55 years," says the March of Dimes. And giving birth to a child with Down syndrome or cystic fibrosis or muscular dystrophy or mental retardation is not a "horror." Not according to every woman I know who has given birth to a child with these disabilities. It takes a long time to alter public perception, to dispel these untruths. I know. My granddaughter has Down syndrome. "This is Lucy," I say to someone new and Lucy smiles, or doesn't, because she is 4 and 4-year-olds can be sweet or they can be indifferent and stare at the floor. But mostly she is sweet and says "Hi" before bolting across a room to wherever she wants to be. Mostly she makes a good impression. And this is important because Lucy may be the only child with Down syndrome this person ever meets. Lucy doesn't know that she's an ambassador. She doesn't know that how she acts may determine what a person thinks of other people with Down syndrome. She doesn't know that she's up against misinformation and fear. Lucy frightens no one. She's a pretty girl with light brown hair pulled into two pony tails, sparkling green eyes, and a knack for leaving people who meet her not sorry and sad, but happy. Amy, my friend Anne's daughter, was the same way. She had cystic fibrosis. She lived for 11 years. Too short a time. But a good time, a beloved time, not a horror. Efforts to change the way people think about kids with disabilities are slow going because there are not enough Lucys telling the world that they're OK. Lucy is not on "Oprah." Lucy is not an "expert." But the truth is that Lucy shows people that Down syndrome is not the end of the world. This truth is in books, too, and in movies and blogs and in other people with Down syndrome. But who in the general population would hunt down "Praying with Lior," a documentary about a 13-year-old boy with Down syndrome who loves to pray? Who would read "Gifts," a collection of stories written by mothers of children with Down syndrome? Who would watch "Down Syndrome - The First 18 months," an educational video put out by Woodbine House? Who will read "Road Map to Holland - How I Found My Way Through My Son's First Two Years With Down Syndrome" when it's released next month? Who will read blogs about Down syndrome just to learn? Only people who have reason to learn. The rest of the world learns as they go, believing the facts that some "expert" gets wrong. So misinformation lives and old beliefs endure and negativity reigns. On paper, kids with disabilities do not make a good impression. On paper, Lucy is all negatives. Low muscle tone. Speech delayed. Cognitive impairment. Slow to walk, to learn, to grow. Even her almond-shaped eyes are a negative, though God knows why. They are beautiful, like her mother's, bright and full of wonder. But in person? Lucy charms. In person, Lucy is just a person, 4 years old, saying her hellos, then racing away to discover the world. http://www.boston.com/news/local/articles/2008/03/02/an_ambassador_against_fear/?p1=email_to_a_friend Beverly Beckham can be reached at bevbeckham@aol.com. Listen to Beverly's weekly podcast at boston.com/news/podcasts.

NDSC and NDSS Condemn Baghdad Bombings

FOR IMMEDIATE RELEASE February 1, 2008 CONTACT: David Tolleson Jon Colman National Down Syndrome Congress National Down Syndrome Society 770/604-9500 212/763-4371 The National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) condemned the use of individuals with Down syndrome by terrorists following dual bombings in Baghdad Friday. According to news reports, terrorists used remote-controlled explosives attached to two women with Down syndrome to kill at least 73 people. Responding to news of the attack, NDSC Executive Director David Tolleson said, “this tragedy is compounded by the terrorist’s vicious exploitation of individuals with Down syndrome.” NDSS President Jon Colman agreed, noting that “this was not a suicide attack, these women were murdered, as surely as the other victims.” This is not the first time individuals with Down syndrome have been used by terrorists in such deadly attacks in Iraq. On January 31, 2005, an explosive device tied to a boy with Down syndrome was exploded in Baghdad, in an act condemned at the time by NDSC and NDSS and others around the world. Both the National Down Syndrome Society and the National Down Syndrome Congress urge the Iraqi government to use every available method to end the abuse of individuals with Down syndrome and to use this tragedy as a catalyst to enact and uphold policies and laws that will protect the basic human and civil rights of all individuals with disabilities

The Shot of a Life Time

Go B'Rad! The Shot of a Life Time Source: http://abclocal.go.com/wpvi/story?section=news/sports&id=5901234 WPVI Philadelphia, PAHOME The shot of a lifetime Tuesday, January 29, 2008 | 12:20 AM An Action News Special Report By Jamie Apody CHERRY HILL, N.J. -- A remarkable young athlete has developed a big following. At first glance, it was just your run of the mill three-pointer in a high school hoops game. "He comes down with three seconds to go and makes the final shot. It was an amazing shot," said his dad, Bob Hennefer. And then you notice, the coach on the opposing team came over to shake the Brad Hennefer's hand. "It was unbelievable. He got a standing ovation," said John Valore, Cherry Hill East coach. This shot was different. This shot was Brad Hennefer's first-ever Varsity basket. This shot was something that was never supposed to be in the cards. "I'm a very good shooter, good behind the black lines," said Brad. Life has been tough from the beginning for Brad. Born with Down Syndrome, nothing comes easy or guaranteed. "We had no idea about Down Syndrome. We had mixed emotions," said his dad. What he did, since the tender age of three, was turn to sports. Now a senior at Cherry Hill East, he has played four years of high school basketball. "Being part of a team is always a kids dream. It has been great for him," said Bob Hennefer. "His reaction to the excitement of it all just adds a catalyst to the rest of the players and makes them go harder, work harder," said Valore. "All the kids in basketball, they look at me and are proud of me," said Brad. Basketball is not even Brad's best sport. He is thought to be the only kid with Down Syndrome in the country to earn a varsity letter in two sports -- basketball and golf. Brad is set to graduate this year. He has big plans. "After high school, I'll go to Camden County College work on business and computers," said Brad. And wherever life takes him, he'll always have that shot. It's proof that sometimes the biggest triumphs come in the smallest of victories. His teammates call him B-Rad. The Hennefer family has started a foundation, Golf for Life, in which they travel the country and put on golf clinics for kids with Down Syndrome. For more information on the foundation, visit www.golfforlife.org. (Copyright ©2008 WPVI-TV/DT. All Rights Reserved.)

Karen Gaffney on the Today show

We missed it on TV but here is the clip. I just love her! Also, here is the link to her Foundation

NDSS 2007 Buddy Walk Video is out

Nash and his buddy Andrew on the Big Screen! Come see the young, old, and the inbetween! CLICK HERE. Nash is at 6:12 on the video... I would love to go to NYC next year if his photo is chosen again! to learn more about the Time Square Video and how photos are chosen, CLICK HERE.

10th Annual Buddy Walk- Get It Down 31 for 21: Post 19

The 10th Annual IDSF Buddy Walk was a featured article in IndyChild magazine this month. (Part of the "settlement" with the magazine over the horrendous episode last summer allows several articles about Down syndrome to be printed in Indy's Child.) Update on the Buddy Walk: We raised over $180,000. and over 2400 attended, a record for us! thank you all!

Its Party Time! Get it Down 31 for 21: Post 12

Buddy Walk weekend, IRL party, its time to clean up and have a PARTY!

Another Couple with Down syndrome to Wed- Get it Down 31 for 21: Post 11

Bernadette and Josh to Wed Thursday, 10/11/07 Couple with Down syndrome prepare to wed They expect their love to transcend limitations By CLAUDIA PINTO Staff Writer Doctors referred to Gwenn Resha's baby as a "mongoloid idiot" and advised her to put the infant in a nursery and have another one real quick. "They said nursery, but they were meaning institution," Resha said. "Back then, there was no expectation that people with Down syndrome would do anything but sit and vegetate." Resha's daughter, Bernadette, has helped to debunk that once-widespread belief. The 28-year-old has graduated from high school, acted as a paid spokeswoman for Easter Seals and Special Olympics, appeared in the movie Gummo and become an accomplished artist whose paintings sell for hundreds of dollars. On Nov. 11, she will do something else that experts a generation ago would not have thought possible: she is getting married to a man who also has Down syndrome. Advocates say marriage is rare between two people with Down syndrome but becoming more common because of longer life spans made possible by medical advancements. Newer laws ensure their right to education and employment, which have made independence possible. No one tracks the number of such marriages across the country. "I don't know of any other couple with Down syndrome who have been married in Tennessee," said Sheila Moore, executive director of the Down Syndrome Association of Middle Tennessee. "This is very exciting for Bernadette and Josh. It's also very exciting for the Down syndrome community. It's gives us hope and excitement that individuals with Down syndrome are having more opportunities and living more normal lives than ever before." Bernadette Resha of Nashville and her fiancé, Josh Putman, of Mt. Juliet, seem unconcerned about being pioneers. They just want to be together. "I like Bernadette. I love her like a wife," said Putman, 25. "Every time I met her, her is a good person, a good athlete. And her is a good artist." Bernadette Resha responded to the kind words with a shy giggle and tenderly touched Putman's arm. "He is my very close friend, boyfriend," she said. "I like for him to support me and be a good husband." They had opportunities Advocates say that Bernadette Resha and Putman are part of the first generation of children with Down syndrome who have had opportunities to be educated and employed. Instead of living out their lives in an institution, they have been included in public schools. Their individualized education plans typically include employment training and instruction on how to live independently. "Prior to 1975, it was not mandated for children with Down syndrome to be educated," said Madeleine Will, vice president of public policy for the National Down Syndrome Association. "It's believed there were 1 million children with Down syndrome and other disabilities who weren't being educated." In the early 1990s, the Americans with Disabilities Act required that accommodations be made in the workplace when possible, and prohibited discrimination. As a result, "adults with Down syndrome are achieving more than ever before," Moore said. "They are graduating from high school. They are employed in our community." In addition, medical advances have dramatically increased the life expectancy of people with Down syndrome. Will said that in the 1980s, whites with Down syndrome typically didn't live to the age of 25. That compares with an average lifespan of 55 today. Down syndrome, caused by a chromosomal abnormality, comes with a host of medical conditions, including heart and digestive problems. "Now almost all of these things can be corrected," Moore said. While progress has been made, advocates say there are still many obstacles that people with Down syndrome face in getting married. Will said the primary problem is that people with Down syndrome who choose to get married will receive one-quarter less in Supplemental Security Income, a federal program that gives money to people with disabilities who have little or no income. "Sometimes they just move in together and don't get married because they can't afford it otherwise," Moore said. Putman and Bernadette Resha will receive $300 less each month in federal benefits. That means their parents will have to provide them with additional financial support. In addition to Bernadette Resha's income as an artist, Putman works part time bagging groceries at a Publix grocery store. It doesn't seem right to Bernadette's father, Louis Resha. "If you have a disability, you shouldn't be penalized for getting married," he said. Independence possible Putman was unaware of the symbolism, but he chose to propose to Bernadette on July 4: Independence Day. Once the two are married, they will move from their parents' homes and live independently for the first time in their lives in a Nashville apartment. Putman fondly remembers the day he asked Bernadette to marry him. It was in her parents' kitchen in the middle of a party. "I got my knee down. I said, 'I love you a lot.' I said, 'Bernadette, will you marry me?' " Putman recalled. "Bernadette said yes. Then Bernadette started crying. Then Bernadette's dad, Louis, started crying. That was a big happy moment." Putman and Bernadette Resha have been lifelong friends. They met at St. Bernard's preschool when Bernadette Resha was 5 and Putman was 2. But it wasn't until 1995, when Putman accompanied the family to the Special Olympics' World Gamesin Connecticut, that they "somehow saw each other in a different way," Gwenn Resha said. "I think their love for each other probably is more sincere than other people because their friendship just kept getting stronger and stronger," she said. They like to go out to eat, go to the movies, walk in the mall, spend time together — many of the same things other couples like to do. Like other couples, they are looking forward to getting married and spending their lives together. However, they aren't interested in having children. "No kids," Bernadette Resha said. "It's real hard to care (for) children. It's a big task." The two realize it will be hard enough to take care of each other. They are confident they can do it, though. They know how to clean the house, wash clothes, and do minor cooking. Their parents will regularly check in on them. "Our responsibility is, grow up. Be a young man and young lady," Putman said. "We together. It's nice together. Sometimes it's good and bad. We work it out." to view the video go HERE

World Special Olympics in China- Get it Down 31 for 21 : Post 3

Click on the button for more information on th Get It Down- 31 for 21 challenge! One of our local Special Olympians is in China for the World Special Olympics so I have been following it today. His name is Sam McNew and he is an awesome weight lifter. He was recognized by the House in Indiana. Go Sam! The 2007 Special Olympics World Summer Games will be held in Shanghai, People's Republic of China, from 2-11 October 2007. The event will mark the first time the World Summer Games will be held in Asia, and only the second time they will be held outside the United States I heard a news segment on CNN news and it was all agush about the huge turn out in China for the opening ceremony; how Special Olympics is such a growing event because intellectual disabilities are so more accepted now; more opportunities etc. How China is now accepting those with intellectual disabilities so that they aren't sent off to live in institutions. I just found this article on Wall Street Journal that states Over the past few days, Mr. Hu has been photographed spending time with China's mentally disabled population, praising people who work with them and promising more help. As recently as the 1990s, a senior Chinese leader said China had no mentally disabled. As in many countries, traditional values shamed families with disabled members. Many mentally disabled people were literally kept out of public sight, with some families not admitting to their existence. But attitudes are changing and the Special Olympics seem to have capped a turnaround in China, at least at the top. All I could think of was the fact that if this were so, if intellectual disabilities are so more accepted now that a World Special Olympics brings in more than 80 thousand to the opening ceremonies in a country that just started accepting those with intellectual disabilities and bringing them "out of the closet", then what in hell is happening in the US? We have had legislation on the books for more than 32 YEARS allowing children with disabilities to be educated among all students, yet we still struggle with our kids. We have had early intervention services in place for 32 YEARS and yet we can't find speech therapists or get appropriate medical assistance for our kids. And yes, the best of all, if the intellectually impaired are so more "accepted" now then why is the termination rate at 90% in the US and more detailed prenatal testing being pushed. Just doesn't make sense. Unless you consider the dichotomy we deal with every day. We have two visions. One from the medical community when there is a prenatal diagnosis and a couple of scared parents, and one from the public relations desk when those same kids are in classrooms, doing sports, and getting married. So we need to know how to get the PR into the medical community and this is more than just the GIFTS book. It has to be huge. I know part of the assistance will be with NDSS and NDSC combining forces which I hear is coming soon. So for now, enjoy the World Special Olympics. And Go Sam.