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.

First grade Spelling Word Test Week 2

ok I won't do this every week, but gosh darn it, Its my blog and I'll brag if I want to..brag if I want to........

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.

Brotherly Love

Source: Jul 10, 2007 Brotherly Love By Meredith Cummings Pulse Editor When Kayla Terry was about 4 years old, her mother, Teri, showed her a video. The video explained, in very simple terms, what it means to have Down syndrome, like her older brother, Ian. Her mother asked, "Now do you see how Ian is like the children in that video?" Kayla answered, "They both have bad haircuts?" Thus began Kayla's funny, heartwarming lifelong journey with Ian, who is almost exactly one year older than her. Kayla has put those experiences into a book, "An Every Day Inspiration: The Authorized Biography of Ian Terry," a project that started as an English class assignment at Tuscaloosa Academy. It has made the rounds in Tuscaloosa , and has even gotten into the hands of former University of Alabama head football coach Gene Stallings and country music superstar LeeAnn Rimes. "I thoroughly enjoyed the book and looking at all the pictures," Stallings said. "It was a wonderful book." The succe ss has taken Kayla by surprise. "At first, it started out as a grade," Kayla said. "Something I had to do. My mom really encouraged me to become more involved with it," she said. "I wanted it to be important to Ian, but I didn't realize that it would inspire other people." The book has served as inspiration for other parents of children with Down syndrome. Siblings of special needs people are often special and unique themselves. Kayla was one of the first students without special needs to enroll in RISE School to experiment the concept of "reverse mainstreaming," in hopes that she would blossom into a thriving child with leadership qualities and high character. Her mother said Kayla's experience with RISE has proved that theory to be correct. From sharing birthdays together to Halloween, the book details the adventures, ups and downs of the Terry family, which also includes another, younger brother, Stuart, and father, Johnny. "I feel like I put a lot of effort into it," Kayla said. "When it started going around and people started giving me compliments on it, then I was like, 'Hey I did a pretty good job.'" Photos in the book include the siblings dressed as Batman, Bat Girl and Robin for Halloween to, a picture of Ian dressed like Elvis Presley and a picture of Ian interviewing Stallings at a RISE golf tournament this year. "And what an outstanding job he did when he interviewed me at the golf tournament," Stallings said. Kayla's mother said that growing up, Kayla took a "willing backseat role" to Ian, not because she and her husband wanted it that way, but because she chose to put herself in the caretaker role. "The story of Ian's life so far is a tribute not only to his family and friends, but the community as well," Teri Terry said. "Living in Tuscaloosa has certainly opened doors and been beneficial to him. He has been lucky to have been accepted and supported by so many. I do not think any other community embraces the special needs community like Tuscaloosa ." Stallings agreed. "In some places, I'm sure, that's not always the case," he said. "I'm extremely proud of what Teri and her family have been able to do. The RISE program is a beautiful facility for the youngsters in Tuscaloosa. If you have a child with special needs, Tuscaloosa is a great place to be." Teri Terry said that anyone with a child with Down syndrome could look to Kayla's story as inspiration to have more children. "I forget he has special needs," Kayla said. "There were situations when he got a little bit older with bullies and stuff. But kids don't know how to act around people who are different. I took on a big sister role and he took on the little brother role instead of the other way around." Kayla's book says it best: "Alone, Ian may have been hesitant to explore or try new things, but with his sister at his side, he could do an ything." Kayla said that those early years, the two were joined at the hip, and were, and still are, best friends. "Before Stuart was born, we went everywhere together," Kayla said. "I can't go that long without hanging out with him because I miss him a lot." Ian has gotten the writing bug from his older sister, and said he now wants to write a book of his own. "He thinks he is such a star," Kayla said smiling. Jessica Robertson, Kayla's English teacher, said she enjoyed the book. The assignment, she said, was for the students to choose someone they admire to write about. Robertson said she read the book before she ever met Ian. "I enjoyed meeting him and I felt like I knew him," Robertson said. "The book was not only about him, but about their family and the struggle with having a special child. It seems like they have been so supportive." Kayla was on the staff of the TA student newspaper, Knightwriter, as well as the yearbook, Excalibur. The book, she said, took her the entire school year to complete. In the fall, Ian will attend Crossing Point at the University of Alabama, a program that teaches job and life skills. So while the siblings will see each other, it won't be quite the same. "I had to let him go," Kayla said. "I can't always protect him. It's scary to think about." Then she paused before adding, "But he can do OK on his own." Reach Meredith Cummings at meredith.cummings@tuscaloosanews.com or 205-722-0227.

Dallas Morning News letter to the editor

Virginia Arbery: Ending Down syndrome pregnancies bears all the marks of a pogrom 09:06 AM CDT on Sunday, July 8, 2007 The year Julia was born in New Hampshire, 1987, I was the only geriatric pregnancy in the state issuing in a Down syndrome child. When I recovered from the pediatrician's insult – I was 37 – I learned from him that the other nine mothers in the state to deliver Down syndrome babies were still in their 20s. I asked him why this was the case; conventional wisdom had led me to believe that the likelihood of giving birth to a Down syndrome child increased with maturity. When he told me that most woman over 34 usually had amniocentesis done to avoid giving birth to a Down syndrome child, I was stunned. After first being dismayed by – what to call it? – my demographic solitude, I soon turned my attention to what Down syndrome meant practically for my new infant. The books we quickly read, and the instruction from excellent social services helped us. Operating outside the realm of reason and structure were other powerful supports – call them graces. At the end of Julia's first week, I learned that a publisher friend of ours had lost his wife to colon cancer. We had known them since graduate school, and the widower came over to tell us that his wife gathered their eight children around her bed to pray for Julia and us every night of that first week. Even as she said goodbye to her own children and to the infant she had given birth to – an operation might have saved her and killed the baby inside of her – Susan was thinking about our challenge. I felt a liberating happiness over Julia, as did our little girls and their dad, for reasons too deeply private to explain. Julia's life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom. I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of "all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness." We were all working for that fullest expression of life and happiness for our babies. I thought about the "prudent" mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child. I will never forget Julia's first birthday with all her sisters around her. When we finished singing happy birthday, Julia put her hands together and clapped for the first time. Of course, we all cried on cue. Things that were so ordinary for the others became accomplishments – triumphs. Julia slowed us down, and, instead of waiting for each stage of development to naturally emerge, we would coax it along, beckoning it with intentionality and art. She taught each child an intelligence of the heart, and she began to teach me patience. Each member in our family could give a personalized account of his or her relation to Julia. Every daughter, for instance, has a perspective on her own vanity because of her. Julia expected to be 3 inches taller when she turned 16; I solved that problem by buying her 3-inch platform wedges. But often it's not that simple. For instance, on the way to school she will pull down the visor mirror, look at herself, and say, "When I get to heaven, my eyes are going to be like my sisters', and I am going to be 5-foot-11, and my voice is going to sound like Kelly Clarkson's." I tell her that God made her the way she is, that she wouldn't be Julia any other way, that we love her just as she is, and that she is beautiful. Of course, not everyone thinks that way. Some told me I should not make the same mistake twice – to have my tubes tied. I'm glad I didn't. Our one son was born after Julia, when I was 40, and our seventh daughter – now a sophomore at Ursuline – two years later. Our son just graduated from Cistercian Preparatory School. Over the past few years, he and his classmates have helped to organize the bi-annual Down syndrome Dance. Will's friends love Julia, and she shamelessly loves them back. They'll all be here at her 20th birthday party Tuesday. She will probably sing "Desperado," as she did at the recent graduation of two of her sisters, belting it out on key and bringing the house down. I understand that the American College of Obstetricians and Gynecologists is offering women a safer method than amniocentesis to determine whether a child has Down syndrome. The College makes the argument that it is more responsible to inform parents of their options beforehand so that they can decide whether or not to let the baby live. This argument shakes me to the core, for it bears all the marks of a pogrom – the license to be aggressive against the most benign population conceivable. Until now I have never been an advocate of special needs' issues. I have quietly reared my daughter and her brother and six sisters. But I can remain silent no longer. Twenty years ago, many of Julia's potential friends who are like her were intentionally eliminated, perhaps out of fear or perhaps out of a desire for a regular family with regular children. I think of those thousands of children who will never change those families for the better. They will never be at a Down syndrome dance, never hug their grandmothers, unafraid of their wrinkles or of people's imperfections. Who will love us as well, as simply, with such undesigning candor if we invent a world protected from our difficult blessings? Ironically, scientific work on turning off the additional action of the genes that cause cognitive impairment in Trisomy 21 now offers more hope than ever before, especially at Stanford School of Medicine's Center for Research and Treatment for Down Syndrome (dsresearch.stanford .edu). More research dollars are going into killing these children before they are born than into this noble project of helping them. And why? Because citizens value their freedom? Are my husband and I less free because we might have Julia with us our whole lives? Hardly. We would probably be enslaved to many more false notions of reality. In any case, we must trust that there will be a meaningful work and life for Julia. Maybe one of her sisters will take her in. Maybe she'll live in a group home. These are all decisions we will have to make as a couple, as a family and with Julia. These will not be easy decisions. One thing is sure, though: She is our defining blessing. How could we have known that in advance? To accept her full humanity is to accept our real selves in all our imperfections. My son put it well in describing how Julia likes to personalize her lead pencils, tapping them on the table top as they become characters in her daily life – at school or at home. We will sometimes hear ourselves oddly repeated in her animated version of our loss of temper or other foibles. In describing this game Julia plays, our son wrote that as she taps her pencil people, she taps into us. Virginia Arbery teaches in the Master of Humanities Program at The University of Dallas and is the mother of eight children. Her e-mail address is varbery@sbcglobal.net. ____________________________ Edited 7/10/07 I emailed Virginia Arbery that Monday morning with the following: As a mom with a child with Down syndrome, advocate and contributor to the new book Gifts: Mothers Reflect on How Children with Down syndrome Enrich Their Lives, I thank you for writing your letter that appeared in the Dallas Morning News. I am hoping articles such as yours, along with our Gifts book help in some way to assist those with prenatal diagnosis to see how our children are not a burden, and to let the new recommendation on prenatal testing go to the way side for some parents to be. Our goal is to have a copy of this book in every obstetricians office and every Ds Outreach and support group. Together maybe we can make a difference, as you already have with writing this article and having your child in the 1980's; paving the way for us. thank you again, and I hope you don't mind that I posted your letter on my blog. Jan Huffman, mom to Nash 6 Her response: No, No, not at all, Jan. Thank you for the important work that you are doing. For years I have been teaching college students and teachers political philosophy and literature. I have trusted that my teaching about natural law and valuing life would change the tide. I know that I have impacted my students through the works they have read, but in this article, I had to directly and publically face the assault on our children. I truly appreciate the work you have done and are doing and am humbled by it. Best, Virginia

Beyond The Diagnosis Part 4

Tonight on our local news channel in Indianapolis, WTHR, lead anchor, Andrea Morehead, conducted part 4 of her "Beyond the Diganosis" series. Here are parts 1-3 Here is the one tonight, which also promoted GIFTS. Welcome to the world Maison ! I requested that Woodbine send a copy of GIFTS to her and she emailed that she loved it. Thank you for showing the GIFTS of our children Andrea.

Why I contributed to the GIFTS book.........

This is why....to give one perspective. This is too what I believe Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child. Prenatal Test Puts Down Syndrome in Hard Focus By AMY HARMON Published: May 9, 2007 A group of parents are trying to present positive perspectives on having a child with Down syndrome.

A Wonderful Story- Leah of SigningTime and her Spelling Bee

Just posted on Signing Time's Rachel's Blog. Leah is in the fourth grade, totally included with an interpreter, and is profoundly deaf. What a wonderful story! Congratulations Leah! April 11, 2007 Miracle M-I-R-A-C-L-E Miracle Filed under: Crazy Little Thing Called Life — rachel @ 10:47 pm If anyone questions the benefits of early language acquisition, I invite them to take a look at this day. Today- April 11, 2007. Watch Leah’s Spelling Bee A few months ago, Leah told us that she was going to participate in the 4th grade Spelling Bee. This is her third year of being mainstreamed with an ASL interpreter. I was concerned about the 4th grade Bee, because many of the words have no signs and it would be cheating to have her interpreter fingerspell them to her. Leah was confident that she could memorize the words, the definitions and know how they are used in sentences. She came home one day and said she made it into the top 10. Now the top 10 fourth graders would compete with the top 10 fifth and top 10 sixth graders in the school Spelling Bee. Now I was really concerned. Could she hear the words well enough? Is this fair? Should I save her the embarrassment? I mean, those kids have been able to hear their whole lives. I still remember missing the word “magazine” when I was in my school Spelling Bee, I was in 4th grade. She practiced her words daily. I quizzed her. Lucy quizzed her. Aaron quizzed her. She even quizzed herself. She learned the definitions of BIZARRE and BAZAAR so she would not confuse them. I hoped she would not get cocky on words like FLOUR, only to find the word they wanted was FLOWER. This morning before school she was struggling with hearing the difference between INVISIBLE and INVINCIBLE. I was struggling to hear the difference between her “D’s” and “T’s” as well as her “C’s” and “Z’s.” Today was her school Spelling Bee. Leah has been a voracious reader for years now. I think when early intervention told us she would most likely graduate from high school with a 3rd grade reading level, simply because of her deafness, I was thrown into complete terror. Not MY child! When we started using sign language, she started reading – simply because not all words have a sign, many are just fingerspelled. By age 2 she was able to “read” a list of over 20 words that we commonly fingerspelled. She looked at them on the page, spelled them on her hand and told us what they meant. Leah quickly finishes her school work so that she can pull a book out of her desk and continue whatever adventure she had left waiting. She is currently reading the second Eragon book. Alex, my nephew, had similar early reading skills. He was being signed to at an earlier age than Leah. We only found out Leah was deaf when she was 14 months old. Alex was exposed to sign with his first month of life. Today as we headed out the door to her elementary school to watch the Spelling Bee, I asked Aaron to grab the video camera. He sort of looked at me… and I said, “It’s nothing short of a miracle that she can even compete in a Spelling Bee.” Her interpreter Kelli met us in the hallway. “I am SO nervous!” she admitted. She was standing by to interpret the instructions and possibly definitions if Leah needed her. Leah had excitedly realized yesterday that the top 3 winners would get trophies AND gift certificates to Barnes and Noble. Leah’s teacher fitted the microphone for Leah’s FM system on Craig Bolerjack, who was reading the words for the contest and pointed out Leah to him. She told Craig that Leah is deaf and she might need to see his mouth as he reads her words. As Leah progressed word by word, she was not searching Kelli’s hands or Craig’s lips for the answers. She was doing it on her own. Leah Coleman won first place in the school Spelling Bee today. I cried. Aaron cried. Most of the adults were brought to tears. She really worked for it. I am so proud of her!

Jeff in the News!

Jeff Huffman column: Celebrate a new holiday -- Disability Awareness Month Help, employ those with disabilities; making a friend easy as saying 'hi.' By Jeff Huffman March 23, 2007 When you think of March holidays, what do you think about? St. Patrick's Day? Spring break? Dr. Seuss' birthday? (It's true, Dr. Seuss' birthday is being celebrated this week at Goddard School, where our son attends after morning kindergarten at White River Elementary.) How about that Uranus was discovered on March 13, 1781? (OK, my wife Jan found that one.) But did you also know that March is Disability Awareness Month? And this celebration is one where you not only should mark your calendars, but you should also take action. If someone had asked me about Disability Awareness Month six years ago I would've told them I'd never heard of it. Now that I am involved in disability awareness, both professionally and personally, I realize, it's about "abilities" not "disabilities." Six years ago our journey commenced when our son Nash was born with Down syndrome. I sought out every bit of information I could and realized that what textbooks, brochures and Web sites left out were the personal connections -- the real people, the ones that experience disabilities daily themselves or through a family member. These experiences molded my perception. People who don't walk the walk and live the everyday life don't know, and it's up to those that do to let others know the needs, the wants, the possibilities, the desires. Today, individuals with intellectual and physical disabilities are open to a world of possibilities. That's partly due to the Individuals with Disabilities Education Act that has given children with disabilities the right to attend public school since 1975, along with the Americans with Disabilities Act which gives individuals with disabilities the legal right to pursue life, liberty and the pursuit of happiness, including employment. So it might surprise you that 80 percent of individuals with disabilities are underemployed or unemployed. As a country, a state and a community we have to fix this final roadblock. How can we do this? • Transportation is the No. 1 roadblock to employment, so continue to support Hamilton County's expansion of public transportation. • Encourage everyone that your family does business with to hire individuals with disabilities -- 89 percent of Americans prefer to do business with organizations that employ people with disabilities, according to a Gallup Poll. • Support school systems' efforts to accomplish great things for students with disabilities by supporting inclusion in classrooms and improving the transition process from school to work. Those are just three easy ways that we can begin to celebrate Hamilton County's first "Annual Ability Awareness Month." The easiest way to start is do what I try to do everyday: When I meet a new friend who happens to have a disability I just smile and say, "Hi. . . . " Jeff Huffman is president and chief executive officer of Janus Developmental Services.