RISE Rising in spite of expectations
A MESSAGE FROM THE FOUNDER
Dear reader, Over the years, I’ve met some AMAZING people from different walks of life who have made an imprint in my life with stories that touch my heart and move my soul. As a proud parent of two sons, one of which has Down syndrome (Ds), I am inspired daily by seeing him determined to overcome challenges. In these pages you’ll find stories of individuals who are making a difference in the Down syndrome community. Take a moment to read their stories, and then visit to their websites. Thanks to the committee members, sponsors and a huge thank you to you for taking time to check out RISE! I hope that you are as inspired as I am. Pass RISE on to your friends and family members to help us spread good news about Ds. I would love to hear from you and know what you think of this, the first annual RISE emagazine. Don’t hesitate to contact me at firstname.lastname@example.org. Be blessed,
Yvonne Pierre, Founder HYH Online Website: http://www.hyhonline.com
RISE RISE is an eMagazine shines a light on those who are making a difference in the Down syndrome community. The following pages consist of the recipients and nominees of the 2011 HYH Rise Awards. “Have Ya Heard? The Ability of Downs" (hyhonline.com) was a website launched in November of 2004 to showcase the achievements of individuals with Down syndrome by advocate, author and entrepreneur, Yvonne Pierre. Ms. Pierre is a proud mom of two, the youngest of which has Down syndrome. In 2005, the name changed to simply "HYH Online" and the launch of an online community for parents of individuals with special needs. Focusing efforts towards the HYH Rise Awards has emerged as the primary goal for HYH. The annual presentation of the RISE eMag published by Zyonair‟s HYH Rise Awards serves as a Unlimited, LLC 2011 © All Rights Reserved platform not of competition, but to visit www.zyonair.com recognize and show appreciation of the efforts of advocates and selfLayout design by Yvonne Pierre advocates, parents, non-profit organizations and others that make Edited by Steffan Cooks a difference in the special needs community. Nominations began in January of 2011, with the public being allowed to vote a month later. The awards were conveniently held online. With over 13,000 voters and nearly 25,000 votes - on March 21, 2011, winners were announced to coincide with this date being recognized as World Down syndrome Awareness Day. For more information, visit, www.hyhonline.com.
The 2011 HYH RISE AWARDS recipients areâ&#x20AC;Ś Patricia Moody Dr. Jamie McClintic Gina F. Rowland Elizabeth Newton Brett Banford Sujeet Desai Leaps N Boundz Oana Bogdanescu
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A special thanks to our sponsors for their time, resources and support!
THE RISE AWARD RECIPIENT
PATRICIA MOODY SELF-ADVOCATE | SIGN LANGUAGE TEACHER Nominations: The Rise Award and Rising in Entertainment
is a board member of the National Down
Syndrome Congress and her local ARC. As a teenager, she began to teach herself sign language and while growing a passion for it she decided to make teaching sign language her career. She is now fluent in American Sign Language (ASL) and is self-employed as a teacher of ASL for nine classes in Florida. Patricia regularly speaks at conferences and meetings where she discusses her life with Down syndrome and how to advocate effectively for people with disabilities. In addition to her bubbly personality, she has a beautiful talent of singing, which she combines with interpretive signing. Patricia lives in Vero Beach, Florida with her parents. She has a special bond with her grandmother who believed in her abilities. Her grandmother taught her how to read and write. In the 3rd grade, Patricia was fully included in her neighborhood school and graduated from Sebastian River High School in 2003. Patricia worked for three years as a classroom aide in public schools. She said, “I worked with students who had disabilities and the kids called me „Miss Moody.‟ My hobby and my passion is sign language. When I was a teenager I began teaching myself to sign by reading American Sign Language books and watching DVD‟s. I loved sign language so much that I wanted it to be my career. In 2007 the National Down Syndrome Society awarded me with a college scholarship and I took ASL II and I and made A‟s in both classes.” Music is a very important part of Patricia‟s life. She performed the National Anthem for several Special Olympics state competitions. She also sings and signs at her church. In 2007, Patricia was the keynote speaker for the Down Syndrome Association of Central Florida. She said, “I am proud to be an advocate for people who have Down syndrome. My friends at the NDSC conventions are so special to me. I am so happy that I got to teach sign language at the workshops. We all had fun together. Making friends and having fun is what I am all about.” Read more about Patricia Moody at http://www.ndsccenter.org/selfadvo/council.php
RISING VOICE AWARD RECIPIENT
DR. JAMIE MCCLINTIC PROUD MOM | OCCUPATIONAL THERAPIST Nominations: Internet Impact Award and Rising Voice
YVONNE PIERRE: Before we get started, I would like to say congratulations on being nominated and being the 2011 recipient of the Rising Voice Award, Dr. McClintic. DR JAMIE MCCLINTIC: Thank you to everyone who participated and voted for my “Rising Voice!” I am honored and blessed to have so many followers as my husband and I embark on this new journey. The greatest thank you of all goes to our daughter, Maddox Lucille, for teaching us that all things are possible. YVONNE: Prior to giving birth, you were already a licensed and practicing Occupational Therapist. So, were you already familiar with Ds?
to doubt my ability to handle my situation because of the difficult road that lies ahead. Now, almost two years later, I definitely believe the advantages of knowing about Down syndrome outweigh the disadvantages. YVONNE: As you stated you are typically with special needs children. But after becoming a parent yourself, what would you say changed within you the most when working with patients and their parents? DR. MCCLINTIC: After becoming a parent of a special needs child, the experience has definitely allowed me to take my practice up a notch by being able to relate to individual situations, provide real time advice, and a level of compassion that speaks more than words.
DR. MCCLINTIC: I was extremely aware of what Down syndrome was prior to the birth of our daughter Maddox. I was in the field working up close and Down syndrome is the most commonly occurring personal with special needs chromosomal condition. One in every 691 babies is born children every day. I was the with Down syndrome. – National Down Syndrome Society (NDSS) therapist helping parents through their difficult time, rehabilitating YVONNE: As a parent and therapist, what their child, scheduling appointments, and tips or advice would you like to share with connecting them with resources. I was not parents? supposed to be on both sides. Being knowledgeable about Down syndrome had its advantages and disadvantages. The advantages are obvious. Because of my background in special education law, student rights, early intervention, rehabilitation, and navigation of the medical community I was able to one of the greatest advocates for our daughter. Unfortunately the disadvantage of knowing too much disconnected me from Maddox when she was a newborn. I was not able to fall instantly in love with our newborn and did not bond because my mind was too busy thinking about all the worst-case scenarios I could possibly encounter. I began
DR. MCCLINTIC: You hear this advice over and over, “You are your child‟s best advocate.” This can‟t be stressed enough. You are the voice for your child and his/her destiny depends on expectations you and those around you set. As a parent you must dream big, set your standards high, and never ever stop believing. YVONNE: What is the most challenging part of having a child with special needs and how have you managed to overcome it? DR. MCCLINTIC: The most challenging part of having a child with special needs for
me personally is the fact I that I work with special needs everyday day. I am a therapist by day and a therapist by night, 24/7. I sometimes try to squeeze being a mom in between and it gets really tough separating your feelings at home and at work. My days and my profession run together with no emotional break. I am not sure I have overcome the difficulties that result from my position, nor that I ever will. In time I will learn to positively balance the two professions and become the very best I can at each. YVONNE: What life lessons learned from your daughter? DR. MCCLINTIC: Oh gosh, the most important lesson I have had is not to wish away time. When Maddox was born, I wanted so badly for her to be three months old so she could smile back at me. I just knew that would make our bond better. But when she was finally three months old I wished for her to be six months so that she could sit up and interact, I thought I would love her more then. When she was six months I wanted her to be nine months so she could crawl thinking that a mobile baby would solve my bonding issue. When that time came, I wanted her to be one year so I could see her walking and talking. Wishing for the next step never helped me get to my destination of acceptance any quicker; it only forced me to fast forward precious moments I will never get back. Please, even if the road is long and difficult, remember to dig deep within yourself and find the beauty of the situation you have been handed. I promise you wonâ&#x20AC;&#x;t regret it. YVONNE: What is the overall message of your advocacy?
DR. MCCLINTIC: From the moment I decided to go public with my blog, my goal was to be truthful. I wanted to be able to share with readers both the gloomy days and glorious days. I never wanted to sugar coat my experience, I wanted readers to relate and grow with me. I know my final destination will be great; I am not going to skip right to the end because other people think I should. I am going to take the time to heal and share my every experience with you. During the past two years I have blogged about my life as it crumbled to pieces and you have been a part of the rebuilding process. I can now say with confidence that I have a sturdy foundation and even though I hit rough patches here and there, life continues to be fulfilled in more ways than I ever imagined. Basically I want people to know that even with pure devastation, in time, with the right resources, you can prevail. Anything is possible and the road less traveled may be even more rewarding than the path you intended to take. For more about this topic please read: http://www.mcclinticfamily.com/McClintic_Famil y/Blog/Entries/2011/5/18_The_road_not_taken.ht ml
For more information about Dr. Jamie McClintic, visit www.mcclinticfamily.com. Or send an email to email@example.com ** Please title the subject in all capital letters: TRISOMY 21 **
JAGATJOTI S. KHALSA Nominations: Rising Voice and Rising in Entertainment
HYH RISE NOMINEE JAGATJOTI S. KHALSA
is the author of Altar Your Space, a guide to
the restorative home and a photography book, I'm Down with You, which features the beauty and lovingness in the eyes of those with Down syndrome. I’m Down with You will take you on an inspired journey with the people of the Down syndrome community. With the gift of an extra chromosome, they are in fact not “disabled” but “abled” – with the ability to love without hierarchy, have strong self-esteem and impact everyone they touch with an uplifting spirit found too rarely in our world these days. I‟m Down with You features over 100 portraits of individuals ,families and friends as well as essays by Betsy Goodwin, NDSS Founder; Sharon Stone, Actor and Activist; Anthony Shriver, CEO and Founder of Best Buddies; John McGinley, Actor and National Spokesperson for Buddy Walk; and Jagatjoti Khalsa, photographer and creator of I‟m Down with You.
For more information, visit: http://imdownwithyou.com and http://www.theotherpersonisyou.org
RISING IN ENTERTAINMENT AWARD RECIPIENT
GINA F. ROWLAND PROUD SISTER | AUTHOR Nominations: Rising Voice and Rising in Entertainment
YVONNE PIERRE: Congratulations, Gina, on being nominated and being the 2011 recipient of the Rise in Entertainment Award.
for little things, big things, imagined things and the harsh reality of it all. I try to breathe often, deeply and slow.
GINA F. ROWLAND: I just want to say it was an honor to be in such good company of so many wonderful people.
YVONNE: What is the greatest reward? Briefly explain.
YVONNE: Tell us a little about and what inspired you to write, “For the Love?” GINA: Simply stated, my amazing sister Sarina. I wanted to be able to share her light, in hopes that it would shine positively on others and have the same affect it has on me. I wanted society to see her as I do - pure sunshine even in the darkest of days. YVONNE: As a sibling of an individual with Down syndrome, over the years what would you say the greatest challenge? GINA: As a sibling of someone with Down syndrome, there are many challenges both positive and negative .But, what I once thought negative, turned out to be a positive, and so it continues to ebb and flow. We are always learning more about each other and ourselves, we‟ve been on a journey. I think finding balance in both our lives in a challenge we face on a continual basis. Time for our lives separately and time together can be tricky. It‟s not just sister time, all the time. It‟s meetings, paperwork, teaching, overseeing and organizing. Dealing with a system that we are grateful for and rely on to assist and care for her comes with its own set of challenges and frustrations. I worry about her constantly
GINA: My greatest reward? Well, where do I start? Sarina has molded my heart, my spirit, and my way thinking. She has taught me lessons of love, compassion and strength. She has guided by career path, has made me a much better social worker, and therapist than I thought possible. She fills my soul and prepares me for the impossible possibilities. She is, at times, my rock on which I lean and the current in which I ride. She has helped me find my voice and be able to speak it with confidence. She helps keep my heart open and for that I will be forever grateful. I laugh louder, smile wider and think way out of the box because of her. YVONNE: Why was it important for you to share your story in “For the Love”? GINA: I think I needed to get it all out, put it all down, and see where it would go- who it would reach and what it would mean to people who read it. I initially wrote it as a healing tool for myself but in sharing it with others and getting the feedback I experienced the most incredible healing feeling that I couldn‟t have imagined. I will be always humbled by that. YVONNE: What life lessons have you learned from your sister?
GINA: That is a book in itself. She has taught me not to judge even whilst being judged. She has shown me what is most important in this world; not things or money but love and kindness for all people. I have learned while you are helping yourself along in this life, the road is sweeter when you help others along the way. While I thought I was helping her, all the while she was helping me. It took years to realize that, but I have and so lesson learned! I learned to never underestimate someone even when you think you know their abilities. I learned life is better when you are kind to yourself and to those around you and the energy you put out there comes back so you best make it positive! YVONNE: What would you like to share with individuals who have siblings with special needs? GINA: Not all families are the same but the common bond is strong. We will not all have the same experiences but we may all feel the same way. We will all learn our lessons in differently, at different times but we will all learn them one way or another. I would like to share that we are not alone in our strong thoughts and our feelings. Siblings of those who are different have such a special bond that we find each other across the countries and over the seas. It is very important to find that support in each other, to bounce off ideas, lets off steam and ease any guilt we all have. Emotions run strong and deep for siblings it‟s a bond that parents can‟t even grasp. It takes another sister or brother to understand and relate to all we experience in our roles as teachers, models, friends, protectors and guides. YVONNE: What is the overall message you want readers to gain from reading your book?
GINA: I want my message to be clear that people like my sister are not dis-abled people to be pitied, or shamed. People like my sister, have different-abilities and if given the chance can make a positive impact in this world. I would like people who read my book to walk away with different eyes about those of us who are different. My sister just wants what everyone else does; to be productive, to be respected and above all to be loved. I want her
Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes. – NDSC
and others to be given that chance with dignity. YVONNE: Before we go, what additional comments would you like to leave with us? GINA: I feel the tide turning in how this country views our loved ones who hold such wonderful differences. I sense less tolerance for ignorance and I am grateful for that. We have come a long way, but we have so much further to go. Together we can and have made a difference. I am much honored to be a little part of that. I hope the rest of the world catches up soon so we can all stand together. For more information, visit Gina F. Rowland on Facebook. Purchase “For Your Love” on Amazon.com at http://www.amazon.com/Love-Gina-FavazzaRowland/dp/1453658726/ref=sr_1_1?ie=UTF 8&qid=1318979688&sr=8-1 or on CreateSpace eStore: https://www.createspace.com/3464508
GLORIA HUERTA Nominations: Rising Voice and Advocacy Impact Award
HYH RISE NOMINEE GLORIA HUERTA is a proud mom who launched a group many years ago because she never wanted her daughter, Gloria Jr. who has Down syndrome, to be without any friends. She started out small, with just a few parents coming to her tiny apartment, her group continued to grow and grow into a huge support group. "I only wish that I had found such an organization for myself and my son, Ryan," said Gloria. "I know he would be surrounded by many friends and have countless activities to do." Gloria and her daughter also volunteer through their church with Comforts of Hope Homeless Outreach to feed homeless people. It is called Comforts of Hope Homeless Outreach. What an amazing woman she is. She also reaches out to pregnant Mom's who are carrying a Down syndrome baby. I am sure she has saved many a baby's life with her uplifting advice and encouragement. Everything she posts is so uplifting and positive. If only I had known her when my son was born, it would have saved me countless years of worry and heartache. I have met many women in my life who have DS children but I have to say she is my number one person I can turn to at anytime for advice. For more information, visit: http://www.sonomacountydownsyndromesupport.org/ and http://www.facebook.com/comfortofhope
ADVOCACY IMPACT AWARD RECIPIENT
ELIZABETH NEWTON PROUD MOM, SISTER | BLOGGER Nominations: Advocacy Impact and Internet Impact Award
YVONNE PIERRE: Elizabeth, congratulations on being nominated in two categories and being the 2011 recipient of the Advocacy Impact Award.
adopt a baby with Down syndrome. I grew up around individuals with special needs and that was truly my comfort zone. I realized that the prospect of parenting a child with a disability intimidates many people but because I grew up with Leanne, I knew I could do it and I knew what a blessing it would be.
ELIZABETH NEWTON: Thank you! It is a privilege to be involved with the HYH platform and to be recognized for my family‟s involvement in empowering the special needs community through our blog, Confessions of the Chromosomally Enhanced. Every single nominee has an inspirational story and it is so rewarding to be included among such an esteemed group with so much to offer.
I have a wonderful husband who has always accepted Leanne and loved her unconditionally so he was very receptive to the idea as well. We talked about the plan in an abstract way for years and finally, on my 29th birthday, my husband said “Adoptions can take years. If we‟re seriously going to do this, we better get the ball rolling.” So we found an adoption agency and registered with the National Down Syndrome Adoption Network in January 2010.
YVONNE: You have an amazing story. Not only are you a proud parent of a child with Down syndrome, you’re also a proud sister. Growing up with an older sibling with special needs, what impact would you say your sister had on your life?
While we had anticipated the adoption process to take years, it took only 3 short months before we were matched with Josie. Her birth mother had contacted the National Down Syndrome Adoption Network and selected us based on our profile information and a letter we had written about why we wanted to adopt a baby with Down syndrome. We were caught off guard by how quickly things happened but we knew it was meant to be.
ELIZABETH: My sister, Leanne, is the single most influential person in my life. Leanne enabled me to see the world through the unique perspective of an individual with a disability and because of this; I realized the importance of compassion and acceptance for people who are different. I also learned to focus on one‟s abilities instead of their limitations because when you grow up among the special needs community, you realize how much these individuals have to offer and how Leanne and her peers truly enhance the world we live in. YVONNE: Having a sibling with Down syndrome and seeing the challenges that she faced, how did you come to the decision to adopt a child with DS? ELIZABETH: Because my sister, Leanne, has always had such a positive impact on my life, it was not a stretch for me to decide to
YVONNE: What inspired you to share your story online and could you tell us about your blog? ELIZABETH: The blog, Confessions of the Chromosomally Enhanced, was launched initially as a way to keep friends and family updated on our daughter, Josie. It was also a cool way to document the special relationship between Josie and her Aunt Leanne. However, shortly after launching the blog, I started receiving emails from all sorts of blog followers from all over the world asking me questions and telling me that they really appreciated following our journey. The most common topic I received emails about was the sibling dynamic and what it was like to grow up with a sister with Down syndrome. I never realized what a tremendous concern this was for new parents of a child with Down syndrome. Many parents told me how they feared having a sibling with Down syndrome would negatively impact their other children. Discovering our family blog had truly alleviated this concern for many parents and had changed perspectives because they realized that Leanne had a very positive effect on me – so much so that I decided to adopt a baby with Down syndrome. Once I realized the impact the blog was having, I felt so inspired to continue to document our journey and to provide an honest portrayal of Down syndrome. I also realized that through this blog, I could be an advocate for individuals with Down syndrome by countering all of the negative information available with an encouraging perspective. New parents are inundated with negative messages about Down syndrome so it is important to provide them with a source of encouragement and reassurance.
YVONNE: What life lessons have you learned from both your sister and daughter? ELIZABETH: I‟d like to use this question to highlight some of the most popular blog posts and inject humor into our story because humor is a key feature of Confessions of the Chromosomally Enhanced: Leanne dispenses advice on professionalism in the workplace: http://confessionsofthechromosomallyenh anced.blogspot.com/2010/11/leanne-gotpromotion.html Aunt Leanne’s Philosophy to live by: Honesty is the best policy: http://confessionsofthechromosomallyenh anced.blogspot.com/2011/04/when-youcare-enough-to-send-brutally.html Josie learns from the best- how to extrapolate the most attention from any circumstance: http://confessionsofthechromosomallyenh anced.blogspot.com/2011/05/skills-andacting-abilities.html Self Talk: When and where this little habit is appropriate according to Aunt Leanne: http://confessionsofthechromosomallyenh anced.blogspot.com/2011/04/hyveeheartbreak.html
In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities. - NDSC Advice from Aunt to Niece – For every action, there is a consequence: http://confessionsofthechromosomallyenh anced.blogspot.com/2010/08/bad-girlanother-email-from-leanne.html
YVONNE: Coming from a perspective of a parent and sibling, what tips or advice would you like to share with other parents who just learned that their baby has DS? ELIZABETH: I want to assure parents that God makes individuals with Down syndrome purposefully. They are vibrant, capable people who are full of promise. It may not be what you were expecting but it is not a mistake; it is a blessing. Your eyes are about to be opened to a whole new world you will come to know that you are fortunate to have been given this unique opportunity to view life through a whole new perspective. Down syndrome is not without its challenges but parenting any child has challenges. However, all you need is a heart full of unconditional love and you are more than equipped to embrace the blessing that has been presented to you.
syndrome can lead abundant, meaningful lives and are fully deserving of inclusion and rights. I want my daughter to grow up with every opportunity to maximize her potential and achieve her dreams. If we can teach the world to value her contribution to society, her life will be enriched as will the lives of everyone she comes into contact with.
YVONNE: What is the overall message of your advocacy? ELIZABETH: It's important that society recognizes that individuals with Down
For more information visit â&#x20AC;&#x153;Confessions of the Chronically Enhancedâ&#x20AC;? at http://confessionsofthechromosomallyenhance d.blogspot.com or email DualDownsDivas@gmail.com
MEDIA IMPACT AWARD RECIPIENT
BRETT BANFORD SELF-ADVOCATE | SPEAKER | DANCER Nominations: Advocacy Impact, Media Impact and the Rise Award
YVONNE PIERRE: Congratulations on being nominated and being the 2011 recipient of the Media Impact Award, Brett. BRETT BANFORD: Thank you for picking me to be the winner. I want to thank all those who have nominated me and voted for me. I hope you can be inspired by all the things I am doing.
Down syndrome three days after his birth, when I finally came out of the anesthesia. My reaction was “what is that?”, “why do you think that?” When I was told, “Because he has a pressed nose bridge, slanted eyes, and short stubby hands”. My response was “that is because you haven‟t seen a Turkish baby before, look I have short stubby hands too”.
YVONNE: How old was Brett when you YVONNE: Brett, you’ve traveled the world to learned that self-advocacy was something that spread the message of awareness for Down syndrome. Why is it important that advocates like yourself continue There is wide variation in mental abilities, behavior and to raise awareness? physical development in individuals with Down syndrome. BRETT: Advocacy is important to me so that people with disabilities of this and future generations can be accepted in this society.
Each individual has his/her own unique personality, capabilities and talents. - NDSC
YVONNE: What would you like to see changed for individuals with Down syndrome? BRETT: I would like to see the use of the Rword (retard/retarded) outlawed in Hollywood movies and television shows. Don‟t be a bully! Have tolerance for others. YVONNE: What is the most challenging part of being an advocate and how do you overcome it? BRETT: When I travel to other countries like Russia, not being able to speak and understand their language. Sometimes I get nervous before I get on the stage to speak but I overcome it by taking in deep breaths and slowing down on my words. YVONNE: When you first learned that Brett had Down syndrome, was it before or after the pregnancy and what was your immediate reaction? GULER BANFORD: Because Brett was delivered by C-section, I was told he might be
he wanted to do? GULER: At first it was when I noticed him comforting his peers on our Special Olympics team, Dyno-Stars at around age 10. But then when he auditioned for “So You Think You Can Dance” in February of 2008 at age 25, it became very clear when he spontaneously told the judges on national TV “he was there to represent people with disabilities and that they could have a normal life and live it”. YVONNE: What life lessons have you learned from Brett? GULER: I have learned to never underestimate the abilities and wisdom of people with disabilities. He has blown me away many a times with his wisdom and diplomacy in handling different situations.
YVONNE: What message of advice and hope would you like to share with parents? GULER: Actually I am amazed at all the great things other parents are doing and cannot really give much advice, but maybe to say never be ashamed or embarrassed to allow your disabled child to try anything and everything. Youâ&#x20AC;&#x;d be amazed at what they can do and teach others. Brett inspires many people in numerous ways. Let them speak their minds. Be cautious about what the doctors say about Down syndrome pregnancies for they have been proven to be wrong many a times. I know many people who have been told they are pregnant with a Down syndrome child and to abort them, but at the end when the baby is born they find out the baby is NOT Down syndrome.
For more information, visit www.brettbanford.com
NDSS - MY GREAT STORY Nominations: Advocacy Impact Award, Internet Impact Award and Media Impact Award
HYH RISE NOMINEE The
MY GREAT STORY campaign seeks to ignite a new way of thinking
about people with Down syndrome by showcasing and collecting inspirational stories told by people with Down syndrome as well as their family members, friends, colleagues, employers, and many others. All are invited to visit www.ndss.org /stories to share their story, and read, vote and comment on those in the collection. The online storybook contains several different categories including school, work, hobbies, travel, friends, and many others. Two of the stories have been turned into print ads titled „The Traveler‟ and „The Public Speaker.‟ They were shot by well-known photographer, Zachary Scott and have been featured in media outlets across the country. The My Great Story public service announcement stars TV Hosts Meredith Vieira and Nancy O‟Dell, and Actors John C. McGinley and Chris Burke.
For more information, visit: http://www.ndss.org
INTERNATIONAL IMPACT AWARD RECIPIENT
SUJEET DESAI SELF-ADVOCATE | MUSICIAN | SPEAKER Nominations: The Rise Award, International Impact, and Rising in Entertainment
YVONNE PIERRE: Congratulations, Sujeet, on being nominated in three categories and being the 2011 recipient of the International Impact Award. SUJEET DESAI: It‟s an honor and thank you first for nominating me for 3 categories and then selecting for one. YVONNE: You play many instruments. Which one is your favorite? SUJEET: I play 7 instruments , Bass Clarinet, Bb Clarinet, Alto Sax, Violin, Piano, Drums & Trumpet Bb Clarinet is my best & favorite instrument but also love jazz to play on Alto Sax YVONNE: What do you love most about travelling around the world & sharing your talents? SUJEET: I travel with my both parents so I love family time. As I don‟t get much time during weekdays. Secondly it‟s fun but educational to travel by air. I love the food, the customs, security; luggage pick up every country new airport, new rules its exciting. Third & most important I make new friends. We met parents of children & adults born with special needs and love to listen to their stories and share my story .To help them is my passion & mission They become life time friends !!! YVONNE: Throughout your life, what has been the most challenging and how have managed to overcome? SUJEET: When people have made fun of me, teased me, gave strange look and have taken advantage of me because I could not speak for myself. (Self advocate)
I learned from my mistakes. My parents did advocating for me when I was in school till I went to academy where I remember what my parents taught me to take care of me away from home . Also I decided to work hard on different skills I have to compete and earn high levels where people understood that I can make it like anyone else and started respecting me. YVONNE: As Sujeet’s mom, what has been the most challenging and how have managed to overcome? DR. SINDOOR DESAI: Sujeet is always either underestimated or overestimated. Underestimation because of his diagnosis “Down Syndrome” or because of his lack of self advocacy. Usually people do not have time or patience to listen what he has to say and misunderstand & misinterpret him, take advantage of his weaknesses, put words in his mouth, being dishonest with him leaving behind lifelong hurt causing much confusion about the word “HONESTY” Overestimation because of his high achievements in music & various sports and clear speech, which misleads his support staff & program director causing Sujeet lose many benefits which he would otherwise be eligible. YVONNE: What words of encouragement would you like to give to new and/or existing parents who might struggle to cope up with having a child born with Down syndrome? DR. DESAI: Parents are the best teachers of their special child since they watch them day & night growing & going through various phases of life .They must listen carefully and learn from what their child has to say and their children will lead them to their needs & resources .( Please refer my remarks at the end for new & young parents )
YVONNE: What is the overall message of Sujeet's advocacy? DR. DESAI: Sujeet does musical PowerPoint workshops /motivational speaking sending various messages that he learned through his own struggles & hardship to get where he is today living an independent life in his own home .He uses popular Broadway music to send messages like: Tomorrow from Annie - Work hard without giving up and you will have a bright tomorrow Mission Impossible - Improvise your life with Multiple Intelligence your Abilities. Given opportunities individuals with disabilities can Make It Happen and Make their mission possible. Beauty & the Beast - One should not judge a person them by their look but see the beauty within and believe in their abilities. Wind beneath my wings - All they need is good support service plan& community acceptance. These become the wings beneath their wing so they can fly high. YVONNE: Dr. Desai, is there any addition information or tips you’d like to leave with us? DR. DESAI: As a Mom for 30 years advocating and continue to still advocate for Sujeet I started 5 years ago and on line support group Global Connection – Asian Parents Group on Yahoo, for Asian parents of children born with Down syndrome to help parents with worldwide resources. While sharing the GOOD resources she also learned herself about many myths that younger parents
believe (and so did she herself when Sujeet was young!) .She would like to worn the young parents about these myths. Today‟s medical & educational advances there are at time too many promising therapies like Mega vitamins, stem cell misleading hopes to cure for Down syndrome in which young parents get trapped. You cannot change the map of chromosome (genetic) pattern in individual born with Down syndrome .All you can do is to improve the quality of their life which comes by educating yourself by good resources & basic therapies like OT,PT & Speech. Ignore that you do not believe in or does not apply to your child. Most of all parental involvement in our children‟s life to prepare them for real world is very essential .Focus on long term goals of life skills rather than worrying about their looks & IQ scores in school years. Life time Parent advocacy for our children is critical & essential part of our children .Join support groups of parents to educate you and then share that with your Childs medical, educational and support services. Since they directly work with your child for their individual needs & benefits. Teaching them to SELF ADVOCATE is almost important so they are not taken advantage (or Bullied) by others.
For more information about Sujeet, visit www.sujeet.com
AIKYA Nominations: International Impact, Internet Impact and Rising in Sports Awards
HYH RISE AWARD NOMINEE AIKYA Centre for Children with Special Needs was launched in September 1989. The centre first functioned once a week. Within four months, in January 1990, a regular Day Care Centre (special school) was established. Parents of babies from 3 months age are trained at AIKYA and programs are charted out for them to carry out on their own at home. Progress of these babies is evaluated and further programming is given subsequently every two months. AIKYA is also involved very actively is conducting seminars/workshops for dedicated workers/parents to equip the trainee in effectively handling special children. Field placement of postgraduate students of psychology of reputed colleges in Chennai is also a regular feature at AIKYA. To create awareness among the public, AIKYA has produced a number of video films on mental disabilities. They have been well received at the state as well as national levels. AIKYA has also produced and marketed 'AIKYA Greeting Cards'. For more information, visit: www.aikya.org
RISING IN SPORTS AWARD RECIPIENT LEAPS N BOUNDZ NONPROFIT
YVONNE PIERRE: Congratulations to Leaps N Boundz on being nominated in two categories and being the 2011 recipient of the Rising in Sports Award. LEAPS N BOUNDZ: Thank you to everyone for showing their support in voting for Leaps n Boundz. It just goes to show you that our community is strong in both numbers as well as support (which was one of our primary goals in the development & creation of the Leaps n Boundz programming) YVONNE: What inspired the launch of Leaps N Boundz? LEAPS N BOUNDZ: Our strongest inspiration came from that of listening to parents and their desire to be a part of something. Somewhere for them to go and feel safe, included as a whole family, and to build and create lasting friendships as individuals, as a couple and for their kids. To build a community of direct physical support for the participants, emotional support for everything they encounter/endure/persevere through and to be welcomed unconditionally. That is what inspired the both of us to create Leaps n Boundz! YVONNE: In your words, how important is adaptive programs for special need children? LEAPS N BOUNDZ: Adaptive programs are in so much need throughout every community. Not every child can succeed in typical athletic programs. Adaptive programs give those who need more assistance then others, the opportunity to feel included rather than excluded, and provide each participant the ability to feel a sense of accomplishment, selfconfidence, and team work amongst many other benefits.
YVONNE: Your organization is primarily based in California. Are there plans to expand into other areas? What about those who are not in the California area? Are there still ways they can become involved with your organization (i.e. online or resources)? LEAPS N BOUNDZ: Leaps n Boundz does not have any plans at the moment to cross state lines, however we do have a 501c3 Foundation that does have programming outside of California, in which families and children can participate in those programs. Leaps n Boundz also offers benevolent assistance to those families who cannot afford recreational programming through the Leaps n Boundz Foundation; The LNB Foundation believes every child deserves to have fun and that children with special needs are entitled to and benefit from the same recreational opportunities as all other children. The foundation provides physical experiences and social opportunities to children with special needs, thereby creating a supportive community, helping to build friendships, and promoting physical and mental strength.
For more information, visit www.leapsnboundz.com. You can also find them on Facebook at https://www.facebook.com/home.php#!/pages/ LeapsnBoundz/98757269920 and on Twitter @ leapsnboundz
INTERNET IMPACT AWARD RECIPIENT
OANA BOGDANESCU SELF-ADVOCATE | SPECIAL OLYPIAN Nominations: International Impact, Internet Impact and Rising in Sports Awards
Oana brother, Razvan, will be the interviewee because Oana speaks Romanian and does not speak English.
YVONNE PIERRE: Congratulations to your sister Oana on being nominated in three categories and being the 2011 recipient of the Internet Impact Award. RAZVAN BOGDANESCU: It was an interesting to participate to the HYH RISE AWARDS. We start with a small film with Oana, a film about her activity. It was a surprise for us when she was nominated, and also when she receive Internet Impact Award. The important thing is to try!!! YVONNE: Razvan, you are very supportive of your sisters advocacy, how important to you is advocacy for special needs? RAZVAN: Persons with special needs need the support of their family. Whit the support they can became independent and they can have a normal life. And the can bring a change and make a difference in the community for other persons with special needs. YVONNE: Being a sibling of an amazing woman who happens for have DS, what life lessons have you learned from you sister? RAZVAN: I like what one of Oana friend (Mary Wasserman) said: “There is no greater challenge than to challenge yourself.” YVONNE: What are some things you wish people knew about your sister?
RAZVAN: She likes to use the computer for internet and mail, she likes to talk with she‟s friends on the internet and mail. She likes to read books, and her favorite book is Heidi by Johanna Spyri. YVONNE: What has been the most challenging for Oana and how has these challenges been overcome? RAZVAN: Her heart surgery, at 8 years old. She overcame this with the help of the doctors and the support of her family. YVONNE: What tips or advice would you give to siblings of an individual with special needs? RAZVAN: To treat them like normal people, to support them in all cases with love. YVONNE: What is the overall message in Oana’s advocacy? RAZVAN: All the persons will Down syndrome are champions of destiny and geniuses of universal love.
Check out Oana on Facebook at https://www.facebook.com/profile.php?id=100 002502583571.
PARVATHY VISWANATH Nominations: Rising Voice Award
HYH RISE NOMINEE PARVATHY VISWANATH
is a qualified
Special Educator with 20 years of experience in the field of Special Education. She has trained several hundreds of mothers and babies (0-3 years) with developmental disabilities. She has worked with students (with Autism, ADHD, Down Syndrome and Learning Disabilities) of age 3 - 18 years teaching functional Academics and Vocational skills, established a sheltered workshops for them successfully. She has presented papers at National and International Seminars, authored books. She herself has organized workshops and seminars for the benefit of teachers, parents and volunteers. She has organized several awareness programs and mega events for the benefit of people with disabilities as well. She has founded AIKYA at Chennai for which she is the Chairperson. She has founded several special schools in India and abroad. Mrs. Parvathy also holds important positions in various organizations. Author of book "AUTISM" Author of book "ADHD" For more information, visit: www.aikya.org
Thanks to the for their time and support of the 2011 HYH Rise Awards. Please visit www.hyhonline.com for more information. YVONNE N. PIERRE, MBA
TERI L. KENDLE
BOB ZENHAUSERN, PhD