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RISE
Rising in spite of expectations
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RISE hyhonline.com
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 [email protected].
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
HYH Rise Awards serves as a
platform not of competition, but to
recognize and show appreciation of
the efforts of advocates and self-
advocates, parents, non-profit
organizations and others that make
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.
RISE eMag published by Zyonair‟s
Unlimited, LLC 2011 © All Rights Reserved
visit www.zyonair.com
Layout design by Yvonne Pierre
Edited by Steffan Cooks
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RISE hyhonline.com
Patricia Moody page 6
Dr. Jamie McClintic page 8
Gina F. Rowland Page 12
Elizabeth Newton page 16
Brett Banford page 20
Sujeet Desai page 24
Leaps N Boundz page 28
Oana Bogdanescu page 30
A special thanks to our sponsors for their time, resources and support!
The 2011 HYH RISE AWARDS recipients are…
PATRICIA MOODY
THE RISE AWARD RECIPIENT
SELF-ADVOCATE | SIGN LANGUAGE TEACHER Nominations: The Rise Award and Rising in Entertainment
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RISE hyhonline.com
Self-advocate, PATRICIA MOODY 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
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DR. JAMIE MCCLINTIC PROUD MOM | OCCUPATIONAL THERAPIST Nominations: Internet Impact Award and Rising Voice
Down syndrome is the most commonly occurring
chromosomal condition. One in every 691 babies is born
with Down syndrome. – National Down Syndrome Society (NDSS)
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?
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
personal with special needs
children every day. I was the
therapist helping parents through
their difficult time, rehabilitating
their child, scheduling appointments, and
connecting them with resources. I was not
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
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.
YVONNE: As a parent and therapist, what
tips or advice would you like to share with
parents?
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 won‟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 protected]
** Please title the subject in all capital letters:
TRISOMY 21 **
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RISE hyhonline.com
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
JAGATJOTI S. KHALSA Nominations: Rising Voice and Rising in
Entertainment
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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.
GINA F. ROWLAND: I just want to say it
was an honor to be in such good company of
so many wonderful people.
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
for little things, big things, imagined things
and the harsh reality of it all. I try to breathe
often, deeply and slow.
YVONNE: What is the greatest reward?
Briefly explain.
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
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-Favazza-
Rowland/dp/1453658726/ref=sr_1_1?ie=UTF
8&qid=1318979688&sr=8-1 or on
CreateSpace eStore:
https://www.createspace.com/3464508
Individuals with Down syndrome benefit from loving homes,
early intervention, inclusive education, appropriate medical
care and positive public attitudes. – NDSC
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
GLORIA HUERTA Nominations: Rising Voice and Advocacy
Impact Award
ELIZABETH NEWTON
ADVOCACY IMPACT AWARD RECIPIENT
PROUD MOM, SISTER | BLOGGER Nominations: Advocacy Impact and Internet Impact Award
Page 17
RISE hyhonline.com
YVONNE PIERRE: Elizabeth, congratulations
on being nominated in two categories and
being the 2011 recipient of the Advocacy
Impact Award.
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.
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?
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
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.
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.
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.
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-got-
promotion.html
Aunt Leanne’s Philosophy to live by:
Honesty is the best policy:
http://confessionsofthechromosomallyenh
anced.blogspot.com/2011/04/when-you-
care-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-and-
acting-abilities.html
Self Talk: When and where this little
habit is appropriate according to Aunt
Leanne:
http://confessionsofthechromosomallyenh
anced.blogspot.com/2011/04/hyvee-
heartbreak.html
Advice from Aunt to Niece – For every
action, there is a consequence:
http://confessionsofthechromosomallyenh
anced.blogspot.com/2010/08/bad-girl-
another-email-from-leanne.html
In adulthood, many persons with Down syndrome hold jobs,
live independently and enjoy recreational opportunities in
their communities. - NDSC
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RISE hyhonline.com
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.
YVONNE: What is the overall message of
your advocacy?
ELIZABETH: It's important that society
recognizes that individuals with Down
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.
For more information visit “Confessions of the
Chronically Enhanced” at
http://confessionsofthechromosomallyenhance
d.blogspot.com or email
BRETT BANFORD
MEDIA IMPACT AWARD RECIPIENT
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.
YVONNE: Brett, you’ve traveled the world to
spread the message of awareness for
Down syndrome. Why is it important
that advocates like yourself continue
to raise awareness?
BRETT: Advocacy is important to
me so that people with disabilities of
this and future generations can be
accepted in this society.
YVONNE: What would you like to see
changed for individuals with Down syndrome?
BRETT: I would like to see the use of the R-
word (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
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
learned that self-advocacy was something that
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.
There is wide variation in mental abilities, behavior and
physical development in individuals with Down syndrome.
Each individual has his/her own unique personality,
capabilities and talents. - NDSC
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. You‟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
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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
NDSS - MY
GREAT STORY Nominations: Advocacy Impact
Award, Internet Impact Award and
Media Impact Award
INTE
RN
ATI
ON
AL
IMP
AC
T A
WA
RD
RE
CIP
IEN
T
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
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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
AIKYA Nominations:
International Impact,
Internet Impact and
Rising in Sports
Awards
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, self-
confidence, 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.
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
PARVATHY
VISWANATH Nominations: Rising Voice
Award
Page 33
RISE hyhonline.com
Thanks to the COMMITTEE MEMBERS for their time and support of
the 2011 HYH Rise Awards. Please visit www.hyhonline.com for more information.
YVONNE N. PIERRE, MBA COLLEEN GRAY TERI L. KENDLE
MARLA MURASKO STEFFAN COOKS
BOB ZENHAUSERN, PhD
RISE