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 ypierre@hyhonline.com.

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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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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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 jamieawtry@hotmail.com

** Please title the subject in all capital letters:

TRISOMY 21 **

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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

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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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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

DualDownsDivas@gmail.com

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

Page 23

RISE hyhonline.com

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

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ATI

ON

AL

IMP

AC

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RE

CIP

IEN

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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

Page 27

RISE hyhonline.com

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