National Down Syndrome Society E-Newsletter

July 2011

There are only two weeks left to submit your photo for the 2011 Times Square Video contest! The New York City Buddy Walk® will kick off in the heart of Times Square with a video presentation featuring more than 200 individuals with Down syndrome from across the world. We invite you to submit a photo for this one-of-a-kind feature presentation. The contest runs until July 15 and winners will be contacted the week of August 1, 2011.

Click here for more information about the Times Square Video. 

Click here to submit your photo.

Click here to watch the 2010 Times Square Video.

NDSS National Policy Center Update

- The US Senate Health, Education, Labor and Pensions (HELP) Committee released an 850 page draft of the Workforce Investment Act reauthorization proposal. A Committee mark-up is scheduled for June 29, 2011. This significant proposal has been reviewed and comments were submitted by NDSS to Senator Tom Harkin, chair of the HELP Committee, and to other Members.

- NDSS submitted comments on proposed legislation as co-founder of the Collaboration to Promote Self-Determination (CPSD), a coalition of 15 organizations focused on pursuing legislation and policy that will improve the lives of persons with intellectual disabilities, including Down syndrome.

These recommendations include: a strong realignment of transition supports to ensure all youth with significant disabilities are able to successfully pursue post-secondary education and integrated employment opportunities; reforms to promote stronger collaboration among public agencies and easier coordination and flexible use of public resources to produce preferred outcomes of post-secondary education and integrated employment.

The draft reauthorization includes many provisions which will benefit persons with Down syndrome such as: the extension of supported employment services to 24 months; required cooperative agreements among vocational rehabilitation (VR) and other state agencies critical to the provision of transition, employment and long-term supports and services to citizens with significant disabilities; funding directives to encourage more state focus on expanding supported employment services to youth with significant disabilities.

However, the proposed language related to the presumption of eligibility for employment services must be strengthened so as to youth considered the most difficult to place in integrated employment from being rejected for services. Also, not allowing students older than age 24 to utilize transition services will put these older students at a distinct disadvantage, especially those attending post-secondary programs that serve students with intellectual disabilities over 24 years of age. Lastly, CPSD believes that section 511 of the proposed reauthorization draft creates an easy path for placing youth with significant disabilities into positions earning subminimum wages and should therefore be deleted. 

- On June 22, 2011 the US House Committee on Education and the Workforce approved the Empowering Parents through Quality Charter Schools Act by a vote of 34 to five. The bill is intended to modernize the federal Charter School Program and provide greater opportunities for states to develop and expand successful charter schools while strengthening the measurement of the impact of the Program. Currently, there are 400,000 students on charter school wait lists.

Additionally, the bill calls for charter schools to "improve student services to increase opportunities for students with disabilities, English language learners and other traditionally underserved students...." NDSS is pleased to see the language regarding students with disabilities in the proposed legislation, but believes this language should be stronger. An ongoing criticism of the charter school movement has been that some charter schools will not accept students with disabilities. 

- NDSS is one of the sponsors of the Individuals with Disabilities Education Act (IDEA) National Survey project, a survey of whether the rights of students with disabilities and their parents are protected. The deadline for the survey has been extended to July 12, 2011. One of the main reasons for the extension is to get more parents of students with intellectual disabilities to respond. It is especially important for parents to answer the questions about assessments, so it can be determined whether the type of assessment seems to be affecting placement and access to the curriculum. If you haven't already completed the survey, NDSS urges you to do so.

Click here for more information and to complete the survey. 

- On June 9, 2011 members of the NDSS Policy Center team were invited to a meeting with leading advocates on special education issues to discuss the reauthorization (amendment) of the Elementary and Secondary Education Act (ESEA), also known as the No Child Left Behind Act, with US Secretary of Education Arne Duncan and White House Domestic Policy Advisor Melody Barnes. Also in attendance were the Assistant Secretaries of the Office of Special Education and Rehabilitative Services, the Office of Elementary and Secondary Education and the Office of Planning, Evaluation and Policy Development.

NDSS represented the interests of students with Down syndrome at this meeting and spoke about concerns related to access to the curriculum, least restrictive environment and the opportunity to work towards a high school diploma, especially for students who take an alternate state assessment. NDSS Policy Center staff also met with the Deputy Assistant Secretary of the Office of Elementary and Secondary Education and his staff in a follow-up meeting on June 20, 2011 to discuss details about our concerns and how they can be addressed in the ESEA reauthorization.

Sign up to Receive Important Policy Action Alerts

Be an Advocate!

There are many ways that you can help make a difference in the lives of people with Down syndrome through advocacy. Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are ways for everyone to get involved.

Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.

Support NDSS through Twibbon

NDSS has a new pic-badge that anyone can add to his or her profile picture on Facebook or Twitter. By adding the badge, also known as a Twibbon, you are supporting NDSS and spreading the word to all who see your profile picture on either of these outlets. The Twibbon can be customized to appear in a  number of places and sizes, so it will be applied to your profile picture in just the way you'd like it.

Click here to view a selection of recent supporters of the NDSS Twibbon and to add it to your profile picture.

Buddy Walk® News

Buddy Walk® Spotlight - Kadena Air Force Base, Okinawa, Japan

On May 7, 2011, Kadena Air Force Base in Okinawa, Japan held their 1st Annual Buddy Walk® - the second such event to take place on a military base overseas. Rona Pape, the organizer of the Walk, pictured above with her son, Owen, reported that over 250 friends and family members of individuals with Down syndrome turned out, collectively raising more than $5,000 for NDSS. Many of the participants, who were walking in honor of loved ones back home, showed their support for their family members by wearing shirts with their names and pictures. Rona and the other organizers were thrilled with the turnout at their inaugural event and are already starting to work on the 2nd Annual Kadena Buddy Walk. Rona hopes that their "Buddy Walk will inspire other military communities to do the same." NDSS looks forward to making this happen.

Buddy Walk Partner Spotlight

NDSS is pleased to spotlight our newest National Buddy Walk Partner, Down Syndrome Footprint. Established in 2009 by new parents Mike and Katia Hauser, Down Syndrome Footprint started from a vision seeking a unique and universal image that would both represent Down syndrome, and develop awareness, empowerment and employment for individuals with Down syndrome. Down Syndrome Footprint is proud of the fact that each of its products is either made or packaged by an individual with Down syndrome.

To help support each approved Buddy Walk, Down Syndrome Footprint is offering each Walk a basket of Down Syndrome Footprint merchandise. In addition, Down Syndrome Footprint has come up with three different ways that you can raise funds for your Buddy Walk or your organization using their merchandise risk-free.

Click here to learn more about these fundraising opportunities.

Click here for more about Down Syndrome Footprint, or click here to contact Stavroula Marcell for additional information.

NDSS thanks Down Syndrome Footprint for their support of the Buddy Walk program and looks forward to a meaningful partnership.     

The Porter Brothers

So many of you reached out to NDSS after you read our summer appeal featuring Matt and Andy Porter from Pennsylvania. We loved hearing your stories about the relationships between siblings in your own homes and also about the work you are doing locally to make sure that adults with Down syndrome have similar opportunities to Matt Porter.

We are grateful to Congressman Glenn "GT" Thompson of the 5th Congressional District of Pennsylvania for sharing Matt's story in his monthly newsletter (scroll to the bottom). And, we appreciate those of you who posted our article on your websites, forwarded it to your contacts, blogged about Matt and Andy, "liked" it on Facebook, and retweeted it to your friends.

Special thanks to those of you who were moved to make a donation to NDSS in honor of Matt and Andy Porter.

Click here to read the 2011 NDSS summer appeal letter featuring Matt and Andy Porter. 

Click here to make a donation in honor of a significant person in your life.
 

"Matt has been the keystone in my life. His love, enthusiasm,

and vigor for life has been the greatest inspiration to me. I love watching the way that a room lights up when Matt enters,

dancing, laughing, and meeting strangers without inhibition.

I respect and admire him for who he is." 

--Andy Porter

NDSS Featured at the Get Real NY Belgian Beer Festival

Get Real's Belgian Beer Festival, taking place at The Altman Building in New York City on July 8-9, will feature 100+ of the most diverse, unique and hard-to-find Belgian and Belgian-inspired brews from craft breweries at home and abroad. To help wash down all the amazing beer, there will be plenty of tasty Belgian bites on hand from local NYC restaurants and artisanal food shops, including mussels, oysters, artisanal cheeses and meats, chocolates, Belgian waffles, pommes frites, bratwurst and more. 

One of the festival co-founders has a nephew with Down syndrome, and he selected NDSS as the featured charity at this event. Volunteers will be at each of the four sessions and all donations made at the event, including tips at the bars, will be donated to NDSS. 

Use #grbfny on Twitter to join the conversation! 

Click here to buy tickets and read more about the festival.

Each $85 general admission ticket comes with a souvenir glass, unlimited tasting pours, a fest beer guide, unlimited food sampling, live music, tasting panels and all the beer education you can handle. The $115 VIP tickets will include everything above in addition to one-hour early access to the festival, admission to a special VIP tasting room featuring several rare and hard-to-find beers and access to brewery tasting panels and discussions.

M5 Networks Selects NDSS as Beneficiary

Headquartered in New York City, industry-award winning M5 Networks provides more than 1,800 companies with enterprise-class phone systems. In June, NDSS was chosen to be the recipient of a cash donation from a charity event hosted by M5 in their New York and Chicago offices. In support of the event, M5 received in-kind donations from many of their other clients for a silent auction. The most noteworthy part of the entire evening was when the winner of the Texas Hold 'em Tournament donated all of his winnings to NDSS.

NDSS thanks M5 Networks for their leadership and partnership.

Click here for more information about M5 Networks. 

Click here to learn how your company can partner with NDSS for a charity event or other workplace giving campaign.

Enrichment Fund Deadline Approaching

2011 Joshua O'Neill and Zeshan Tabani Enrichment Fund Continues to Accept Applications

The Joshua O'Neill and Zeshan Tabani Enrichment Fund offers financial assistance to young adults (18+) who have Down syndrome and wish to continue to enrich their lives by enrolling in postsecondary programs or taking enrichment classes that will help them to enhance life through employment, independent living skills, life skills or another way. All applications must be postmarked or emailed by July 15.

Click here to learn more and download the application.

My Great Story Summer Fun Section!

The top voted story in the Summer Fun section will be featured in our next e-newsletter, so be sure to share your story and spread the word to see your story here next month!

Click here to visit the My Great Story public awareness campaign and click the submit bookmark to share your story.

My Great Story of the Month Contest 

Congratulations to Evan Sneider, Cape Cod, MA, on winning the My Great Story of the Month Contest! Evan's story received the most votes in June, and he will be receiving a Sheaffer® Intensity® Ballpoint Carbon Fiber Pen (retail $55)!

In July, the author of the story with the most votes will win a $50 gift certificate to ShoeBuy.com. Share your story and spread the word throughout the month to win this prize!

Click here to share your story.
 

Shoebuy has the largest selection of women's, men's and kids' shoes. Choose from over 1,100 brands, 1,000,000 products, the most styles per brand and the most up-to-date fashions. Shopping for shoes at Shoebuy is Risk-Free. Plus, enjoy Free Shipping and Free Return Shipping on US orders. 

Click here for more information about ShoeBuy.

The first place story for this month has each been featured in a previous e-newsletter.

Click here to read Evan, The Actor, by Evan Sneider from Cape Cod, Massachusetts.

Maestro of My Heartstrings

Pam Bonsper

Carmel Valley, California

I picture him sleeping soundly.  Angels, using snow-white ostrich feathers, sweep away nightmares of pain, thirst, and inconsolability. In the tranquility of the pre-sleep state, I watch the previous day replay in my mind---the looks my grandson gave me, the questions he asked with his eyes, the requests I misunderstood.

Dalon is two years old.  The bittersweet joy of being part of his life is so intense, I feel as if I am experiencing true love for the first time. I love my husband and children with all my being, but this little guy controls my heartstrings like a harsh and demanding maestro.  He is unrelenting and ever so deliberate.  What goes on in his beautiful little head is a mystery. Maybe the mystery of Trisomy 21 is in the added chromosomal nectar between the spaces in his genes.

"Tell Grandma with your hands," I say to him.  He has come to me wanting something, pleading.  He cannot say words, but I know he is talking. "Look Sweetie," I say, bending down.  "Use your hands. Do you want milk?"  I make the sign for milk. He looks at me and frowns.  I try another word, eat. He smiles and puts a tentative finger to his mouth.  It's not the correct sign. Technically, his fingers should be cupped together but he is telling me what he wants. I hug him.  I could not be happier had he said, "Grandma, I want a cracker."  If he had been a "typical" kid, I might have answered back, "If you say Please."  To him I make the sign, "I love you."

I give him a cracker, broken into small pieces.  He uses his fist to maneuver them to his mouth.  He does his best to chew, but gags. I hold him, ignoring the mess, and encourage him to get them all out. A mess has become a simple fact, meaningless in the greater context.  My tiny grandson is teaching me the greater context. A brave fighter, who a few months after he was born, a slash running the length of his baby chest, tubes poking from tummy, looked imploringly at me in the hospital room.  He demanded that I help with his pain and never abandon him. His message was crystal clear. 

Tonight, as I relax into sleep, I watch the angels working.  They have been sweeping away nightmares of open-heart surgery for two years.  Their feathers are bare nubs rubbing away the last fragments of his delirious outcries.  He wakes up less frequently.  But who can know the struggles that lie ahead of him?  Who will protect him from the pain caused by prejudice and ignorance?  His parents will, I know.  And I will, I say to him.  I am getting older every day.  Someday I will lead an entire orchestra of angels, conducting, as you, my little maestro, have taught me... with vigilance and determination.  And you, my little darling, will forever sleep in peace.

I Love You "Dada!" Julian Thomas Sherman

Gretchen Mather 

Lexington, Massachusetts

Hi, my name is Julian Thomas Sherman. I am turning one year old on June 5, 2011 and I can't wait to celebrate Father's Day with my dad, Thomas Sherman. 

He is the most loving father a little guy could want.  During my first year of life, he has guided me to accomplish so many things along with my mom and my grandparents.

Besides playing a lot and getting lots of kisses on my belly and neck, my parents helped me to learn to hold my head up high when I was a tiny baby, sit up, roll over, stand while holding on to my crib, hold my own bottle, drink through a straw, self feed myself with my hands and a spoon and I am working on crawling - I get myself up on all fours and rock back and forth.  I will catch on soon, you just wait!

My parents had a bit of a hard time with my diagnosis when I was born.  They weren't expecting a baby who was a bit different than his typically developing peers.  Like some other parents of children with Down syndrome, they had to go through a grieving process of mourning the baby that they were expecting. But soon enough, they were able to not just see my diagnosis but appreciate me for everything that I am and everything I can give to the world.  I am a cute, lovable and very capable little guy.  The world is my oyster and I can accomplish whatever I want.

My dad can't wait to see me walk, say my first words, go to preschool and kindergarten, high school and higher education, play ball with me, ride bikes, go camping, and teach me to rock climb which is one of his hobbies (he is a rock climbing instructor!). If I find the right girl to be able to keep up with me, maybe I will get married.

We are going to have so many fun father son moments. I just know it.  I am already starting to babble "Dadada" - and soon enough I will be able to tell my daddy "I love you, Dad!"   That will be the best Father's Day present ever.

My Great Story

in the Media

The My Great Story campaign has had some exciting placements across various media this month! 

In Chandler, AZ, Positive Side Sports and Entertainment Radio Show aired an interview about the campaign. 

In Metairie, LA, WGNO covered David Sunseri's submission to My Great Story about his daughter Peighton, in honor of Father's Day.

Click here to view the segment.

In Metairie, LA, Bayou Buzz highlighted David Sunseri's story in the My Great Story campaign.

Click here to read the article.  

In Pennsylvania, Central Penn Parent covered the My Great Story campaign in honor of Father's Day.

Click here to read the article.   

In West Virginia, Groovy 94.1 featured My Great Story on their website.

Click here to view the post. 

NDSS would like to extend a special shout out to everyone who blogged, posted and tweeted about the My Great Story campaign this month. Here are a few of those who did:

@AmyNBaskin

@brianskotko

@21andCo

@CarrieWChildren 

@DSNNN Reno

@ds21info

Julian's Journey - Life As We Know It

Thanks for all of your support and continuing to spread the word!

Social Media