Saturday, April 25, 2015

Down syndrome Timeline


Here are some major milestones in the Down syndrome community that have shaped us into who we are today….

2015 –DSI hosts its 18th Annual Buddy walk

2014 – Down Syndrome Indiana hosts National Down Syndrome Congress National Convention

2008-   Board votes to change name to Down Syndrome Indiana, Inc.

2002 – DSI D.A.Ds founded

1999-   Olmstead Decision & deinstitutionalization

1996-   DSI receives official tax status as Indiana Down Syndrome Foundation

1996 – Down Syndrome Indiana hosts its first Buddy Walk®

1995-   NDSS holds the first Buddy Walk®

1994 – The Indiana Down Syndrome Foundation is founded

1990-   Mapping of the human genome begins

1990-   The Americans with Disabilities Act (ADA) was signed into law under President George H. W. Bush

1989 – Life Goes On featuring, Chris Burke, an actor with Down syndrome begins airing

1986 -  Emily Pearl Kingsley publishes, Welcome to Holland

1984 –  Dr. Charles Epstein introduces his research with the Trisomy 21 mouse

1984-   Baby Doe Rulings

1981 – Down syndrome Medical Checklist introduced in our community

1979 – The National Down Syndrome Society is founded

1975-   The Individuals with Disabilities Education Act (IDEA) was signed into law under President Gerald Ford

1973-   The National Down Syndrome Congress is founded

1969-   The first Special Olympics games in Indiana were played

1968 – First Special Olympics games were played

1960 – The first Down syndrome parent group is founded in Chicago

1959 – Dr. Jerome Lejeune discovers that Down syndrome is a third copy of the 21st chromosome

1866 – John Langdon Down fully describes what we now call, Down syndrome

Tuesday, February 17, 2015

Don’t We Already Do Inclusion?


One day workshop featuring Paula Kluth:

 
 
 

Saturday, April 18th from 8:30AM to 3:00PM,

 

 

Down Syndrome Indiana,

 

 

708 E Michigan Street,

 

 

Indianapolis, IN 46202,

 

 

Tickets are $45 each and include lunch.

 

 

 


Parents, educators and professionals... Are you trying to grow the inclusive schooling model in your community? Do you feel like you have tried everything to create change in your school? Do you want to, “sharpen the saw” and become re-energized as an advocate or educator? This day-long workshop is focused on addressing all of these goals and is designed to help a range of stakeholders learn new skills and ask new questions.
 
 

This presentation is not only filled with ideas for teaching diverse learners but is also focused on change itself and, more specifically, on how those invested in inclusion can create opportunities that allow all learners to thrive. Come and learn tried and true techniques (e.g., creating a culture of differentiation, focus on benefits for all) as well as some out-of-the-box solutions (e.g., “radical” role sharing, using social media to inspire inclusion).
 
 

Registration opens at 8:00AM. Workshop begins at 8:30AM with special keynote presentation by Self Advocate, Mark Hublar.
 
 

This workshop is a great opportunity for educators in both public and private schools, parents, OT's, PT's, ST's and disability professionals. Professional development points are available for attending this workshop. Upon check-in on April 18th, please indicate that you need a certificate for attending.

 

Tickets may be purchased online at: http://www.dsindiana.org/PaulaKluth.php  or by sending a check made payable to:

 

Down Syndrome Indiana

C/O Inclusion Workshop

708 E Michigan Street

Indianapolis, IN 46202

Friday, February 13, 2015

Mickey & Peter: A Love Story...


 By guest bloggers Jenny Deputy and Jill Sima.

 

 
  

Have you ever noticed that love blooms when and where you least expect it? That is what happened with Mickey and Peter. Sit back and enjoy the story of a love that transcends labels and diagnoses.

 

Mickey and Peter met when they were 13 years old. Mickey's mom, Jenny, and Peter's mom, Jill, were preparing for a mission trip to Nicaragua to work with special needs kids. Jenny took Mickey to Jill's house to help pack the totes of supplies. Mickey and Peter laid eyes on each other and.....Mickey got bossy, telling Peter what to do. Even so, they became friends and saw each other occasionally at various mission team functions.

 

Fast forward to November 2011 when Jill, Jenny, and some other parents decided to take their own special needs kids to Nicaragua to minister to the families there. Mickey noticed that Peter was handsome and thought she liked him, but he was not on the same page so she decided to move on. (The mission trip was an amazing experience for these friends but that's a story for another time.)

 

In March of 2012 Peter's oldest brother and fiancĂ©e decided to trick Mickey and Peter at a wedding reception. John asked Mickey to dance while Chelsea asked Peter to dance. Halfway through they switched partners and Mickey and Peter ended up together.  It was during this dance that Peter noticed Mickey and started to "like" her.  Mickey gladly returned his affection and they began seeing each other whenever possible

 

The miles (and drive time) between them makes regular dating difficult, but they are there to cheer each other on whenever possible. Any time they can be together becomes a date, whether it's a movie (with at least one parent in tow), Special Olympics events, school performances, even a visit to a park.  After a sweet hug at the end of one of these "dates" Mickey said, "Mom, I feel like my life is a TV show and tonight was a special episode."

 

And then it happened....after the Christmas PNO at Central Christian Church in 2012, Peter got down on one knee and proposed to Mickey with a ring he had chosen from the treasure chest at the dentist office. Mickey was overwhelmed but was able to accept his proposal. Since that time, Peter has proposed a couple more times just to make sure it stuck. They now spend evenings on the phone planning their wedding, choosing a honeymoon destination, and picking out furniture and dishes, just like many engaged couples do. The hope of a life spent together brings them such joy! Even though their parents can't see that far down the path (and their knees knock just trying), Mickey and Peter don't see the obstacles. They just see the possibilities.

 

They haven't set a date but be sure to keep your calendar open around the years 2025-2030! This promises to be the wedding of the century!

 

Thursday, February 12, 2015

Buffy's Story

This week’s blog is about Buffy 's testimony to the Indiana House of Representatives Health Committee to encourage health facilities and health care providers to give information to parents who receive a prenatal diagnosis of Down syndrome or any other condition upon testing…


“On March 30th 2012 a mother had an appointment with maternal fetal medicine. She had been given a probability of 1 out of 9 chance of carrying a child with Down syndrome. After two hours of lying on a table, looking at the ultrasound screen, the young doctor said, “If I squint really hard, I can pretend to see a nasal bridge.”
 

There are soft markers and there are hard markers for determining if a child has Down syndrome. A small or absent nasal bridge is considered a soft marker, and in most studies it is not even considered a noteworthy marker at all. After a moment of silence, and a few moments spared between the mother and the father, the doctor abruptly walked back into the room, looked into her eyes, and without consent began telling her about serious health implications, lifelong therapies, a grim outlook for education, and what seemed to paint a picture of a terrible prison sentence. The mother asked if he could please stop and excuse himself from the room. She began to have thoughts of abortion. Immediately, abortion needed to happen—because there is no way this child will ever be happy, this mother will never be happy, this father will never be happy. This must have been equivalent to losing a child—a child that did not fit the description of the posters hanging in the doctor’s office.



90 percent. 90 percent of mothers probably have those same thoughts. That is a safe assumption because roughly, 90 percent of mothers that receive a prenatal diagnosis terminate their pregnancy.
This mother, however, did not abort. She spent the remainder of pregnancy living in a silent hell. She often thought of adoption. She often thought thoughts that only God will know. She delivered her baby prematurely. A team of doctors whisked her four-pound baby away before she could feel her child’s skin against hers. No one said, “Congratulations on the birth of your beautiful baby!” In fact a leading neonatologist at the leading children’s hospital said, “You know, these children, well, don’t ever get your hopes up for her.”


I am this mother. Once my little girl, Ella Grace, was born, I vowed to make certain one day women would no longer carry the burden that I carried. I stand before you today because I am pleading for every unborn child whom carries a 47th chromosome or any other disability for that matter. It is our duty as a just society to allow mothers and fathers the true freedom to understand that they are not alone. I am among many who will lovingly open my heart and wrap my arms around someone new into this community. That is the picture that I want healthcare providers to paint.
 

When someone receives a diagnosis of cancer, heart disease, or any other type of illness, all treatment options are discussed, and treatment ensues aggressively. A prenatal or postnatal diagnosis of Down syndrome should not be biased based upon fears of the unknowns, but celebrated based upon the knowns.


I am respectfully asking your consideration to allow that all resources, be it education, monetary, support, community outreach, healthcare advances, and life expectancy be disclosed to every parent that receives either a prenatal or postnatal diagnosis of Down syndrome or any other disability.
 

I want to sincerely thank you for your time and considerations. God bless.”
 

Buffy, thank you for sharing your story. If you believe that accurate and up to date information should be handed out about Down syndrome, please write to your Indiana Representative today and let him or her know your thoughts. You can find your elected officials by clicking this link: http://cqrcengage.com/thearc/app/register?0&m=9899 and then filling out the window on the right hand side of the screen.

Monday, November 3, 2014

Take Action!




Down Syndrome Advocates:

We need your help TODAY!  We are closer than ever to the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S.313) being brought for a vote. We need everyone to call and urge your Members of Congress to pass the ABLE Act during the lame duck session in November!
 
Please contact your Members of Congress TODAY by clicking the link below, and ask your Senators and Representative to bring the ABLE Act to the House and Senate floor for a vote in November!

https://www.votervoice.net/NDSS/Campaigns/37425/Respond


Thank you for helping us #passtheABLEact!

Tuesday, October 14, 2014

October is Down syndrome Awareness Month!


 Help spread the word that October is Down syndrome Awareness month! Here are some simple ways that you can get the word out:


 

1.     Share a fact a day on social media. Visit the Down syndrome Indiana Facebook page or twitter page for a daily sharable fact. Then share it!
 

2.     Go to the movies. See the movie, Produce, during this year’s annual Heartland Film Festival.

Calvin, a professional baseball player sent to an early retirement due to his panic attacks at the plate, is struggling with the curveball life has thrown him. He sleepwalks through his days and the challenge of raising his teen daughter, when he is awakened by the most unlikely person – a kid with Down syndrome named, Produce. A must see! Click here for more information.


3.     Share information about Down syndrome with educators, providers and the medical community. Down Syndrome Indiana has made it easy for you by creating a simple one page of Frequently Asked Questions. Please click on this link for a downloadable and sharable version of the Frequently Asked Questions.


4.     Still encounter myths and misconceptions about Down syndrome? We have you covered there too.


5.     Have DSI present at your school. We invite you to contact DSI if you are interested in having someone from DSI visit your classroom to present an, "Everybody Counts" session. You can reach our office by emailing info@dsindiana.org.


6.     Schedule a Kids on the Block puppet show. The Kids on the Block Program is a unique way to teach awareness and acceptance of all others with the help of child size puppets. The first puppet troupe of eighth graders was established in 2009.  After extensive training in the effective use of these puppets, the puppet troupe hosts puppet shows and Q&A sessions to teach Pre-K thru 4th grade students the importance of accepting others. In 2013, Down Syndrome Indiana and the Joseph Maley Foundation formed a partnership to include education about Down syndrome awareness in the puppet troupe curriculum. If you are interested in scheduling a performance at your school, please contact Vivian Maley at vmaley@josephmaley.org.
 

7.     Request an Educator Toolkit for your school. Down Syndrome Indiana helps students with Down syndrome get a better education by providing educators with a free mini library upon request. This rich resource is full of books that encourage classroom inclusion and high expectations. If you would like to request a toolkit, please contact Alyssa@dsindiana.org or call 317-925-7617. This wonderful tool is valued at $109 so please only request what you will use. While Supplies Last! More info at: http://www.dsindiana.org/EducatorsToolkit.php.
 

8.     Be in the community. Send DSI your stories about what individuals with Down syndrome are doing in the community. DSI wants to feature those stories. Please send your stories to lisa@dsindiana.org today.

Friday, September 5, 2014

OVER 310,000 AMERICANS ACROSS THE COUNTRY ARE EXPECTED TO WALK TOGETHER FOR DOWN SYNDROME AWARENESS THIS FALL


Down Syndrome Indiana Encourages Participants to Take Strides towards Acceptance and Inclusion for People with Down syndrome.
 

By Guest Blogger: Jessica Hadsell, DSI Event Coordinator
 

Indianapolis, IN - The 17th Annual Buddy Walk® in Indianapolis will take place in Celebration Plaza of White River State Park on Saturday, October 11th.  More than 5,000 people are expected to attend the event, which is one of over 250 Walks across the country this fall to raise awareness and funds for programs that benefit people with Down syndrome and their families.

 

The National Buddy Walk® Program is supported by Emmy-Award Winning Imagination Movers, who lend their talent by appearing in the new national public service announcement. "Buddy Walks are fantastic events where smiles are shared, hugs are free, games are played and most importantly - footsteps are heard as we all walk together to support people with Down syndrome," said Imagination Mover Scott Durbin.

 

The National Buddy Walk® Program welcomes participants of all ages and abilities. The goals of the program are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice. Last year alone, Buddy Walk® events raised more than $12.1 million to benefit national advocacy initiatives, as well as local programs and services. All funds raised through the National Buddy Walk® Program support both local and national programs.

 

The Buddy Walk® in Indianapolis will feature many family-friendly festivities in the park beginning at 9:00am; the walk begins at noon. Participants will enjoy music and interactive entertainment featuring the talents of local families, delicious food, an Information Expo sponsored by WestPoint Financial Group, and enough inspiration to last the entire year! To learn more, visit www.dsindiana.org/buddyWalk.php or contact Down Syndrome Indiana at (317)925-7617.

 

About Down Syndrome Indiana

Down Syndrome Indiana is a not-for-profit organization serving the needs of individuals with Down syndrome and their families. Dedicated to enhancing the lives of individuals with Down syndrome, their mission is to serve as a conduit of information, support and advocacy for individuals with Down syndrome and their families, which promotes growth and inclusion in the community. The programs and services provided by Down Syndrome Indiana are supported by individual and corporate donations combined with annual fund raisers and special events.

 

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community.  To learn more about NDSS, visit www.ndss.org.

 

Contact

To learn more about the Buddy Walk® in Indianapolis, please contact:

Jessica Hadsell, Event Coordinator  

708 E. Michigan Street, Indianapolis, IN 46202

Office: (317) 925-7617

Fax: (317) 925-7619