Welcome

Down Syndrome Indiana is pleased to welcome its newest staff members Cathy Boyer, DSI Event Coordinator and Annie Smiley, DSI Program Coordinator.

Cathy graduated from Indiana University Indianapolis with a focus in Non-Profit Management.  Cathy has over 10 years’ experience in the development field managing a diversified fundraising portfolio. Cathy enjoys spending time with her family and traveling.  Cathy is honored to be a part of the DSI team and for the opportunity to build lasting relationships with individuals with Down syndrome and their families. Cathy will be overseeing the Down Syndrome Indiana Buddy Walk®, the DSI D.A.D.S. Golf Outing, the Fly-in, the Summer Picnic and the Holiday Party. Cathy can be reached at cathy@dsindiana.org.

Annie is a recent graduate of Indiana University-Purdue University Indianapolis, where she earned a degree in journalism with a concentration in public relations and a minor in event management. Annie grew up with an older brother that has Down syndrome, whom is the main reason for her involvement in the Ds community. She was awarded the William M. Plater Civic Engagement Medallion in 2015 for her work with individuals with disabilities through Live, Laugh, Dance and the Ability Experience. She says, “I feel honored to work an organization that hits so close to home for me!”  Annie oversees a variety of Down Syndrome Indiana programs including: Volunteer Coordination, Adult Life, the DSI Dancers and the e-newsletter. Annie can be reached at annie@dsindiana.org.

Welcome Ladies, Down Syndrome Indiana is thrilled to have you on the team!

 

Dedicated to enhancing the lives of individuals with Down syndrome,

 

 

Lisa Wells, Executive Director

 

 

Live Laugh Dance Registration Now Open

Registration for the 2015 Live Laugh Dance Camp is now open! Live Laugh Dance is a summer program specifically designed for adolescents and young adults (age 13+) who have Down syndrome. We are thrilled to announce that we have officially partnered with Down Syndrome Indiana, and will be holding dance classes in the ballroom at the SoL Center in downtown Indianapolis. Dance classes will meet on Tuesdays only from 6-8pm June 9^th – July 28^th.

Please visit our webpage for more information and instructions on how to register: http://petm.iupui.edu/affiliates/livelaughdance/index.php.

 

If you have any questions, please feel free contact Rachel Swinford via email (rswinfor@iupui.edu) or phone (317-431-9215).

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 18^th 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 21^st chromosome

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

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

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 fiancée 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!

 

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.