Wednesday, February 10, 2016

Why I Walk...

By Guest Blogger Lilly Capecci


I WALK for my sweet Eli. When he was born with Down syndrome we didn't know what that meant for his future health and happiness. The unknown scared us, but Down Syndrome Indiana was there: they provided us with a new parent’s packet full of resources and information on raising a baby with Down syndrome. They provided that much needed support at his birth and have continued to support our journey with Down syndrome throughout his first year- That’s right Eli turned ONE on January 31st!  



I WALK for my sweet Eli but I also walk for many other reasons...



I WALK for all individuals living with Down syndrome and I WALK for their families too.



I WALK to bring awareness, acceptance, and love for Down syndrome. 



I WALK for Down Syndrome Indiana(DSI) and Lafayette Area Down Syndrome Organization (L.A.D.S.O.).  They support individuals with Down syndrome and their families throughout the state of Indiana. They help bring in speakers, educators, advocates, and many other resources to families.  Both DSI and L.A.D.S.O. are dedicated to enhancing the lives of individuals with Down syndrome through education, support, and advocacy. We appreciate all the support they have provide us.



I WALK with the hope that someday the world will be more accepting of individuals who are differently abled-Down syndrome or not.



I WALK to bring awareness to the many blessings that a child with Down syndrome can bring to your life- in hopes that a mother with a prenatal diagnosis will choose life and not abortion out of fear of the unknown. My child is so much more than his diagnosis and no prenatal test will ever be able to tell a parent that! His life is no tragedy ­in fact his life is a blessing! I think we benefit as society to have greater diversity in our world.   



I WALK to raise awareness for accurate educational material to be given to parents after receiving a prenatal or postnatal diagnosis. That medical professionals who are delivering the diagnosis of Down syndrome are giving accurate and up-to-date information about Down syndrome.




I WALK to bring awareness to the many families waiting to adopt a baby with Down syndrome- so that a mother carrying a baby with Down syndrome who doesn't want to choose this journey will choose life - for that baby whose life has value and for the family waiting to love a baby born with Down syndrome.



I WALK to improve acceptance for individuals with disabilities because I dream of a day when our child won’t be labeled by the things he can’t do or that take him longer to do. 



I WALK to bring awareness to the many things my child can do and will do in his life. I bELIeve he can do anything that he wants to do and that he will make a great contribution to our lives and the world.



I WALK and PRAY for a day that the world will see my child and all our children as differently abled with something great to contribute to our lives and the world. Because with love and support from their parents, families, and friends our children will be able to accomplish many things and live life to their fullest capabilities and we   should be proud of that.



I WALK to show that Down syndrome has changed my life - my life is filled with MORE LOVE.  


We hope you will join Team Just BELIeve this spring at Buddy Walk® Lafayette on Saturday, April 30th or at Buddy Walk® Indianapolis on Saturday, October 8th. 


Friday, January 15, 2016

Top Local Ds News Stories of 2015


 

Born This Way

A&E Networks announced it would be airing “Born This Way,” a new six-episode documentary series about young adults with Down syndrome. http://www.aetv.com/shows/born-this-way.

 

Erskine Green Training Institute

The Arc of Indiana, a statewide advocacy organization for people with disabilities, strives to empower people and inspire change in many ways – including expanding employment opportunities to tackle the 82% unemployment rate among people with disabilities. They not only advocate for change, they are working to be part of that change by developing the Erskine Green Training Institute through The Arc of Indiana Foundation. Find out more at: http://www.erskinegreeninstitute.org/about-us/about-the-erskine-green-training-institute/.

 

New Down syndrome Growth Charts Released

Researchers have developed and released new growth charts for children with Down syndrome. The last time the growth charts were updated was 1988. The charts can be accessed at: http://pediatrics.aappublications.org/content/136/5/e1204.

The American Academy of Pediatrics article about the release can be accessed at: http://www.aappublications.org/news/2015/10/30/GrowthCharts103015.

 

House Bill 1093

House Bill 1093 became law stating that, “When a positive result from a test for Down syndrome or any other condition diagnosed prenatally is received, a health care facility or health care provider shall provide to the expectant parent of the child diagnosed with Down syndrome or any other condition diagnosed prenatally the written information made available by the state department…”.  “This is a huge step in the right direction. I have long been concerned with the number of families that haven’t received any information about Down syndrome at all or have received outdated information.” said DSI Executive Director Lisa Wells.

 

 

“Where Hope Grows” in movie theatres nationally

“Where Hope Grows” opened nationally on Friday, May 15th  2015.  The movie (formerly known as “Produce”) follows the story of Calvin, a professional baseball player sent to early retirement due to his panic attacks at the plate. He struggles with the curveball life has thrown him but is invigorated when he meets a young man with Down syndrome (DeSanctis) that works at the local grocery store. Their lives become intertwined, and as their friendship develops, Calvin begins to see the world through Produce’s eyes and improve his own outlook on life.

 

DSI Hires Self Advocate, Angie Cain

Down Syndrome Indiana welcomed long time volunteer and Self Advocate, Angie Cain to its staff.  Angie has been a dedicated volunteer since September 2006 and has donated over 2,300 hours to the organization. “I am so excited!” said Executive Director, Lisa Wells about having Angie on the DSI staff team. Angie was awarded the National Down Syndrome Society Self Advocate of the Year award in 2014 and the Colts Golden Horseshoe Award in 2010.  Angie also volunteers her time for Best Buddies Indiana, Windemere Nursing home and Community North Hospital, as well as, working for the YMCA and Kohl’s.

 

GiGi’s Playhouse Opens in Indy

Down Syndrome Indiana was one of the first to give a warm welcome to the newest Down syndrome organization in the neighborhood, GiGi's Playhouse-Indianapolis! Down Syndrome Indiana recognizes that there are varied interests among the Down syndrome community. Examples include geographical considerations, cultural considerations, educational considerations and age considerations. Down Syndrome Indiana also recognizes and welcomes the benefits of a variety of community groups that serve these varied interests among our families.

 

We believe that a partnership between these two separate nonprofit organizations, Down Syndrome Indiana and GiGi's Playhouse, will enhance the variety of resources and programming available to the Down syndrome community in Indiana. We look forward to a mutually respectful relationship where Down Syndrome Indiana and GiGi's programs will complement each other rather than compete. DSI will continue its current outreach, education, support and advocacy programs including the Buddy Walk(R), First Call, parent support groups, educational presentations, the Fly-in and the DSI D.A.D.S. Golf Outing. GiGi's Playhouse is a direct service provider that will offer programs that are both educational and therapeutic in nature. For more info: http://gigisplayhouse.org/indianapolis/.

 

 

DSI Welcomes 12th Community Group!

Do you live in Muncie or the surrounding area and are interested in joining a group that can provide resources, networking and support to your family? Then be sure to join our ECI Community Group.  The group is being led by Jody and Jodi Kress. They are the parents of two children, their son having Down syndrome. "Our family is excited to help bring Down Syndrome Indiana to East Central Indiana. We hope this new community grows into something that positively impacts families who experience Down syndrome," the Kress family states. http://www.dsindiana.org/East-Central-Indiana.php.

 

 

Global Down Syndrome Foundation Awards DSI $10,000 grant

 

The Global Down Syndrome Foundation (http://www.globaldownsyndrome.org/) awarded Down Syndrome Indiana a $10,000 grant to host a 2016 conference. Please save the date for May 13th and 14th, 2016 as DSI prepares to bring you high quality speakers, such as Pat Winders, author of Gross Motor Skills for Children with Down syndrome. In addition, there will be workshops on Down Syndrome and Behavioral Changes with Aging – Dementia and other Conditions and puberty. 

 

New Law Eliminates R Word from Indiana Code

On July 24th, Governor Mike Pence signed SB 420 into Law. The new law replaces the term, “mental retardation” with the words, “intellectual disability” in Indiana code. An article by WISH TV covered the signing: http://wishtv.com/2015/07/24/new-law-eliminates-r-word-from-indiana-code/.


Marsie Celebrates her 80th Birthday!

MARTHA “MARSIE” MATHAUER celebrated her 80th Birthday with family and festivities!  We believe that Martha is the oldest living person with Down syndrome in the State of Indiana and she is such a blessing to all who meet her.  She has gifted all of us with her humor, laughter and kind heart. Click here to read more: http://dsindiana-exectivedirector.blogspot.com/2015/09/marsie-celebrates-her-80th-birthday.html.         

 

Governor Pence Issues Proclamation in Support of October Disability Employment Awareness Month and 25th Anniversary of ADA

In recognition of National Disability Employment Awareness Month, Gov. Mike Pence issued an executed proclamation encouraging Hoosier leaders and employers to "further advance the message that our family members, friends, and neighbors with disabilities are important to a diverse Hoosier workforce." National Disability Employment Awareness Month is a nationwide campaign that raises awareness about disability employment issues and celebrates the contributions of America's workers with disabilities, past and present. The theme for this year, which marks 70 years since the first observance, is "My Disability is One Part of Who I Am."

Coinciding with the 25th anniversary of the passage of the Americans with Disabilities Act, Gov. Pence noted that "despite our successes, less than 40 percent of working-aged Hoosiers with disabilities are employed, a reminder that we all still have work to do to ensure equal opportunity and participation in the workforce."

To read the Governor's full proclamation, click here: http://in.gov/gpcpd/files/NDEAM_Proclamation.pdf.

 

Renee Petrie and Kelly Gillespie win STAR Awards

Congratulations to the 2015 STAR Award recipients, Renee Petrie and Kelly Gillespie.

 

Renee Petrie currently resides in Lafayette, IN with her husband, Jonathon, and her two children, Ben and Caroline. Caroline is, “blessed with Down syndrome”, as Renee would say. Renee is the current leader of the DSI Lafayette Area Down Syndrome Organization (L.A.D.S.O.). Renee is instrumental in planning their monthly speakers, activities and fundraisers.  Of course, Renee does not stop there. She was the District 4 Family Advocate for The Arc of Indiana and is currently finishing up her two-year term on the Family Advisory Council for Children’s Special Health Care Services. In her free time, she presents trainings to families and is very involved in Tippecanoe County. Renee embodies our entire mission at DSI.  We are sincerely grateful for the love, support and effort she puts into everything she does. Renee is truly dedicated to enhancing not only the lives of individuals with Down syndrome, but to everyone around her.

 

Kelly Gillespie is a loyal volunteer with DSI. She recently participated in the IUPUI S.I.T.E. program; a transition program in which students spend one to two years on the IUPUI campus taking classes, engaging in typical activities, interacting with college peers and learning to access the campus and community.  For example, since the DSI office is located on a bus route, Kelly uses the city bus to get to and from her volunteer shifts at DSI. During the time that Kelly has spent with DSI, we have come to learn so much from her. We have seen her grow and excel in numerous ways. She brings life to the office each day she is in. It may not have always been an easy road, but Kelly’s determination to do her best always outshines. She is smart, kind, sassy and sweet! DSI is thrilled to have Kelly as a part of our team! Her contributions to DSI have not gone unnoticed. We truly appreciate her hard work, work ethic and cannot wait to see where life takes her next.

Wednesday, January 6, 2016

One Stop Shop: Financial Wellness


Lots of financial Resources in one location! On Saturday, January 23rd, join us for our One-Stop-Shop on Financial Wellness. Listen to the following speakers and get your questions answered:


9:00- 10:00AM                        Michael Cahill, WestPoint Financial

10:30 -11:30AM                      Gordon Homes, MetLife Center for Special Needs Planning

12:00Noon to 1:00PM            Flora Williams, Leona Financial Management

1:30 -2:30Pm                          Melissa Justice, The Arc Master Trust

Monday, October 26, 2015

Support Businesses that employ individuals with Down syndrome


October is Disability Employment Awareness Month. Let’s celebrate those businesses that employ individuals with Down syndrome. Below is a list of businesses that employ an individual with Ds. If you know of a business that is not listed, please let me know at Lisa@dsindiana.org...

 

Applebee’s

2659 E Main Street

Plainfield, IN 46168

 

Arni’s

202 W Washington St,

Lebanon, IN 46052

 

Chick – Fil – A 

5240 E Southport Rd

Indianapolis, IN 46237

 

Down Syndrome Indiana

708 E Michigan Street

Indianapolis, IN 46202

 

Fox’s Pizza, Lafayette

4921 IN-26

Lafayette, IN 47905

 

JCPenny

8752 Michigan Road

Indianapolis, IN 46268

 

Kohl’s

5825 Sunnyside Road

Indianapolis, IN 46235

 

Kroger

1217 S Rangeline Road

Carmel, IN 46032

 

Longhorn Steakhouse

5840 W 86th Street

Indianapolis, IN 46278

 

Marsh



 

Pepe’s, Lafayette

2525 Sagamore Pkwy S,

Lafayette, IN 47905

 

Robert Brothers Law Office

151 N Delaware St # 1400,

Indianapolis, IN 46204

 

Starbucks

1315 W 86th Street

Indianapolis, IN 46260

 

Univeristy of Indianapolis

1400 E Hanna Avenue

Indianapolis, IN 46227

Monday, September 21, 2015

Marsie Celebrates her 80th Birthday!

By Guest Bloggers Bill and Barb Mathauer




How can I describe MARTHA “MARSIE” MATHAUER?

At the beginning, schools had no accommodations or programs to teach students with Down Syndrome or any special need students because the teachers didn’t have the education or experience to allow Martha to attend school with her brothers and sisters. 


No standardized testing or programs were even available to children with Down Syndrome or any other type of learning challenges.  But Martha had a very close family with great relationships and family dynamics abounding.


Martha’s favorite activities included taking family car rides in the country and trips to Linder’s Ice Cream store, riding her bike, playing with her dogs Spikey and Tippy and parakeets Birdie and JoJo. But the highlight of her day would be visiting with nieces and nephews and she called them all her “grandkids” because she lived with her parents, who referred to them as grandchildren.


There was lots of interaction with her siblings and later after moving to Greenwood, three of her siblings and their families lived on the same block as Martha and her parents and they all visited her almost daily.


She enjoyed making craft items, doll clothes, watching TV and was independent in her wants and needs.  Even though she was unable to read or write she loved books:  she would study the cover of each book and use her great imagination to tell you all about the story.  Another highlight of her day with her grandkids was when they brought her their old school workbooks:  she would spend hours tracing the letters and numbers and felt she had her homework to do, too.  Marsie loved make-up and nail polish and lots of magazines.   She loved to help cook and always expressed her ideas about everyday life because she was an integral member of the family, by often reminded her siblings that SHE was the oldest and so they had to do what she wanted ~ resulting in lots of joking around and teasing and of course, always plenty of laughter and fun.


A new opportunity opened up for Martha which she only dreamed about. She began   going to a sheltered workshop with the Johnson County Association Retarded Citizens at Gateway Services in 1989 in Franklin,  Indiana and she felt a great deal of pride and accomplishment.  She soared with this new independence:  now having her first real JOB outside her home!  She couldn’t wait for the bus to arrive and off she went by herself – what an accomplishment!  She easily made friends and enjoyed their camaraderie and even had a boyfriend “Teddy”.  They attended workshop parties and danced the night away.  This special friendship was another milestone for her, which enhanced her life experiences by growing and maturing in so many ways.


As time went on, Grandma spent various periods in a nearby nursing home.  Her siblings/ spouses and nieces took turns staying with Martha at night.  We were supposed to be taking care of her. When walking in the door from work there was chicken in the oven ready for us to eat & her clean clothes were in the washer and coffee made every morning - Marsie was taking care of us!


In 1990, Martha moved outside her home for the first time at age 55.  She moved into a group home about a mile away because her dad had died 11 years earlier and her mom’s declining health warranted a long term care facility.  This nursing home was also within 2 miles from Martha’s new group home operated by Cardinal Services.  Her adjustment went fairly smooth but she lost privileges because she was used to fixing her own food & coffee and now she was unable to perform those tasks without supervision. The other women at the group home had come from institutional settings and were gaining privileges.  There were some learning curves to manage and re-think – especially for the staff.  Martha’s roommate was her best friend from their workshop:  WOW! 



Martha resided there until undergoing a knee replacement & therapy and then moved in 1997 to North Willow, a facility for physically and mentally challenged adults with their own sheltered workshop facility for the residents.  She was excited to be able to help push a wheelchair for someone or pick up something off the floor for those unable to do it themselves.  She fit in very well and with her outgoing personality, she enjoyed the staff who appreciated her willingness to be the first to volunteer with using a potter’s wheel when the other residents were frightened to try.  She told them it was “neat” and easy to use and before long, the other residents took their turn.  Like any home, there were challenges but Martha plowed thru and continued to joke with others and enjoy herself. 


Martha continued to see family often and loved to go out to eat, go shopping and was very clever in soliciting a few dollars from family members.  When she received mail, she always looked for a dollar bill or two to be inside.  Martha joined in holiday parties, dressing as a “nun” at Halloween and as a shepherd and as an angel in the Christmas Plays. Our family joined her for these special times and she always enjoyed the visits from Santa.

She lived at North Willow, which became Golden Living for 18 years.  Then in the spring of 2015, the facility was changing its focus to just serving short-term physical therapy residents. This resulted in finding a suitable and engaging new home.  After much discussion and insistence by her family, we found a wonderful location near family at University Heights Health & Living Center.  When she was leaving North Willow the last time, the staff was pretty emotional at her departure because she had become their family, and ours, too
.

Martha gets around her new home in her wheelchair by walking with her feet and likes bingo, manicures, movies and surprises from family members who see her at least weekly if not several times a week.  Recently, Martha celebrated her 80th Birthday on July 24, 2015 with family and festivities!  We believe that Martha is the oldest living Down Syndrome person in the State of Indiana and she is such a blessing to all who meet her.  She has gifted all of us with her humor, laughter and kind heart.      
                                          

Unbeknown to any of Martha’s brothers and sisters, we discovered that when Marsie’s nieces were pregnant, they refused amniocentesis.  They were appalled that their doctor would suggest such a test!  If any one of them had a baby with Down Syndrome, they would love the baby without reservations.  They all loved their Aunt Marsie and couldn’t imagine anyone wanting to try to change their minds by terminating  a pregnancy – it was so cruel and out of the question!  As parents, we were so proud of each of them.  They didn’t see those with challenges to be unworthy.  They were loved by Marsie and she knew how much they all loved her.   
                                                              

As these “grandkids” grew up with children of their own, they continue to share their children with Aunt Marsie by visiting, sending her cards and pictures, taking her to a movie and sneaking her an extra dollar bill or two.


From the day she was born, our mom and dad were not given any hope of her survival past 10 to 15 years.  Doctors suggested putting her in an institution so she wouldn’t be a burden.  But LOVE and FAITH were strong beliefs held by our parents, and what a joy Martha is and how many lives she has touched throughout her life. 



Marsie has indeed been a wonderful influence in each of our lives and taught each of us Joy, Perseverance, Acceptance and to Seize the Moment by encouraging everyone’s dreams to become a reality.  Marsie has indeed gifted each one of us and is a blessing that keeps on giving with her spunky personality and big smile.  Thank you for letting us share Martha Marsie Mathauer with each of you and hope we always see the gifts in one another without reservation.  We are so fortunate to have Martha enrich our lives – and we thank God for allowing us to be her family. 

Monday, August 3, 2015

Understanding Prenatal Testing on September 19th


With the advances being made in prenatal testing, more and more women are finding out earlier than ever that their child has Down syndrome. Surveys show that too often parents do not receive the rest of the information about what a life with Down syndrome can be like and about available support resources. For those parents who have received information and support, they describe it as a lifeline. This presentation will provide attendees the information to confidently engage our local medical community to ensure parents receive accurate, up-to-date information and support. Come and be that lifeline to the next generation of parents raising a child with Down syndrome.


Saturday, September 19th

8:30Am to 4:00PM

DSI 2nd Floor Ballroom

708 E Michigan Street Indianapolis, IN 46202

Free

Please RSVP to register@dsindiana.org or call 317-925-7617


About the speaker: Mark W. Leach is an attorney in Louisville, Kentucky and serves as the bioethics specialist for the National Center for Prenatal & Postnatal Down Syndrome Resources at the University of Kentucky. He provides training to local Down syndrome organizations on medical outreach. Mark’s daughter is endowed with Down syndrome and his son is endowed with curly, blonde hair. You can read more in Mark’s blog: http://www.downsyndromeprenataltesting.com/.

Thursday, July 9, 2015

New Indiana Law about Prenatal Testing


HB1093 took effect on July1st. It states that…

 

“When a positive result from a test for Down syndrome or any other condition diagnosed prenatally is received, a health care facility or health care provider shall provide to the expectant parent or the parent of the child diagnosed with Down syndrome or any other condition diagnosed prenatally the written information approved and made available by the state department.”

 

Down Syndrome Indiana was instrumental in getting this law passed and has already submitted materials to the Indiana State Department of Health for approval and dissemination. A huge thank you to Buffy Smith and Lucy and Marvin Selva for testifying about this important legislation. Their voices helped to get it passed. Gratitude also to Nina Fuller from SMILE on Down syndrome, Kim Dodson from the Arc of Indiana and Representative Ron Bacon for their work on this important piece of legislation.

 

Please Save-the-Date for Saturday, September 19th to learn more about this legislation and how to get involved in medical outreach to make sure that medical providers and parents have accurate and up-to-date information about Down syndrome.