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There For The Special Kids

04/24/2017 09:39AM ● Published by Christy Quebedeaux

Gallery: Down Syndrome Association Of Acadiana [2 Images] Click any image to expand.

Down Syndrome Association Of Acadiana

By Scott Brazda

The day that I started, I knew I was at home. Wonderful people, even though they’re very hard working and dedicated. All of these women with me are so good, and it’s a whole team effort. That’s the Down Syndrome Association of Acadiana.”

Tony Piontek of New Iberia has Down syndrome, but at the same time, is one of the voices for the many who have one extra chromosome. He is a self-advocate for the organization on local, state and national levels.

“Those of us in the Down Syndrome Association of Acadiana are all volunteers. We’re all parents or people that just love our children, and we do this out of love. We are a family of families, and we’re doing everything possible to show the world that our kids matter, and that they are capable of doing so many wonderful things.” 

Not only is Molly Guidry the media coordinator of the Down Syndrome Association of Acadiana (DSAA), she is also the mother of a Down syndrome child, Ellie Grace. She speaks of DSAA from the heart, on both the professional and personal levels.

The mission of the Down Syndrome Association of Acadiana (DSAA), a non-profit organization, is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, their families and our community. – Down Syndrome Association of Acadiana.

“Twelve-and-a-half years ago, Anita Ford of Lafayette had a child, Eric, who had Down syndrome,” says Molly Guidry. “The resources, she found, were minimal, nearly non-existent. Anita said we needed something in this area, so she started gathering moms, and they met for the first time in a living room.” And now? “It has just grown and grown and grown.”

It was just a handful of mothers back in 2004, mothers who wanted more… mothers who didn’t know where to turn… mothers in need of information. Their children were often considered lost and ignored by society in general, and therein was the core problem because Anita Ford and these other mothers of Down syndrome children who knew that these kids had so much to offer the world. Almost in unison these mothers were shouting, “I have this wonderful child, we have nothing in place, and we don’t want our children labeled,” explains Guidry. 

We provide families with a support network, sharing experiences from the pre-birth of a child throughout the states of education and adult living within the community. --- Down Syndrome Association of Acadiana.

The networking was the thing, says Guidry, the realization of these mothers that they were not alone. Their special children had brought them together, and slowly but surely, there began a sharing of information, of stories, of challenges, of reasons to cry and reasons to cheer. What was once a Down syndrome mother here and another there, suddenly became a team of some very special children and their families. Molly Guidry herself became a part of that team back in 2007.

“My daughter Ellie Grace was born 10 years ago with Down syndrome,” she says, “and at first, I looked at the Internet for help and guidance. But what I found were just horrible, gruesome things, and I just kept telling myself, ‘This can’t be, this can’t be. There has to be more.’” And when she learned about DSAA? “I saw what they were doing with other Down syndrome families and almost right away I knew I wanted to be a part of the organization and watch it grow.”

Our purpose is to promote the interests of persons with Down syndrome and their families through advocacy, public awareness and information covering all aspects of Down syndrome. --- Down Syndrome Association of Acadiana.

Tony Piontek has walked the walk and talks the talk. “Even before I graduated from New Iberia Senior High in 1994, I wanted to be involved,” recalls the 43-year-old Piontek. “What has really captivated me, is not just being a voice, but also being able to adapt, to understand their needs and know that I can be there for them. I’m more than just their voice, but also a personal friend in a way.”

Through the course of 20 years as a DSAA board member and advisory council, Piontek has become an advocate for Down syndrome patients, not just in Acadiana, but throughout the United States, so much so that he also served a three-year term on the National Down Syndrome Board of Directors. “So many families ask me to speak for them, to be their voice. I bring tons of hope, whether on the local or national level, and anyone that needs me to speak, I’m there.”

The Down Syndrome Association of Acadiana’s roll is now nearly 60, and Guidry says that membership isn’t exclusive to local parents. “We have one family that comes all the way down from Shreveport to be a part of our events, and we’ve got another from Alexandria; we even had a family come all the way from Florida for our iCan Bike Camp.” Activities such as the bike camp (85% success rate in getting campers to ride solo), agility classes at Little Gym and Cool! I Can Cook! have brought national recognition to Down Syndrome Association of Acadiana. “I don’t think the hearts and acceptance of our area is matched anywhere, and it puts Acadiana on the map,” sums up Guidry.

Our primary purpose is to support and connect families of children with Down syndrome with events throughout the year that give families an opportunity to meet, mingle and gain information from each other.    ---Down Syndrome Association of Acadiana.

Each year the Down Syndrome Association of Acadiana sends one local family to a national convention, a place where that family can learn more about what’s going on, trends and potential services and, most importantly, are reminded that their families “are going through the same things families everywhere are going through.” 

Advocacy on behalf of Down syndrome kids is never-ending, and DSAA representatives have made a number of trips to Washington, D.C. to speak with legislators. “We do it as a group of eight or ten, so they remember us, and we often team up the New Orleans group for greater impact,” explains Guidry. “Once the lawmakers see that we’re real, you’d be surprised to see how quickly they open up and tell their own stories.”

“The greatest challenges involve finance, education and support,” says Piontek. “Sometimes it feels like the government does not even care, and very often it’s a matter of getting lawmakers to use the money correctly.”

Our ultimate goal is to realize the complete acceptance and inclusion of individuals with Down syndrome into all aspects of family and community life. To advocate on behalf of people with Down syndrome for their rights as individuals. --- Down Syndrome Association of Acadiana.

The group’s major fundraiser is the annual ‘Buddy Walk,’ and those Saturdays in October are truly sights to behold. Nearly 2,500 people, many of them in t-shirts representing teams or schools, show up at Parc International to walk through downtown Lafayette, and the enthusiasm, the joie de vivre in the air is infectious. “We just had our 12th Buddy Walk, and it’s so good to see all of the other kids come and spend the morning with us, and just be so accepting and loving toward our kids,” smiles Guidry. “Thirty to forty teams, and it’s an opportunity to put forth our message of training, tolerance, acceptance and support.”

And awareness, too; that’s a major element for DSAA as well. The group is helped by a number of medical professionals who continually let parents know that DSAA exists and is ready to help… when the parents are ready for that help. “We have a binder full of all kinds of information—services, contacts, etc.—and we get that binder to the families for them to look at on their time,” says Guidry. “It’s a lot to absorb, and we just want to let them know we’re there. We put it in their hands, and we just want them to reach out when they are ready to do so.”

It is our strong desire to encourage a society in which people with Down syndrome can involve themselves in community activities and be assisted in their development of the skills necessary to do so. --- Down Syndrome Association of Acadiana website.

“Ellie Grace can swim; a number of the kids in her 4th-grade class at S.J. Montgomery couldn’t. But Ellie can’t tie her shoes, and almost all the kids in the class could. These 4th-graders were amazed, and they’ve really come to take Ellie Grace under their wing. All of us, special kids or not, are different, but at the same time, we’re the same. They have crushes, boyfriends and girlfriends, they have jobs and they don’t like to be teased.”

 “What we try to get across at Down Syndrome Association of Acadiana—and nationally, for that matter---is that we are more alike than different,” furthers Piontek. 

“That’s the message of DSAA, one that I’m honored to share. And you know what?

“It’s just an extra chromosome.”

Today, Health+Wellness, In Print Down Syndrome Association Of Acadiana Tony Piontek Molly Guidry Down syndrome Ellie Grace

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