Down Syndrome League holds butterfly release (w/video)

Sara  Sneath By Sara Sneath

March 26, 2014 at 6:01 p.m.
Updated March 26, 2014 at 10:27 p.m.

Brock Murray, 4, of Victoria, admires a painted lady butterfly perched on his finger while his mother, Stacy, right, watches him during the second annual butterfly release hosted by the Down Syndrome League of Victoria at the Victoria Educational Gardens.

Brock Murray, 4, of Victoria, admires a painted lady butterfly perched on his finger while his mother, Stacy, right, watches him during the second annual butterfly release hosted by the Down Syndrome League of Victoria at the Victoria Educational Gardens.

David Madden was diagnosed with Down syndrome at birth July 5, 1982. A Victoria pediatrician called David a "mongoloid" and suggested to his mom, Esther Madden, that David be institutionalized.

Esther, 67, of Victoria, did not know what Down syndrome was nor how it would affect her child. What she did know was that she and her husband were taking David home, where they would raise him and love him like their firstborn.

David and his mom took part in the second annual butterfly release put on by the Down Syndrome League of Victoria on Sunday.

The release is part of an international awareness effort this month geared toward spreading the word that children with Down syndrome can be raised at home and grow up to be valued members of their families and communities.

Down syndrome is a cognitive disability that results from a chromosomal abnormality. Previously, doctors thought children with Down syndrome had a lifespan of about 30 years and were not capable of leading full and healthy lives.

But the prognosis for the genetic abnormality has become a lot brighter, said Suzanne Shepherd, co-president of the Down Syndrome Association of Central Texas.

The life span of people with Down syndrome is now between 55 and 60 years old. With higher parental expectations, inclusive education and good medical care, many people with Down syndrome can read, write, graduate from high school and go on to live on their own with some support, Shepherd said.

The prognosis of Down syndrome largely changed in the 1970s with the Individuals with Disabilities Education Act, which gave people with disabilities the right to go to public school, Shepherd said.

"Once we brought kids with Down syndrome into schools and gave them access to education, expectations started to change. Now, we had kids reading and writing and showing potential," Shepherd said.

Children allowed to have a more inclusive education showed better academic potential, which, in turn, made people wonder what would happen if they were given better access to medical treatment and rehabilitation, Shepherd said.

"I think the idea that these children are essentially unable to connect or unable to perform is sort of the idea that most people have, and it's just absolutely not true for most people with Down syndrome," Shepherd said.

About 80 percent of kids in the Down Syndrome Association of Central Texas are reading between kindergarten and second grade, she said.

The potential for people with Down syndrome may be brighter yet. In the past few years, cognitive research has led to the development of medicines that will not be a cure for Down syndrome, but they will add 10 to 15 points to their IQ, Shepherd said.

Many people with Down syndrome have a mild intellectual disability. An IQ-boosting medication could mean the difference between what kind of jobs people with Down syndrome could have, she said. Three clinical trials with these pharmaceuticals are currently underway, she said.

At the butterfly release, David sat engrossed in coloring in a picture of a butterfly until asked his goals. He sat up and pushed the picture across the plastic fold-up table to his mom to finish, rattling off his aspirations.

Friday was World Down Syndrome Day, and on Sunday, the Down Syndrome League of Victoria had its second annual butterfly release.

Butterflies are a symbol of hope, said Morgan Matula, the Down Syndrome League of Victoria president.

"Individuals with Down syndrome have dreams, hopes and aspirations like everyone," Matula said.

David's long-term goals include landing an interview with H-E-B, becoming a bagger and buying a blue jeep, he said. And for the short term, he wants to bring a "hot date" to the 2014 Special Needs Prom.

"Our goal was to raise David as a normal child, and we accomplished that goal," his mother said.

David's goals are definitely within reach, Matula said.

"Many individuals with Down syndrome live on their own, get married and are able to hold down a job," she said.

When David was diagnosed, his mom did not know what to expect or where to find resources to help her raise a child with Down syndrome.

"I thought that he would never amount to anything," his mother said.

David started school at age 3 and began participating in Special Olympics when he was about 6, she said. Last year, David and his mother became involved with the league.

As members, the two share experiences with other people who have Down syndrome and their loved ones. But for the most part, David's mother said the difficulties and joys in raising a child with Down syndrome are shared by all parents.

"David taught me to be patient, to appreciate him and to love him," she said.



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