MIDWEST CITY — Breakthroughs in research, advances in speech therapy and more emphasis on acceptance and inclusion are making life easier for people with Down syndrome.
That hopeful message was delivered this month to about 150 parents, educators, clinical professionals and caregivers during the fifth annual conference of the Down Syndrome Association of Central Oklahoma.
Conference sessions centered on speech therapy approaches, research advances and effective approaches toward helping people with developmental delays.
Ivan and Dana Poulter, of Edmond, are the parents of Nathaniel, 5, who has Down syndrome.
Dana Poulter is president of the association and said it has grown substantially since its founding in 2000.
“The goal of our association is to be a resource for families, educators and the medical community,” she said.
Poulter said that after their son was born, they contacted the association and were put in contact with other parents.
“We share with each other what is working and not working,” she said. “We rally together.”
Robert Powell and his wife, Marne, of Edmond, are parents of a 2-year-old son with Down syndrome. Robert Powell said the association has been an excellent resource for them as they search for information about how best to help their son, Rob.
“We didn't have prenatal discovery. We found out a day after he was born,” Powell said.
He said the association connected them with other families and provided answers to a number of their questions.
The Powells have two other children, neither of whom have developmental disabilities.
“Before we had little Rob, we didn't have much experience with the disabled community,” said Powell, who owns a commercial cleaning business. “We're hoping to learn as much as we can.”
Response to this year's conference has been encouraging, said Megan Winkler, executive director of the association. The conference was sponsored jointly by the state Education Department Special Education Services, Oklahoma Speech-Language-Hearing Association and State Rehabilitative Services Department.
“They were very appreciative to get to go to training for children with special needs,” Winkler said.
Down syndrome is a chromosomal condition that occurs once in every 691 births. Dr. Michael Harpold, a leader in biomedical research efforts, said research is producing better treatment options.
“The primary focus is on better cognition and speech,” said Harpold, a conference presenter and chief scientific officer of the Down Syndrome Research and Treatment Foundation of Marlborough, Mass.
“What I am emphasizing is that in the last five years, there truly is unprecedented progress.”
Two clinical trials are underway on drugs to treat people with Down syndrome, he said, particularly in helping restore the brain's learning function.
Advancements also have been made in speech therapy approaches, said Texas speech pathologist Renee Roy Hill.
“Parents should not give up on their dream of children having good speech,” Hill said. “We can work on speech at any age.”
Hill presented conference workshops on speech issues affecting preschoolers, schoolchildren and adults.
“The problem is all the same. The muscles aren't working,” she said. “We can target muscles and improve speech.”
Winkler said the association has grown to serve 575 families in Oklahoma, including 380 in the metro area.
Worldwide, an estimated 4 million people have Down syndrome, including 400,000 in the United States.
Life expectancy has gone from age 9 in 1929 to about 60 today, Poulter said.
One factor in the longer life span is that people with Down syndrome are typically not institutionalized.
“They are being raised in people's homes. Something as simple as inclusion has changed life expectancy,” she said.
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Fundraisers and events
The Down Syndrome Association of Central Oklahoma sponsors a fundraising Buddy Walk and golf tournament each year and has quarterly breakfasts for new parents, workshops, holiday-
The goal of our association is to be a resource for families, educators and the medical community. ... We share with each other what is working and not working. We rally together.”
Down Syndrome Association