New Down syndrome group holds first educational event

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COLUMBIA - The Down Syndrome Guild of Central Missouri had its first learning seminar in Columbia on Saturday. The seminar focused on encouraging independence in students with Down syndrome. 

Amy Allison, the chief operating officer of the Down Syndrome Guild's Kansas City branch spoke at the event. She said there is a need for education in the state's central region. 

"A big misconception about people with Down syndrome is that they need constant feedback and they need constant engagement and constant praising," she said. "All psychological research shows you that’s not the way to shape behavior." 

She said giving students with Down syndrome rewards could teach them learned helplessness. She said that cycle needs to stop. 

"Employers don’t follow you around and praise you any time you do something you’re supposed to do on the job," Allison said. "We want to make sure students are more workforce ready and capable."

According to Allison, there are 70 to100 families in the area that are caring for loved ones with Down syndrome. She said mid-Missouri's Down syndrome population is underserved. 

"We had a small community group that was operating under the Down Syndrome Guild for that last decade or so and we knew we wanted to do more in families and schools," she said. 

Paula Bakues has been a part of that "small community group." She has a 12-year-old daughter who has Down syndrome.

Bakues said events like the seminar help parents and educators learn more about how to help their children and students. 

"That's the reason myself and others are here, to learn what we can do to make our children a meaningful part of the community and enjoy their lives and have other people enjoy them," she said. 

Bakues said having a formal organization like the Down Syndrome Guild in central Missouri will be an invaluable resource. 

"Without that, you sort of flounder. You think you know what you want or what your need for your child, but you might not really know where to go find those answer," she said. 

She said mid-Missouri families who have loved ones with Down syndrome will benefit from the organization.

"Like the seminar today, parents and educators are able to come and learn about things that they maybe haven’t thought about and just help them find the right resources that they need," Bakues said. 

Allison said the guild will work to provide medical and educational resources, as well as raise awareness and education about Down syndrome. 

"People usually fear something that is unknown to them so we need to make Down syndrome known to everybody," she said. 

Allison said the Down Syndrome Guild held a fundraiser that allowed it to gather enough money to open a central Missouri branch. She said the community's support "blew her away."  

Allison said the group was intentional about putting "Central Missouri" in the name and not just Columbia. She said the group wants to reach out to the smaller communities, too. 

Bakues said there are people outside Columbia and Jefferson City who have Down syndrome, so it is important to reach out to them. 

"We probably have a population that is the size of a metropolitan city when you count in all those communities. It’s very critical to include those families too," she said.

Allison said the guild will hire full-time staff in January and hopes to put on more seminars and events in the coming months.