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March 8, 2014

Families often unaware of helpful groups for kids with disabilities

TERRE HAUTE — One Saturday morning event in Terre Haute aimed to raise awareness about the resources available to people with disabilities.

Well-decorated tables with flyers, posters, brochures, candy and other giveaways were inside the Booker T. Washington Community Center for the Disability Awareness Resource Fair — hosted in conjunction with Disability Awareness Month — where about 15 organizations working with people with disabilities gathered to provide information and speak to families about the services they offer.

One of the organizers of the Fair was Terre Haute mom Dixie Russell, who has a 4-year-old daughter with Down syndrome.

“It’s just important to let families know that there are resources out there to help them maneuver through the life of special needs,” Russell said. She is a member of the local support group Wabash Valley Stars, which works to support families with a family member with Down syndrome.

In addition to Wabash Valley Stars, some of the other agencies working with adults and children with disabilities also participated, including Down Syndrome Indiana, Hamilton Center Inc., Arc of Vigo County, INDATA Project at Easter Seals Crossroads, Autism Society of Indiana and Harsha Behavioral Center.

Working at the table for another group, ASK (About Special Kids), was volunteer Jessica Evans of Owen County, who wanted to raise awareness about special needs and the resources available. She is a mother of a toddler with Sotos syndrome, a rare genetic disorder causing physical overgrowth during the first years of life.

“We knew nothing” about Sotos when told about her daughter’s condition, Evans said. She performed some research and found understanding from people involved with ASK, a group of parents and professionals with children with special needs, she said.

“I wanted to find a way to give back,” she said of the volunteer work.

One attendee was Russell’s 4-year-old daughter, Sophia, who said “Hi” to friends — both adults and children — at the event. Russell had Sophia in mind when she organized the fair, which was intended to be a one-stop shop for information for families and individuals with disabilities — both adult and children — to get help on a variety of issues, such as medicaid waivers, behavioral health issues, school issues and employment.

When Sophia was born and the family was told about her condition, there was no “guidebook,” Russell said, so she had to find information and help on her own. She said she has attended similar fairs out of town and noticed that not many of them are done in Terre Haute.

Because raising a child with special needs requires extra supplies and services, Russell said she wants to let families know that there is support available for families.

There were some “additional struggles with her that I didn’t go through with my first child,” but “she is amazing every day. She brings so much joy to our lives,” Russell said. “Overall, she is more like any other kid than different.”

Tribune-Star Reporter Dianne Frances D. Powell can be reached at 812-231-4299 or dianne.powell@tribstar.com.

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