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Tuesday, May 3, 2016

Autism group leader understands struggle

Sunday, August 12, 2012

What if you were faced with a situation that was totally overwhelming and foreign? Where would you turn?

This is, of course, an understatement for someone whose child has been diagnosed with an autism spectrum disorder, as they will face economic and social challenges unlike any that parents of "normal" children will face.

But, one comforting thing for local parents of children on the autism spectrum is that they have a fierce warrior on their side. One that, through 14 years of volunteering and raising her own autistic child, has worked diligently to provide children on the spectrum in Bedford County with enjoyable activities and the tools for success.

Keeping a promise

Her name is Leta Frame, and she started the Bedford County Association for Exceptional Students (BCAES) to help parents like herself. The charitable organization has two legs -- Parents ACT is a support group for families who live with autism, and Aut 2 Be Kids is a recreational group for children on the spectrum.

"When my son, Levi was born, there was nowhere to turn," Frame said. "That's why I do what I do. I promised God, my son and myself that if I could stop that from happening to another parent, I would.

"I'm not perfect; I don't know everything," she said. "But I will help parents find resources."

So far, her determination has proven to be a success. Parents ACT started out with five members; at last month's family night, there were 78 in attendance.

Night of fun

This was one of their five summer "pool nights" at Shelbyville Recreation Center. BCAES pays to privately rent the pool, giving the Aut 2 Be Kids a chance to have the pool to themselves.

Just them and their friends, total acceptance, no one staring, and lifeguards catering with a smile.

"Other kids get to go to clubs, so this is theirs," Frame said. "Some of the kids don't even know they have autism. They're just going to hang out with their friends."

As the only group in Tennessee that offers summer camps, monthly social and recreational activities and parties, Parents ACT and Aut 2 Be Kids attracts families with autism from places like Fayetteville, Lewisburg, Tullahoma, Winchester and Murfreesboro.

In addition to their regular support group meeting, they plan a Valentine party, back to school giveaway, Fall festival, pizza parties, Bounce U parties, bowling outings and a Christmas party.

The kicker is that the organization funds all of the activities for families free of charge through their annual motorcycle ride, and now, the I Am What I Am music festival and autism benefit.

Funds needed

"People think that because you have autism, you qualify for social security income and disability," said Frame. "That's a very big misconception. There is no financial help for these programs or these children."

With the extra income from the I Am What I Am music festival, Frame hopes to provide more educational programs through BCAES.

"I am a believer in educating parents," Frame said. "When a parent is handed the diagnosis for autism, they will know no more when they leave except that now their child has autism.

"How then do you stop a meltdown?" Frame asked. "How do you help a child eat and communicate? A pamphlet doesn't do it. You can check out every book in the library, but it won't do it. What does help a parent is hands-on instruction from someone who is knowledgeable in speech, social skills, or sensory integration."

And these expert speakers aren't cheap. Each can cost in the neighborhood of $300. And although it's just a start, a drop in the bucket, Frame knows that education will help to give her group members a better life.

Reasons why

"I don't do it for praise," she said. "I do it so that parents, grandparents, aunts and uncles can come into a room where something in their lives that isn't the 'norm' suddenly is.

"I want to give our kids the chance for better functional life and social skills," Frame added. "That's the goal in life -- to be accepted for who and what you are, and to live a functional life."

Frame hopes that more people living with autism in Bedford County will reach out, and join Parents ACT and Aut 2 Be Kids. For information, email her at parentsact@gmail.com or call her at 684-8169.

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