COLUMBIA — As the minutes counted down to midnight on Dec. 31, Hope McPheeters and her family huddled around a 14-inch computer screen watching vote tallies on the Pepsi Leader Board.
The Columbia mom was hoping her plan would be a $25,000 winner in the Pepsi Refresh Project, a giveaway where online voters decide which ideas are most deserving of grants.
There will be two installments of $12,500 from the Pepsi Refresh Project.
The first $12,500
$10,000 for the Ella’s Hope Walk for Autism.
$2,500 to the Thompson Center to go toward creating a new service that deals with social and group learning skills to help kids transition to pre-school or kindergarten classes.
The second $12,500
$5,000 toward scholarships for Missouri families.
$5,000 to the Kenny Rogers Children’s Center to go toward starting up an early intervention program or toward more scholarships for families.
$2,500 to the Thompson Center for the same purpose as the first half.
The Ella’s Hope Walk for Autism will be 11 a.m. to 1 p.m., Saturday, April 30, at Cosmo Park. April is Autism Awareness Month.
Registration will begin at 9:30 a.m. and walkers will take their mark at 11 a.m.
There will be food, refreshments, and a kid zone, complete with face painting and a bounce house.
Resources like the Thompson Center and other organizations geared toward autism will be there.
It’s $20 to register and all proceeds from the walk will go toward the Ella’s Hope foundation.
Voters slipped her into the No. 10 slot. McPheeters finally accomplished what she set out to do — raise money for autism.
"I’ve met so many wonderful people that have said what you're doing is great, you’re an inspiration,” she said. "But it's all these same people that have inspired me to keep going."
She received half of the money on Feb. 1 and will get the rest in August.
The first portion will sponsor a walk for autism in April. The rest will be donated to a service that helps children transition to pre-school or kindergarten.
In August, the remaining $12,500 will fund scholarships for Missouri families, support an early intervention center and continue the transition program.
McPheeters calls her idea Ella's Hope.
The name was inspired by her 6-year-old daughter, Ella, who was diagnosed at age 2 with a type of autism called Pervasive Developmental Disorder Not Otherwise Specified.
This is a condition on the autism spectrum where individuals have some, but not all, of the classic symptoms — lack of eye contact, repetitive movements, delays in language and social skills.
Ella is just like every other kid in so many ways, McPheeter points out. She loves popcorn, cartoons and is a "whiz" at the computer.
"One of her favorite things to do is get things wrong, like lines to a song or the types of sounds animals make. Like when she asks me if a kitty goes cock-a-doodle-doo just so we can laugh about it afterward."
But raising a child with autism isn't easy, McPheeters said.
"Autism’s kind of like a brick wall. It just hits you in the face," she said. "When I found out, I was speechless. I didn't know anything about it."
But the physician gave her a light at the end of the tunnel.
"I remember the doctor saying, this isn't a death sentence. With this diagnosis, Ella can start early intervention."
Early intervention detects autism early and uses behavioral therapy to develop new skill sets. The program can be tailored to meet each child's needs.
Studies show that 90 percent of kids who get early intervention make more progress than those who don't.
"It was the best thing we ever did for Ella," McPheeters said. "There's a lot of denying, a lot of waiting for things to change, and a lot of excuses like 'Oh, they're just late bloomers' going on with autism."
"And yeah, things might change. But they might not."
Tara Shade, a behavior therapist at Alternative Community Training and a partner with McPheeters during the competition, said the worst thing to do when a child has autism is nothing.
"The best thing you can do for these kids is engage them in the world, and that's what this therapy does," Shade said. "Being social doesn’t come easy to them. They're in this other world."
Shade and McPheeters have been friends since college at MU. Shade also has a child with autism, 7-year-old Rye.
"When you meet another mom who has a child with autism, or in this case, reconnect with one, it's an instant bond," Shade said. "Because you know how hard it’s been."
Both Shade and McPheeters agree that one of the challenges is the cost.
"Autism is just expensive, and it's one of the lowest-funded disorders," McPheeters said.
Sometimes parents give up on early intervention because they can't afford it, Shade said.
"If you can't pay for it, what do you do?" Shade said. "These kids don't get any better. They just stay in that world."
Jessa Love, a clinical assistant professional at the Thompson Center for Autism and Neurodevelopmental Disorders, said 20-30 hours of therapy a week is like paying college tuition for a child who's pre-school age.
"Insurance doesn't cover enough, and it isn't available to everyone who needs it," Love said.
Ella's Hope Walk for Autism in April is designed to generate money and recognition for the disorder.
"The walk is to raise awareness. To come together as a community and walk for autism," McPheeters said. "It doesn't matter if we raise $300 or $3,000. We just want to show people that we're here to help."
All the money will stay in the community, McPheeters said. She hopes it will clear waiting lists for families seeking a diagnosis, allow them to afford more therapies, and provide resources after a diagnosis.
Now that she accomplished her mission, McPheeters said she wants to encourage others to follow their dreams.
"Set your sights on what you want and go for it. What do you have to lose?" McPheeters said.
"I put Ella out there. I wanted to let people know that we’re OK. We’ll survive this."