Published Oct. 15, 2004, Wynne Progress
By Matt Kelsey
It’s the small things that matter now. A wave, a hug, a facial expression, a new food he’ll eat... maybe if they’re lucky, someday, a single, quiet word.
These are the hopes and dreams of Shannon and Leigh Smiley for their son, six-year-old Jeremiah. They live for the moments when they see a glimmer of possibility, when Jeremiah takes the babiest of baby steps out of his inner prison and toward some semblance of normalcy.
It took a while, but after Jeremiah was officially diagnosed with autism, the Smileys eventually let go of the larger dreams, and they spend every waking moment focusing on the tiny ones.
“On one hand, it’s really hard,” Leigh Smiley said, “because all those dreams you had for your little boy – getting married, going off to college – those are gone, and it’s not the same. But on the other hand, you get caught up in all these little things that he’s doing, and you build those new dreams.”
When Jeremiah was 15 months old, he had all the traits of a non-autism child. His vocabulary consisted of about 35 distinct words, and he was responsive to human contact. Then, at around 18 months, a switch was flipped inside his brain, the brightness in his eyes disappeared, replaced by an emptiness, and the autism took hold.
“We saw him slowly regressing,” Leigh Smiley said. “He stopped saying words. Then he stopped waving goodbye.”
Jeremiah also picked up some strange habits.
“He started making these huge trains of items all through the house,” she said, “and if you moved one piece, his whole world came crashing down.”
For Leigh, who works at Village Creek State Park, and Shannon, who works at the highway department, their world crashed down on January 6, 2003, the day Jeremiah was diagnosed with autism.
The Smileys have an unknowable amount of hope, but their lives also contain the sadness of knowing their boy is trapped inside his own mind.
“When you see other kids talking, saying ‘mommy’ and ‘daddy,’ it makes you depressed,” Shannon Smiley said.
Leigh added, “You grieve for the child that was.”
It’s better now than it was two years ago. Jeremiah is a different person with a much more mild case of autism.
“He’s come a long way since he first regressed,” Leigh Smiley said. “Over the last two years, he’s been very good with eye contact, very affectionate.”
“The humor and the wanting you to look at him has improved in the last year,” Shannon Smiley
And the eyes are back. Unlike many autistic people, Jeremiah has bright, shining eyes. In them, you can see that he knows, that he wants to be involved with the world around him.
“He picks up a lot,” Shannon Smiley said. “He understands a lot that we tell him. But there are still some abstract concepts that he doesn’t understand.”
Jeremiah’s world is simple. He reduces everything to its common denominator, and clings to the samenesses in life.
One of his most unique traits is the food he eats. To Jeremiah, food should be brown. In his mind, food and the color brown are the same thing. If it’s not brown, it’s simply not edible. He eats foods in many different shades of brown, but he prefers some over others.
His favorite food is the chicken strips from Sonic. The Smileys could singlehandedly keep the Wynne Sonic in business. He also likes Oreo and chocolate chip cookies (but no other sweets), pretzels, bacon, pancakes (no syrup), and biscuits.
One day not long ago he ate popcorn. The plain white variety. For the Smileys, it was a significant breakthrough, the kind they look for every day.
“There is no cure for his kind of autism,” Leigh Smiley said. “The best you can hope for is improvement.”
So the Smileys, who have become autism experts in the past two years, ask: What kind of therapy will help our son?
Through research they found the program “4 Paws For Disability,” which connects autistic children to service dogs.
One theory behind the use of dogs with autistic children is that the child will be required to use language to communicate with the dog. Autistic children discover they often don’t need language when talking “up” to parents, but they may need to speak when communicating “down” to a dog.
“These dogs are also trained as search-and-rescue dogs,” Shannon Smiley said. “If he were to run off in the woods and we called to him, he wouldn’t be able to answer us back.” This is a real concern for the Smileys, who live on Crowley’s Ridge not far from Village Creek State Park.
Another benefit of the dog would be that children may connect better with Jeremiah. In Mrs. Pruitt’s class at Wynne Primary, the children sometimes shy away, not knowing quite how to approach him. But if he had a trusty dog at his side, things would be different. He may even
become the most popular kid at school, without saying a single word. The smile on his face would say it all.
The dogs – usually labs or retrievers – are registered service dogs, which means they can go anywhere seeing-eye dogs can go. They are highly-trained animals. And because of that, the price tag is high as well.
A dog would cost the Smileys nearly ten thousand dollars.
So far, the family, along with help from the community, has raised a little over $1,000, through a booth at the recent Frontier Festival. Another benefit event will be held Saturday, Oct. 23 at Village Creek State Park. The barbecue dinner and auction will begin at 5 p.m. Cost is $6 per plate. The auction will begin at 6:30 p.m. Earlier in the day, horse rides and wagon rides will be offered to kids for $2.
They have a long way to go, and they hope the community will see the need and continue to offer its help.
“Through therapy,” Leigh Smiley said, “what we’re hoping is eventually he’ll be able to speak again, that he’ll be able to interact with people. That he’ll eventually be able to take care of himself.”
The babiest of baby steps. It’s the only way Jeremiah will get there.
And it seems like the Smileys experience new breakthroughs all the time.
Jeremiah’s sixth birthday was Tuesday, Oct. 12. The family celebrated with dinner – Sonic chicken strips – at Jeremiah’s grandmother’s house. He received a Red Rider Wagon, his favorite movie, a playhouse and some clothes.
“This is the first time he has really understood what the presents meant,” Leigh Smiley said. “He understood that whatever was under that wrapping was something for him. That was a big change over the last couple of years.”
Eventually, the Smileys hope, the baby steps will turn into paces, and then running strides. They hope Jeremiah will break through the shell and come back to this world. It’s right there, underneath the wrapping, just waiting to be opened.
“We just have faith that one day, it’ll all just come back to us,” Leigh Smiley said, turning to speak to Jeremiah. “Right, baby?”
Shannon Smiley added, “We look at our boy as a special gift.”
Perhaps Leigh and Shannon Smiley are finally realizing the gift they have underneath the wrapping.