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Spreading hope over the radio

Parenting: Local mother of an autistic child shares tough journey and personal miracles on show

Posted: June 24, 2010 9:42 p.m.
Updated: June 25, 2010 4:55 a.m.

Shannon Penrod, of Canyon Country, with her son Jem Miller, 7, who was diagnosed with autism at the age of 2. Initially devastated over the diagnosis, Penrod was referred by a local family to applied behavioral analysis at the Center for Autism & Related Disorders, Inc. The process targeted Miller’s cognitive and social skills, which have improved.

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Jem Miller was a happy, verbal baby. At 18 months, he pulled out a guitar during his parents Oscar party, strummed some tunes and then waited for applause. The chubby-faced little ham seemed headed for a sociable future.

Doctors warned Shannon Penrod and her husband, Jim Miller, about following her pregnancy at age 40, so the Canyon Country mother released some anxiety when she watched her son perform.

But one morning, something felt different. Jem seemed different.

“I would say it was like a thief coming in the night and stealing a small piece of my child,” she said. “Just enough that you go, ‘Huh,’ but not enough to panic.”

Jem used to walk into his mother’s office and ask, “Mamma what doing?” while holding up his hands in question. Then it gradually became: “Doing?” with no hand gesture.

After a short while, he would walk in, say nothing and not look at his mom.

Doctors and friends told Penrod not to panic. About five years later, Penrod, 47, is relaying an entirely different message to other parents.

“If your child loses any skill, you need to panic,” she said. “You need to go immediately to the doctor.”

At age 2, Jem was diagnosed with autism — or as Penrod puts it, “Autism with a capital A because it changed everything.”

Autism spectrum disorders affect as many as 1-in-150 American children, according to WebMD. 

Types of autism include autistic disorder, pervasive developmental disorder, and Asperger’s syndrome.

Autism appears in early childhood — usually before age three — and affects the child’s ability to communicate and interact with others, according to several medical websites. While the cause of autism is not known, early treatment has been found to make a difference in the lives of many children with the disorder.

It took time and the influence of a few personal miracles, but Penrod feels the responsibility to pass on the hope that she now feels for her son and children with autism.

Every Friday morning, Penrod attempts to relay a positive message to those listening to her internet radio show “Everyday Autism Miracles” on www.Toginet.com.

Hope was a feeling that, at times, seemed unattainable for Penrod.

‘He was gone’
Jem was hospitalized for rotavirus not long after Penrod started to notice the change in her son.

Medical staff gave him some sugar water. The virus was gone, but so was her son.

“We came home from the hospital and it was like someone had turned the light switch off,” she said. 

Jem didn’t respond to his name, he didn’t speak. He would throw his head on the floor until his mother picked him up.

Penrod called over a friend who works with autistic children. He couldn’t tell for sure, but Jem seemed to display the signs.

After months of waiting, a developmental pediatrician confirmed that Jem was autistic.

“It’s that pivotal moment where everything changes,” she said. “It’s that bell that gets rung and you can’t un-ring it. We’ve been on just the fight of our lives since then.”

Praying for hope
Though hard for her to admit, there were moments when Penrod wished she could slip into a coma and wake up in a better place.

Skimming the internet for inspirational stories about children with autism didn’t help. She couldn’t find many, she said, leaving her to pray one night to find a family with a son like hers.

The next day Penrod was sent on a work assignment to a local home. That’s where she met a Canyon Country couple and their autistic son.

Penrod watched as the boy walked into the room, made eye contact, hugged his father, and asked if he could play video games.

For two years, the boy had undergone Applied Behavioral Analysis, a long-used process of systematically applying interventions based upon learning theories to improve social behaviors in children with Autism spectrum disorders, according to several websites on the subject.

Not all believe in applied behavioral analysis.

A doctor had once warned Penrod about the intervention, saying it would turn Jem into a robot. But the couple’s son didn’t look like a robot to Penrod.

He was a functioning child, making eye contact and socializing with his father. That was the kind of hope Penrod had prayed for just the night before.

“They saved our lives,” she said. “I can’t imagine if we had not met them where we would be.”
 
Making sacrifices
Penrod was referred to the Center for Autism & Related Disorders, Inc., or CARD The center follows the principals of applied behavior analysis, developing individualized treatment plans for each client.

Penrod referred to the initial therapist who worked with her son as “the autism whisperer.”

“He was the first person who reached my child,” she said.

Therapy looked a lot like playtime to Penrod in the beginning. Jem and his therapist battled each other with paper swords.

“It wasn’t just play, the therapist cajoled (Jem) into playing with him,” Penrod said.

Those types of exercises encouraged eye contact and socialization, she said. After a few months, therapists would bring in learning programs and implement a system of rewards tailored to the activities that motivated Jem.

The Center for Autism’s therapists had Jem potty trained within three weeks, Penrod said.

The process, however, was not easy. Penrod had to quit her job and find a means to work at home while Jem worked with a therapist for 40 hours a week during the first year. Jem could not always handle the long days of therapy — a “full-time job,” Penrod said.

“It was slow. They had to teach my kid how to learn and we had to change our lives,” she said. “At times, I’d be in the other room crying because he’d be crying because he didn’t want to do it anymore.”

But the sacrifices made by the family and Jem himself began to produce significant changes in the boy.

Four years later Jem, 7, is learning the difference between a belief and an opinion and how to empathize with others, his mother said.

“They’ve saved our child,” Penrod said.

Now, the reward that motivates Jem the most is being done with therapy.

“Are you willing to work hard?” his mother asked him as they sat on their living room couch.

“Yeah,” Jem said, looking directly at his mother.

Penrod believes he is close. She’s hopeful that one day soon Jem will be recovered, but if not, she’ll have no regrets.

“We wouldn’t change anything that we did,” she said.

Jem starts second grade in the fall.

He has a one-on-one aid to help keep him on track but the curriculum in a traditional classroom is no problem for Jem.

One of his favorite activities is building with Legos. Penrod was humbled one Christmas as she spent more than an hour trying to put together a Star Wars spaceship following a set of instructions. Jem presented an elaborate Lego spaceship he had been working on at the same time, with no instructions.

He wants to be a rocket scientist one day.

‘Everyday autism miracles’
Penrod made a New Year’s resolution in January to help other parents of autistic children. In February, she was presented with an opportunity to host an online radio show which provided her with the means.

The radio show is about hope, empowerment, education and “paying homage to the mother’s instincts,” she said.

Scientists, therapists and doctors are certainly well educated, Penrod said, but they don’t always know everything.

The show features parents of children who have made significant strides and various experts on therapies, treatments, supplements and how to get funding to help parents afford them.

“I just want to keep dishin’ that hope out,” she said.

Penrod also gives much credit to a group of about nine College of the Canyons interns, all with Asperger’s syndrome or another autism spectrum disorders.

Penrod uses the interns’ skills for her marketing, scheduling guests and more. All of the interns have been featured on the show.

Their stories inspire Penrod. “These are kids that fought through all the things my kid fought through when there wasn’t all this help,” she said. “They didn’t have the support that we have now.”

Hosting the show has been a growing and educational experience for Penrod.

“I don’t want Jem to be disabled, I want him to be differently abled,” she added. “Jim has autism but I want him to be as functional as he can be in the world.”

Listen to Penrod’s show for free at www.toginet.com/shows/everydayautismmiracles or download on iTunes by searching “Everyday Autism Miracles.” The show airs at 11 a.m. on Fridays.

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