By Pamela Knudson
Originally published in the Grand Forks Herald
GRAFTON, N.D.—There was a time, when Charlie Kern was about 5 years old, that his parents kept a chart on their fridge where they recorded those moments when he spoke two or more words.
"We wrote down everything he said that was over one word," his mother, Janice Kern, remembered. An utterance such as "come here" would be captured in writing and celebrated.
It was a way for the Grafton, N.D., couple to encourage their son, who had been diagnosed with autism spectrum disorder, to speak more.
"And a way to reward us," she said, noting how easy it is to become discouraged when you're raising a child with autism spectrum disorder.
Charlie's developmental progress was slow, Janice said. Her younger children were reaching milestones before he was—celebration of their milestones was mixed with sadness that Charlie hadn't.
Charlie, 13, is the Kerns' second child. Janice and Joe Kern are also raising Kenny, 14; Tommy, 12; and Jack, 9.
ASD causes severe and pervasive impairment in thinking, feeling and language, according to the National Institute of Mental Health. It is characterized by deficits in social communication and social interaction.
The exact causes are not known, but research suggests that both genes and environment play important roles.
The Kerns have explored various strategies—medical, nutritional, behavioral and other therapies—in their quest to help Charlie reach his full potential.
Although she and Joe have had substantial help from family and friends, "we needed a group that gives support that you're doing the right thing," Janice said.
Through their involvement with an organization called Talking About Curing Autism, they found the kind of support, knowledge and understanding that only other parents of children with autism can provide.
About eight years ago, Janice, along with Jalene Suda of Grafton, started a local TACA group to reach out to and support other families.
"TACA is families with autism supporting families with autism. Kids with autism are all so different, so to find some common ground is really important.
"Other families will share their stories—what worked with their child," she said. "We want to make it easier for families to get that information faster ... The best thing they've given us is hope."
Today, Charlie spends his school day in a regular classroom, with staff support, Janice said. "Without special therapies, he couldn't be in school."
As a toddler, by all appearances, Charlie was progressing normally, she said. Until he was about 15 months old, he was meeting developmental milestones.
"We had no concerns about his development."
Then he started to "lose words," she said. "He stopped pointing at things and didn't answer to his own name."
Janice and Joe thought his behavior might be attributable to a speech delay or deafness.
But with a subsequent screening, they found that "he had not gained skills, he had lost skills," she said.
Twelve years ago, there was less public awareness of autism, Janice said. "We knew of only one person in the community who had autism."
She and Joe took him to several doctors, hoping Charlie's symptoms could be explained by deafness.
"I knew one neighbor who was deaf, and he could do anything," she said.
Autism is an "opinion diagnosis," Janice said. "It's arrived at by observation, not by a blood test."
When a team of five child development specialists confirmed Charlie had ASD, it was
devastating, she said. "It's still our biggest challenge."
The diagnosis has affected the whole family.
"Our family has grown a lot because of Charlie's condition," Janice said. "His brothers' paths are dictated a bit because of (Charlie).
"When we're out, my oldest son occasionally has said to me, 'Mom, do you think that person has autism, because he reminds of Charlie.' Our older kids remember what he used to do."
Janice recalled that some simple tasks were more cumbersome.
"Charlie was a wanderer," she said. "I'd have to get a babysitter to go get groceries."
If she and Joe left town, they'd hire two babysitters: one for Charlie and one for the other children.
With an autistic child, "you walk on eggshells," she said. "You blame each other" for things like talking too loud and causing an emotional "meltdown."
Self-awareness and learned strategies have helped to reduce that kind of stress.
Much has changed
Public awareness of and treatments for children with ASD "have changed a lot, even in 10 years," Janice said. "Therapies that were discouraged when Charlie was diagnosed are now standard practice."
One of those therapies, called "behavioral therapy," was something that the Kerns became enthusiastic about, she said.
The family's Grand Forks pediatrician offered some advice.
"He said his patients were telling him that they'd had good luck with behavioral therapy," Janice said.
The doctor, who handed her a scrap of paper with the name of a knowledgeable person at UND, opened the door to a new way of reconnecting with Charlie.
When Charles was first diagnosed, "people discouraged us" from the use of behavioral therapy, she said. "They kind of wished us 'good luck' with it but they didn't embrace it. We did a lot of behavioral therapy beginning at age 3."
With time, others' opinions on behavioral therapy shifted, she said. "People were noticing that it makes a difference."
Using behavioral therapy, "we had to teach him everything, hand over hand," Janice said.
To teach him about colors—like blue, for example—they'd set a blue item in front of him.
"We'd take his hand and touch the blue item. He had none—or very few—language skills at the time," she said. "It was 'errorless' learning."
In fact, Charlie learned how to learn, she said. "I credit that (therapy) with him being able to be in a mainstream classroom today—with staff support."
In addition to behavioral therapy, altering Charlie's diet also made a "drastic" difference, Janice said.
After allergy testing showed that Charlie was reacting to casein, a protein in milk, she removed all dairy products from their home.
The change in Charlie was noticeable "right away," she said. "He was far more alert; he was able to gain weight. When we got his gut healthier, he was able to tolerate foods better."
Making food changes "falls into the category of 'it might help, but it won't harm,' " Janice said. "For us, it was really worth it.
"In one week with special diets, the results were greater than three years of occupational therapy, speech therapy and other therapies," she said. "It cleared up his brain, learning was easier; he felt better.
"Your belly is definitely connected to your brain. If you constantly eat things that your body can't digest, it's not good. You have a fuzzy brain."
She puts into perspective the progress Charlie has made.
"I'm cautious, because other families haven't been able to find that ticket for their child—especially parents whose children are older than Charlie."
"We don't take for granted that Charlie speaks. I know a lot of parents who would give anything for it. We're very lucky.
"It's not that we did anything right or better. It's that Charlie responded to therapies and teachers."
Other parents' experience with autism has paved the way for her family, Janice said. "The reason it's easier for us is because of them."
What Janice hopes for Charlie's future "changes all the time," she said. "There was a time I just hoped he'd be able to speak.
"Now I hope for education past high school, and that he can get a driver's license—and he hopes for those things, too. I think it's possible.
"If a child can verbalize his dreams and fears, that's pretty huge."
Parents who have concerns about their children’s development can request the screening services of Infant Development, a state-funded program administered by the North Dakota Department of Human Services, and the Pediatric Rehabilitation Center at Altru Health System in Grand Forks.
For information on child development screening, contact the North Dakota Department of Human Services area offices:
- Northeast Human Service Center, 151 S. Fourth St., Suite 401, Grand Forks; (701) 795-3000.
- Lake Region Human Service Center, 200 Hwy. 2 SW, Devils Lake; (701) 665-2200.
- Southeast Human Service Center, 2624 Ninth Ave. SW, Fargo; (701) 298-4500.
Professionals at Little Miracles Day Care Center in Grand Forks also conduct developmental screening, said Janice Kern, volunteer coordinator of the Talking About Curing Autism group in Grafton, N.D.
TACA connects families who want to share their experiences, questions, advice, recipes, and stories about what did and didn’t work for them in caring for children with autism spectrum disorder.
The Grafton-based TACA group hosts “coffee talks” once or twice a month and family events four times a year. The next coffee talks are set for Thursday at 10 a.m. at Starbucks, 1217 S. Washington, Grand Forks, and 7 p.m. at Daily Grind Coffee Shop, 24 E. Fifth St., Grafton.
The next TACA family event is planned for June at Northern Air Family Fun Center, 1600 32nd Ave. S., Grand Forks. For more information, go to www.tacanow.org and click on North Dakota in the U.S. map.
The Third Annual Autism Awareness Walk is set for 9:30 to 11:30 a.m. Saturday at the UND Wellness Center main gym.
The walk, which is open to the public, will feature musical entertainment, informational booths and door prizes.
For more information, call the UND Wellness Center at (701) 777-9355.