Pushing back veil of autismGRAFTON, N.D. – When her son, Ethan, was diagnosed with autism at age 2 in fall 2005, Jalene Suda devoted herself completely to his recovery. She quit a good job to stay home and marshal every available resource to free her son from this complex, isolating brain disorder.
By: Pamela Knutson, Forum Communications, INFORUM
GRAFTON, N.D. – When her son, Ethan, was diagnosed with autism at age 2 in fall 2005, Jalene Suda devoted herself completely to his recovery.
She quit a good job to stay home and marshal every available resource to free her son from this complex, isolating brain disorder.
“I call it a blessing,” she said, “because, with the diagnosis, came early intervention and services.”
“She did everything in her power to save her child from this disease,” said Jennifer Hartje who, while attending Grafton High School, worked as a therapist with Ethan.
She said she admires Suda’s “strength and determination.”
The Sudas’ fourth child had a “regressive” form of autism, which meant he developed typically but then started to lose skills such as pointing, waving and catching a ball. He stopped talking, banged his head and ran a lot.
Yet, the boy who once would not sit in a chair is, today, a lively, talkative, happy and healthy third-grader who loves life, Suda said. Except for speech therapy, he has no need of other developmental therapies.
Suda credits Ethan’s many therapists, her husband Don and children Zach, Emma and Isabella, now 19, 15 and 10. “Where Ethan is today is the result of a team effort.”
Ethan also has a younger sibling, Alivia, 3.
After Ethan’s diagnosis, Jalene Suda enlisted the help of therapists and family members to reinvent the household to focus, in every aspect, on restoring her son to normal functioning.
She connected with a UND student who, at the time, was working on a doctoral degree in clinical psychology. Sonia Marrone taught Suda and others in the community “applied behavioral analysis.” Specialists recommended Ethan receives 40 hours of ABA therapy each week.
“She was wonderful,” Suda said. “If she wouldn’t have come into our lives, I don’t know, therapy-wise, if Ethan would have gotten what he needed.”
Ethan’s daily life was heavily scheduled with sometimes multiple therapy sessions. As many as six therapists came into the home weekly to work with him.
The older Suda children were trained to conduct therapy sessions with Ethan. They were taught to stimulate verbal communication, for example, by asking him to say “milk” when he would stand by the refrigerator but not speak.
“When you look deep into the eyes of these children, there’s somebody inside,” Suda said. “Communication is a big issue with autistic kids. To hear them say ‘mom’ or ‘dad’ is a big milestone.”
Suda also studied the role that diet plays in autism. Allergy testing revealed that Ethan was allergic to eggs, gluten and dairy products.
“Once those were omitted from his diet, he learned twice as quickly,” she said. “He was able to speak. There was no more head-banging. He was able to go to preschool.”
When Ethan was about 4, symptoms of autism faded one by one.
“He met all of his (developmental) milestones by the time he started school,” Hartje said.
Suda has since returned to a full time job, and volunteers for the Talk About Curing Autism group.
She encourages parents whose children have been diagnosed with autism.
“When children are first diagnosed with autism, parents feel very alone. We don’t have a ton of services in North Dakota,” she said. “With the rates of one in 88 children being diagnosed with autism, we’re going to see more of it.”
“Jalene teaches parents what can be done because she’s done it,” Hartje said.
While some parents deny evidence of autism, fearing the stigma that comes with it, Hartje said Suda wasn’t like that. “She didn’t care if she had to tell everybody that her son was on the autism disorder spectrum. Her only fear was him lacking life because of the diagnosis.”
Because of her experience with Ethan, Hartje is now pursuing bachelor’s degrees in psychology and nursing at UND.