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Miracle Kid: Daniel Deyo

Mother, Son Work Together to Manage Autism

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The seconds tick away. Daniel Deyo’s gaze lingers briefly on the timer, then drops to his book. Five minutes of reading work meant a reward – five minutes of television.

Not long ago, this was a constant battle. Daniel, who is diagnosed with autism spectrum disorder (ASD), would take a great deal of convincing to settle in with his schoolwork. After a short time, though, he’d stop and return to something he enjoyed more. Efforts to keep him seated resulted in screaming tantrums.

But the timer gives him a focus, a goal. And whenever he looks up, he’s a little closer to his reward.

For children with ASD, there are no special drugs or surgeries that can fully address all of their needs.

Instead, miracles are made one grueling step at a time.

Treatment doesn’t always start with the patient. Instead, a parent can learn to observe their child through a new lens and watch for things they weren’t looking for before.

They can log their children’s behavior. What works. What doesn’t. Interactions, behaviors, and tantrums can be tracked and studied.

Every child is different. What’s effective for one may not work for another. But once a success is discovered, it is repeated. Again and again and again.

Daniel photo

Soon, it’s a routine.

Soon, most of the tantrums are a memory.

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Daniel was 2 when he was diagnosed with ASD. His speech, which had begun promisingly, waned. He began repeating certain behaviors – spinning in place or twirling things in front of his eyes. The next few years were a struggle, as gains would often be erased by regressions, none greater than when his father passed away from leukemia when Daniel was 4.

“His father was the one who managed him, who really connected with him when he was younger,” said his mother, Fauna Deyo.

For a child who already had trouble expressing his feelings, the grief and confusion that came with his father’s death were overwhelming. Meltdowns were near constant.

“Eleven to sixteen times per day,” said Fauna, who lives with her son in East Palmyra. Providers at Roosevelt Children Center in Newark refused to give up on him. Soon, his behavior mellowed and he entered kindergarten on an upswing.

“He was doing really well – he was potty trained and following directions,” said Fauna.

But the gains felt short lived. Upon entering first grade, his behavior took a turn, and reports reached Fauna that the school couldn’t control her son. At home, he was violent, hitting his mother and kicking holes in the wall.

Something had to change.

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The Behavior Interventions for Families clinic is a 12-week training course for parents at Golisano Children’s Hospital’s Kirch Developmental Services Center. Here, parents gain support learning how to view their child through a new lens and think critically about their behaviors, both the child’s behavior and the parents' way of reacting to them.

This means closely tracking behavior and logging data on their child’s actions, and reactions.

“It’s a little nontraditional compared to a lot of what we do here at Kirch in that we don’t work directly with the child,” said Bryan Harrison, Ph.D., a postdoctoral fellow who has works at Kirch within the Behavior Interventions for Families clinic. “Instead, we're basically helping caregivers think about their child's behavior like a scientist.”

Harrison has been working with caregivers of children with ASD and developmental disabilities for a few years. He began with a research group led by Tristram Smith, Ph.D., that examined the effectiveness of this program and, under the supervision of Laura Silverman, Ph.D., began working with a team to implement this approach in a medical setting at Kirch.

Photo of Daniel and His Mother

He had never seen a parent as committed as Fauna Deyo.

“She doesn’t live close by, she works early morning shifts, and recently became a widow,” said Harrison. “She showed up, without fail, every week, and was always on time. She put in a lot of work to make this work for Daniel. She has an incredibly resilient attitude and determined focus on helping her son.”

In the early going, Harrison met with Daniel once as part of a home visit that is built into the program. The rest of his time was spent in sessions with Fauna and her mother, Vonda.

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The first few weeks are spent on foundation work with providers discussing the importance of preventing target behaviors, reinforcing prosocial ones, and establishing a daily schedule that children can come to rely on.

“Some families get frustrated in the beginning because we don’t get to what they want to fix right away,” said Harrison. “But we do this because it’s incredibly important, and Fauna succeeded in taking those early sessions really seriously. She took the foundational stuff and built on it.”

Each week, caregivers pick a specific behavior, and the week’s lesson is adapted to develop a solution that works for the family to implement. Parents also learn how to track that behavior and ensure that they are keeping correct data that can be studied later.

Providers demonstrate how to improve a child’s ability to respond to a request the first time, so the caregiver doesn’t have to repeat themselves. They share ways to prevent children from wandering off when outside or in a large store. And they discuss how to strategically ignore a child’s target behaviors.

“Parents of children often need a lot of emotional support for the planned ignoring,” said Harrison. “They are so accustomed to responding to their child’s needs that it can be very stressful to ignore certain behaviors.”

Daniel Photo

One method that worked well for Daniel was the use of a timer, which became a middle ground for Fauna. Immediately honoring one of his wishes — like, say, a request to watch television instead of doing his homework — could lead to future expectations that Fauna may not have wanted to fulfill. Refusal, meanwhile, could lead to a tantrum. Instead, she could pull out the timer and tell him that he could watch after five more minutes of homework.

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Fauna didn’t stop there. She’d pulled Daniel out of school for the time being, but she was eager to get him back into an environment where he could learn and socialize with other children. She began taking him to music and art social skills classes at the Family Autism Center in Rochester and enrolled in a 12-week advocacy class with Starbridge, a New York State Parent Training and Information Center.

She learned about the laws and what schools are required to provide for students with developmental disabilities. Armed with this information, she returned to Daniel’s elementary school and got Daniel a functional behavior assessment. From there, she worked with his teachers and administrators to make an individualized learning plan for him.

She also shared many of the methods that she’d learned in the Behavioral Interventions for Families training.

Now, Daniel is back in school. And nearly all of his behaviors have improved.

“She took what we offered and used it to the absolute fullest extent,” said Harrison.

“It’s changed our lives,” said Fauna.

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The timer goes off and Daniel puts his book down. His mother resets the timer for five minutes as Daniel settles in with his tablet to watch a few minutes of television.

The cycle will repeat itself until Daniel is done with his schoolwork.

For now, Daniel is happy. The house is quiet.