UTA researcher fights for children with severe motor difficulties

Posted Sunday, Aug. 18, 2013  comments  Print Reprints
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More information To donate • To donate to Priscila Caçola’s research: visit microryza.com and search her name • Little Mavs Movement Academy: uta.edu/littlemavs/

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Evelyn Lund sometimes just can’t show how smart she really is.

While the 9-year-old girl measures in the 99th percentile for cognitive intelligence and recently went to MIT to meet with a scientist about her theory regarding dark energy, sometimes her mind simply won’t let her get it down on paper.

In the first grade, Evelyn would come home from school, stare at the blank sheet of paper and tell her mom, “I’ve used up all my good penmanship in school and I can’t write my homework,” said her mother, Christine Lund.

“She’s so smart, but when she tries to write she has to fragment down how each letter is formed. To concentrate to that great degree — no wonder she’s frustrated,” she said.

Evelyn Lund is one of 3 million to 5 million children in the United States who have been diagnosed with Developmental Coordination Disorder, or DCD. Sometimes called Dyspraxia, or even Clumsy Child Syndrome, children with the disorder can find the tiniest task daunting.

The disorder is linked to mental health problems, behavioral issues, lack of social communication skills, withdrawal and low self-esteem, said Priscila Caçola of the Developmental Motor Cognition Lab at the University of Texas at Arlington.

Caçola, the only DCD researcher in the Dallas-Fort Worth area, has developed an approach to dealing with children like Evelyn by bringing them together in her “Little Mavs Movement Academy,” where they can participate in uniquely designed labs and play projects targeted at their age range and ability levels.

Caçola’s theory is that by bringing children with severe motor difficulties together for therapy, their psycho-social abilities and confidence will increase. Every activity in Caçola’s lab is based on the child’s personal level of function so they all learn at their own pace, which is something they can’t get elsewhere, she said.

To support her project, the assistant kinesiology professor is using Microryza, a crowd-funding platform where researchers can collect money for their projects, to raise $2,765 to continue her research. She already has $1,885 in pledges, but if she doesn’t collect 100 percent of her goal within 73 days, she’ll lose it all.

Caçola said she really enjoys working with children and seeing the results of her research.

"This is actually something I can see applied, and I need that as a person to survive," Caçola said.

They look just fine

DCD is a condition recognized in the American Psychiatric Association’s “Diagnostic and Statistical Manual of Mental Disorders.” People who have it have difficulty with fine and gross motor skills for such activities as using scissors, writing with pens and pencils, walking, running and playing sports.

But children who have DCD are typically very intelligent, Caçola said.

As a result, the disorder is often misdiagnosed. Often school officials tend to think the child is being lazy and combative when they ask to be excused from a writing assignment or physical education, Caçola said.

“I think people don’t care about motor skills the way they care about academic achievement, but DCD is highly linked to achievement not because they have cognitive difficulties, but because the motor difficulties prevent them from showing their work,” Caçola said.

Though patients’ motor skills will not improve by much, therapy can help children reach their peak, and learn to work with their restrictions.

Evelyn started occupational therapy when she was 3 years old. Every one of her senses were affected: She was clumsy and frustrated. Like most children with DCD, she threw temper tantrums when she couldn’t express her feelings, her mother said.

Life was overwhelming, her mother said. Children’s toys startled her, bright lights and noise were too much to bear, and even being moved from one room to the next was scary.

“It was complete sensory overload,” Lund said. “For her to be able to bring herself down was huge.”

Testing revealed Evelyn was in the 99th percentile of her peers cognitively, but only in the second percentile in motor ability. So Lund brought Evelyn and her younger sister, Elise, to Caçola’s group therapy for help.

Doctors typically wait until a child is 6 or 7 years old before they make a DCD diagnosis, but Lund swears her 5-year-old daughter, Elise, has it, too.

Lund describes Elise as being beyond clumsy as a toddler. Elise didn’t just do the average wobble and fall when she began to walk, she fell constantly, banged into corners, and upon bringing her in to see Caçola, Elise had 22 dark blue bruises on her legs.

“It’s like she has no balance. If she closes her eyes and stands still, she will fall. But...” Lund sighs. “She’s a daredevil.”

Dark energy

Though Lund is apprehensive about the start of the school year, she has requested assistance for Evelyn under Section 504 of the Rehabilitation Act of 1973. The civil rights law mandates that students with disabilities have the same opportunities as their peers, and they are entitled to accommodations and modifications of work.

“When it doesn’t look like anything it’s hard to convince people it’s real,” Lund said.

Specific accommodations include: allowing Evelyn to give oral responses instead of written ones for her assignments, or allowing her to use stamp pads and parental assistance.

Research shows self-confidence in children is directly related to athletic and motor ability; as an adult it doesn’t matter as much, Caçola said.

“When she’s an adult and is making money and successful, it won’t matter that she can’t play on a sports team,” the researcher said.

So she’ll have to be more cautious than the average driver, she won’t wear a lot of makeup or strappy high heels, but who cares? her mom said.

Her recent talks with scientists at MIT about dark energy show that she has other things on her mind.

“Where we live, it’s like we are trapped in a balloon but we can’t see the outside,” Evelyn said

Monica S. Nagy, 817-390-7792 Twitter:@MonicaNagyFWST

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