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A voice for a confounding condition

It took years to give her son's behavior a name. Now Donna Sakuta is an advocate for those those with Tourette Syndrome.

By DONNA WINCHESTER
Published March 27, 2005

ST. PETERSBURG - Donna Sakuta thought her son Daniel was clowning around when he bulged his eyes as a toddler.

She took his stuttering more seriously, sending him for speech therapy.

Two years later, his constant throat clearing prompted a visit to a pediatrician who treated him for allergies. Rapid, uncontrollable eye blinking led to an eye doctor who fitted him for glasses.

Sakuta didn't know what to think when Daniel started making odd, uncontrollable dolphin-like squeals. She took him back to the pediatrician, who referred him to a neurologist.

Two years later, she got a diagnosis: Daniel had Tourette Syndrome, compounded by attention deficit disorder and obsessive-compulsive disorder.

She soon found there was an amazing lack of knowledge about Tourette's, especially in the public school system. She began advocating for her son. Seven years later, she has expanded her advocacy to families of children with the disorder.

She has served since last March as executive director for the Florida chapter of the Tourette Syndrome Association, a national organization that raises public awareness of Tourette's and offers resources and referrals to help people cope with it.

In May, she quit her job as a special education teacher at Hamilton Disston School to work for the organization full time.

"Because I know how it feels to be on the other side of the table, I want to help other parents and educators understand how to assist our children," she said. "With the right accommodations, our children do very well."

Daniel, who is now 14, had good years and bad years in elementary school, but he struggled mightily his first year in middle school, Sakuta said. Suddenly, he was surrounded by twice as many children. He had to change classrooms each period. Instead of one teacher, he had eight.

And like many children with Tourette's, his symptoms increased when he reached puberty. His head and shoulders jerked so violently his muscles ached. He also developed coprolalia, the involuntary use of obscene words or socially inappropriate words and phrases. Most people immediately associate that symptom with Tourette's, but it actually occurs in only 20 percent of Tourette's cases, Sakuta said.

She and her husband, Dan, considered sending Daniel to a private school. They knew several families who had opted to take McKay Scholarships, which pay private school tuition for children who have disabilities. But in the end, they decided to keep him at John Hopkins Middle School as a regular education student because that was where he wanted to be.

They had numerous meetings with Daniel's teachers and found some were more willing to work with Daniel than others. Sakuta credits Eugene Stone, a special education teacher at Hopkins, for being a mentor to Daniel and a liaison between her and the other teachers.

One thing educators seem to have a hard time understanding, Sakuta said, is why bright children such as Daniel have a difficult time paying attention in class. Much of the problem stems from the fact that children who suffer from Tourette's often have other neurological disorders as well as learning disabilities, she said.

Complicating matters is the fact that tics wax and wane.

"Oftentimes, educators will say, "The child is not ticcing, so I don't know what his problem is.' But they may be having what we call "tics of the mind' that interere with their ability to perform in the classroom even if the tics aren't there," she said.

Medication prescribed to offset the symptoms of Tourette's or its associated disorders also can wreak havoc on a child, she said. Daniel gained 30 pounds when he began taking medicine for his obsessive-compulsive disorder, which gave his classmates another reason to make fun of him.

"I remember when he was in sixth and seventh grades, he was getting off the bus every day in tears for the way he was picked on," Sakuta said. "He was being teased about his weight and mocked for his tics, especially at the bus stop."

In October 2003, the Florida Tourette Syndrome Association invited Sakuta to attend a teacher training session. The report she gave after the session earned her an invitation to serve on the board of directors for the Florida chapter. The executive director job offer followed.

Since she came to work for TSA full time, Sakuta has been instrumental in organizing monthly seminars for the Pinellas chapter. Earlier this month, the topic was medications used in the treatment of Tourette Syndrome and associated disorders. April's seminar will address behavior therapy for the treatment of Tourette's and related disorders.

But her focus remains on bridging the gap between parents and educators. She has designed a presentation for teachers to help them understand Tourette's and will soon begin sending letters to staffing specialists throughout Pinellas County.

She knows the teachers are busy. She just wants a little bit of their time.

"The children are out there," she said. "They're in the schools. They're just like any other kids, they just have these issues that are related to their disorders."

The next meeting of the Pinellas County chapter of the Tourette Syndrome Association of Florida will be from 6:30 to 8 p.m. April 20 in the education and conference center at All Children's Hospital, 701 Fourth St. S. The topic will be behavior therapy for treatment of Tourette Syndrome and related disorders. Call 418-0240 for information.

Tourette Syndrome is a neurological disorder that becomes evident in early childhood or adolescence. Named in 1825 by Gilles de la Tourette, its first symptoms usually are involuntary frequent, repetitive and rapid movements of the face, arms, limbs or trunk. Verbal tics or vocalizations sometimes occur with the movements and include grunting, throat clearing, shouting and barking. The verbal tics may be expressed as coprolalia - the involuntary use of obscene words or socially inappropriate words and phrases - or copropraxia - obscene gestures. Associated conditions can include attentional problems, such as ADHD, impulsiveness, obsessive-compulsive behavior and learning disabilities. Tourette's and other tic disorders occur in all ethnic groups. Males are affected three to four times more often than females.

Founded in 1972 in Bayside, N.Y., it is the only national voluntary nonprofit membership organization dedicated to Tourette Syndrome. Its mission is to identify the cause of, find the cure for, and control the effects of the disorder. It offers resources and referrals to help people cope with Tourette's and raises public awareness of it. There are 35 chapters of TSA in the United States, which sponsor 300 support groups. For more information about Tourette Syndrome, visit the TSA Web site at www.tsa-usa.org

[Last modified March 27, 2005, 00:34:19]