By Sarah Whitman
Senior Staff Writer
Luke Sengul lines up his toys one by one, tuning out the rest of the world. Although he will turn 4 this year, he still doesn’t speak.
Luke is autistic.
It is a world Luke’s parents, Tamer and Patricia Sengul, know too well. The couples’ oldest son Adam, 4, was diagnosed with high functioning autism at age two. While Adam is now doing well and his brother, Paul, is a typical 2-year-old, Luke struggles to keep up with his brothers.
“We’ve only recently been able to make eye contact with Luke,” Patricia said. “For the longest time, he wouldn’t even look at us.”
The Sengul family lives in Land O” Lakes and are participating in Walk Now for Autism Speaks May 1 at in St. Petersburg. The event will benefit Autism Speaks, the nation’s largest autism advocacy organization, and help fund research to fight the neurological disorder.
“This is a real condition that a lot of families are devastated by,” Patricia said. “We are walking to raise money and awareness.”
According to Autism Speaks, 1 in 110 children are affected by the disorder. Symptoms can impair an individual’s ability to communicate, form relationships and relate to their surroundings.
Neither Patricia nor Tamer Sengul has a history of autism in their families. When Adam was born, they expected to have a typical life. Then, Adam’s pediatricians started using words like developmental delays. A child psychologist referred the Senguls to an autism specialist, who made the official diagnosis.
Adam had pervasive developmental disorder not otherwise specified, a form of high functioning autism.
The words shook Patricia to her core.
“You hear autism and you think of stereotypes, of your kid growing up banging his head against a wall and other children poking fun at him,” she said. “You think he’s never going to get to know the fun things of growing up.”
Adam was put in intensive therapy for six months, where he learned to communicate and to interact socially. The Senguls now consider him recovered, though doctors have yet to make it official. He no longer exhibits typical autistic behaviors and learns with little difficulty as a preschool student at Sanders Elementary School.
“I like school,” Adam said. “I like to play and eat at school. I like my teachers and friends.”
At home, Adam helps look after Luke, who tends to go off by himself.
Luke’s autism is a difficult case. He has exhibited signs since infancy. Having more than one autistic child is not unusual, according to the National Institute of Mental Health.
The Senguls had yet to receive Adam’s diagnosis when Patricia became pregnant with Luke.
They were devastated to find out his case was even worse.
“We had a playroom but we had to move the toys out into the main living area because Luke would just want to go in there by himself and stay for hours,” Patricia said. “He gets frustrated because he can’t communicate, so he throws tantrums. He has a lot of behavioral problems and emotional issues.”
Luke has yet to receive treatment using applied behavior analysis. The Senguls are waiting on approval from their medical insurance. In Luke’s case, the therapy may or may not help.
As a father, Tamer can only hope for the best.
“There could be improvement,” he said.
Tamer works with Luke on a daily basis, correcting inappropriate behaviors and encouraging good ones. He never gives up but admits it’s a hard road.
“It can be very taxing on the family,” he said. “We are fortunate to have a good church and a good support system.”
The Senguls believe a variety of factors contribute to autism.
“I think it’s a combination of things,” Patricia said. “I think some children are genetically predisposed but there are also environmental factors involved. I don’t want to say the vaccines caused it, but I think everything from vaccines to pesticides and even what’s in formula plays a role.”
Patricia has decided to homeschool all three boys starting next year. Prior to having children, she worked as a preschool teacher. She has started an in-home preschool for Luke and Paul. The brothers are best buddies.
“Paul will hold Luke’s hand when they walk outside,” Patricia said.
All three brothers get along well because the Senguls make family time a priority. They attend church weekly at North Tampa Church of Christ, where the boys are able to play with other children. The family also takes frequent trips to the zoo, the beach and to Disney World. The children love the characters at the park.
“I like Mickey Mouse,” Adam said. “Donald’s boat ride, that’s my favorite ride.”
Patricia and Tamer often observe the boys as they play. Adam is full of energy and giggles, running from one game to the next. Paul is already able to name his toys. Luke jumps around playfully; then sits quietly, appearing to disappear into a world all his own.
Still, Luke is not alone. He is loved.
To donate to team Sengul for the walkathon and Autism Speaks, visit www.walknowforautismspeaks.org/tampabay/sengul.
