A family learns that it takes more than love to deal with an autistic child. Can a support group really help?
By BETH N. GRAY
Published March 28, 2004
[Times photo: Maurice Rivenbark]
Leslie Bolen watches her son Michael, 2, during a therapy session at their Spring Hill home Thursday given by Holly Neiswender of Advance Abilities Solutions. Bolen, along with her husband, Chad, is leading efforts to start a support group for families like hers who have autistic children.
SPRING HILL - As Leslie Bolen awoke in the maternity ward at Morton Plant Hospital in Clearwater, she heard a frightful scream from the nursery down the hall.
"Oh, that (child's) poor mother," she thought.
Then, the howling approached, closer and closer, until the source was placed in her arms.
"It was the most incredible cry I have ever heard. It was just ear-piercing," Bolen recalls from the day - May 3, 2001 - her son Michael was born to her and her husband, Chad.
The nurse said the infant was just hungry. But Bolen, now 27 and the mother of three children, knew with a woman's intuition. No, it wasn't merely hunger.
At the age of 5 months, when most babies are only learning to roll over their cribs, Michael began to communicate.
When told, "Sleepy time," he would tuck his head to one side, imitating sleep. He would put his arms in the air to be picked up. He waved bye-bye.
About the time of his first birthday, Bolen said, Michael slowly stopped performing those remarkable feats. Instead, he picked up new habits: spinning for 20 minutes at a time without growing dizzy; not talking; throwing tantrums; beating his mother with small fists as she tried to soothe and comfort him; not sleeping; not responding when someone called his name; fearing cameras; stripping off his clothes.
At the same time, Michael revealed genius-like behaviors. He meticulously stacked blocks 18 to 20 high. Then he sorted and stacked them by color.
Bolen's mother, Joan Ferko, was visiting one day during another of Michael's spinning episodes. She kept calling his name, without response.
"It's like he's in his own little world," his grandmother said.
The observation clicked in Bolen's mind.
"I ran to my computer and typed in "own little world-autism,' and 517 pages came up. I kept saying, "Oh, my gosh; oh, my gosh.' And I started crying, "He's autistic.' "
Michael was 15 months old - height and weight appropriate for his age - when his mother asked for an urgent appointment with his pediatrician or a consultation with "the best with autism."
"The doctor did the exam and had a solemn look on his face - said there were some red flags here," Bolen said.
The physician hooked up mother and son with the Developmental Evaluation and Intervention Program in Brooksville, an agency of the University of Florida that evaluates children as old as 3 with diagnosed disabilities and provides speech, physical and occupational therapy through play and behavioral skills. The program also puts families in touch with other service coordinators.
"We act as liaison between therapy, doctors and services," said program coordinator Pat Califano.
The program is providing in-home therapy for Michael. But his mother has been dismayed by the lack of other local resources to assist families with autistic children. Even searches in libraries and on the Internet revealed little about the developmental disorder that affects social interaction and communication.
That doesn't surprise Margie Garlin, intake coordinator for the Center for Autism and Related Disabilities at the University of Florida.
Autism's cause?
"They don't know. There are a lot of different theories," Garlin said, mentioning genetics, a reaction to the measles-mumps-rubella vaccination, a bodily chemical imbalance.
Cures?
"They are researching it now because the rate is so high," she said.
Perhaps one in 250 children and adults are affected to varying degrees by autism or one of a spectrum of related ailments. Califano said children previously labeled as learning disabled or with behavior problems are now, through improved diagnostic tools, being diagnosed as autistic.
The Hernando County School District lists 27 youths in prekindergarten through Grade 12 as autistic. But Sharon Meckler, who heads the district's exceptional student education program, said that number doesn't tell the entire story.
"There's a big family of autism-related disorders" that are not accounted for in district statistics, Meckler said. "The number is growing."
The school district sponsors a support group for families of children with disabilities. It meets from 7 to 8:30 p.m. the third Thursday of each month during the school year at 900 Emerson Road, Brooksville.
But Bolen yearns to share what she has learned about autism and to learn from others who have autistic children. She and her husband, Chad, 29, want to organize a support group for families dealing with autism.
They are hoping, by getting the word out, that others will come forward. They want to exchange experiences and share emotional support. They want to develop contacts with people who will understand the euphoria the Bolens experienced the first time Michael pulled up his pants; the first time - at nearly age 3 - he picked up a fork to feed himself; the first night, also recently, he slept for more than four hours.
Garlin, whose territory for the Center for Autism and Related Disabilities includes Hernando County, is enthusiastic about the support group. She has been working with the Bolens - whose family includes son Jacob, 10, and daughter Rachel, 19 months - as resource guru, coach, cheerleader and crying shoulder. Garlin intends to share her knowledge and experience - her 12-year-old son, Brian, is autistic - at one of the early meetings of the group.
For the group, Leslie Bolen envisions one- to two-hour weekly sessions.
"I'd like everyone to be able to talk," Bolen said. "What defeats have you had, what accomplishments . . . a place where you can go to pull your hair out, hug each other."
Califano is an admirer of Bolen.
"She's a real proactive mom, and she just researches and tries," Califano said. "I wish we had more moms like that."
FOR INFORMATION
Anyone interested in contacting Leslie Bolen about starting a local support group for families dealing with autism may call her at 683-0209. The phone number for the University of Florida's Developmental Evaluation and Intervention Program in Brooksville is 796-0076. To reach the UF Center for Autism and Related Disabilities in Gainesville, call toll-free, 1-800-754-5891.
