children with rare disorder and how parents can handle it Video by tmj4.comvideo
SHOREWOOD - Dante looks like any other 11-year-old. But his life is far from ordinary. His mother, Nancy Peske, sensed trouble early:
"As a baby, he never wanted to get out of the baby swing. I mean, two hours in the baby swing and he would start screaming if you tried to pull him out."
And Dante had other "little quirks".
"Whenever the wind kicked up, when we were outside, he would get so giddy hysterical laughing that people would stare at us."
But there was a certain other behavior that bothered Nancy most:
"When he went to the doctor to get shots, he actually giggled when the needle went in and tried to hug the doctor, but then when we tried to put the sticky band aid on he'd start screaming."
Nancy knew something was wrong with her son.
"You try to make it very positive: 'Oh isn't it cute, he has such a high pain tolerance? Isn't it sweet that he's different from the other kids?' But we kept questioning our pediatrician and saying, what's up with this?"
Shortly after his two-year baby visit, Dante was diagnosed with Sensory Processing Disorder. Never heard of it? Neither have many pediatricians, teachers, and psychologists.
Occupational therapist Christine Cayo, who works with Ozaukee Therapy Services in Mequon, has studied SPD. She says the wiring in some children's senses is completely off: "There's some children that have a lot of difficulty responding to sensory information from their environment or from their bodies."
After Dante's diagnosis, Nancy threw herself into her own research. She wrote a book on SPD, called "Raising A Sensory Smart Child."
"For a child with Sensory Processing Disorder it's as if the volume control on every sense is completely off," said Nancy. "So when your brain tries to put it together and give you an accurate picture of what's happening in your body and in the environment, it just doesn't work."
Christine and her partners at Ozaukee Therapy Services have developed occupational therapy for children with SPD. They use things like a scooter board, and a zip line to help children challenge their senses.
But treatment for SPD is expensive. And because SPD is still not officially recognized by any medical texts, insurance companies do not want to pick up the tab.
"What would be ideal isn't always possible because of the funding... It's very expensive," said Cayo.
Nancy and her husband paid thousands of dollars to get Dante the help he needed. Through activities like jumping on a trampoline and spinning, Dante has learned to control the mood swings and horrible temper tantrums children with SPD often experience.
"The sensory issues actually interfere with their learning, their development, their socializing, their everyday activities... And they absolutely do need some help," said Nancy.
Still skeptics worry that, if validated, SPD diagnoses will run rampant and could stick insurers and school districts with enormous bills for unproven therapies.
But parents like Nancy insist SPD is as real as it is debilitating, and that children need treatment in order to lead a normal life.