Rolled up in a thick mat, just his head sticking out, Alexander Moshenko can't move his arms or legs. "I'm a hot dog, all nice and tight," he announces.
Though that position would feel confining to most people, Alex isn't like most people. The 6-year-old has Asperger's Syndrome, a form of autism that has been widely identified only in the last 10 years.
The condition is named for Hans Asperger, a Viennese pediatrician who more than 50 years ago identified a pattern of behavior that includes lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest and clumsy movements.
For Alex the world is so baffling that it's not surprising he does baffling things in response. Try to imagine that your sensory system takes in every sound, every touch, every movement louder and stronger and more insistently.
That means that when Alex puts on a shirt, a clothing tag feels like it's digging into his skin. "I hate clothes," said Alex, who is playing video games in his Amherst apartment and who wants to drive a monster truck when he grows up. "I think I want to destroy them."
Fireworks send the young boy cowering and crying under a table. Even the sweet pleasure of an orange is denied because it tastes over-ripe and mushy. And then, think of what life would be like if you didn't understand social cues. You couldn't interpret the sarcasm, the body language, the tone of voice that come naturally to others. You never knew why your mother was yelling, your teacher was frowning, your classmates were laughing.
"Mom is there something missing in me?" Alex once asked him mother, Monica S. Moshenko.
"He was pushy, in your face," said Moshenko, a single mom who was 39 when Alex was born. "He'd fall to the ground. Or charge at me. Or hug me so hard he'd nearly knock me over."
Since he started getting therapy, Alex has calmed down, but he still makes popping noises, sings in a nonsensical way, doesn't stand still in line. "The things that he does at 6 won't be tolerated when he gets to be 10," his mother said.
What she didn't understand - until last year - was why he did these things. She eliminated a host of possibilities: ear infections (he's had a series of them) and allergies. She tried vitamins and the Feingold diet. And she didn't know what to think when observers said that Alex was "just too sensitive" or that she should discipline him.
It saddened her when he asked her every day if he was a bad boy. "He'd tell me that maybe I'd gotten the wrong son because he'd never get better."
As a toddler, Alex modeled for Fisher-Price and Tyco Toys and he appears on some of their toy boxes. "If you don't look disabled, that sometimes goes against you," said Moshenko. "People think what he's doing is willful."
Because children with Asperger's Syndrome can be relatively high functioning and their deficits are subtle, they often are misdiagnosed as behavioral problems, she said, but that didn't seem like Alex to her. "There were millions of disconnected puzzle pieces that I could never put together," said Moshenko, an administrative assistant for the Great Lakes Program.
When she started hearing suggestions of ADD or ADHD, she got scared, afraid that a Ritalin regimen was the next step and not at all convinced that "popping a pill" would solve any of Alex's problems.
Finally, after Alex was evaluated at Children's Hospital, and she recognized many of his symptoms and behaviors in the book, "The Out of Sync Child" by Carol Kranowitz, she had her answer.
As soon as she read the book, she knew what would later be confirmed by a developmental pediatrician. "I know Asperger's the best," she said. "No one, no doctor, no pediatrician, no psychiatrist knew he had it until last year." It was a relief to have a diagnosis and a challenge to find help.
"I can accept the disabilities. But it's about making sure he gets what he needs," she said. Moshenko, who has 20-year-old twins from her first marriage, knew nothing about this condition at first, but she has learned quickly.
She has books and stacks of printed material, some taken off the Internet, as well as reams of material on special education. In her research she didn't find many suggestions for parents, she said, but recently, a London publisher asked her to write an advice book and she's creating a Web site for parents of special education children.
"It's like walking through a new forest," she said. "But I couldn't rest until I knew the answers."
One thing she always does is to take a large photograph of Alex to meetings about Alex. "What do parents do when they are coming through the ranks and you have to trust 15 strangers with the life of your child? "This helps people focus on the fact that we're not talking about a piece of paper here," she said. "This is real life and it's mine."
Last year Alex was in a small special needs classroom with five other children, but now he's finishing the year in a regular first grade at Maple West Elementary School. Here he receives language and other therapy and also has a full-time aide who helps by cueing him about what's going on around him and how he should respond.
Four months ago, Moshenko hired ABC Therapeutics, a pediatric occupational therapy service run by Christopher J. and Caroline Alterio, to work with Alex two or three times a week to bolster the services he's getting in school.
They are the ones who roll him up hot-dog-like or sit him in a box of shredded paper to give him the tactile stimulation his body craves. It's to help him get a better sense of body awareness, to learn where his body begins and ends, to improve his coordination and balance.
"He's a kid who was crashing through life," said Christopher Alterio. "He's starting to understand his own boundaries and personal space a bit better." Which means this: Alex can walk over to his mother and give her a loving hug that doesn't almost knock her over. He can shake hands politely with a stranger and call out, unbidden: "I like you, News lady."
Moshenko says of Alex: "He's done so much for me. He keeps me grounded about what's important. "If I look at too many years, I can't do it," she said. "But, now, I can deal with tomorrow."
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