05-14-2006, 11:54 PM
BY JACKIE BURRELL
Knight Ridder Newspapers
By age 3, Thomas had stopped talking. He seemed to enjoy being around other children, but he never interacted with them. And he spent long periods of time gazing into space, apparently lost in thought.
"I'm not weird," his mother, Karra Barber, remembers telling herself. "Something's wrong."
In the nine years since Thomas was diagnosed with Asperger's syndrome, Barber has become an expert on the topic. Her book - "Living Your Best Life with Asperger's Syndrome" (Paul Chapman Educational Publishing, $21.95) - hit bookstores in April.
But back then, she only knew that, despite her pediatrician's reassurances, something was off. Her tiny son was obviously bright - he could write his own name and he taught himself to read - but he could barely communicate. Loud noise was a problem. So was getting his hair cut. And certain food textures horrified him.
All Barber's worries came to the fore one day at the park, when she compared her then 3-year-old son with the toddlers playing nearby. She went straight to the library and followed symptoms from book to book, as if they were clues or puzzle pieces. All her research pointed to a sensory integration dysfunction of some kind, an inability to sort through all the sights, sounds, smells and textures that assail us at any given moment.
When Barber returned to the doctor's office, she demanded a referral to a neurodevelopmental pediatrician. The diagnosis was pervasive developmental disorder and - finally - Asperger's syndrome, a high-functioning spectrum disorder marked by average to high intelligence and an utter absence of empathic social skills.
Parents and teachers at The Springstone School in Lafayette, Calif., and Orion High School in Moraga, Calif., private schools that specialize in teens and preteens with Asperger's syndrome, describe the disorder as a core inability to multitask. It's as if each piece of sensory information had to be processed separately, they say, instead of simultaneously. There is no big picture - it's all details.
But with a diagnosis in hand, says Barber, the problem could be tackled.
"It is what it is," she said. "You get what you get and move on. It's your perspective that's most important."
Her book details her family's experiences, while providing a road map for other parents to follow. For the Barbers, the key was unlocking Thomas' communication block and building on his strengths.
Barber found two speech pathologists, an occupational therapist and a physical therapist, who began desensitizing Thomas to the sights and sounds that overwhelmed him. He learned sign language, then regained his language skills. He learned how to cope in social situations, buy a BART (Bay Area Rapid Transit) ticket, ask directions and thrive in a school setting.
And his mother learned to take charge and advocate on his behalf.
"When I realized what I needed to do, I told people, `This is what the issue is, this is what I need from you,'" she says. "I was pushy. I did (teacher trainings). I tried to be funny and helpful, because I knew there were so many kids who may not have been diagnosed, but have similar problems."
Now Barber helps others do the same. Thomas, now 12, attends Springstone School, but Barber continues to work with his former school district's autism task force, and she gives the district credit for making her son's elementary years such a success.
"It's very emotional to go in and say, my kid is this and I need this," she says. "If (parents) know what they're supposed to have, what they're entitled to have, they're 10 steps ahead. You really, really need to know the law. Education is power."
With help from a Barnes & Noble bookstore in Walnut Creek, Calif., Barber launched a parent support group three years ago. She didn't want it to be a group "where everyone sat around and complained," she said. Instead, she brought in guest speakers to talk about federal disability law, mental health and Asperger's treatment strategies. The 20 to 100 parents who show up each month share resources and tips, and discuss books on autistic spectrum issues.
Of course, recently it was her own book that was front and center. And next year, it may be the new book she's working on with Thomas. He fits that project in between his other interests - swimming, art, drama and screenplay-writing.
"He was at my booksigning and I asked, `What does AS stand for?'" Barber says, her eyes bright with delight. And Thomas replied, "Awesome student."
"That's right," says Barber. "He knows everyone has issues to work on."
Knight Ridder Newspapers
By age 3, Thomas had stopped talking. He seemed to enjoy being around other children, but he never interacted with them. And he spent long periods of time gazing into space, apparently lost in thought.
"I'm not weird," his mother, Karra Barber, remembers telling herself. "Something's wrong."
In the nine years since Thomas was diagnosed with Asperger's syndrome, Barber has become an expert on the topic. Her book - "Living Your Best Life with Asperger's Syndrome" (Paul Chapman Educational Publishing, $21.95) - hit bookstores in April.
But back then, she only knew that, despite her pediatrician's reassurances, something was off. Her tiny son was obviously bright - he could write his own name and he taught himself to read - but he could barely communicate. Loud noise was a problem. So was getting his hair cut. And certain food textures horrified him.
All Barber's worries came to the fore one day at the park, when she compared her then 3-year-old son with the toddlers playing nearby. She went straight to the library and followed symptoms from book to book, as if they were clues or puzzle pieces. All her research pointed to a sensory integration dysfunction of some kind, an inability to sort through all the sights, sounds, smells and textures that assail us at any given moment.
When Barber returned to the doctor's office, she demanded a referral to a neurodevelopmental pediatrician. The diagnosis was pervasive developmental disorder and - finally - Asperger's syndrome, a high-functioning spectrum disorder marked by average to high intelligence and an utter absence of empathic social skills.
Parents and teachers at The Springstone School in Lafayette, Calif., and Orion High School in Moraga, Calif., private schools that specialize in teens and preteens with Asperger's syndrome, describe the disorder as a core inability to multitask. It's as if each piece of sensory information had to be processed separately, they say, instead of simultaneously. There is no big picture - it's all details.
But with a diagnosis in hand, says Barber, the problem could be tackled.
"It is what it is," she said. "You get what you get and move on. It's your perspective that's most important."
Her book details her family's experiences, while providing a road map for other parents to follow. For the Barbers, the key was unlocking Thomas' communication block and building on his strengths.
Barber found two speech pathologists, an occupational therapist and a physical therapist, who began desensitizing Thomas to the sights and sounds that overwhelmed him. He learned sign language, then regained his language skills. He learned how to cope in social situations, buy a BART (Bay Area Rapid Transit) ticket, ask directions and thrive in a school setting.
And his mother learned to take charge and advocate on his behalf.
"When I realized what I needed to do, I told people, `This is what the issue is, this is what I need from you,'" she says. "I was pushy. I did (teacher trainings). I tried to be funny and helpful, because I knew there were so many kids who may not have been diagnosed, but have similar problems."
Now Barber helps others do the same. Thomas, now 12, attends Springstone School, but Barber continues to work with his former school district's autism task force, and she gives the district credit for making her son's elementary years such a success.
"It's very emotional to go in and say, my kid is this and I need this," she says. "If (parents) know what they're supposed to have, what they're entitled to have, they're 10 steps ahead. You really, really need to know the law. Education is power."
With help from a Barnes & Noble bookstore in Walnut Creek, Calif., Barber launched a parent support group three years ago. She didn't want it to be a group "where everyone sat around and complained," she said. Instead, she brought in guest speakers to talk about federal disability law, mental health and Asperger's treatment strategies. The 20 to 100 parents who show up each month share resources and tips, and discuss books on autistic spectrum issues.
Of course, recently it was her own book that was front and center. And next year, it may be the new book she's working on with Thomas. He fits that project in between his other interests - swimming, art, drama and screenplay-writing.
"He was at my booksigning and I asked, `What does AS stand for?'" Barber says, her eyes bright with delight. And Thomas replied, "Awesome student."
"That's right," says Barber. "He knows everyone has issues to work on."