Arkansas Support Network: Media -
[Cached Version]
Published on: 9/14/2003
Last Visited: 12/29/2005
Stephanie Marks stabs her index finger into the indented spaces on her facilitation board, spelling out the narrative of an autistic child named Paul.
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The family had been trying to help Marks plan a vacation, thinking a train trip might be ideal.
"I want to go to Disney World," Marks spelled out, punching out the letters with characteristic zeal.
"We realized then that a lot of what we thought about Stephanie was not the real thing," her mother said.
Facilitated communication works by giving Marks the resistance she needs to stay focused and on task, George explained.The facilitator holds Marks' wrist away from the board with a strong, firm pressure, which Marks must overcome to spell out words.
Without resistance, Marks gets lost in the moment, forgetting to go on to the next letter.
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Once it was clear that Marks could communicate, she was retested by the same doctor who had given her the original diagnosis of mental retardation.
"Stephanie was actually encouraged to find out she had autism, because (the diagnosis) made sense to her," Fields said.Marks had always known she wasn't retarded, and wondered if it were her sanity that was askew.
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Marks zips and unzips the canvas case she holds on her lap.Zip.Zip.Zip.The rhythmic action seems to soothe her.Marks, like many people with autism, has difficulty maintaining control in unfamiliar situations.Repetitive motion helps minimize the fear.
She watches the world from beneath dark brows, withdrawing eye contact after the first curious glance.Her jaw juts from a narrow, freckled face.A halo of dark hair frames her head.
Some of Marks' phrases are intelligible: "Uh oh ......She also uses American Sign Language, but lacks the dexterity to form all the signals.
"Spell it out," Hulsey tells her, handing Marks the wooden board.
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"Autism is compulsive behavior, which means Stephanie could be the most brilliant person on the planet, but her ability to (behave normally) is inhibited," Hulsey said.
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"The way Stephanie explained it to me, every good, bad, sad and happy thing that has ever happened to you runs through your head all at once.
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When Marks attends college, her staff member goes along to facilitate.
"Stephanie teaches me more than what I teach her," Hulsey said.
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Marks shares the same "special place" as Paul - a place within her psyche where confusion cannot reach.The temptation to retreat there is sometimes overpowering, yet Marks resists it, in accordance with her goals.
"She's worked very, very hard to stay in touch with what's happening around her and not slip away," said her mother, who recalled Marks rocking for hours as a child, unreachable and blank."It's not very comfortable for her (to stay focused and aware.) In fact, it's often very uncomfortable.But you can't go to class, you can't write a book, without being there."
Marks began writing her narrative about Paul six months ago.She'd been taking classes at NorthWest Arkansas Community College in Bentonville, one per semester, and realized how much she likes to write.
"Paul is a fictional character I can relate to, to help express," she spelled out.
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At other times, Marks grinds her teeth, bites her hand and shakes her head compulsively from side to side.
>"No, no, no," she shouts, her arms crossed over her chest and her face pursed in a frown.Yet easy laughter wells out of her throat as naturally as bouts of frustration, one following the other like sunshine after a storm.
Marks is working on two books - the one about Paul and another one for parents of autistic children to read to their youngsters.She also writes poetry.
She's been very private about her writing, showing it only to a few close friends.Her decision to share Paul's story with newspaper readers surprised those who know her, but Marks has a message she wants others to hear.
"It's time to teach how you guys are the broken ones," Marks said via the facilitation board."You guys think difference is a bad thing.I think difference is a rainbow."
The lack of understanding many people have for those with physical and mental disabilities is as big a handicap as the differences they stare at, Marks believes.It irritates her to be typecast as something less than fully human, when she shares the same thoughts, emotions and yearnings as everyone else.
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"Stephanie has to cross rivers and climb mountains to reach every little goal.When 99 percent of us would stick our heads in the sand, she keeps trudging."
Rystrom met Marks about a decade ago, when the recent college graduate went to work as the autistic woman's aide.
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"Stephanie is the most caring person I have ever met," she said."She's also extremely smart.She's a very unique, special person who has more things to say than anyone will ever give her credit for."
Marks is an astute judge of character, Rystrom continued.