Jay Pickthorn | Photojournalist

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Breaking the silence { 9 images } Created 8 Jan 2010

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  • Elaine Larson has never shared a conversation with her 22-year-old grandson, Malachi. But they've forged a bond that's every bit as close and warm as a more conventional familial relationship. A grandmother of 12, Elaine tends to Malachi without any help from caregivers including lifting him into his wheelchair.
    Breaking the silence
  • Elaine has cared for Malachi since he was born inside a fragile body that moves almost entirely of it's own accord. Elaine fell in love with Malachi the day he was born, too sick for his parents, a young military family constantly on the move, to take on. The doctors diagnosed him with severe cerebral palsy.
    Breaking the silence
  • When Elaine found out about a digital-age device that could allow her to peek into her grandson's mind, a deep sense of possibility flooded her. Over the past 22 years she has learned to read him through a set of clues. At times when she second-guesses her read on Malachi, Elaine wishes he could speak his own thoughts. When she looks ahead to the day her own body will start giving out, she worries others might not understand him the way she does.
    Breaking the silence
  • Malachi laughs at his former high school teacher Marilyn Larson's jokes. Larson told Elaine about Brainfingers, one in a new generation of hands-free computer control devices that tap brainwaves and facial muscles; with practice, people with disabilities can harness these signals to move a computer cursor and make clicks. The device could give Malachi a chance to communicate. Elaine knew she wanted it.
    Breaking the silence
  • Moorhead High School occupational therapist, Kevin Anderson, says Malachi was among the students facing the steepest physical hurdles, but he scored a grant for $2,100 to purchase the device and a laptop. The year brought subtle changes. Malachi's gaze, which at first dashed from side to side while he was using Brainfingers, lingers on the screen longer. Because of his physical limitations, Anderson says, it's hard to gauge if his disease ravaged his brain as it did his body.
    Breaking the silence
  • Cerebral palsy robbed Malachi of sway over his body. In school, Malachi couldn't hit the switch on devices other students used to play prerecorded statements.
    Breaking the silence
  • The Brainfingers training takes place at Heartland Industries, a center for adults with disabilities. Cindy Hiam stands by Malachi's side, pointing at the screen when Malachi's gaze wanders off. Laura Lindblad stands behind his wheelchair cradling his head to keep it facing the screen. She presses the electrode band to his forehead and recites prompts in his ear. The team hopes that in the future, Malachi will need less helpers and fewer prompts.
    Breaking the silence
  • To Elaine, Malachi seems more alert and upbeat. They have longer "conversations" when he comes home from Heartland Industries. "I'm so proud of you, Malachi," she tells him.
    Breaking the silence
  • Elaine wheels Malachi in from the cold after Laura Lindblad, left, drops him off from Heartland."I have faith in Malachi and Brainfingers," she tells Lindblad. "And I am just waiting for the day when I can ask him a question." But Elaine doesn't waver in her hope. Better than anyone, she can put Malachi's small strides in perspective. For the first time, he's gained a measure of control over his reality - even if it's over a small slice of it on a laptop screen.
    Breaking the silence