High-tech wheelchair allows student to communicate with the world
Published 4:31 pm Wednesday, March 9, 2016
- Irrigon life skills teacher Mark Rouska and educational assistant Cheri Snodgrass help senior Jose Adan Guardado out of his wheelchair and onto a mat Wednesday at Irrigon High School.
Jose Adan Guardado faces each day with a bucketful of optimism.
He’s got a lot going for him. A smile that could light up the scoreboard at Madison Square Garden. An agile brain. A stubborn streak as deep as the Grand Canyon.
All of this helps the Irrigon Senior High School student navigate his challenging life. Abandoned as a toddler by his mother in El Salvador because of multiple disabilities, the little boy ended up in Irrigon with his grandparents. Cerebral palsy keeps him from being able to speak clearly or control his muscles. He must take food through a gastrointestinal tube connected to a port in his stomach. These days, “Adan” (pronounced uh-DAWN) cruises the school hallways and sidewalks in a high-tech wheelchair he controls by pressing the back and sides of his head against a padded bar that curves around his noggin. He communicates with Dynavox software that allows him to use his head to pick out letters, numbers and words on a screen attached to his wheelchair. He pieces sentences together one chunk at a time.
“He needs the chair to communicate with the world,” said Irrigon life skills teacher Mark Rouska.
He walked alongside Adan one afternoon this week as the student coaxed his motorized chair down the school hallway. Adan weighed in on the conversation with smiles, eye rolls, head shakes and exuberant exclamations.
Besides Adan’s indomitable attitude, his wheelchair is what will allow him to navigate his classes next year at Blue Mountain Community College when he studies computer technology.
Problem is, the chair is falling apart.
Adan has gotten used to his ride stuttering and stopping at inopportune times. The motorized wheelchair consists of donated parts and pieces cannibalized from other chairs. When it breaks down, Intermountain Education Service District physical therapist Jodi Garberg comes to resurrect the chair.
“She brings special tools, baling wire and duct tape to fix it up,” said Adan’s educational assistant, Cheri Snodgrass. “We’re babying it along.”
Garberg suggested a GoFundMe account and Adan started one to purchase an $18,250 motorized chair that will allow him to confidently venture out into the community without getting stranded. The account has risen to $1,125 in a month. The account, at gofundme.com, is titled “New Power Wheelchair, by Jose Adan Guardado Alberto.”
Rouska has become one of Adan’s biggest advocates. Teacher and student share a bond that is Kryptonite strong. On Rouska’s first day last year at school, he got a demonstration of Adan’s playful humor. When the teacher disappeared into the restroom, Adan backed his 300-pound chair to block the doorway.
“I tried to get the door open and couldn’t,” Rouska said. “I heard laughing on the other side.”
Inside Adan’s dysfunctional body, say those who know him, is a kind, super-intelligent, politically astute guy who loves rap music and computers.
Despite Adan’s disability, Rouska said, he regularly repairs computers at the school, develops 3-D videos and recently designed prototypes of logos for the Arlington Public Library. The student’s persistence and joie de vivre amazes Rouska.
“He’s got every right to be mad at the world, but he isn’t,” Rouska said.
That fact struck home with Rouska after learning he has stage four cancer. In 2013, Rouska beat kidney cancer, but doctors recently found another mass in his lungs. These days, coughing attacks often stop him in his tracks. When that happens, Adan rolls up to Rouska, concern in his brown eyes.
“After a coughing attack, he’s always the first one there to see if I’m okay,” Rouska said.
After getting the diagnosis, “I was depressed,” Rouska said, “but then I came into my room and saw Adan. If anyone has the right to quit or be upset at the world, it’s him. I felt bad for feeling sorry for myself.”
Rouska describes watching Adan sit on a mat on the floor using his knuckles and superhuman concentration to operate an iPad or seeing him deal with horrible muscle spasms, which cause his hands to cramp and contract.
“This guy can be in a ton of pain and still get his work done,” Rouska said.
Rouska hopes to teach until June, but he has one goal before he goes — to get Adan a new chair.
The teacher also helped last year when Adan got an order from the United States Immigration and Naturalization Service, saying he would be deported back to El Salvador. Rouska and others, worried that Adan would die if he was deported, alerted the offices of Sen. Ron Wyden and Rep. Greg Walden. The deportation order was eventually withdrawn.
This week, Adan, in his quest to become a U.S. citizen, had an interview with an INS representative. He was granted permanent residency, which is the last step before citizenship. On Thursday, high school students and staff threw him a surprise celebration.
Adan will leave the cocoon of the Morrow County school system at the end of this year. Special needs students are allowed to attend until they are 21 and Adan has reached that age. He has big plans for his future.
With the aid of his Dynavox, Adan said, “I want to be a tech guy or editor of videos.”
“He wants a job,” Rouska said. “He doesn’t want to be a burden on society.”
Jodi Garberg, Adan’s physical therapist, says she is inspired by Adan’s drive, despite all his challenges.
“He’s an amazing, bright kid who is trapped inside his body,” she said.
She expects him to find his way with a little help from his friends.
“What he needs,” she said, “is a new wheelchair that will give him the capability and technologies to access his world, not one that shuts down when he goes over a bump.”
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Contact Kathy Aney at kaney@eastoregonian.com or call 541-966-0810.