Cerebral palsy not stopping USU student from pursuing life by the bushel

By Karina Velez

July 18, 2005 | Since the first grade, Tom has had to use a wheelchair.

When he was 8 months old, his grandmother noticed something was not right. His legs would stiffen up and his head did not have much support.

"He rolled over, went through a couple of the milestones but then it stopped," said Tom's mother, Diane.

A short time later a doctor at The Primary Children's Medical Center diagnosed Tom with cerebral palsy.

"I was shocked, that's when I went into denial, but I wanted to know my resources," said Diane.

According to the United Cerebral Palsy Foundation, CP is "a term used to describe a group of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; or during infancy."

Tom is fortunate; the disease affected him primarily in his lower extremities. He can still move his neck, arms and hands. Diane was shown by nurses what to do with Tom to improve his condition. Stretching his legs helps stretch his muscles out and gain more strength.

"Swimming is really the best thing for him," said Diane.

Tom has had two surgeries at Shriner's Hosptial. At 12 Tom had hip surgery; the left socket was deteriorating. He was in a half body cast for six weeks. About three years ago Tom had a hamstring release.

It is estimated about 8,000 babies and infants are diagnosed with the cerebral palsy each year. Furthermore, some 1,200 to 1,500 preschool age children are documented each year with cerebral palsy, according the United Cerebral Palsy Foundation.

Diane says there is a cycle that most parents go through who have a child with disabilities, from denial, anger, blame, acceptation to a plan of action.

Tom has been fortunate to have a mom who wants him to lead a normal life as possible. Tom has river rafted, skied, played wheel chair basketball and flown in a DC3 in Alaska with his father.

"I've never really treated him much differently," said Diane.

"It didn't stop me from trying new things," said Tom.

According to United Cerebral Palsy there is an ever-growing field of adaptive sports for people with disabilities. Sports and leisure programs provide opportunities for people with disabilities to socialize, relax, and enjoy the benefits of recreation.

Tom, 20, finished his sophomore year last spring at Utah State University with nine credits. Tom would like to get into sports writing. His favorite teams are the New England Patriots, Boston Red Sox and the Utah Jazz.

"I'm more of a seasonal sports guy," said Tom.

Tom watches his favorite teams on TV; he sits in a specially made chair with his special remote control in hand.

"My remote control has big buttons on it and so that makes it easy for me to push them," said Tom.

Tom graduated from Logan High School in 2003; he served as student body vice president his senior year.

"The transition of high school to college was very traumatic," said Diane.

College only has to provide what is necessary, she said.

Tom said, "The transition from high school to college was so difficult for me because I did not know where everything was located on the university. It took me a little while to get used to the university and getting around. Also it was difficult trying to get around because of the snow but I finally was able to do it."

Every day Tom has someone who comes to his home to bathe him, stretch him out and get him ready for school.

"The aides come and get me up around 7 and stretch me out and other stuff like that. I eat breakfast then I go to school. My mom usually has my bowl and spoon out and my orange juice ready when I get down stairs," said Tom.

Tom's house is not very wheel chair friendly, Diane tries to take him from point a to b when he needs to move.

"My mom drags me around or I try to take a few steps," said Tom.

A bus comes daily to pick him up and take him to the USU campus. Later they pick him up and take him back home.

"I try not to leave him alone too often," said Diane.

Diane works part time and is also a graduate student. "Someone has to come into the home while I'm in class," she said.

For Diane being single and having a child with a disability has often left her hands tied.

"What am I going to do with a full-time job? It's hard on me" she said.

Having a child with cerebral palsy makes it difficult to relocate.

Diane was offered a job in Idaho but could not take it because of her responsibilities to her son.

USU offers the Center for Persons with Disabilities. Tom has an aide who helps him with homework, takes him to lunch and assist him in any needs he may have while on campus.

Diane thinks that one day Tom will eventually want to be independent from her, live with roommates and experience things on his own. Diane lives by a poem that was given to her when Tom was diagnosed with cerebral palsy,

"I think it depicts the whole picture," she says. "It's about someone who has planned a fabulous vacation to Italy, but ends up in Holland. You have to appreciate what you have," said Diane.

The last line of the poem, Welcome to Holland, says: "If you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

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