A Richfield boy with quadriplegia is being featured this week on a Twin Cities radio event to raise funds for the Children’s Cancer Research Fund and Gillette Children’s Specialty Healthcare. Joe Carr, 9, is among six children being profiled in the annual KS95 for Kids Radiothon Thursday, Dec. 6 through Friday, Dec. 7.
“When Joe was born there was a knot in the umbilical cord so there was a loss in oxygen,” said Joe’s mother, Kristi Carr.
He was in the hospital for 10 days, and Joe’s diagnosis of spastic quadriplegic cerebral palsy came after his family brought him home; a pediatrician noticed he wasn’t hitting some of the developmental milestones common for children.
Joe’s condition, which causes spasms affecting his limbs and puts him in a motorized wheelchair, took its toll on the family, which consists of father Mike and 12-year-old sister Elenor in addition to Kristi. “The first couple years were very hard,” Kristi said. “We got very minimal sleep.”
Kristi left her fulltime job working for then-Dayton-Hudson to take fulltime care of her son. Somebody always has to be with Joe, she said — for daily tasks like bathing and dressing and going to the bathroom.
Although those familiar with conversing with Joe can understand his regular voice, Joe speaks with the help of a machine called a DynoVox, which speaks for him at his command. He eats through a feeding tube, too. While he eats by mouth as well, the spasms caused by his condition cause him to burn so many calories that is requires the supplemental nutrition delivery.
For Kristi the birth of her son was like entering a new line of work. “It’s sort of a whole different career for me,” she said.
Joe’s sibling felt the effects of the new arrival and the attention he required. “His sister probably didn’t get all the attention she would like,” Kristi said.
Soon, though, the family would have help. Bill Aberg is a paraprofessional at Richfield’s Sheridan Hills Elementary School. There, he worked with Joe in kindergarten, and when the Carrs learned they could receive assistance from the county to hire someone to spend some time with Joe so that his mother could spend quality time with his sister, they hired Aberg for the task.
They spend 10 hours a week together each summer, going about daily tasks and even roughhousing like play buddies.
“He wrestles around with Joe like he doesn’t have a disability,” Kristi said.
The interaction between Joe and Aberg can be as mundane as heading down to the store. “Probably his favorite thing to do is we take a ride over to the HUB shopping center,” Aberg said.
“He loves going especially through the automatic doors.”
They’ll shop for groceries and check out the toy section and maybe rent a movie, then drive around town, taking time to stop at a playground.
“He’s actually a real adventurous kid,” said Aberg, who is charmed by Joe.
The first thing is, he’s just the cutest kid,” he said. “He just lights up. He’s very enthusiastic.”
Aberg said last summer when he was spending time with Joe and they had just found out about his role in the radiothon, the boy insisted the car radio station be tuned to KS95. “We listened to that all summer,” Aberg said.
Joe’s condition doesn’t keep him from an active lifestyle. He plays baseball in the Miracle League, which was formed to give opportunities to kids with disabilities. Also, he started riding a horse at age 2.
He handles himself in school, too. His mother said “he’s a whiz at the computer,” and is a “very good student.”
Although he needs physical help, Joe is “pretty close to being a typical student,” at Sheridan Hills said Shelby Bastian, his special education teacher.
An outgoing demeanor has helped Joe socially in the classroom, too, as he spends much of the day learning alongside the general student population. “The kids are so accepting, they want to help him so much,” Aberg said. “Kids would literally push to help out Joe.”
At home, though, there is no special treatment, at least not from Joe’s sister. “She’s so good for Joe because she treats Joe like the way any older sister would treat a younger brother,” Aberg said.
It is the family’s goal to teach Joe to be as independent as possible. “He doesn’t want you to do stuff for him,” Bastian said. “If he can’t do it he wants to learn.”
Joe’s condition took some getting used to, but the Carr’s are making it, Kristi believes.
“We have to adjust to, this is what our life is like, and we’re adapting and he is doing remarkably well,” Kristi.