Yahoo Finance Back to School for Kids With Chronic Pain
You know it's a new school year when health warnings about carrying bulging backpacks begin to appear. But what if even the slight weight of an empty backpack sends ripples of agony through your child's body? Or if your son or daughter can't bear to wear new school clothes because it's too painful?
For kids living with chronic pain, ordinary parts of the school day that most kids take for granted -- going to class, sitting at a desk, concentrating on assignments, walking to the cafeteria -- become much harder. When kids deal with conditions such as juvenile arthritis, migraine, fibromyalgia or certain pain syndromes, managing well at school is a major accomplishment. Here's how parents can help kids succeed.
[See: 10 Concerns Parents Have About Their Kids' Health.]
Long Absence
Like his California classmates, Jasper Neale returned to eighth grade after the 2014-15 winter break. Other students had to readjust slightly after a couple weeks away from the school grind. For Jasper, however, going back was a very big deal. He had missed nearly the complete first semester because of an excruciating pain condition that engulfed his body, following what had seemed like a minor stress fracture to his heel.
Kids, curious about Jasper's extended absence, made wild speculations. "A bunch of friends-slash-classmates kind of fabricated stories about what happened to me," he recalls. "Some people thought I had an amputated leg and all these different crazy things."
The truth was more complicated. Four months after his initial injury, Jasper was diagnosed with complex regional pain syndrome, a condition that left him screaming in pain at the slightest touch. His mother, Lori Neale, detailed his harrowing health journey here. Eventually, Jasper traveled with his father to Children's Specialized Hospital in New Jersey to enter the inpatient program for kids with chronic pain.
School Readiness
"A lot of our youngsters unfortunately wind up being out of school because their pain and dysfunction are so severe," says Dr. Katherine Bentley, director of the pain program at Children's Specialized Hospital. The inpatient program is "very intensive," she says. "The kids are in therapies all day long." Occupational therapy, physical therapy and psychological counseling help kids regain their abilities even if pain persists.
"At the end, we simulate the school environment," Bentley says. "So kids wear their backpack. They have to walk the whole hospital and stairs -- we don't use elevators in the program." Occupational therapy includes cognitive tasks such as reading, writing and math games, she says. "Whatever it may be to help them function in school."
Lori Neale says meeting with Jasper's teachers helps pave the way for a better school experience. "One thing with complex regional pain syndrome is it's very poorly understood," she says. Just sending an email to a teacher wouldn't convey what he's going through, especially because he has an invisible illness. "You can't physically see it on him," she says. "There are no casts; there's no hair loss like a lot of other serious illnesses." His school and teachers have been "incredibly supportive," she says.
The first week back at school is the worst, Bentley says. "Every day gets a little better," she says. "Some of our kids have been out of school for years. So it's a huge transition to get back."
[See: 8 Lesser-Known Ways to Ruin Your Joints.]
Parental Tips
About 1 in 4 kids deals with a pain-related condition, says Dr. Tonya Palermo, a professor of anesthesiology and pain medicine at University of Washington School of Medicine and a researcher in pediatric chronic pain at Seattle Children's Hospital. Headache, abdominal pain and musculoskeletal pain are the most common, she says.
"School is a huge challenge," says Palermo, co-author of "Managing Your Child's Chronic Pain." For kids, pain can be disruptive on every level from lack of sleep to friendship issues. "School's so complicated because it's a big mix of academic demands, emotional demands, social demands and cognitive demands," she says.
For parents supporting kids through their school year, experts offer the following tips:
-- Think about your child's capabilities as well as the demands of school, Palermo says. Some kids might need a more gradual return to school, starting with shorter periods of a few hours a day, then increasing as kids can better tolerate sitting, standing and walking.
-- Don't overschedule a child with chronic pain. "It can be tempting at the beginning of the year to really want your child, who maybe has not been involved in a lot of activities, to be immersed right away," Palermo says. Instead, she suggests, start with few activities, adding on throughout the year as children do well.
-- "If children have pain exacerbations at school, it would be helpful for them to have a place to go," Palermo says. "This might be a health room, or a library or even another classroom, where they can take a five-to-10-minute break."
-- For kids who function in pain, attitude is important, Bentley says: "Parents are encouraged to talk more about, 'How was your day in school?' not 'What was your pain number at lunch?' So you're always focusing on the positive -- what they were able to do."
-- "You want to set everything up so [kids] feel safe and supported right away, so they can succeed," Bentley says. That could mean seeking out therapists, pediatric physicians, child life specialists or counselors. Some kids benefit from accommodations through an individualized education plan.
-- Physical activity helps kids function better. Swimming is one option for kids who need lower-impact exercise, Bentley says.
[See: 13 Tips for Getting Kids Health-Ready for Back to School.]
Moving Forward
Jasper, about to start 10 th grade next week, has made enormous strides and is a successful student juggling AP and honors courses. Thanks to the hospital program, Lori Neale says, her son has the tools to cope when he's not feeling well. "He knows how to manage it emotionally, and he knows how to manage it physically," she says.
When it comes to physical barriers, "There's not really a problem at all," Jasper says. "Sometimes you're kind of in pain and the stairs make it a little worse. But that's something you're going to be doing the rest of your life. Just walk up the stairs and kind of deal with it."
So much has improved for Jasper since his pain journey began. "He's able to wear clothes now," Lori says. "He's able to carry his backpack on his back. He's able to complete his full load of schoolwork. He's able to compete in sports. He hangs out with friends; rides his bike. He really leads a very, very normal life."
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