• Meet with teachers and administrators to educate them about your child’s JA. Ask if there are any modifications to schedule, activities or equipment that may be available to make it easier for her to cope.
  • Ask if your child might have more time to travel from class to class to avoid struggling through crowded hallways or stairwells.
  • Ask about receiving a second set of textbooks or materials so one could be kept at home, reducing her need to carry heavy items to and from school.
  • Arrange for assignments to be sent home on days when your child has to be out of school due to a flare, a medical appointment or surgery.
  • Discuss the upcoming year’s curriculum, including physical education or typing courses, to determine what activities might be more challenging for your child with JA, and how she can participate as fully as possible.

Not only kids with JA struggle to cope with the pressures of the disease. Parents also find it hard to cope with the stress of caring for a child with JA, including having to leave work for a child’s medical appointments or sick days, managing the high costs of JA treatments, and their worries about their child’s health and future.

A recent Canadian study looked at 182 families who have a child with JA to identify what affects their ability to cope. The study found, not surprisingly, that these parents had greater demands on their time and energy due to their child’s illness. Parents whose kids reported more psychological or physical problems had higher levels of psychological distress – especially mothers. Parents of kids with JA who were unable to participate in school or extracurricular activities were also more distressed. These parents seemed to worry about their child being able to fit in with peers over the long term.

Here are some tips to help parents cope more successfully:

Understand your child’s condition. Talk with her doctors about the physical and psychological challenges your child may face due to JA. Ask questions about treatments and long-term outcomes. Learn how to spot the onset of flares early so treatment can begin sooner.

Seek help when you need it. Ask for help from other family members, friends, or even from government services. Ask a relative to help with food shopping or transportation on days when you’re busy taking your child to a doctor’s appointment. If you’re struggling to pay for costly treatments, contact your insurer or investigate drug manufacturer’s discounts.

Don’t favor your child with JA over her siblings if possible. A child with JA may need more time and attention than her siblings who don’t have the disease, but feelings of inequality can create turmoil within a family, adding to parents’ guilt and stress. Some rules, such as how much time can be spent playing computer games, should apply to all the kids in the family.

Explore support groups and helpful resources. Check out local support groups of parents whose kids have chronic illnesses so you can swap coping tips or just share feelings. The Arthritis Foundation offers many resources to help parents and kids cope with JA, including camps, an annual summer conference for families, online resources, message boards, JA teen retreats, and the newsletter Kids Get Arthritis Too.