Back-to-school means lugging around heavy backpacks full of textbooks and scribbling out notes and test answers—and, for those stuck distance-learning because of COVID-19, long hours hunched in front of computer screens. But what if your back and shoulders are inflamed, or your finger joints are too sore to take notes during a lecture? This is often the reality for kids with juvenile idiopathic arthritis (JIA).
JIA is an autoimmune condition that involves inflammation of the joints, and the resulting symptoms—including pain, stiffness, and fatigue—can be obstacles for students, whether that means keeping up with assignments or making friends. We’ve asked experts for tips you can employ to help your child with JIA thrive this school year. Here they are:
1. Make Sure Your Child’s Treatment Is Working
Well-managed JIA gives your student a better shot at conquering all the typical school activities, which is exactly what every parent wants for their child. It starts with working with your child’s rheumatologist to come up with the best treatment plan, then checking in regularly to make sure everything is going smoothly. A big part of this is making sure your child is taking their JIA medication as directed to help reduce the risk of flares, says Amir Orandi, M.D., pediatric rheumatologist at the Mayo Clinic in Rochester, MN. “I always encourage parents to use a lot of supportive tools to help with medication adherence, whether that be reminder apps or setting an alarm,” says. Dr. Orandi. If your child is old enough, you can encourage them to take part in setting these reminders themselves to build the habit.
You can also be proactive by getting to know your kiddo’s typical symptoms and the signs that they may be entering a JIA flare, says Dr. Orandi—that way, you can help bring down a flare as quickly as possible.
“If symptoms are getting worse over a few days, I always ask the patient to let me know,” he says. The doctor can evaluate their joints and adjust medication if needed.
2. Communicate With the School Early and Often
It’s tough for a teacher to help with symptom-related struggles in school if they don’t fully understand your child’s needs. Taking the time now to educate your child’s school about their JIA can save a lot of headache throughout the school year. The good news is most teachers and school administrators are happy to work with you to improve your kiddo’s experience.
“Because teachers cannot see child arthritis the same way they can see a cast for a broken leg, it may be necessary to educate them about juvenile arthritis and ask your doctor what specific accommodations the school should be required to provide,” says Diane Brown, M.D., pediatric rheumatologist at Children’s Hospital Los Angeles. “That may include things like not being asked to run the mile in the specified time when arthritis is impeding your running, being allowed use of a keyboard, or being given extra time to hand write an essay exam.”
To help with this process, consider looking into setting up a 504 Plan or Individualized Education Plan (IEP) for your child, recommends Dr. Orandi. These plans help ensure that the school recognizes the child’s disability and will provide special accommodations or services. “This gives the parents some ammunition,” he says. “That way [teachers] can’t mark a child tardy if they have stiffness in the morning and it takes them time to warm up, and they won’t be dinged if they have to miss school.”
Physical activities in school, like gym class, may pose unique struggles for your JIA kiddo, too—requesting accommodations here is wise, especially if there are mandatory physical-testing requirements that may be difficult for your child, like running the mile or doing a flexibility test. “Teachers should work with them to come up with a modified activity,” Dr. Orandi says. “These kids want to move because they know it helps them—they just want to be able to choose the activity.”
That said, when JIA treatment is working and your child’s symptoms are well-managed, there are likely plenty of activities they’ll be able to do with the class—and they’ll likely want to be out there doing the same thing as everyone else whenever they feel up to it.
“Teachers should encourage the student to do all of the things that their peers do when they are having good days, and not assume that the child with arthritis is incapable always,” says Dr. Brown. “And they should be understanding for the bad days when children cannot do the same thing that they were able to do the day before.”
Not sure where to start when it comes to educating your child’s school? “The Arthritis Foundation and the Juvenile Arthritis Association have some good materials for sharing with teachers and schools,” Dr. Brown says.
Keep reading for more examples of accommodations your child may need.
3. Encourage Brain (and Body) Breaks
Sitting at desk for hours at a time—or, thanks to COVID-19, sitting in front of a screen distance-learning all day—can wreak havoc on already-achy joints for kids with JIA.
“Arthritis affecting the back, hips, and knees can make it intensely uncomfortable to sit in one position for prolonged periods,” explains Dr. Brown. That’s why regular breaks to move and stretch to combat stiffness are key, she says. “Children with arthritis may need extra time on timed assignments so that they can physically complete the writing while taking occasional breaks to rest and stretch and rub sore joints.” This is something that can be built into your child’s 504 Plan or IEP. If working on assignments at home, setting a timer to signal “break time” can be a helpful reminder for kids who may be tempted to power through, she says.
The usual allotted time to move between classes also may not be enough for kids having JIA flare-up—teachers should be warned that they may need a few extra minutes to make the trek across campus or use the bathroom. You may even want to request an elevator pass if stairs at school are proving taxing, Dr. Brown says.
For kids who have made the switch to distance learning, built-in breaks throughout the school day may be more infrequent than normal, says Dr. Orandi. “I’ve heard from people who have these eight-to-four schedules sitting in front of a tablet,” he says. “This is so different from school where you move between classes and have a recess break.” It’s smart to try to emulate a “normal” school-day schedule as much as possible, encouraging regular breaks for movement, he says.
And if the school is setting an online schedule that isn’t working because of your child’s JIA—for example, back-to-back classes without breaks—don’t be afraid to speak up or reach out to your child’s rheumatologist to advocate on their behalf, he says.
4. Provide Tools and a Good Set-Up When You Can
Whether at home or school, there are plenty of ways to make your child’s school day and study time easier despite JIA.
The first step is finding a comfortable workspace for your child, says Dr. Orandi. “Finding the right environment to do the work in, and encouraging appropriate breaks, is important,” he says. If they’re working at home, consider investing in an adjustable standing desk or simply prop up their laptop or tablet with a couple of books so they’re at a comfortable height. Buying a supportive desk chair or adding a comfy pillow to their seat may work wonders, too. “And if you find something that works at home, you can advocate for that adaptation at school, too.”
Here are some other fixes to make life easier for kids with JIA in a school environment:
- Ask for permission to type. Some kids with JIA may experience soreness in their wrists and knuckles, making it painful to take tests by hand or keep up with notetaking. “Many students find it easier to type and will benefit from having an educational plan that allows them to type assignments,” says Dr. Brown. Requesting permission to use a laptop in school can help. Looking into dictation software can also relieve the burden of having to write out assignments by hand, Dr. Orandi adds. Your child may also ask permission to record lectures to review later if note-taking is an issue.
- Consider locker placement. Request that your child has a locker at a comfortable height and convenient location to their classes, suggests Dr. Brown. “[That way] they do not have to reach up or squat down when these may be difficult.”
- Get a rolling backpack and request two sets of books. Shouldering a heavy backpack and textbooks can wreak havoc on tender joints for kids with JIA—a rolling backpack can help relieve the burden on inflamed backs, shoulders, and other joints, says Dr. Brown. You can also ask the school if they can provide a set of “at-home” textbooks and a set of “at-school textbooks”—that way they don’t have to carry them back and forth, says Dr. Orandi.
- Be prepared with pain relief options. Having hot and cold packs available during the school day or while doing schoolwork at home can help relief aches and pains. “These do not have to be fancy self-heating or cooling chemical packs as used in hospitals—a long sock filled with rice can go in the freezer or microwave and shape itself around the sore joint,” Dr. Brown suggests. Work with your child’s school nurse to make sure they have these things on hand—along with appropriate over-the-counter pain relievers. The best options are nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, which help reduce pain as well as joint inflammation, says Dr. Brown.
- Find a buddy. “Sometimes children with arthritis can be assigned a buddy to help them with some of these physical tasks,” says Dr. Brown.
5. Prioritize Mental Health, Too
Aside from JIA’s impact on your child’s school performance, the condition may also cause emotional strife for some kids—so taking steps to support their mental health is a must. “There is an important psychological impact of being different—of not being able to keep up with peers, of having to miss school to go to a physician and physical therapy visits—all of which is compounded if teachers do not believe them about their arthritis,” Dr. Brown reminds us.
Educating teachers about JIA may help with this—many times, teachers can find a way to make accommodations without blatantly singling out your child, Dr. Brown says. And education doesn’t necessarily have to stop with the adults in the room either; having your child take an active role in educating their classmates about their condition may help other kids be more empathetic and understanding. “Students teaching students in classroom presentations can be an empowering way to share information about the disease,” she suggests.
Being proactive in this way can help stave off bullies, too. It’s also a good idea to help your child practice what they might say in response to rude comments, like if someone makes fun of their need to take medication, suggests the Arthritis Foundation. If bullying does occur, encourage your child to get help from an adult, the foundation adds—teachers should be informed of all bullying incidents right away to help put a stop to it.
And speaking of other kids, your child may benefit from meeting other children who know what they’re going through—someone who knows what it’s like to need extra time for that math quiz or has to do a different exercise than everyone else in PE class.
“Networking with other children with arthritis is immensely helpful to many patients,” Dr. Brown says. “Groups like the Arthritis Foundation and Juvenile Arthritis Association can connect students with older mentors, like college students and young graduates with high school students, for example.”
Finally, many kids with chronic illness benefit from seeing a therapist, says the Arthritis Foundation. If the emotional toll of JIA is wearing on your child, talk with your rheumatologist to see if they can provide a referral.