Sam Williams and his parents knew something was wrong when it hurt for the 8-year-old to grip a baseball bat, but they never considered juvenile arthritis.
It hurt to write, giving Sam a sound excuse for not wanting to do his homework -- or even his work at school. After several weeks, Sam's pain grew worse -- and moved into his knees. He also had pain in his jaw and had trouble walking.
"His brother had to carry him piggyback up the stairs," says Rose Williams, Sam's mother.
After several months, Sam was diagnosed with juvenile rheumatoid arthritis, a disease of the immune system that causes pain and swelling in the joints, among other problems.
Although medication and physical therapy can help, kids with arthritis often have problems in school. Because joint pain and stiffness are often worse in the morning, students may often be tardy or miss school days. They may not be able to perform well in physical education or other physical activities. For many children with juvenile arthritis it may be difficult for them to even carry their books.
But because juvenile arthritis is often misunderstood, it is sometimes hard for children to get the support they need at school, says Harry Gewanter, MD, a pediatric rheumatologist in Richmond, Va. He says it's important for parents to talk to their children's teachers and school officials about a special support plan for children called a 504 plan, named after section 504 of the Rehabilitation Act of 1973.
Juvenile Arthritis: What to Include in a 504 Plan
Your child is entitled to a 504 plan under federal law as long as a doctor confirms that a child needs it. It is legally binding and focuses on support for the child in school. It is for children with a medical diagnosis.
Even if you don't think you will need a 504 plan, approach the school and talk to your child's doctor to prepare a plan, Gewanter says.
"Anybody who has juvenile arthritis should have a 504 plan, at least for a safety net," Gewanter says. The plans are individualized according to a student's particular needs, Gewanter explains.
Here are some things to consider:
- To start the process, observe your child's daily struggles and talk to your doctor. See where the pain points are -- both at school and in your child. In Sam's case, because absences were a problem, "we asked for him not to be penalized" for a high number of absences so long as he was mastering his subjects, Williams says.
- Consider asking for excused tardiness. Because morning swelling and pain are often problems, children with juvenile arthritis often have difficulty in the morning with the simplest of tasks, such as getting out of bed or walking downstairs. Because the child may look and act fine once he or she is at school, teachers sometimes don't understand why the child was tardy. Having a "tardy protection plan" can not only shelter your child from penalties, but it can also take away from stigma associated with the illness.
- An extra set of textbooks for home can be a boost, Williams and Gewanter say. That way, a child won't have to lug home a set of books every day, which may be very challenging at the end of a school day for a child with juvenile arthritis.
- Additional bathroom breaks may be needed for students with juvenile arthritis, says Williams, so discuss this with your child and a doctor. The medication that Sam takes irritates his stomach, causing him the need to go to the bathroom often. Having that stipulated in his 504 plan helps decrease worry and embarrassment, Williams says.
- Consider asking whether your child should be excused from copying from the board. Often, writing can be very painful, even in a child whose case of juvenile arthritis is typically under control. If he or she complains of hand or finger pain because of holding a pencil, you may want to ask for an accommodation for that.
- Breaks for stretching can be helpful for students with juvenile arthritis. Ask your doctor if this is something you should include. Many schools have strict rules about students needing to stay in their seats throughout the day.
- Talk to your doctor and your child's PE instructor about physical education needs. While exercise is encouraged for most children with arthritis, it needs to be exercise geared to the child.
- Talk to your child's teacher, guidance counselor, and principal to get everyone's understanding and backing for your child. While some schools may initially balk at your request just because of the extra time involved, teachers almost always want what is best for their students. Make the process as cooperative as possible.
Perhaps above all, remember to be your child's best advocate by getting the medical treatment and school accommodation that he or she needs. If you notice a child limping for several days, or if your child complains of pain in the joints, seek medical help for your child. Don't discard the pains as "growing pains," doctors say.
"The message we'd like to get out is that growing is not painful," says Steve Spalding, MD, pediatric rheumatologist with the Cleveland Clinic Foundation.
Juvenile Arthritis: Getting a 504 Plan
Before the Williamses had a 504 Plan in place, Sam had to go to summer school because he had missed so many days -- even though his grades were good and he hadn't fallen behind in any of his subjects.
When they first approached school officials about getting one, school officials didn't think he needed one, says Williams. Sam had started treatment and began to feel much better -- and also looked much better to his teacher and other students. That complicated issues for him, his mother says, because it was hard for faculty and other students to realize that even though Sam moved around more easily, he was still in a lot of pain at different times throughout the day.
"When I first approached them [school officials], they said it wasn't something they do if a child is doing well," says Rose Williams.
Gewanter says parents should be prepared, at least mentally, for a struggle. "They say 'no' in the beginning to see if you're interested," Gewanter says.
Even if parents must persist in getting schools to cooperate, the struggle will pay off, Gewanter says.
Juvenile Arthritis in School: IEPs
Most often, students can get the help they need through the 504 plan, which focuses on physical accommodations and allows students to stay within their regular classroom and follow the curriculum that other students within that classroom follow.
Another plan for some students is an Individualized Education Program, or IEP, which allows a student to follow an individualized plan under the services of the school's special education program. The IEP option generally means that a student needs special education because the student's disability impedes the ability to learn. An IEP is also legally binding.
Juvenile Arthritis: Looking Ahead
Williams reminds parents that medications do work in most cases. Also, some children do enjoy periods of remission, Gewanter says, and today's drugs have made a dramatic difference.
In the case of Sam, now 11, his hands are back to normal, even though he still experiences pain. And some days, there are flare-ups.
Last fall, however, Sam had to worry more about pop-ups and bases on balls than his juvenile arthritis. He was back at the ballpark, with no hands that were in pain. Instead, he was the pitcher in a game of the Dixie Youth World Series.
"Stay hopeful," Rose Williams says. "It will get better."