Why is the grass green? Where does rain come from? When is it going to be my birthday again? These are some of the burning questions children ask their parents again and again.
Questions about nature and time are hard enough, but when your child is diagnosed with a chronic disease like juvenile myositis (JM), the questions become even more difficult. How do you explain this complex and confusing condition?
Just like each case of JM, each child is different, so explaining it depends a lot on your child’s own nature. “I think a mother knows her child the best and can gauge what are the right words for that child’s personality and coping abilities,” says Karen, whose 6-year-old son Quinn has JM.
Some tips from parents whose children have JM:
- Stay positive. Find something in your child’s past that you can relate to feeling sick, having to take medicines, and needing tests. Be open about what is going on, but try to explain things in a positive light.
- Call it by a name. Younger children may not fully understand or even be able to pronounce juvenile dermatomyositis. For one 4-year-old, it was enough to know that her rash and weakness are because of something that has a name, no matter what that name really means.
- Give children a sense of control. Children can be in charge of remembering when to take their medicines and even mixing medicines if needed. This helps them learn more about their medicines while giving them some responsibility. Include them in most of your discussions with the doctors, nurses and family members.
- Choose your words carefully. You have more to explain than just the disease itself. Children wonder why they have to have a lot of tests and what these tests mean. Find words and concepts they will more readily understand. One mom described the MRI scan as a big camera that took pictures of her muscles. This made the test less intimidating to her daughter.
- Repeat it. Just like any new lesson, repetition helps them learn. They may ask things over and over to get a better handle on what’s happening to them.
- Timing is everything. Anticipation of a treatment or test can be worse than the procedure itself. Kris, whose son has JDM, doesn’t let him know about his shots or tests too far in advance as it creates unnecessary worry.
Most importantly, trust your instincts.