By Jaime Moy
As parents, it can be easy to hover over our kids and come to their rescue before they even realize they need rescuing. And, if your child has a chronic illness like my son with juvenile psoriatic arthritis, the temptation is compounded. Chances are, kids with chronic diseases have seen enough pain, needle pokes, and medication side effects at a young age to last a lifetime. The last thing we want is for our children to hurt even more. This is especially true at school.
To protect our kids, we swoop in with our mom and dad superhero capes and become protective force fields that dodge all insensitive questions from classmates and unrealistic demands from teachers. Sooner or later, we have to retire our superhero costumes and accept the fact that we aren’t with our children 24/7 and we can’t save them from every situation. Nor should we.
During a meet and greet before kindergarten, my son was covered nearly head to toe with psoriasis. I tried to get him to wear long sleeves and jeans to hide the plaques so that he wouldn’t have to answer embarrassing questions. He refused and only wanted to wear a T-shirt and shorts. It was one of the hottest days of summer, so you couldn’t blame him.
I took a deep breath, and we went in his classroom to meet his teacher. While I was busy talking to the teacher, I heard another child ask, “What’s that on you?” Before I could even turn into Super Mom, my son said in a matter-of-fact tone, “Oh, it’s ok. It’s psoriasis. It’s kind of like bug bites because the spots are itchy. But you can’t catch it, so it’s ok.” This other little boy and my son became good friends that year.
While you’ll probably wear your Super Mom and Super Dad capes more often in elementary school than in middle school or high school, kids can start advocating for themselves in kindergarten. Just remember that they might not be able to handle everything themselves and will need some coaching along the way. Be on stand-by and ready for action if the time arises. In the meantime, here are some ideas to get your kids empowered:
• Tell them your story. Have your child explain to the class what disease he has and how it makes him feel. It can be intimidating being up in front of the class alone, so bring a friend and do it together. Be sure to explain the disease in your own words, just like my son did with his psoriasis. Older kids can use class assignments like giving a speech or writing a paper to educate the class. Your child will probably get questions, and while some may be insensitive, the majority will just stem from curiosity. The more students know about the disease, the easier it will be for your child. While Psome.org is geared for children with psoriasis and psoriatic arthritis, it offers ideas that students with other diseases can adapt to teach the class.
• Get a 504 Plan in place. Parents need to take the lead, but you can request your child be present at the meetings. This is a great way to start communication between the school staff and your student, showing that everyone is on the same page and has the same expectations. That can make it less scary for your child to speak up when he needs more time to finish a test or needs to sit out during gym class, which are part of his accommodations.
• Engage students with disability awareness activities. When my son was in fourth grade, his class attended a disability awareness assembly. The students used canes and blindfolds to better understand what it was like to be blind. They were subjected to loud noises and chaos to demonstrate how it feels to have autism. The students got a real perspective on my son’s disease when they used wheelchairs to navigate an obstacle course to better understand what it was like to not be able to walk. The Center for Disability Leadership in Virginia has a document you can download that includes disability awareness activities for students.
• Get involved with an anti-bullying campaign. Unfortunately, children with chronic diseases can make themselves targets of bullying. Have your child fight back by starting or getting involved with an anti-bullying school campaign. Many schools are taking a zero-tolerance stance on bullying and would welcome a program. StopBullying.gov provides information on how kids can prevent or stop bullying. Being a part of the solution can help kids feel better about the situation.
By giving kids the tools to become advocates for themselves, they will feel more empowered and feel more control over certain aspects of their disease. It will also allow Super Mom and Super Dad to take a day off every now and then.
Jaime Moy is a National Psoriasis Foundation community ambassador in Waterford, MI. She and her son have psoriatic arthritis, an inflammatory type of arthritis that affects the joints and tendons and occurs in up to 30 percent of people with psoriasis.