From the Archives: Spring 2008 Lupus Now magazine
Class Act: Teens with lupus share their strategies for making up missed classes, communicating with teachers, and getting the support they need.
by Sacha Cohen
Doing well in school means paying attention in class, doing your homework, and participating in extracurricular activities. But what if you can’t make it to school because of illness? Or perhaps you have to go home early because you’re not feeling well. For this issue’s Teen Talk column, we asked three teenagers, a high school principal, and a parent of a teen with lupus to give us tips and strategies that help when a student misses classes due to illness. We talked to Aiden Gallagher, 14, Katie Podniestrzanski, 18, and Alex Tsimoyianis, 19, who all have lupus.
What’s it been like to have lupus while going to school?
Aiden: It’s definitely very difficult. Because my teachers can’t see everything that’s going on with me, it can be hard to get through to them that something is wrong. It’s also difficult to make up work. I was just out for four weeks. Luckily, I have great teachers this year.
Alex: I went to a very small high school that was very nurturing. Almost all my teachers there had known me for a long time. I was diagnosed with lupus in my junior year of high school, and I was out of school for a month. A memo went out to all my teachers to prepare a list of missed assignments telling me what to read and deal with. They were very understanding. One time, I wasn’t feeling well during the day and I couldn’t write an essay, and the teacher let me go home and told me I could do it later or the next day. Now that I’m a sophomore in college, I’ve found that [making up missed classes or assignments] really depends on the helpfulness of the professor.
Katie: On the days that I feel bad, I end up staying home from school and miss the class lecture, so I have to figure out the work on my own. When I have a hard time with the make-up work, I stay after school or stay at school and miss a field trip to get help making up my work. Some of the field trips are outside, so I am better off staying at school, since I can’t spend a lot of time in the sun. I do miss spending time with my friends, but I take the opportunity to catch up on my work.
Have your teachers been supportive?
Aiden: The most recent time I was out for a month, my teachers sent tutors to my house. That was the most helpful thing that’s happened over the past four years. It’s less stressful for me and really makes a difference.
Alex: I had two teachers visit me in the hospital when I was first diagnosed. I also got phone calls in the hospital from the class president of my school, the princi-pal, and the school nurse. One of the teachers even came to all of my chemo-therapy sessions and brought Scrabble. The Scrabble tradition [with him] has continued even after high school.
Katie: On the days that I go to school and start feeling bad, my teachers send me home with work I can finish there. The principal and teachers all spend one-on-one time with me. My principal has asked Vocational Rehab to come to my school to help me make the transition to working or going to college next year.
How do your friends help out?
Aiden: I get the screen names of a few friends in each of my classes. That way, I can talk to them to ask what I’ve missed in class that day or week. I just IM [instant message] them that night so I can study what I’ve missed.
Alex: In high school, a few of my friends were in the same classes and they would tell me what I missed. They checked up on me, asked me how I was feeling. They were mostly concerned about my health.
Katie: My friends remind me to take my medicine when I have to take it at a specific time. We study together, and they help me with the subjects I have trouble with and I help them on the subjects I am better at. When I have been in the hospital or home sick, they call to cheer me up and check on me. They visit if they can. Sometimes, if I am out for a while, someone will bring me my work, books, or whatever I need. They bring me food, and we play games or watch movies.
Any other tips or advice?
Alex: The main priority is to concentrate on your health. You will especially need extra rest in the beginning. Don’t overextend yourself, because the stress can make lupus worse. Your school nurse needs to know what’s going on. Also, make sure you have a quiet place to relax at school if you need to, like a guid-ance counselor’s office.
Aiden: Never just say, “It’s only one day out of school.” All the days you miss really add up. Tell your teachers ahead of schedule if you know you’re going to be absent. Also, ask if you can stay after class to catch up on what you have missed.
Advice for Parents
Aiden Gallagher’s mom, Elizabeth, offers some tips for parents to help make sure their kids don’t fall behind on education.
- At the beginning of each school year, meet with each of your child’s teachers and explain what lupus is and how it has affected your child. "Communication with Aiden’s counselor and teachers is such a key point in helping her achieve her academic goals," explains Elizabeth. "It is very difficult for a teacher to teach a child who is frequently absent. If you develop a good rapport with your child’s educators and really keep them updated with what is going on, you will, hope-fully, have a less stressful time with your child’s education."
- Work with your child’s teachers to create an individualized education plan (IEP) and a 504 plan. An IEP is a written plan for a child with a disability that is devel-oped and implemented according to federal and state regulations. Section 504 refers to the Civil Rights section of the Rehabilitation Act of 1973. It is a civil rights law that prohibits discrimination against people with disabilities. Since lupus can affect cognition, this is very important.
- Speak with your child’s guidance counselor at the end of each school year to go over what worked and what didn’t work in the previous year. That can include talking about teachers, classes, and schedules.
- Finally, teach your child to advocate for himself or herself. "They will need this ability for the rest of their lives," says Elizabeth.
A Principal’s Perspective
We spoke with Patricia Lambert, the principal of Katie Podniestrzanski’s school, to find out how school officials can make life a little easier for students who have lupus. Here’s what she had to say.
"I’ve known Katie for about six years. She had to stay home for a while because of her lupus, but then she was able to come back, and she will graduate this year.
"Our school, Center Academy in Pinellas Park, FL, is kind of unique. It was founded for students who have learning disabilities, but we take kids with other learning issues, such as health problems like Katie’s lupus. At the beginning of each grading period, we give the students an academic calendar that has all their assignments on it. The students know, if they are absent, what they need to do ahead of time or what they will need to make up. Katie is very conscientious about doing her work, but the fatigue factor makes it really difficult sometimes.
"At our school, the school day is 8:30 a.m. to 2:15 p.m. From 2:15 to 2:45 is additional help time. Katie comes in if she needs extra help. Even if she is too tired to go through an entire day, she’ll come in for part of the day. She has very supportive friends who take homework and books to her if she needs help.
"We’ve noticed that Katie really gets ill if she becomes stressed, and sometimes she doesn’t realize it. We look out for that and make sure things don’t pile up, and give her options to manage what she needs to do so it’s not overwhelming. She does the best she can, and we work with her on what she can do at any given time. She’s an absolute delight!"
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