Looking back, I can remember so clearly the times students, parents, and even teachers would single me out in school.
A parent once told me in the 4th grade I needed to run around the field and play with all the other kids when she saw I was instead sitting on a bench with a friend.
“But I have arthritis,” I told her.
“Honey, we all have a little bit of arthritis,” she said.
…Mind you she was fifty and I was ten.
“AWW! I wish I had arthritis too!” Kids would whine when they had to run the mile for P.E. while I sat on the bench waiting for gym class to be over.
The nun who taught religion classes in 7th and 8th grade never liked how much school I missed. She often made comments in front of class whenever I would come in to school late. “Nice of you to join us!” She’d announce sarcastically.
…I came in to school late every other Friday because I was in the hospital getting an infusion for five hours.
School and chronic illness was incredibly frustrating.
Balancing School and Chronic Illness
School and chronic pain can be a very tricky combination, no matter your age. My mom and I recently reflected on the combination of tackling school with a chronic illness from K-8 and what that experience was like as a family. Back then, there were certainly no blogs for moms of children who suffer from RA. There was no roadmap, no online community to ask advice from or share experiences with… So her and my dad did their best to make the appropriate accommodations necessary for me to have the most seamless school experience, but they went into it blindly. I’m hoping by sharing my experiences I can help other parents or kids in school along the way who are wondering: How do we do this?? Even though those years of school are far behind me, I certainly remember what worked and what didn’t, so hopefully I can lend a helping hand!
I have my parents to thank for paving the way and giving their best attempt at making my time in elementary/middle school as seamless as possible. Uneducated teachers and mean kids were out of their control, but they did their best to educate who I was surrounded with to limit any questions, remarks, and jabs that were thrown my way. My parents had to teach me how to advocate for myself from a very young age and I will share those tips here. I also have my own opinions on how I would tackle that time period again in my life if I had the chance.
~All of these opinions are my own and have no professional/medical advice or backing. Just personal experiences!!~
Accommodations to Consider:
Before getting into everything, my mom and I both stress that meeting with your child’s principal and teachers every single year before school starts is essential. New year means new teachers and just because your child’s fourth grade teacher was understanding doesn’t always mean that the fifth grade teacher will be the same. It is imperative that you leave no room for questions. Each year you need to lay down exactly what it is your child needs or what they’re going through. It’s easier to cut to the chase right off the bat than wait for a problem to arise in the classroom. If your child will be missing a lot of school — make this known. If your child may need extra time in between classes to walk across campus —make this known. If your child is experience pain or side effects — you guessed it, make it known!!
Private School vs Public School
I’ve been to both public and private school and personally, private schools were easier for me to navigate. Firstly, public school campuses are much larger which meant more walking. For a child with RA/chronic pain…a big campus wasn’t ideal for me. I also wasn’t a fan of how many students there were per grade. When I went to private school, my entire class consisted of around 32 kids, we were like a family and everyone knew each other. In public school, I hardly knew half of my class. Asking for help, or having special accommodations was less daunting when there were less students because it left little room for questions or opportunities to be bullied.
Private and public schools also handle accommodations very differently. Public schools often follow IEPs (Individualized Educational Program) or 504 plans, where as private schools may operate under differently depending on if they receive federal funding.
Physical Education / Gym Class
When I was in kindergarten until about 2nd grade I sat on the bleachers during P.E. while all the other kids ran a mile, played a game of kickball, etc. While I felt incredibly left out, it was also actually very distracting for my peers. Sitting on the sidelines wasn’t the ideal option. It drew a lot of attention to myself and ideally we figured out it was better to be removed from P.E. all together. I usually waited in the library or in a classroom with one of my teachers until P.E. was over and I could join the rest of my peers again. It’s really hard for young kids to understand that one day your child may be able to participate and the next day they cant. Chronic pain isn’t linear. Overall, in my opinion, it’s easier for all parties involved if the child is removed completely and joins the kids after gym class is over. Less conflict and your child won’t be forced to watch other kids do the things they wish they were able to do. Problem solved.
Making the Classroom more Comfortable
In fifth grade I remember a period of time where my hips were really bothering me. Sitting on the hard school chairs made the pain and stiffness a lot worse. We got clearance from the school that I could bring a soft pillow to sit on as well as a microwavable heating pack I could warm up for my joints. At that point, my peers were a little bit older and didn’t have as many questions. Everyone was a little more accepting and there were no issues with these requests.
In 7 and 8th grade my fingers and wrists were giving me trouble from all the writing we did in class. My parents were able to get approval of the use of a laptop in class instead of having to write notes with a pen or pencil. Getting a laptop granted me to A) not be in as much pain and B) allowed me to keep up with the rest of my class since it usually took me double the time to write notes down. I remember there being a little bit of jealousy in the classroom, kids thought it was really neat I got to bring a computer in to class but overall it wasn’t much of a problem.
The Battle With Teachers
I wish I could say there were never any trouble with teachers, but that is certainly not the case. Teachers while you would think would understand, and comply with whatever requests you/your child has…they don’t always. If I had a dollar for every time a teacher questioned me in class, complained about the amount of school I missed, or made an uneducated remark about my health…I’d be rich. Teachers also need to be educated on the needs of your child. I can’t even begin to count how many times my parents had to set up meetings with my school because of inappropriate questions or comments teachers would make towards me. It might be uncomfortable and it certainly isn’t easy, but by no way shape or form should your child be bullied…by a teacher. I’ve been there…it’s not fun!
The Traditional Classroom Setting
Independent study – isn’t for everyone but is a great option if your child is having a flare or cannot physically keep up with their peers. I transferred to independent study/homeschooling once in the third grade, and again my freshman year of high school when my arthritis was giving me a hard time. Personally I loved this sort of schooling because I could complete my assignments on my own time. Often times I completed all my work earlier and was finished by school by 12pm…so I had the whole rest of my day free!
Long story short, managing school and chronic illness wasn’t always a breeze, but there are plenty of ways to make the experience more pleasurable. Not everyone’s experience will be the same, thats why it’s imperative to make a game plan of how you’re going to tackle things like: flares, bullying, special accommodations, and so forth. Brush off the mean comments, they come from curiosity or simply being uneducated. Take what other people say with a grain of salt and know that you don’t owe ANYONE an explanation.
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