By Lisa Moreno-Dickinson
Are you contributing to the confusion? Making sure rare disease is understood by your child’s classmates can help them adjust to differences, make friends, and prevent bullying.
Here it comes! That time when everyone is getting ready for school, buying clothes and supplies for their new school year. Many are nervous, anxious to make new friends and see their old ones. While those might be the main concerns for most children, students with rare diseases (and their parents) have a whole new level of fears.
Will other children treat them differently? Will they be scared to talk to them? Will their teachers, principals and school nurse all work together to coordinate their care and education? Will everyone understand the disease? Will they be uninterested in learning about it?
IEPS, 504 Plans, meetings with the clinic, conferences with faculty—there still isn’t that guarantee that those first few days in class will go off flawlessly.
504 Plans and Individualize Education Plans (IEPs) need to be organized between you, your child’s school, a medical professional (with notes on their diagnosis) and sometimes a social worker or educational specialist.
Most schools now are very aware and proactive against bullying. You still may want to confirm with teachers that if there is any bullying towards your child, you will be alerted of it. You can also go to the Facebook page, “StopRareDiseaseBullyingNow” to ask questions and hear about other family’s experiences in this area.
I have had some good experiences reaching out to the other children in some sons’ class to circumvent any bullying. We did this by helping his classmates feel included, to give them answers (so they would not make-up their own) and so that, ultimately, they could be treated as normally as possible.
Each year for my son, Brody (Pre-school and K), I gave little gifts with a card to each of his new classmates. Each card (attached to a ruler) told why he wore a mask “My name is Brody. I wear a mask because I have a very rare and genetic Auto-Inflammatory Disease. So the mask protects me but don’t worry the only thing you can catch from me is my smile! No matter how you measure it, we are all the same. Love, Brody.”
I included our website so, if the parents had questions they could better understand. The parents also can explain it to their child since they know them better and their best way to process this knowledge. I find that explaining this at the beginning of school has deterred from finger pointing or others being afraid.
Make sure your child is comfortable and understand their rights, their disease. Give them the power and control.
With my oldest, who was homebound last year, I went into his class and explained his disease. I really appreciated that the teacher welcomed this and wanted to help –which is KEY to having the team on board. The children understood better and were less scared and judgmental towards my son. He actually felt a big burden off his shoulders because he didn’t have to mask his pains anymore.
But the best way to stop judgment and bullying is always awareness. Understanding and education are the keys to putting the stigma of disease further and further away.