Like all parents, I spend a few hours each August filling out back to school paperwork. It’s a tedious task. Once I finish all the required forms: emergency contact, acceptable technology use, and parent-teacher organization forms, I begin tackling the hemophilia forms. I update Thomas’s Individual Health Plan (IHP), and his “My Bleeding Disorder” document for his classroom teachers, and email the school principal to ask for a meeting with any new staff or teachers Thomas will have. I lead an in-service meeting with the new staff and use HFA’s Customizable Powerpoint to educate about Thomas’s bleeding disorder. His annual Individual Education Plan (IEP) review comes later in the fall, which works out well, as it remains in effect from the past school year while we sort out any new or changing concerns in the first few months of school.
It’s time-consuming to manage all this, but necessary, and gives me a sense of comfort that I’ve done all I can do to inform the adults who will spend the next nine months with him. Since starting pre-school nine years ago, this has become an annual tradition each year and is relatively routine now.
As I wrapped up the last of the hemophilia back to school chores this year, I asked Thomas how school was different for someone with a bleeding disorder. He told me, “It’s different than ‘normal’ people. People treat you differently – they are calmer around you. I wish I could just tell the teachers and other kids, ‘You don’t have to treat me differently. I’m just as tough as everyone else.’”
I was proud and frustrated in that moment – had we not done everything we possibly could do to make school a better experience for him? One of my biggest fears when he first started school was how other kids would treat him – would he be bullied? Would they make fun of him? Rationally, I know that we’ve gone above and beyond to raise awareness amongst the school staff and students. I reminded myself of the time in first grade when Thomas did a show and tell infusion for his class. I was so proud of him that day. At seven years old, he had stood in front of his peers and taught them about hemophilia. I dug out his script from that day to remind myself of the work we’ve done in the school setting:
Today my show and tell is about hemophilia. I have hemophilia and would like to explain more about it to you.The 3 things I would like to teach you are:
1. What is hemophilia?
2. What does having hemophilia mean?
3. How do you fix it? Is there medicine?
I was born with hemophilia. Hemophilia means your blood doesn’t work right. Your blood is missing a clotting factor. So when you get hurt, or sometimes for no reason at all, you get really bad bumps and bruises. Because I have hemophilia, I have to be careful about making safe choices. I wear a helmet on the playground to keep my head safe, but I can do most everything other kids do. Sometimes I get bad bleeds. Bleeds can happen even on the inside of my body like in my ankle or knee. Those hurt really bad and sometimes I have use to wheelchair until I’m able to walk again. I’ll have hemophilia for my whole life, but my parents and I trick my body everyday with medicine (called factor) so that my blood thinks it works right. I have to get needle pokes either in my arm or port. We infuse the missing factor to trick my body. Let me show you how I mix my medicine and infuse my factor every morning before school. First I have to wash my hands.
(Here’s where he mixed his factor and infused into his already accessed port. As soon as he finished up a classmate passed out.)
Thank you for listening and does anyone have any questions or comments.
Thomas’ infusion at school that day made an impression on the other students and the teacher (or maybe it was the other student’s needle aversion) – regardless, people remembered that Thomas has hemophilia. In third grade, he wasn’t as keen to do another infusion for his classmates, but his HTC nurse came to his class and gave an explanation (no fainting classmates that year – just one pukey kid.) At the request of the teachers, I did a brief, kid-friendly explanation of bleeding disorders at the school health fair one year (everyone survived that presentation intact). But as Thomas enters 7th grade this year, he doesn’t want to bring additional attention to himself in the form of a presentation to his peers and I can respect that. “Most of them already know about hemophilia. And besides, they know something’s up because I have to use the wheelchair sometimes,” he reasons.
He’s right. Over the last eight years at his current school we’ve proactively taught the school community about hemophilia and how that impacts Thomas, which has led to the entire school community supporting him through thick and thin. Sure, there have been bumps in the road, but overall, his school experience to date has been very positive. The time spent filling out forms and doing hemophilia 101 with everyone has been time well spent.
Sonji lives with her husband, Nathan, and three children Nora (13), Thomas, (12), & Natalie (9) in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.