Infusing Love: Standing Up (In a Wheelchair) to Bullying

Infusing Love: A Mom's View
Thomas’s first day of third grade was spent in a wheelchair, thanks to an ankle bleed. It certainly wasn’t the first time he had to attend school in the ‘chair,’ but I hated that it had to fall on the first day of school. We’ve always been very open about hemophilia – in first grade Thomas even did a show and tell infusion for his class.  I was just worried that not having the opportunity to do a little education with his classmates, the wheelchair may lead to Thomas being bullied by other kids.
The ankle bleed turned out to be particularly nasty and Thomas had to stay in the chair for a few weeks with a stiff brace on from the tip of his toes to his knee. He decided that he didn’t want to teach his class about hemophilia this time, but asked that his HTC nurse and I do it. So Nurse Sue and I took in some fun games and slides, and even a Cryo-Cuff for Thomas’s classmates to experience.  The first two weeks of school went by without incident, but Thomas came out of school upset one afternoon.
“Mommy. Some kid is throwing a football at me at recess,” Thomas said.
“Was he playing catch with you or he was throwing it AT you?” I tried to clarify.
“No, he was aiming for my cast.  I heard him say to his friends he was trying to hit it. He’s been doing it for a few days.”
Had we not already pulled out of the school parking lot, I would have marched back into the building.  “Who is this kid?” I asked, gripping the steering wheel tightly.Thomas Wilkes
“I don’t know. He’s in another class.”
This frustrated me even more, because I knew I needed a name to get this bully stopped.  “Thomas, you have to find out his name.  I’ll talk to your teacher, but she’s going to need to know exactly who it is.”
When we got home, I immediately emailed his teacher and the teacher assistants. They said they hadn’t seen anything themselves, but promised to keep a close eye on things and to please let them know if I found out the kid’s name and to make sure Thomas knew he could come get them anytime.
It took every ounce of self control I had the next day to not sit in my mini-van during recess with binoculars to watch Thomas.  I desperately wanted to simultaneously protect my kid and knock the teeth out of this other kid, but knew I had to let this work itself out. Thomas came out that afternoon and I asked if it had happened again.  “No, not today,” he told me.
“Did you find out the kid’s name?”
“No, but I know who’s class he is in.”  At least we were making progress to identify this bully.
The following afternoon I didn’t even have to ask. Thomas came wheeling out of school, “Mommy! I found out his name!”
“Did you tell your teacher?” I asked, relieved that this hadn’t lasted too long.
“No. He didn’t bother me today.”
I had a meeting the next morning at school, so I held off sending an email that evening.  When I walked into school, I spoke to Thomas’s teacher. She was incensed, “I’ll talk to this kid immediately.” The principal saw me a few minutes later and asked how Thomas’s bleed was and I related what had been happening. She said, “Don’t worry, I’ll take care of it.”
I don’t know what punishment the bully ever received, but he never spoke to or bothered Thomas again. It was a quick end to an incredibly infuriating situation.  I was grateful that Thomas had not been physically hurt and that he reported the bullying to me so quickly. I was exceptionally satisfied with the school’s response.
Other families in our community have not been so lucky and have stories of bullying that leave me angry and saddened.  They often don’t know where to turn for help and are stalemated into a course of inaction, playing a game of chance every morning as they send their child off to school.
What Can You Do To Prevent & Stop Bullying
Students with special needs, such as hemophilia and other bleeding disorders, are at a higher risk of being bullied.  But how exactly is bullying defined?
Mom's defines bullying as “unwanted, aggressive behavior among school aged children. It involves a real or perceived power imbalance and the behavior is repeated, or has the potential to be repeated, over time.” The key takeaways are about the power a bully has (or he/she thinks they have over a victim or that the victim feels the bully has over them) and that it is a repeated (or could be repeated) behavior.
Thomas’s experience was a clear case of bullying: the bully thought he was “stronger” than the kid in the wheelchair and it had happened repeatedly.  All the challenges our little bleeders face put them at risk for being bullied. While I would argue that those challenges ultimately benefit our children by teaching them resiliency and compassion, it can be brutally difficult during the school years.   Victims of bullying have increased incidences of depression, health complaints, and decreased academic progress and school attendance.
If your child with a bleeding disorder is a victim of bullying, he or she can be protected by his/her 504 plan.  Bullying behavior is a “disability harassment” and is prohibited under a 504 plan.  With a plan in place, you have a clear case where the school must investigate and promptly respond.  In these cases, bullying can easily become a crime, so schools should be very motivated to respond to any reports of bullying against a disabled child.  If they do not take appropriate steps, they could be violating a number of federal, state, and local laws.  If you feel this is the case, you should contact the U.S. Department of Education Office of Special Education Programs for assistance.  The Department of Education has a webpage dedicated specifically to needs of special education students:
Talk to your children about bullying before it happens. Clearly discuss what bullying is and isn’t with your children from the time they enter kindergarten and all the way throughout high school and tell them to report if they’re being bullied as soon as it happens.  As I found, an open and honest conversation is key.
Check out HFA’s new “Bullying Prevention Toolkit” here!
Sonji lives with her husband, Nathan, and three children Nora (16), Thomas, (14), & Natalie (12) 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.