Stephanie Shropshire got a call from school that every parent dreads. It was the substitute nurse saying that her son hit his head on a metal pole on the playground. Because Shropshire had told the school about Lev’s von Willebrand disease at the beginning of the year, the nurse knew that he probably needed to go to the hospital right away. Shropshire was able to pick him up and take him for factor infusions and imaging scans.
Lev, 3, is the youngest of Shropshire’s children, all three of whom have a bleeding disorder, so she makes sure that the school nurse, teachers, and other staff members know everything they need to and that her kids are well supported at school.
Here, Shropshire and Delores Johnson-Huber, who has two children with bleeding disorders, share their best advice for parents as their kids go back to school.
Meet with the school to explain the bleeding disorder.
School officials might not have experience with bleeding disorders or know what to do unless you tell them.
“Have a meeting with the school nurse before school starts. Make sure it’s all taken care of before something happens,” Shropshire says.
Ideally, the nurse will inform the teachers, but Shropshire takes the extra step of meeting with them herself. When her daughter, 6-year-old Sammi, started school, Shropshire brought a document from their hemophilia treatment center that outlined her child’s severe VWD type 1.
“Especially when they’re younger, the homeroom teacher needs to know what the child’s diagnosis is,” she explains. “I’m a teacher, and I know a lot of parents are wary about telling teachers what the kid’s diagnosis is. With us, we’re very much like, ‘These are the issues that she typically has, and this is what we need to do when she has them.’”
Part of the education is helping people at the school to understand what is an emergency and what is not.
“We did a PowerPoint for the coordinator of the early childhood program,” Shropshire says. “Kids fall all the time, and it doesn’t mean that Mom needs a phone call because she fell and scraped her leg.”
At her family’s previous school, Johnson-Huber would get calls after the slightest incident involving her older son, Ethan, now 17, who has severe hemophilia A. “If he bumped his knee tripping over a shoestring, they would call me to come get him. I had to put my foot down. ‘I’m at work. Don’t call me unless he’s bleeding, period.’ He’s not going to die from a paper cut or tripping over shoestrings,” she says.
“On the other hand, there would be days when something would happen that needed immediate attention, and it would turn into a bigger bleed, but no one would call,” she continues. “Clothes would come home stained in blood. It was just basic communication I had to fight for.”
In collaboration with her hemophilia treatment center, Johnson-Huber arranges to have social workers offer information to teachers and others who might interact with her son during the school day.
Similarly, Shropshire reached out to her HTC nurse, who trained the school’s nurse on von Willebrand disease, including nosebleeds and how to treat them.
Establish a 504 plan if accommodations are needed.
A 504 plan, which falls under Section 504 of the Rehabilitation Act, protects people from discrimination because of a disability, including bleeding disorders. While an individualized education program (IEP) includes special education instruction, a 504 plan does not change what children are taught in school but instead provides accommodations to assist with learning.
Start by asking the school to evaluate your child for a 504 plan. Schools usually have a process in place for creating these plans; yours may even have a dedicated team, including the principal, nurse, teachers, and a psychologist. The 504 team will look at your student’s medical needs and determine what accommodations will help remove any barriers to learning.
Shropshire’s daughter, for example, has a 504 plan to help reduce pain caused by sitting on the floor.
“We noticed that as she was on the carpet at school, she would start acting out, and it became pretty apparent that every time she was running around the classroom, it was because she didn’t want to sit,” Shropshire says. “And so, we got some modifications through our hemophilia treatment center that said if she’s not comfortable sitting crisscross, then let her sit mermaid. It’s as simple as that.”
The plan can also include allowances to visit the nurse’s office.
“These are Sammi’s accommodations: She gets preferential seating if she needs it. If she gets a nosebleed or a cut, she goes straight to the nurse,” Shropshire says. “The nurse assesses it and says, ‘I can deal with this on my own. We’ll just let Mom know.’ And 99% of the time, that’s the case.”
A 504 plan requires periodic reevaluation. Yearly is a good cadence for schools, but it can be done more often as necessary.
Hemophilia treatment centers are available to help with the wording of 504 plans, which Johnson-Huber says she takes advantage of.
Provide specialized equipment.
First on the equipment list is a medical ID bracelet, which gives school personnel and emergency responders lifesaving information about your child’s bleeding disorder and how to treat it.
Next is personal protective equipment for the playground. Johnson-Huber would send Ethan to school with knee pads, elbow pads, wrist guards, and a helmet for when he played on hard courts and concrete floors so that he could join the other students in playtime.
If the activity was too risky and he couldn’t participate, Johnson-Huber says, “he could be a scorekeeper or he could help the teacher set up — any way to be involved.”
At Ethan’s previous school, she was successful in getting dodgeballs replaced with Gator Skin balls, which are designed as sting-free alternatives to traditional rubber balls, but she had to buy them. “I did it just because I wanted him to be included,” she says.
Advocate for your child.
Johnson-Huber, who says she spent many years at a school district that “really failed” her son Ethan, recommends that you not be afraid to get involved with the school to ensure equitable treatment of your child with a bleeding disorder.
“Fight for your IEPs and your 504s,” she says. “Use your caseworkers. Make sure that your kids are being advocated for. Go with your gut. Don’t quit.”
For support, Johnson-Huber relies on other moms in her National Bleeding Disorders Foundation chapter. “We’ve really leaned on each other, and we talk to each other about different problems,” she says. “We’re trying to get together as a little group and go and advocate to these schools ourselves, because sometimes it’s hard.”
In addition to your hemophilia treatment center, your state may have a patient advocacy group to help you, such as the Parent Education & Advocacy Leadership (PEAL) Center in Pennsylvania, where Shropshire and Johnson-Huber live.
Shropshire acknowledges that bleeding disorders are a lifelong condition, and it can be stressful advocating for a child at school. “But in the end,” she says, “I know that if I do all these things ahead of time, my kid is taken care of no matter what. I don’t have to worry.”