Managing School and a Bleeding Disorder

Parents, caregivers, teachers and staff can ensure children get the support they need
Author: Denise Schipani

Sending a child off to school for the first time is an emotional moment for any parent—and anxieties are likely to ramp up considerably for parents of children with bleeding disorders, for whom those parental first-day-of-school jitters may not ever fully dissipate.

“The unknown is what causes that anxiety,” says Maria Santaella, RN-BC, MSN, nurse coordinator in the department of pediatrics division of hematology and oncology at the University of Miami Hemophilia Treatment Center. “‘What happens if he falls and no one recognizes the signs of a bleed?’ ‘What if they don’t watch him the way I do?’” Another element of anxiety for parents of kids entering kindergarten or first grade is that there are fewer adults compared with the student-teacher ratio of most preschools and day care centers.

Every year, every change of school means new possibilities for worry: heavy backpacks and busy hallways; changing classes and more chaotic gym periods; becoming a preteen, and then a teen, with all that entails: “The longer your child goes to school, the more his world expands,” says Santaella—and the more you should review your plan and update teachers, administrators and nursing staff.

Being prepared, and preparing your child’s school, means fewer worries about his or her health. And when you’re confident about your child’s safety at school, he or she is much more likely to feel confident, too.

 

SMART SCHOOL STRATEGIES

The best way to head off problems is to prepare. The following tips can help:

Ask the pros for help. If you’re not confident you can lead a school meeting yourself, reach out to your hemophilia treatment center (HTC), says Javey Dallas, MSW, LCSW, a social worker at the Oklahoma Center for Bleeding and Clotting Disorders, in Oklahoma City. “The HTC should have a social worker or nurse who can assist with what sort of accommodations may be available,” says Dallas.

Be your child’s own best advocate. While an expert like a nurse can go on school visits with you and teach the staff about your child’s bleeding disorder, these professionals should work with you to determine your child’s specific needs. “It’s a partnership between the parent and the school, and our role as nurses is to help with that. We work through the parent to figure out what the child needs and what the school requires,” says Santaella.

 

CREATING A PLAN

Many children with bleeding disorders have either an Individualized Education Program (IEP)—a formalized agreement between the parent and the school regarding the child’s special educational needs—or a 504 plan, another formalized agreement, mostly about special accommodations a child requires, such as extra time for testing or the ability to leave class without permission for medical reasons.

But even if your child doesn’t have an IEP or a 504 plan, it’s worth creating a health plan of your own to share with school, both to outline important information and to be proactive in case of emergencies.

Your plan should include vital information such as:

  • Emergency phone numbers in order of importance
  • Where your child’s medications are stored
  • How to administer medication if necessary (or if you must be called in to administer factor in cases where that’s your preference or there’s no qualified person on school staff to do so, or if the law in your state doesn’t allow school nurses to administer factor)
  • What to do in case of injury before help arrives

You can download a sample individualized health plan at the National Hemophilia Foundation’s Steps for Living website.

 

MIDDLE AND HIGH SCHOOL ISSUES

As your kid ages through the school system, the issues you both face will change. But by being prepared and addressing challenges head on, you and your child can successfully cope with whatever might come your way. Here’s what you need to know as your child gets older:

Your child has more control. Taking on a greater role for self-care may feel scary for both parent and child, says Dallas, but it’s necessary as the child grows.

The school still needs to be updated. Even if your child is mature enough to handle many aspects of navigating school solo, keep the lines of communication with teachers and administrators open. “I recommend parents meet with staff every year,” says Dallas. “Staff changes over, and accommodations need updating.” As your child ages, his or her IEP or 504 should change, too.

Whether you’re the parent of a preschooler or a high schooler, if he or she has a bleeding disorder, remember that knowledge is power, says Dallas. “A lot of times we—both parents and schools and the community at large—are fearful of things we don’t understand.” The most basic misunderstanding is that children with bleeding disorders are essentially different—but they’re not. “A child with a bleeding disorder doesn’t have to be isolated; they need to be incorporated into the regular scheme of things,” says Dallas.

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