Show and Tell: Disclosing a Diagnosis in the School Setting

by: Cazandra Campos-MacDonald

School’s in session! And with the start of a new school year comes a question for the principal: “When can I meet my child’s teachers to discuss his hemophilia?”

I feel a sense of apprehension at the beginning of each school year, as I find my notes and instructions for emergency care, and determine the basic information I need to cover, including my youngest son’s connection to the disorder. Every piece of information I give the school paints a broader picture of my son’s struggles as he lives with hemophilia and an inhibitor. Disclosing information about hemophilia and inhibitors prepares my son’s principal, teachers, and caregivers in the event of a bleeding episode.

Disclosing your child’s bleeding disorder allows the educational team at the preschool, elementary, middle school, and high school levels the opportunity to provide the necessary support to empower your child’s learning and well-being.

When your child is a preschooler, you are responsible, as parent or guardian, for informing the school of his or her bleeding disorder. Meeting with the teacher and staff may be nerve-wracking, so reach out to your hemophilia treatment center (HTC) for guidance. The balance between educating and frightening a teacher can be tricky, but if you stay positive and approachable, and encourage questions, you can establish a healthy and open relationship.

Both of my sons attended daycare before entering elementary school. My husband and I provided in-service to the principal and teachers directly involved in our sons’ care. I emphasized how important it was for teachers and staff to call us after an injury occurred. I told them that I preferred they call me right away to report an incident, instead of waiting until the day was over. If they wanted either of us to come to school to check on our son, we would drop what we were doing and arrive as soon as possible. If an accident did happen, it usually wasn’t necessary to give my son an extra infusion or take him to the HTC. After a few weeks of reassuring visits to the school, or talking through the incident over the phone, the calls from the school clinic became fewer. We made the school staff comfortable, insisting that we would not place blame on anyone, but we were prepared to teach and treat as necessary.

As children get older, it’s important to allow them to become involved in their own care. In the early elementary years, you will continue to disclose and educate school staff about your child’s bleeding disorder. But when your child can verbalize his condition, it’s time to let him speak with adults and classmates about his bleeding disorder. This gives him the chance to take control. When my youngest son, Caeleb, was in first grade, I came to his classroom to read the story Joshua, Knight of the Red Snake, by Laureen A. Kelley. The story is about a preschooler with hemophilia. Many of the children had never heard of hemophilia, so reading about this young boy living with a bleeding disorder, and close to their age, made Caeleb’s condition more understandable. Joshua offers an excellent way to engage children and allow them to ask questions. Caeleb answered his classmates’ questions, and disclosing his hemophilia became a positive experience. During the year, when Caeleb missed school due to bleeds and often returned in a wheelchair, his friends were very empathetic and understood that he needed some extra help. Seeing these young children rally around their friend was an experience that any parent would be grateful for.

Once your child reaches middle school, your role may begin to change. I have made it a point to contact the nurse and principal at the beginning of each school year during middle school. Because my youngest son has a 504 Plan¹ in place, I meet annually to review changes that need to be made in Caeleb’s 504 Plan, and to discuss medical limitations related to hemophilia. I have also included Caeleb in these meetings starting in sixth grade. He doesn’t say much, but sometimes teachers will ask him questions, and this allows him to be actively involved in his care. I emphasize that disclosing his condition is up to Caeleb. It’s not the place of the teacher to tell any students about his hemophilia. Fortunately, Caeleb keeps the people closest to him in the loop, and watching him take over his hemophilia brings me joy.

In the high school years, your child will become more independent and play a much bigger role in disclosing to teachers and staff. With more freedom comes more control over the bleeding disorder. With my oldest son, Julian, I didn’t have annual meetings with the nurse at the high school level. Julian was never on a 504 Plan, so I had to make sure that his teachers received information about care. I made a phone call to the nurse and sent the updated medical information for his file. Julian went to the school clinic, and introduced himself to the nurse so they could put a name with a face. He even kept a dose of factor and ancillaries in the clinic in case of emergencies. Julian was also very good at keeping his close circle of friends in the know about his hemophilia.

At the preschool, elementary, and secondary levels of education, disclosing pertinent medical information to the team involved in your child’s care is crucial for his education and security. Disclosing information about a bleeding disorder helps those in charge become advocates for our children’s safety and welfare. Modeling how we disclose hemophilia to educators also gives our children the tools they need as they grow into young adulthood. I hope that as my boys grow older, the importance of sharing needed information will transfer into their adult lives. As parents or caregivers of children with a bleeding disorder, we do the best we can and hope that our examples positively influence their lives.

1. Section 504 of the Rehabilitation Act of 1973 (PL 93-112) is a civil rights law prohibiting discrimination against people with disabilities in any program or activity receiving or benefiting from federal financial assistance.

Source: LA Kelley Communications, Inc. www.kelleycom.com. Reprinted with permission.