Having a bleeding disorder can be frightening. In the beginning, it is normal to think about the what-ifs when you’re unsure of what to expect. “What if I don’t know the signs and symptoms of a bleed? What if I never learn how to infuse my child? What if I cannot handle this disorder?” The list goes on. Over time caregivers learn how to integrate a bleeding disorder into their lives, but sometimes it’s difficult to convince others that bleeding disorders are anything less than scary.
In the school setting, it is imperative that the school nurse is on board as a partner in the care of your child with a bleeding disorder. It’s not common that a nurse will have experience with hemophilia or Von Willebrand disease. If the caregiver delivers a well-crafted message at the beginning of the relationship, the school nurse will be amenable to learning all that is needed to care for the student.
The first message I give a school nurse goes something like this: “If something happens, I will not be quick to blame. I will ask details about the incident so that I know how to treat my son and can communicate well with the treatment center. I know that the teacher has more than one student to watch and I understand that accidents happen.” Some may be thinking, “But if the teacher was out of the room and my kid got hurt …” Yes, there are times when the adult in charge may be at fault, but in my experience as a public school teacher and parent, these instances of neglect are rare. My message to the school is that I am on their side — the side that cares for and educates my son. We are in this together.
I want my son to be safe at school, but the truth is that as children get older, the adults on duty may not see what happens in the hallways and between classes. Accidents happen. I don’t want to be viewed as the enemy by my son’s school. I want to help relieve the fear that the school’s personnel may feel.
During the first few weeks of school, I encourage the school nurse to call me if she has any doubts. This is especially helpful when children are in elementary school. If my son has an incident that seems minor, and the nurse is unsure, I would rather they call me to tell me what has happened so that I can determine if I need to go to the school. I have a job that allows me the flexibility to receive calls and go to the school at a moment’s notice. I realize others may not be able to take personal calls during the day, so this is simply a suggestion.
Helping school personnel develop a sense of teamwork with the caregiver is critical in the care of children with bleeding disorders. When caregivers work to ensure they are working with and not against the school, the best interests of the child wins every time.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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