We recently moved and my 8-year-old son with severe hemophilia has made a new friend who has invited him over to a sleepover. I’d like to explain to the other boy’s parents about my son’s hemophilia, but I don’t want to freak them out either. How should I start that conversation?
New to the Neighborhood
Dear New to the Neighborhood,
Making new friends can be a challenge, but it’s great to hear that your son has found a pal! Choosing with whom to disclose your child’s bleeding disorder is a personal decision that you and your son should discuss. If, after opening a dialogue, you are both ready to share his diagnosis, there are many ways to communicate this with his friend’s guardians.
One way advocate about your son’s hemophilia is to invite his friend and his friend’s parents to a playdate before the sleepover. While the boys play, explain to the other parents about your son’s disorder.
To facilitate this conversation, use HFA’s My Bleeding Disorder worksheet. This customizable document provides the basics about bleeding disorders and is tailored to your child’s care.
It may also help the other parents to see your son play with their child. By showing just how active he can be while you explain all of this, it can help these parents — who might be overwhelmed with this information — see just how “normal” your son can be.
If they still are comfortable hosting your son, it will be necessary to send him with two overnight bags. One standard — sleeping bag, toothbrush, pajamas, and more — and a medical kit to help with his care. What’s in this medical kit will vary based on your and you son’s comfort level, as well as whether or not he is self-infusing. Some parents choose to pack a dose of factor no matter what; other forego the dose if they’ll be only a few miles away. It might not be a bad idea, though, to include a copy of a medical consent form, just in case another adult has to seek medical care for your child.
Have a question? Email us. Your name will be changed in the response.
HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.