You know that your child’s school needs to be informed about his or her bleeding disorder. But do you know what steps to take, what information to provide, and what the school will do in an emergency?
This protocol is called a “care plan,” and it’s important to establish one for your child far before the first day of school.
Your care plan should include the names and contact information of all the people in charge of your child’s care at school — for example, his or her primary classroom teacher; the school nurse; the physical education teacher; and a representative from the principal’s office or administration.
Start education early
When we say education, we don’t mean your child’s classes. We’re talking about educating school personnel about your child’s bleeding disorder.
The earlier you can set up a meeting with school staffers, the better. Try scheduling for three to four weeks before school begins, so you’re not competing with educators’ packed schedules in the week immediately before, or after school starts.
School personnel who have never dealt with bleeding disorders before may be scared or unsure. This is why you’ll need to be prepared to educate them.
Be prepared
Before your meeting, put together and print handouts with the following information:
- Bleeding disorder basics, including how to recognize a bleed
- Emergency contact numbers
- Information on the severity of your child’s bleeding disorder. This includes any special precautions for his or her port or inhibitor, and whether or not your child is on prophylaxis
- What medications to avoid giving your child
- Sports and activities in which your child can safely participate
- Emergency protocol
Take the time to go through each of these items with staff members, answering their questions.
The Hemophilia Federation also offers a helpful Back-to-School toolkit containing downloadable handouts and presentations to help you put together the necessary information.
Establish an emergency protocol
What should the school do if your child falls down and scrapes his knee on the playground? What about if he sustains an injury to the neck, head, or abdomen?
Parents of kids with bleeding disorders know that the first example above usually constitutes a minor injury, as it would for a child without a bleeding disorder. The second situation is an emergency, requiring an immediate 911 call.
Educators need to know the situations in which they should call an ambulance for your child — and children need to know that they must speak up for themselves in an emergency.
Learn your rights
Schools are required, under two federal laws, to accommodate children with special needs.
If school personnel refuse to allow your child to self-infuse at school, and he or she is trained to self-infuse, you can request a hearing. It may also help to ask your child’s hematologist, or your local HTC, to step in.
Remember that your child’s privacy is also protected under the law. Ask school personnel to avoid discussing your child’s health needs, except as necessary and in private.
We hope this helps! Remember that you can always go to your child’s doctor and your local Hemophilia Treatment Center for more resources and support.