Mary Anne Schall, Regional Coordinator

 

This article is adapted with permission from the CDC workbook, Basic Concepts of Hemophilia.
This workbook is intended to help families and young adults learn the fundamentals of hemophilia and serve as a catalyst for dialogue with treatment center staff. 

It’s time to put away the shorts and swim suits and to start thinking about school.  The start of school can be an exciting time for your child and potentially a nerve-racking time for you.  Like most experiences, things will be easier if you prepare in advance.  Some specific activities you may wish to consider that can help smooth the way include:

• Meet your child’s teachers, gym coach, principal, and school nurse.

• Arrange to get brochures about hemophilia from your HTC to share with school staff.

• Arrange with your HTC nurse or social worker for a school in-service.

• Give teachers your phone numbers and list an emergency contact.

• Carry a cell phone so teachers can reach you at all times, and/or provide the phone number of your HTC in case they cannot reach you. 

• List the details of what your child can and cannot do.  If your child cannot participate in a particular activity, help the teacher find a substitute activity so the child can still feel part of the class.

• Check in with the teachers from time to time for a refresher and to answer questions about your child’s bleeding disorder.

• Stress normalcy.  Your child should never be referred to as a hemophiliac, as different, as special.

• Work with your child’s teacher so that they become aware of responses that should be avoided:

  • Overprotection (excluding your child from activities);

  • Singling them out (announcing that they have a bleeding disorder);

  • Ignoring the problem (not believing the child when they say it hurts); overreacting (gasping, saying “Poor Joey!” or showing favoritism).

• Let your child decide if they what to share that they have hemophilia with their friends.

• Remember that teachers are extremely busy and that they are entrusted with children with a variety of issues.  Be patient and sympathetic. 

• Get involved.  Consider volunteering in class or joining the parent-teacher organization.  The more the teachers see you- and how comfortable and competent you are - the more comfortable they will be with your child.

Valuable Resources

 

Your treatment center staff is an important resource in dealing with school issues and can assist with approaches, suggestions, and solutions.  Additionally, as more and more schools are becoming computer and Internet friendly, creative and interested teachers are taking it upon themselves to use the power of the computer in their work.   A teacher who is comfortable using email, etc. will be a valuable resource for communicating about your child and their needs. 

 

School is an important developmental milestone for you and your child.  Good communication within the family and with your school and treatment center will help you create a cohesive team to support your child throughout this exciting adventure.