It’s normal for anyone to be concerned at the thought of a child with hemophilia in the classroom, but it can especially worry the teacher, who bears responsibility for the students. Even if the teacher has some knowledge or experience, no two children with hemophilia are alike. Chances are, yours will be the first child with hemophilia that his teacher has met.
Many teachers have taught children with special needs, and they may be completely comfortable with your child. But for others, your first meeting may only temporarily relieve worries. A teacher could develop new concerns when left alone with your child for the day. Afraid of injuries, fearing the sight of blood, and anxious about being held responsible, a worried teacher might—without meaning to—show negative behaviors like overprotection, singling out, denial, and overreaction.
Fearing injuries, a teacher may want to exclude your child from some activities. Provide a list of activities that are safe for your child: using scissors, playing on the concrete or asphalt surface, using playground equipment, jumping rope, playing kickball and tag. If you want to forbid a specific activity—like hanging by his arms from the jungle gym after a forearm or shoulder bleed—write a note or email his classroom and physical education teachers. Ask them to find creative ways to include your child in an activity, even when a bleed sidelines him. He could be the assistant “coach” or scorekeeper, for example.
Your child’s teacher may accidentally single him out by announcing to the class that he has a blood disorder. The teacher may constantly remind other children not to hit your child. The phrase “Now, everyone except . . .” calls attention to your child. Most children dislike this kind of attention. Too much attention, especially when it sets a child apart from classmates, can produce resentment. Your child could be rejected or teased by classmates.
If your child must avoid a particular activity (with your approval), teachers should arrange a face-saving, tactful way to exclude him—one that doesn’t attack or shame him or draw attention to his disorder.
On most days, your child can participate in all activities and show no signs of bleeding. On other days, your child must be excused from certain activities when he is recovering from an injury or bleed. Outwardly, he appears fine, and his teacher may not recognize the need for rest. It’s even harder for the physical education teacher, who often hears a long list of illnesses and complaints from children who simply don’t want to run laps or climb ropes. Remember to stress that all teachers should trust your child’s judgment about a bleed or his recovery, with or without notes from home.3
Most teachers model emotionally mature behavior in the classroom, but some may gush “ooh” and “aah” over a child’s bruises and swellings, or exclaim, “Poor boy!” They may have good intentions, but this puts a spotlight on your child. He feels different from his classmates, and may develop negative feelings about hemophilia. Injuries and bleeds should be handled calmly and competently, with concern but with minimal fuss.
Teachers provide information about our children’s development. Teachers tell us how our children are adjusting to school. They can alert us to signs of depression, like withdrawal or slipping grades, which may indicate poor self-image or adjustment. They can tell us whether our children are interacting well with others or being bullied. They notice if our children are afraid to take risks.
Communication, trust, and respect between parent and teacher are key building blocks of a positive student–teacher relationship. Keep communication channels open by scheduling periodic meetings to answer school personnel questions. Consider becoming involved in school activities like parent–teacher groups. Volunteer at your child’s school. Attend open house events or chaperone a field trip, and model how you handle your child and his hemophilia. Sign up for your school’s online parent portal. Keep his teacher up-to-date with events at home; for example, a traumatic bleed while on vacation, the impending birth of a sibling, or anything that might cause stress and lead to a bleed or might affect school participation and attitude. Get involved with your child’s school experience to show your positive attitude and act as a role model.
Excerpted from Raising a Child with Hemophilia, 2023 Coming soon!