Depending on when your child is diagnosed with a bleeding disorder, your first conversations with him or her about the condition might be short and simple, or longer and more detailed. But regardless of a child’s age, the way in which you talk to children about the condition can go a long way toward helping them feel more empowered.
“When kids are confident and comfortable dealing with their bleeding disorder, it’s usually because their parents have been confident and comfortable talking to them about it,” says Jennifer Maahs, MSN, PNP, a hemophilia nurse practitioner at the Indiana Hemophilia & Thrombosis Center in Indianapolis.
Three tips to help your child feel in control of his or her bleeding disorder:
The best way to foster a sense of empowerment is by taking a positive approach whenever you discuss your child’s bleeding disorder. Dwelling on the negative or the things that children with bleeding disorders can’t do instead of what they can do will only make him or her feel less confident and more like a victim.
How you speak about bleeding disorders to others is also key. “Children have really big ears,” Maahs says. “When you are on the phone with someone, it’s likely that your child is listening to everything you’re saying.”
You should also try not to blame your child if he or she gets injured. Rather than make your child feel bad about what happened, you can turn the situation into a learning opportunity, Maahs says. “You might say, ‘What can you do next time so that you’re better prepared?’”
Stress that ‘everyone has something’
It’s understandable for children with a bleeding disorder to feel different, but you should remind them that everyone is different in one way or another.
“One parent at our treatment center tells his child, ‘Everyone has something,’” Maahs says. That approach can help children realize that even though they may feel isolated and different from everyone else, the truth is that everybody has differences, and in many cases these differences are things we can’t even see.
Encouraging children to play a role in their care and infusions can also normalize their condition. If your child thinks of his bleeding disorder as just a normal part of his life, then it loses a lot of its stigma, says Maahs. Participation also decreases feelings of helplessness and fear.
Whenever possible, include your child in discussions where he or she can make choices and voice an opinion. Even young children can participate in small tasks, such as choosing their adhesive bandage. Children who participate in the decision-making starting at a young age are taking an important first step toward independence.
While you may be tempted to reward your child after every infusion, Maahs says it’s not a good idea. To normalize the condition, it’s better to treat infusions as just another part of your child’s routine, like brushing teeth or taking a shower.
Encourage opportunities for sharing
As children reach adolescence, it becomes more important for them to connect with other children who have a bleeding disorder. “Talking with peers is extremely valuable, since in many cases a child may be the only person in their entire school who has hemophilia,” Maahs says.
Camps and support groups for children with bleeding disorders are ideal, Maahs says, “because
a child gets to spend time with other kids their age who are dealing with the same challenges and issues, and so they feel much less isolated when they realize that it’s not just them.”
• NHF’s Steps for Living website offers information for parents of kids with bleeding disorders as their children move from birth to adulthood: stepsforliving.hemophilia.org