Raising a Child with a Bleeding Disorder—Tips for Parents
Danna Merritt, LMSW, Social Worker, Hemophilia Hemostasis Thrombosis Center, Children's Hospital of Michigan
Developing Self-Confidence & Decision-Making Skills
As any parent can tell you, there's a natural tendency to protect your child from harm. For parents of a child with hemophilia, it can be hard to find the right balance between being protective and overprotective.
Naturally, when choosing activities for your child, the risks of hemophilia need to be considered, but they shouldn't necessarily overshadow other developmental issues. It's important to remember your child's temperament, interests, and his emotional well-being, while building your child's self-confidence. Rather than thinking of yourself as your child's protector, it might help to think of yourself as his facilitator and teacher. Ultimately, you're your child's most important teacher in helping him learn to live responsibly. Children grow up to be strong independent individuals when they've been allowed to make age-appropriate decisions for themselves with parental guidance.
That's easier said than done, but it all starts with education.
Your local treatment center is a great place to begin. Aside from having a list of appropriate sports and tips for preventing injury, they can also put you in contact with support groups, social workers, and nurses who can help your child grow into a healthy adult who is capable of taking charge of himself and his hemophilia. The National Hemophilia Foundation (NHF) is another great resource. Just remember, eating right and physical fitness, as well as good problem-solving skills, is key for living healthy. But developing your child's self-confidence and decision-making skills may be the best way to help him take charge of hemophilia.
The same holds true for adults living with hemophilia. Taking care of yourself is a conscious choice. Once you make that decision, you can move forward with knowledge in a healthy and proactive way. It starts with educating yourself and getting the support you need from your treatment center, local chapter, NHF, and others. Talk to your physician or HTC about what activities are right for you and begin slowly. Once you experience success and improved health, your self-confidence will likely grow, too.