I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine?
This is a great question to be asking now, as transitioning to independence is a process. Consider incorporating the following strategies into your routine overtime. Involving your kids in their care is a good way to build responsibility and confidence, while preparing them for managing their bleeding disorder as an adult!
- Advocacy: Encourage your kids to speak up and ask questions with people they interact with regarding their bleeding disorder, including doctors, teachers, coaches, etc. Start by having them talk about school or other activities they’re involved with to develop comfort speaking for themselves, and let them take increasing responsibility for talking about their health in various settings. Building their confidence will help them be more comfortable with being their own advocate.
- Organization: Emphasize the importance of planning and record keeping. Have them start taking responsibility for logging any bleeds. With respect to their HTC or doctor visits, ask them to keep a paper or electronic calendar with appointments and record notes of what was discussed. Writing things down is an important habit to form at any age!
- Be proactive with healthy habits for the long term: Modeling good habits now will set a foundation for your kids as they grow. For example, eat healthy and build physical activity into family activities and schedules. HFA’s FitFactor Program offers tips for leading a healthy lifestyle, including how to preserve healthy joints.
- Create opportunities for your kids to stretch their wings: Work with your kids toward mastering self-infusion (your hematologist and/or homecare company may offer classes or other training). If your kids have self-infusion skills, parent and child alike will feel more confident about them venturing from the nest! Similarly, consider signing your kids up for hemophilia summer camp, if they haven’t already had this experience.
- Education: Your local bleeding disorders organization, HFA, and NHF have lots of opportunities to help you as you guide your preteens toward independence. Take advantage of these resources in-person or online. Here are some areas that might be beneficial for your kids now or for future conversations: health insurance 101, relationships, travel, financial responsibility, etc.
These strategies will benefit your kids not only with managing their bleeding disorder, but in other areas of life. For more information or with questions, check out HFA’s Families Program.
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.