As a parent, you want to protect your children. When you have a child with a bleeding disorder, you may feel an even greater urgency to stay close to your child to shield them from harm. This tendency to hover is often called helicopter parenting and can do more harm than good. Of course, you will want to closely monitor your child’s treatment and make sure he or she is getting proper care, but constantly monitoring your child’s actions in other non-medical areas will rob your son or daughter of the important lessons needed to learn to become a successful independent adult.

As much as possible, include your child in discussions where they can voice their own opinions, make choices, and come to conclusions. This can be as simple as deciding which activities to join or electives to choose at school, or which household chores to accomplish during the week. Encouraging the decision-making process at a very early age will ensure that your child is prepared for more independent behaviors. This will be especially useful as they learn the necessary steps to manage their own health care.

Ask your child in advance if they have any questions for their doctor or things they would want to bring up. If not, pose a few options or ideas. Model the behaviors you want to see in your child by showing them how you write questions down in advance and bring them to the appointment. If your child isn’t feeling ready to ask questions themselves, model how it is done but after the visit, take a few minutes to ask your child what they noticed about how the interaction with the doctor went. Eventually they can practice asking questions to you like you are the doctor and then one day doing it on their own. It can also be a good idea in the visits to pause before you answer any questions the doctor may ask and turning first to your child to encourage them to respond. You can always fill in with more details after but giving them a voice in their own health care will go a long way for future independence.

Teaching children self-infusion or self-injection is one of the most important steps to building independence. The health care team, including the hematologist, nurse, and social worker, can help you and your child assess readiness for self-administration and assist with the process. When children can manage this aspect of their health care, a whole new world opens for them. They can freely participate in overnight sleepovers and travel to camp. Moreover, you can feel reassured that your child is educated about his or her bleeding disorder and knows what to do in case of an emergency.

If you want more information about treatment administration, please go to Treatment Basics.

Assigning chores helps children learn to be accountable to the family team. Learning how to manage simple tasks will carry over into their school life and eventually the workplace and their own household. Chores help build a feeling of accomplishment and competence and help establish good attitudes about work. Children with bleeding disorders can benefit from the lessons learned from doing chores as they take on more responsibility for their own health care.

Camp is a great place for children with bleeding disorders to learn the skills needed to become healthy, independent adults. When at camp, your child will have the opportunity to learn from the other campers and share similar stories and experiences. They will learn more about their disorder from the camp’s medical team. By participating in planned activities, they will learn problem-solving and leadership skills.

If you want more information about the camp experience, please go to Camp.

• Offer praise, even before a chore is completed.

• Children shouldn’t feel overwhelmed with their tasks. At the same time, they should be reminded that the household runs more smoothly if everyone is working together.
• For example: Before you can do the laundry, the clothes must be sorted or you can’t serve dinner if the table is not set.

• Expect chores to be done on a regular basis.
• Resist stepping in to do the chore if your child forgets or refuses.

• Don’t assign too many chores.
• Tracking too many tasks will make it difficult for both you and your child. Start with one or two and see how it goes.

• Whatever the task, be patient as your child learns.
• Demonstrate the chore step by step. Then ask your child to help. Eventually, they should be able to do the chore on their own.
• For younger kids, this may be explaining how to set the table. As children get older, you can explain how the washer/dryer or lawn mower works.

• Focus on the fact that your child is being helpful and contributing to the household.
• Do not redo chores if they’re imperfect. Instead, find charm in the imperfections. Be thankful that your child made the effort.

• Chore charts can help teach your child to work toward a goal. It also gives them ownership over their tasks.
• Use tasks that are easy to track.
• Use simple rewards. Your child might easily be satisfied with the chart itself and tracking chores by using fun stickers. As your child gets older, you might consider an allowance. Another idea is rewarding your child with extra video game time or a special outing.
• Keep your point system simple. If your child is young, make your system easy for them to understand. Younger children need immediate gratification and shorter time periods before earning awards. While older children can be included in the process of deciding on tasks and may receive reasonable rewards for completing them.