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Building Independence

One of your main goals as a parent of a child with a bleeding disorder is to teach your child the skills needed to successfully transition into a healthy and independent adult. How can you do this? You may have already started without even realizing it!

Here are some tips for fostering your child’s independence:

• Don’t Be a “Helicopter”—or Worse, a "Velcro" Parent
  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 him or her from harm. This tendency to hover is often called “helicopter parenting” and actually does 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.

• Allow Your Child to Make Choices
  As much as possible, include your child in discussions where he or she can voice his or her 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.
• Teach Self-Infusion
  Teaching children self-infusion 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-infusion 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.

For more information, click on Changing Roles in Treatment.

• Give Your Child Daily Household Chores
  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.

• Give Your Child the Camp Experience
  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.

For more information, click on All About Camps.

Chore Time – Keeping Your Child on Task!

Here are some tips to help make chores successful in your household:

• Make the chore a fun and positive experience.
• Emphasize how helpful your child is.
  • Offer praise, even before a chore is completed.
• Provide plenty of time for deadlines. Deadlines should be realistic.
  • 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.
    • Here are some examples:
      • You can’t serve dinner if the table is not set.
      • Before you can do the laundry, the clothes must be sorted.
• Be consistent. Expect chores to be done on a regular basis.
  • Refrain from doing the chore if your child forgets or refuses.
• Make expectations attainable. 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!
• Explain the chore simply and completely. 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.
• Don’t expect perfection. 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.
• Try using a chore chart. Chore charts can help teach your child to work towards 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 son or daughter 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.
    • Older children can be included in the process of deciding on tasks and may receive reasonable rewards for completing them.

For suggestions on tracking tasks around the house, click on Chore Chart and Chore Time - Keeping Your Child on Task!.

Ready for More Responsibility

Do you ever feel like your parents are being way too overprotective and smothering? Do you feel like you’re ready to do more things on your own but your parents won’t let you?

Here are some ways to help show your parents that you’re responsible and ready for more independence:

• Try Understanding
  Are your parents overly protective and strict with the rules? Are they constantly asking you if you’re in pain or if you hurt yourself during sports practice? Being constantly monitored by your parents can be irritating! But try to understand that they’re just concerned with your well-being. Sometimes they need to be reassured that they’re doing a good job as both parents and caregivers.

  Let your parents know that you understand their worry. Help ease their anxiety by sharing both your successes and setbacks at school and in sports.

• Take on More Tasks Related to Your Medical Care
  The best way to show your parents that you’re becoming more responsible and deserve more independence is to start taking control of your health care. You can help set up the supplies for your infusions and clean up afterwards, start tracking and ordering supplies, and log all of your treatments.

For more ideas on how you can take a more active role in your own care, click on
Changing Roles in Treatment.

• Show an Interest in Self-Infusion
  Being able to infuse your factor on your own will give you the freedom to do many things. It will also show your parents that you’re capable of handling one of the most important parts of managing your bleeding disorder. They’ll feel reassured that you can take care of yourself when they’re not around.

To learn more, click on Self-Infusion.

• Do Chores Around the House
  One way to help show your parents that you’re ready for more responsibility and growing more independent is by taking on more tasks around the house. It doesn’t need to be too time-consuming. Setting the table for dinner or taking out the trash will be an immense help to your parents. By lending a helping hand, you’ll show that you respect the household, and, in turn, your parents will show you the respect you deserve!