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Building Independence


Since the day your child was born you have loved and provided for your child, as any good parent would. But as a parent of a child or children with a bleeding disorder, you’ve had to become a nurse and teacher too. You’ve had to care for your child’s medical needs and have taught yourself, your child, your family, as well as your child’s teachers and other caregivers, about your child’s health, educational, and emotional needs.

You’ve been working toward the day your child becomes independent—when your son or daughter can take care of him- or herself. You’ve tried to teach your child to advocate for his or her needs. You’ve looked forward to your child's pursuit of a higher education, getting a job, and starting a family.

So why is it so hard to let go?

Most likely you wonder if you’ve done enough. Will your children remember everything you taught them? Can they speak up for themselves even when under stress? It’s difficult to watch your child struggle or make mistakes, and it’s especially hard when a mistake can be life threatening. However, providing your son or daughter with the tools to live independently will not only benefit your child but also you and your relationships with your spouse and other children.

How Building Your Child’s Independence Benefits Your Young Adult

  • Promotes Self-Esteem and Confidence. Being able to speak knowledgeably about his or her bleeding disorder, feeling secure in treating and caring for his or her disorder, and being able to speak for him- or herself in emergency situations promotes a sense of mastery in a child's life.
  • Creates Opportunity. When your child can care for him- or herself, the door will open to many other opportunities. Your child can go away to school, visit family and friends, and continue to create relationships outside of the immediate family and home.
  • Encourages Becoming a Mentor or Role Model. Your son or daughter can be a mentor for other children and families who are struggling with self-care. By sharing some of the challenges he or she has faced and the strategies for overcoming these obstacles, your child may be able to help others looking to start their transition towards independence.

How Building Your Child’s Independence Benefits You

  • A Job Well Done. When your child can care for him- or herself and speak on his or her own behalf, you’ll know it’s because of your patience and guidance. Raising a child is hard work, but when you see your child making good decisions about his or her health and well-being, you can pat yourself on the back for a job well done.
  • Relax and Focus on Yourself. Most of your energy and time has gone to supporting your children. Trips to the Hemophilia Treatment Center (HTC) or emergency room and worrying about your child’s physical, emotional, or academic needs have occupied much of your life. Your kids are grown or nearly grown, and it’s time for you to focus on you. They’re finding their own way in life and developing their own independence. It’s okay for you to try a new hobby—explore a new interest, take a class.
  • Create a New Relationship With Your Young Adult. Your now–young adult should be taking on the majority, if not all, of his or her medical care. That means you’ll begin to see your child in a whole new way and vice versa. This is an opportunity to start a new conversation and explore a new relationship with your child. As your son or daughter becomes self-assured, confident, and independent, he or she will begin to really appreciate all the work, time, and energy you’ve put into raising an independent person.

What Parents Can Do to Support Their Child’s Journey to Independence

  • Embrace your new role as coach, counselor, and confidant, rather than primary caretaker.
  • Recognize the steps you have been taking all along to promote your child’s growth and independence.
  • Consider your child’s perspective.
  • Be prepared for setbacks. Your child may not make the same choices that you would make. Allowing independence means giving them some room to make mistakes, learn and grow. Remember:
    • We learn from our mistakes.
    • It’s better to make them in a safe, supportive environment.
    • Don’t give up. Work through it.
  • Provide encouragement.
    • Focus on the effort rather than the outcome.

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Young Adults

Since the day you were born your parents have been your safety net. They’ve made sure medical and school forms were filled out, appointments were made, and lunches were packed. You never had to worry about your factor expiration date or if your teachers and coaches understood your bleeding disorder. Most importantly, if you had a bleed, mom and dad were there to comfort you, start treatment, or call the doctor.

By now you’re thinking about or planning for your future. You may want to attend school away from home, travel, or start a job. You can’t pack mom and dad in the luggage and take them with you. You can’t rely on them to continue to oversee your treatment and daily care.

Managing and treating your bleeding disorder yourself is a giant step towards independence.

Taking steps toward independence is a natural part of maturing. It may be a little daunting not knowing what to expect from the additional responsibilities that come along with gaining independence, but think about how you learned to ride a bike or to swim. Someone taught you before you were allowed to go it alone.

Taking control of your bleeding disorder is not much different. Most likely, your parents have been teaching you the steps and involving you in your care from the beginning. Your parents will continue to support you. For you to continue to move forward, however, they must move to the sidelines and become your cheerleaders. Ultimately, you must become the manager of your life and the primary caretaker of your bleeding disorder.

How Building Independence Benefits You

  • Makes You Feel Good About Yourself. Mastering a task produces a tremendous feeling of success—whether it’s learning chess or learning to self-infuse. Knowing you’ll react and respond appropriately in emergencies, advocate for your own needs with friends and medical personnel, and speak knowledgeably about your bleeding disorder strengthens your confidence. The result: greater self-esteem not only regarding your bleeding disorder but also other areas of your life.
  • Opens the Door to New Experiences. Being an expert on your bleeding disorder paves the way for new opportunities. Knowing how to advocate for yourself, manage your bleeding disorder, and keep safe allows for new possibilities and experiences, such as travel, college, jobs, or living on your own.
  • Improves Your Social Life. You don’t want mom and dad to be your roommates at college or to take them on a date with you, do you? Taking control of your care means you can participate in activities without your parents’ texting, calling, or coming with you to make sure you’re safe and able to treat a bleed on your own.

Taking Steps to Independence

Your parents may have a difficult time as you transition to complete independence. It’s hard for them to imagine not being your primary caregiver. They may not fully believe that you know how to care for your bleeding disorder. They may fear you’ll make mistakes and believe that they know more than you about your bleeding disorder and your body. By taking steady steps toward independence, you’ll show them you are ready to take care of yourself and build their confidence in you.

Here are some steps to bolster your independence:

  • Take on additional responsibilities outside of your medical care, such as household chores.
    • This will show your parents you’re serious about gaining more responsibility.
  • Learn how to self-infuse, order factor, and begin making your own medical appointments.
    • Learning all that’s involved in your care lets your parents see that you can handle additional responsibility and that you don’t expect them to care for you for forever.
  • Make good choices regarding academics, sports, and your health.
    • Discuss the pros and cons of your options with your parents to show you take the decision-making process seriously.
  • Work with your parents and your Hemophilia Treatment Center (HTC) on a plan to transition to taking on more responsibility for your own care.
  • Don’t get discouraged when you make a mistake. Talk it over with your parents and the staff at your HTC.
    • Recognizing your mistakes and learning how to identify, correct, and keep from repeating them is all part of becoming independent.