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For Parents

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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