Building independence is a process that often kicks into high gear toward the end of high school and into whatever that next phase of life may bring. This transition involves not only the young adult but also the parent or caregiver, whose role is also drastically changing.

This section covers:

What Building Independence Means for Teens and Young Adults

What Building Independence Means for Parents and Caregivers

What Building Independence Means for Teens and Young Adults

As you start to think about or even plan for your future, part of that will include doing things more on your own as an adult. It may feel exciting to gain independence. It may also feel challenging not knowing what to expect. These feelings are a normal part of growing up and becoming independent. Managing and treating your bleeding disorder yourself will help you take steps towards independence

How Building Independence Benefits You

Makes You Feel Good About Yourself.

Learning a new task gives you a feeling of success. This includes learning to self-infuse or self-treat. Knowing how to respond in emergencies, advocate for your own needs, and speak knowledgeably about your bleeding disorder strengthens your confidence.

Allows for New Experiences.

Being an expert on your bleeding disorder allows for new opportunities. Knowing how to advocate for yourself, manage your bleeding disorder, and keep safe helps you to travel, go to college, have jobs, or live on your own.

Enables Decision – Making.

Learning more about your blood or bleeding disorder and advocating for your care will empower you to make decisions for your own health. This will give you a new level of independence but will also come with responsibilities.

Improves Your Social Life.

Taking control of your care means you can participate in activities without your parents or caregivers texting, calling, or coming with you to make sure you are safe.

 

Taking Steps to Independence

The process of gaining independence is a transition. As you move towards adulthood you and your parents or caregivers will take on new roles. It may be hard for your parents or caregivers to adjust to these new roles. It may cause them worry because they want to ensure your safety. By taking steady steps toward independence, you’ll show your parents or caregivers you are ready to take care of yourself.

Here are some ideas to support your steps towards independence that will show your parents or caregivers you are serious about gaining more responsibility:

  • Take on additional responsibilities outside of your medical care, such as household chores.
  • Learn how to self-infuse or self-treat, order your treatment products and supplies, speak up at doctor’s visits, and schedule your own medical appointments. Show you are consistently wearing your medical ID jewelry.
  • If you want more information about how to administer treatments, please go to Treatment Basics.
  • If you want more information about what to do in emergencies, please go to Emergency Preparedness.
  • Make good choices about school, sports, and your health. Discuss the pros and cons of your options with your parents or caregivers to show you take the decision-making process seriously.
  • Work with your parents, caregivers, and your Hemophilia Treatment Center (HTC) on a plan to take on more responsibility for your own care and start to learn more about your health insurance.
  • If you want more information about health insurances, please go to Insurance Basics.
  • Don’t get discouraged when you make a mistake. Talk it over with your parents or caregivers and your HTC team. Recognizing your mistakes and learning how to identify, correct, and keep from repeating them is all part of becoming independent.

You can take a quiz to see how ready you are to transition to adult care as well as get other great tools and tips at Got Transition.

What Building Independence Means for Parents and Caregivers

As a parent or caregiver of a child with a blood or bleeding disorder, you’ve taken on many roles throughout their life. You have cared for your child’s medical, health, educational and emotional needs. You have taught others, including your family, friends, teachers and coaches about your child’s needs.

You likely have been working toward the day your child becomes independent—when they can take care of themselves. You have educated your child on their blood or bleeding disorder and taught them how to advocate for their needs. You have looked forward to watching your child grow, develop, and pursue their dreams.

So why is it so hard to let go?

You may wonder if you’ve done enough. Will your children remember everything you taught them? Can they speak up for themselves even when under stress? These normal feelings and concerns can be worse when your child has a chronic illness. It can be difficult to watch your child struggle or make mistakes, especially when a mistake can impact their health. The good news is this transition doesn’t happen quickly and despite the fears, providing your child with the tools to live independently will not only benefit them but also you and your other relationships.

How Building Your Child’s Independence Benefits Your Young Adult

Promotes Self-Esteem and Confidence.

Being able to speak knowledgeably about their bleeding disorder and feeling able to treat and care for their disorder gives a sense of success in a child's life.

Creates Opportunity.

When your child can care for themselves, it can allow for new opportunities. Your child can go away to school, get a job, visit family and friends, and create new relationships.

Encourages Becoming a Mentor or Role Model.

Your child can be a mentor for other children and families who are struggling with self-care. By sharing some of the challenges they faced and how they overcame these challenges your child can 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 themselves and speak on their own behalf, you’ll know it’s because of your patience and guidance. Raising a child is hard work, but when you see them making good decisions about their health and well-being, you know the hard work was worth it.

Relax and Focus on Yourself.

A lot of your energy and time might be spent supporting your child. Trips to the Hemophilia Treatment Center (HTC) or emergency department and worrying about your child’s physical, emotional, or school needs may have occupied much of your life. Now 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 activity or explore a new interest.

Create a New Relationship With Your Young Adult.

Your young adult should be taking on most, if not all, of their health care. That means you will begin to see your child in a new way. This is an opportunity to start a new conversation and explore a new relationship with your child. As they become self-assured, confident, and independent, they will begin to understand the work, time, and energy you have put into raising an independent person.

 

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

  • Embrace your new role as coach, counselor, and confidant, rather than primary caregiver.
  • 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 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.

If you want additional tips and tools for your role in this journey, please go to Got Transition.