Is Your Child On the Road to Independence? We Can Help!
Horizons in Hemophilia, April 2012
By Cathy Hulbert, LCSW, HoG Social Worker
Also contributing to this article:
- Hilary Cohen, LCSW, Social Worker, Emory Healthcare
- Towanda Blackwell, MSW, Social Worker, Children’s Healthcare of Atlanta
- Chartara Gilchrist, BA, Social Worker, Georgia Health Sciences University
- Betsy Koval, RN, BSN, Emory/Children’s Healthcare of Atlanta, Hemophilia and Bleeding Disorders Clinical Coordinator
This is part two in a three-part series on transitioning from childhood to adulthood. We all know that doing something right takes practice. Teens don’t learn to drive when they get in a car and leave by themselves for the first time. College students don’t learn to study just before heading out for their freshmen year.
Taking responsibility for your health requires just as much practice. As a social worker, I often tell parents and teens that being your own healthcare advocate should not be one more thing you have to learn when you first leave home. It is so much better for everyone if that topic already feels comfortable!
That is why all members of your child’s medical team and HoG staff urge independence before the age of 18, when a person is legally considered an adult. We know that this subject can feel loaded. When children with bleeding disorders start taking steps toward independence -- or when they are hesitant to take those first steps -- it is important for the whole family to know that they are not alone.
If you are the parent it can be scary letting go, even a little. Parents have sometimes shared the fear of being blamed if something goes wrong while their kids are learning to be more independent. On the other hand, it is possible that as a parent you actually are more eager than your child to see those first signs of self-reliance. Either way, social workers, nurses and doctors can be brought into the conversation to give support.
Kids and teens who have bleeding disorders can feel anything from excitement to fear (or maybe a mixture of both) when it comes to learning self-infusions and other types of self-care. Independence also includes learning how to order your own medicine and how to talk with your doctor. It means being able to tell other adults about your bleeding disorder if they have a need to know, and even understanding how your insurance works. All of this is in preparation for a time when everyone starts considering you an adult who should know these things.
Each family is unique. Where you stand on these issues depends on so many factors, including your family and extended family’s history with bleeding disorders, the emotional maturity of the teenager or child, and other life experiences that can impact self-esteem, feelings of safety and confidence.
We often hear parents say, “I’m glad that you are talking about this, too, because my child acts like I’m nagging him when I try to get him to do more for himself.” But that’s only one scenario in which we can be helpful.
Here are some others:
- Sometimes the adults in a family disagree about when it is time for a child to start learning independence.
- Parents can feel concerned or confused if a doctor or nurse starts directing more questions toward the child or teen. If the medical staff is ready to promote independence but the guardians are not, it helps to get things out in the open.
- Perhaps a parent’s attempts to support independence are viewed as unwanted pressure by the child or teen. Many kids are ready to start learning the process of self-infusion when they go to Camp Wannaklot for the first time at age 7. But others are still not ready to start when they become teenagers. They need a gentle nudge in the right direction.
- If a child or teen has an inhibitor or other added health challenge, parents are naturally more protective than ever. How safe a parent feels about the road to independence can have a big impact on how the child or teen feels about it.
- Some families emphasize self-infusions but don’t think about other aspects of self-care that a young adult needs to know, such as carrying and using an insurance card or ordering medicine when parents are not around.
There are many reasons to learn self-care even if a person is turning 18 but not leaving home. Parents can get sick or have to leave town suddenly. Opportunities to spend the night with friends, attend other types of camps or go on field trips also require some ability to show responsibility and independence.
In part three of this series we’ll look at other important concerns, such as:
- Who will my child’s healthcare provider be as he or she gets older?
- Where is my new clinic? When does my teenager start signing for himself to get blood drawn and other tests?
- How do I make an appointment when the change happens and just as important: Where do we park and how much will that cost?
Bridging the gap may start at any age and patients and families are welcome to ask any questions they may have of pediatric and adult HTC social workers as well as those at Hemophilia of Georgia.
For more general information on transitions you can look at this website hosted by the National Hemophilia Foundation: https://www.stepsforliving.hemophilia.org/section2_4_3