Community Connections Joby Robinson
Psycho-Educational Coordinator, South Carolina Hemophilia Treatment Center
What I have seen, even in the short time I have been a part of the hemophilia community, is such a tremendous change in attitude from the cup half empty to the cup half full! I can remember 12 years ago, the young people I was working with were mainly asking about disability and talking about how their grandfathers were on it, and that they knew they would have to be on disability as well. They were talking more in limited terms, about all the things they wouldn’t be able to do. They didn’t dream about the future.
Today, the advances in therapy have made more things possible for people living with hemophilia, whether it’s furthering your education or finding your first job or switching to a new career. While every person needs to know their personal limitations, what we try to do is encourage people to identify what their passions are and experience as many new things as possible, so they can discover what truly excites them.
Although I work primarily with children under 21, people of all ages can benefit from self-exploration exercises to prepare for career changes or new professional ambitions, or simply to help define what their interests are. Some of the tools that may be useful are the Myers-Briggs Type Indicator, which is a personality inventory test, and the Strong Interest Inventory, which helps people define their passions and preferences. This is just the kind of information that is valuable when choosing an educational path or a career you can be excited about.
We also encourage career shadowing programs where young people spend time with a person in a career that they have an interest in and talk to people who follow their passions. Today, there are so many career choices and so many specialties within those choices, that if you can’t do one aspect of it, you may be able to find a niche unique to your skills and interests.
We go on a lot of retreats where we bring young children and teen mentors together to talk about making healthy choices and taking responsibility for their medical management. At one of the most recent retreats, mentors were leading a discussion using popular songs. One song, “You’ll Never Surf Again,” is about dreams and how sometimes dreams have to be changed because of life. Matthew Tucker, one of our mentors, was leading the discussion and asked each child, “What is one dream you’ve had to give up?” When nine-year-old Lucas Nash’s turn came around, he said, “Well, I don’t have to give up any of my dreams.” Matthew gave him a big smile and then kind of pressed him about his answer, but Lucas stood his ground saying: “Nope, nope, I’m going to live all my dreams.”
Joby Robinson is the Psycho-Educational Coordinator for children with hemophilia at the South Carolina Hemophilia Treatment Center. She has been helping young people and adults discover their passions and what they want to do with their lives for more than 20 years. For more information, go to joby.robinson@palmettohealth.org.Note:Be sure to consult your physician or treatment center before beginning any exercise program or participating in sporting activities. If an injury occurs, contact your physician or treatment center immediately for the appropriate treatment.
