Notes on support sessions held at the Annual CFRI Conference
Believing that proper emotional support provides a foundation for dealing with cystic fibrosis, the conference committee set aside several hours for group workshops. Parents, siblings, extended family and friends dealing with a loved one's CF were invited to join in groups according to the age of the CF individual. Adults with CF and their spouses or significant others broke into separate groups to discuss topics of interest to the CF adult. All groups were led by experienced facilitators. Several gave brief presentations to aid in the process of living with CF.
Susan Markowitz, Ph.D., who practices in Menlo Park, California, led a group for parents of newly diagnosed children and parents of children with CF aged newborn to five. She offered four steps for coping when dealing with a disability. The first step is to normalize the emotional response to the disease. Accept that a wide array of feelings might arise in response to the diagnosis or decline in health. All of these feelings are normal. Do what you have to do to get yourself through hard times and the feelings that follow. Second, educate yourself as much as possible. You need information to feel powerful, to understand the disease and to talk with practitioners. Learn about the normal stages of parenting and child development, then be aware of where CF makes an impact and ways in which your relationship with your child may be slightly different. Third, become an advocate for your child. This is very hard for many parents and caregivers, but it is a coping mechanism that not only helps the child, but gives parents power and control. It is a way of taking charge of what affects you and your child. Finally, fourth, find a balance for the CF influence. Your child has CF, but does not have to be a "CF child." Learn to see CF as an attribute, not a definition. When you identify your child by the disease, it limits possibilities for how you will be able to see your child. Furthermore, if you can't limit how CF defines your child, then you will not be able to limit how CF defines your family. There have to be things about the child and the family that are not about CF.
Beth Leydon, M.F.C.C., from Auburn, California, leading the parents of adult children with CF, used a tissue box to illustrate raising children. Birth is the moment you first open the box. When you hold a newborn, you are completely responsible for all of the child's needs. As the child grows, you slowly shed certain responsibilities (tissues). Your child takes over feeding, mobility, dressing, and grooming. As they grow they make their own friends, choose their interests, do their homework, share chores in the household. Ultimately, they learn to drive, work at a job, make decisions about education, perhaps choose a partner. If as parents we are doing our jobs, we should wind up with an empty tissue box; that is, we will have transferred all of the caregiving responsibilities to the adult. With a young adult with CF this is obviously more difficult. But unless your offspring is seriously disabled by his or her disease and asks for help, it is imperative to hold close to the model of normal development and separation. That means learning to let go of their care and trusting them to be able to care for themselves.
Finally, Judith Larson, Ph.D., who led the group for parents of teenagers with CF, tried to stress that the rebellion was normal. She insisted that the separation and independence issues facing these teens are no different from other teens. What is different is their means of expression, which often takes the form of rebellion toward medical regimes. After an intense rap session, she offered the following book list to parents seeking more in-depth treatment of the subject. Your Acting Up Teenager, Bayard & Bayard, Accord Press 1981 Talking with Your Teenager: A Book for Parents, Bell & Wildflower, Random House Between Parent and Teenager, Hiem Ginott, Avon Books 1969 Parent Effectiveness Training, Thomas Gordon, Wyden Books How to Live with Your Teenager, Buntman, Birch Tree Press 1991 Uncommon Sense for Parents with Teenagers, Riera, Celestial Arts 1995 Parents, Teens and Boundaries, Bluestein, Health Communications, Inc. 1993
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