Parenting a child with a chronic medical illness poses unique and enduring challenges. Two mental health professionals marshaled their clinical and personal experience and insights to create a book for parents with a chronically ill child. Frank Sileo, PhD, and Carol Potter, MFT, answer questions about writing When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey. This is part one of their interview.
Magination Press: What inspired you to write When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey?
Frank Sileo: I was diagnosed with a chronic gastrointestinal disease called Crohn’s disease back in 1989. It’s a chronic, autoimmune disease that’s a form of Inflammatory Bowel Disease. Following receiving the diagnosis, I wrote my first children’s book, Toilet Paper Flowers: A Story for Children about Crohn’s Disease. After I wrote this book, I was invited to speak about how chronic illness impacts children and families. I also started receiving referrals to my clinical practice of kids and families struggling with chronic medical issues. I have always wanted to write a parenting book that would include the advice, research, and psychological coping skills I lecture about and share with my patients in my practice. I wanted to create a tool that parents can have on hand to refer to on their parenting journey. Having this book published is a huge dream come true moment for me!
MP: Do you have experience with parenting a child with chronic illness?
Carol Potter: My son Christopher did not have a chronic medical issue but did have some learning issues beginning in elementary school, so I am familiar with some aspects of this situation. There were searches for the appropriate professionals to help, testing with a psychologist, working with the schools and teachers trying to get them to understand what he needed, and additions to his schedule that he just didn’t want to do. Fortunately, I never had to worry about his health, or about the kinds of emergencies these parents have to deal with, but being a mom I can begin to imagine how scary it must be when your child’s health threatens their ability to make friends, attend school, or even their very life. All parents worry about their children; the worries of parents whose children have chronic medical illness, though, include concerns about survival, which I know must add immeasurably to the stress they already feel.
MP: How did you end up collaborating on this project?
FS: I know Jason Priestley, who played Brandon Walsh on the show Beverly Hills, 90210. Jason has reviewed some of my children’s books. When I wrote my children’s book A World of Pausabilities: An Exercise in Mindfulness for Magination Press in 2017, he told me that his 90210-television mom, Cindy Walsh, played by Carol, is a marriage and family therapist. I looked her up on the web and saw she practices mindfulness with her patients and has a personal practice. I reached out to her for a review and she graciously agreed. I was in LA in November of 2017 and invited Carol for breakfast to meet her and thank her for her lovely review. During breakfast, I mentioned that one of my dreams was to write a parenting book. Carol is a seasoned marriage and family therapist and I thought her expertise would complement the book in many ways. We worked for three years on this book with her in LA and me in NJ. Dealing with time zone changes, we worked beautifully together! She is now not only my co-author but my friend as well!
What makes parenting a child with a chronic illness different from an acute one?
CP: In the past, children with many of these illnesses did not survive to adulthood. So, the good news is, with proper medical care, they do. The result, however, is that the burden of providing the medical care they need is shifted to the family, primarily the already overburdened parents. Most families can rise to the occasion to address an emergency, or an acute illness. Everybody gets on board to do whatever is necessary to get through the crisis, and then they can go back to normal. This isn’t the case when you’re dealing with a chronic medical illness. The extra requirements of care operate 24/7, every day of the week, every month of the year. There is really no respite, no returning to some pre-illness version of normal. This is challenging for the parents, but also for the child’s siblings and other family members. The whole family can be affected by the relentless demands of care. Families must find a way to integrate their child’s needs into their own unique version of ‘normal.’
MP: You provide advice and tips for self-care. Why is self-care so important for parents in this situation, and do you have favorite strategies?
CP: As a woman and a mother, I know that if I am not taking care of myself, I’m not going to be able to take care of my family. As an actor, self-care has always been an important part of my regimen, even more so after becoming a therapist. Women, in particular, tend to be accused of being selfish if they do things for themselves, so it was very important to me to make sure that we emphasized how important it is for the caretakers to take care of themselves. Issues such as burnout can severely impact a parent’s ability to provide the care their children need. We have to refill our tank before it’s on empty, or we endanger not only our own health, but as a consequence the health and well being of our children. I have a daily meditation practice, a regular exercise routine, including twice a week yoga, and belong to various groups that meet regularly to provide mutual support.
FS: One of my favorite self-care strategies is mindfulness. I practice mindfulness meditation and yoga daily. It really assists me personally and professionally in so many ways. The study and practice of mindfulness has become such a huge part of my life that I also wrote four children’s books on the topic!
For more insights from the authors, read part two of their interview. It will post in March.
Related Books from Magination Press
When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey
Written by leading mental health professionals, this warm and accessible parenting book for children with chronic medical illnesses offers clear, practical guidance for all aspects of the journey.
For all its joys, parenting is a complex job, and when your child has a chronic medical illness, the stress can feel overwhelming. When your child is diagnosed, you begin a parenting journey filled with strong emotions, difficult choices, confusing words, and interactions with numerous professionals and specialists.
You’re focused on ensuring your child gets the best possible treatments for their symptoms, so it’s easy to overlook or dismiss the impact the medical illness can have on your relationships and emotions. This book places your psychological well-being front and center, so you can be the best caregiver possible for your child.
Along with suggestions for making laughter and mindfulness part of your daily self-care routine, it offers guidance for choosing the right therapist for your family, should extra support be needed. Every family’s journey with chronic medical illness is unique, but you don’t have to go it alone.