When Your Child Has a Chronic Medical Illness
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.
Acknowledgments
The Unexpected Journey Begins
- Navigating Your Feelings
- Staying Healthy on the Journey
- Getting What You Need on the Road to the New Normal
- Communicating With Your Child: It’s a Two-Way Street
- Your Co-Pilots: Other Parents and Parent Figures in Your Child’s Life
- Getting Everyone on Board: Siblings and Other Family Members
- Mechanics of Working With the Medical Team
- Mechanics of Working With the School Team
- The Cone Zone: Setting Healthy Boundaries
- When Your Journey Includes Hospital Stays
- The Journey Through Death and Beyond
- Concluding Thoughts: Building Resilience on the Journey
Resources for Your Journey
Notes
About the Authors
Frank J. Sileo, PhD, is a New Jersey licensed psychologist, an award-winning author, and national and international speaker. He is the founder and executive director of The Center for Psychological Enhancement, LLC, in Ridgewood, New Jersey, where he works with children, adolescents, adults, and families.
Since 2010, he has been consistently recognized as one of New Jersey’s top kids’ doctors. He is often the “go-to” psychologist in the media for his insights on health issues and parenting.
Dr. Sileo lives in Ridgewood, New Jersey. Visit Dr. Frank Sileo onlineopens in new window.
Carol S. Potter, MFT, is a licensed marriage and family therapist. In her practice she has worked with individuals, families, and couples, as well as children and adolescents in school settings, and facilitated both bereavement, and anger management groups. She helped develop the strengths-oriented Best Practice Parenting program for the Southern California Counseling Center.
An active advocate for women survivors of domestic violence she was honored by Sojourn as the Woman of the Year in 1994. Ms. Potter played Cindy Walsh, one of television’s most beloved mothers, on “Beverly Hills 90210”.
She lives in Los Angeles, California. Visit Carol Potter onlineopens in new window.
- Silver Medal for Parenting in the Independent Publishers Awards
When Your Child Has A Chronic Medical Illness helps to show the need for caregivers to treat themselves humanely and with compassion. It is a godsend for anyone seeking guidance and tools for assistance in navigating the many challenges that arise within themselves, their caregiving support circle, the medical and social program arenas. It shines a light on difficult and confusing subjects with real tools for a reader to take from the book with comprehensive charts and easy to understand advice to help with the many issues that may be encountered. Dr. Sileo and Carol show us not only why, but also how, to practice self-empathy to help with the journey of caring for a child with a chronic illness. Finally, this book can help caregivers reaffirm their purpose with appropriate self-care and experience the beauty and transformation this pilgrimage will provide.
—Dream Street Foundation
Psychologist Sileo and family therapist Potter prove to be profoundly sympathetic guides in this take on the “unexpected journey” of having a child who is diagnosed with a chronic or terminal illness… Sileo and Potter offer realistic comfort and directly applicable skill-building in equal measure. The wise advice and helpful tips will leave parents feeling well-equipped to face steep challenges.
—Publishers Weekly
This is an outstanding book that addresses the challenges of chronic disease in children from multiple viewpoints with a great deal of practical knowledge. Given that Diabetes is one of the most common chronic diseases of childhood, this work will serve to guide families in navigating the sometimes challenging journey to ensure the best possible outcomes for all.
—Robert Gabbay, MD, PhD
Chief Scientific and Medical Officer for the American Diabetes Association
The journey with a chronic illness can be overwhelming, and often calls for education, support, and self-empowerment. Parents and caregivers of children with chronic diseases often take on the critical role of preparing their children for the journey toward, and often extending into, adulthood. Every parent wants to ensure that their child is well-equipped to manage their own care when that time comes. The Crohn’s & Colitis Foundation recognizes this guide’s value in helping parents along this challenging road. The journey for every child is different, and having a chronic illness adds another layer of complication. This book is a great resource to help families manage mental health, school accommodations, social activities, medical management, and everyday experiences for all with a chronic illness. Parents will appreciate the depth of information offered by this book, and it can serve as a helpful guide in preparing for the journey they will tread together with their children.
—Crohn’s and Colitis Foundation
Dr. Sileo and Carol Potter’s book is a heartfelt and transparent look at the emotional journey as a parent and full-time caregiver for a child with chronic illness. Frank offers practical advice and personal insight from the experience of dealing with his own invisible disabilities diagnosed in his early twenties. Carol offers her experience with caregiving for her husband who had terminal cancer. The authors provide wisdom and tangible guidance for managing this emotional roller coaster caring for a child that will help anyone dealing with these situations. Their tips and wise counsel for accepting the “new normal” and having a PLAN (Putting Life into Action Now!) are life-giving, as well as their advice for speaking up (“If you don’t ask, you don’t get”) for keeping your engine running along with your health and welfare. This book is a “must-have” for parents in a caregiving role for a child with chronic illness and pain or any disability.
—Jess Stainbrook
Executive Director – Invisible Disabilities® Association
When your child is diagnosed with a chronic illness like type 1 diabetes as happened in our family, your world stops. You must learn life sustaining care for your child from people who have spent years, if not decades, learning and practicing their medical skills that you have days, perhaps weeks, to master. This can be overwhelming as the days lead to months and then to years. When Your Child Has a Chronic Medical Illness, written by Dr. Frank Sileo and Carol Potter, MFT and published by the American Psychological Association, is a comprehensive guide to help parents in their journey as they embark upon a life different from what they had expected. This book is extremely thorough, and you will find advice, guidance, and comfort regardless of your family’s situation. Among the nearly 400 pages, one sentence stands out: “The clearer your vision of your child thriving with their chronic illness is, the more likely you will be to take action to help them get there.” This is the essence of the role of a parent of a child with a chronic illness, and with the help of Sileo and Potter, you will learn to focus on your family and not on the illness to give your child, and your family, the best life possible.
—Jeff Hitchcock, President
Children with Diabetes
As a physician, I have often been in the position of delivering the diagnosis of a child’s chronic illness to their parents and family members. While this can be a regular part of my work, it never leaves my thoughts that this news has changed the course of a family’s life. In those moments, I often wish I could provide them with support and resources beyond just medical care. This lovely and poignant text by Dr. Frank Sileo and Carol Potter, MFT does just that, and I will be using it as a reference for patient’s and their families as I develop my practice for years to come. I am so grateful for the attention and support they have brought to this issue.
—Miriam E. Goldblum, MD
Psychiatry resident, Weill Cornell Medicine/New York Presbyterian Hospital
Authors Sileo and Potter bring parents a timely road map for how to navigate raising a child with a chronic illness. The book is jam-packed with practical information and guidance about a variety of topics that affect ill children and the families that care for them—everything from coping with hospitalization to schooling, and even taking a vacation. The authors translate medical and educational concepts into layperson’s terms, making the information highly accessible and understandable. Praises for a much needed book that takes a holistic approach to a lifelong parenting experience, addressing the needs of heart, body, mind and soul for the whole family.
—Deborah Vilas, MS, CCLS, LMSW
Dr. Frank Sileo and Carol Potter, MFT have created an instrumental guide for parents caring for a child with a chronic medical illness. Within the challenges and complexities of the healthcare journey, parents learn the importance of taking time to reflect, connect, and honor their feelings with a sense of hope and support. This book provides an opportunity to recognize your capacity for self-care and self-compassion, choose renewing emotions, and create a plan to greet the challenges before you with a new perspective of possibilities. Tools and techniques to nurturing your mind, body, and spirit are shared to promote a shift towards greater resiliency. Taking small steps to improve sleep, nutrition, and activity will profoundly impact feelings of purpose and well-being, moving beyond your ability to cope and create a pathway to thrive.
—Kelly Briggs, RN, NE-BC, HNB-BC, RYT-500
Director of Integrative Health & Medicine at Hackensack Meridian Health Network.
This book is an essential resource for families living the daily obstacles and uncertainties of caring for their child with a chronic medical illness. With sheer compassion and a desire to help , the authors bring hope as well as effective techniques to navigate through the day to day challenges. Along with practical advice for everyday living, readers are empowered to understand and uncover their own personal needs, desires, beliefs, attitudes and feelings. The physical and emotional well-being of the caregiver is often sidelined or simply forgotten when addressing the care of a child. Sileo and Potter not only bring this to the forefront, but they provide resources and tools such as mindfulness, spirituality and humor to nurture the caregiver. This book provides a well-rounded approach to caring, parenting and loving your child with a chronic medical illness.
—Allison Morgan MA, OTR, E-RYT
Founder of Zensational Kids
An extremely informative guide on navigating pediatric chronic illness for anyone involved in a child’s care, from parents and teachers to medical practitioners. This comprehensive book provides an insightful perspective on the emotional and logistical challenges for families in navigating chronic illness from diagnosis through treatment and beyond. Frank and Carol’s personal and professional experiences provide a deeper appreciation for the many aspects and impacts of chronic illness, and enable me to be a more compassionate practitioner with children and their families when I am lucky enough to be involved in their continuum of care. A truly impressive resource that will become a staple on my bookshelf.
—Julia S. Buckley, MS RDN
Owner, Julia S. Buckley Nutrition
Dr. Frank Sileo and Carol Potter have inspired me with their new book. This book is crucial for parents as well as to all of those involved in caring for or knowing someone with a chronic medical illness. Dr. Sileo and Ms. Potter walk the reader through the “journey” of navigating the life of a parent of a child with a chronic illness. As an adult child with a chronic illness, I wish this book had been around to help my parents in our journey. As a professional, I will utilize this book to help my clients navigate their own journeys.
—Lisa B. D’Acierno, LCSW
Founder and Director of D’Acierno and Associates Psychotherapy
