When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey

by Frank J. Sileo PhD, Carol S. Potter MFT

Overview

Written by leading mental health professionals, this warm and accessible parenting book for children with chronic illnesses offers clear, practical guidance for all aspects of the journey. Recommended by professionals at the American Diabetes Association, Invisible Disabilities Association, the Crohn's Colitis Foundation, and other expert national and regional sources.

For all its joys, parenting is a complex job, and when your child has a chronic 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 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 illness is unique, but you don’t have to go it alone. This book received the Silver Medal for Parenting in the Independent Publishers Awards.

Product Details

ISBN-13:	9781433833816
Publisher:	American Psychological Association
Publication date:	03/09/2021
Series:	APA LifeTools Series
Edition description:	First Edition
Pages:	419
Product dimensions:	5.50(w) x 8.50(h) x (d)

About the Author

Frank J. Sileo, Ph.D., 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. Learn more: www.drfranksileo.com

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. Learn more: www.carolpotter.net.

Table of Contents

List of Worksheets xi

Foreword Lawrence D. Rosen, MD xiii

Acknowledgments xv

The Unexpected Journey Begins 3

Why We Wrote This Book 6

What's in This Book 7

Our Stories About Chronic Illness 11

Our Hopes for You 18

Chapter 1 Navigating Your Feelings 21

What Is Chronic Illness? 23

Your Feelings Are All Over the Map-And That's Normal 24

How to Cope With Your Feelings 39

Next Step: Hope Helps You Cope 43

Chapter 2 Staying Healthy on the Journey 49

Burnout and Compassion Fatigue 50

Exploring Mindfulness Baths 55

Exploring Spiritual Paths 68

Next Step: Make Humor Part of Your Every Day 77

Chapter 3 Getting What You Need on the Road to the New Normal 83

"I Don't Have Time for One More Appointment!" 85

Finding a Therapist 86

Support Groups 92

Working With Your Insurance Company 95

Working With Your Employer 101

Be Persistent and Insistent 103

Finding Child Care and Respite Care 106

Next Step: Consider Participating in Clinical Research 109

Chapter 4 Communicating With Your Child: It's a Two-Way Street 113

Breaking the News to Your Child About Their Illness 114

Managing the Booster Seats: Talking With Your Preschool-Age Child 117

Teaching Them to Buckle Up: Talking With Your School-Age Child 122

Driving Lessons: Conversations With Your Teen 129

Next Step: You Can't Always Fix It, but You Can Be Present 140

Chapter 5 Your Copilots: Other Parents and Parent Figures in Your Child's Life 145

Staying Calm at the Wheel 146

When You're Driving Alone 156

Sharing the Wheel: When You Are in a Committed Relationship 157

Taking Turns at the Wheel: When You're Separated or Divorced 162

Next Step: Get That Engine Running More Smoothly 167

Chapter 6 Getting Everyone on Board: Siblings and Other Family Members 173

Bringing Siblings on Board 175

Bringing in Grandparents 186

Stepparents: Where Do You Belong-Back Seat or Front Seat? 188

Next Step: Be Family Focused Rather Than Illness Focused 191

Chapter 7 Mechanics of Working With the Medical Team 199

Who Is on Your Child's Medical Team? 200

Communicating Effectively With the Medical Team 201

At-Home Treatments and Medications 216

Making Pills More Manageable 226

Needle Fears: A Stick-y Situation 229

Next Step: Giving Your Child More Responsibility for Health Care Communication 233

Chapter 8 Mechanics of Working With the School Team 237

Civil Rights Laws That Support Your Child 239

The On-Ramp Back to School 247

Other School Avenues 248

When Your Child Refuses to Go to School 256

Dealing With Stigma 260

Bullying 262

Next Step: Take Action Against Disability Harassment 263

Chapter 9 The Cone Zone: Setting Healthy Boundaries 265

Mindful Listening and Talking 267

Letting Others Know What You Heed 279

Next Step: Help Your Child Set Healthy Boundaries With Others 282

Chapter 10 When Your Journey Includes Hospital Stays 285

Gathering Information 287

Preparing Your Child-And Yourself 290

In the Hospital 293

Dealing With Medical Procedures 301

Next Step: Learn About Comfort Care 312

Chapter 11 The Journey Through Death and Beyond 317

Making Impossible Decisions 318

Coming to the End of the Road 325

Next Step: Building Your Child's Legacy 337

Chapter 12 Concluding Thoughts: Building Resilience on the Journey 339

Resources for Your Journey 343

Notes 369

Index 395

About the Authors 417

What People are Saying About This

Miriam E. Goldblum

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. 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 patients 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.

Jess Stainbrook

Frank J. Sileo's and Carol S. 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. Their tips and wise counsel for accepting the “new normal” and having a PLAN (Putting Life into Action Now!) are life-giving, as is their advice for speaking up (“If you don’t ask, you don’t get”) and maintaining your own 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.

Deborah Vilas

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 topics that affect children and their families—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. This much needed book takes a holistic approach to a lifelong parenting experience, addressing the needs of heart, body, mind, and soul for the whole family.

Robert Gabbay

This outstanding book 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.

Jeff Hitchcock

When your child is diagnosed with a chronic illness like Type 1 diabetes, your world stops. You have days, perhaps weeks, to learn and master life sustaining care for your child. When Your Child Has a Chronic Medical Illness is a comprehensive guide to help parents 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. As the authors write, “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 the skills to give your child, and your family, the best life possible.

Kelly Briggs

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, you will learn the importance of taking time to reflect, connect, and honor their feelings with a sense of hope and support. This book demonstrates how you can 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 for 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 your feelings of purpose and well-being, moving beyond merely coping and creating a pathway to thrive.

Crohn’s & Colitis Foundation

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 & Colitis Foundation

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.

Allison Morgan

This book is an essential resource for helping families overcome the daily obstacles and uncertainties of caring for a 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. Sileo and Potter bring the physical and emotional well-being of the caregiver to the forefront, with resources and tools such as mindfulness, spirituality, and humor. This book provides a well-rounded approach to caring, parenting and loving your child with a chronic medical illness.

Lisa B. D’Acierno

Dr. Frank Sileo and Carol Potter have inspired me with their work. This book is crucial for parents as well as for 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 who was once a 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

Dr. Frank Sileo and Carol Potter have inspired me with their work. This book is crucial for parents as well as for 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 who was once a 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.

Julia S. Buckley

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. The authors’ 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.

Editorial Reviews

01/04/2021

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. The authors first focus on helping parents take care of themselves so they can better care for their child: Sileo and Potter validate emotions such as stress, anger, fear, and guilt, and suggest mindfulness techniques to combat burnout. From there, they touch on specific parenting skills, such as communicating with a child about their illness honestly and age-appropriately (“younger children may understand things better with pictures,” they advise). The authors also touch on medical practicalities, such as understanding how to work with a child’s medical team, helping a child adhere to a medication plan, and managing a hospital stay (one way to tackle boredom and homesickness is to ditch screen time limits). 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. (Feb.)

Publishers Weekly

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

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. 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 RDNOwner, 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

From the Publisher