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When Your Child Has a Chronic Medical Illness: A Guide for the Parenting Journey
419Paperback(First Edition)
Overview
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 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 is the 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
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Product Details
| ISBN-13: | 9781433833816 |
|---|---|
| Publisher: | American Psychological Association |
| Publication date: | 03/09/2021 |
| Edition description: | First Edition |
| Pages: | 419 |
| Sales rank: | 519,184 |
| Product dimensions: | 5.50(w) x 8.40(h) x 0.90(d) |
About the Author
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.