When your child has a chronic medical illness A guide for the parenting journey

Frank J. Sileo, 1967-

Book - 2021

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 mindfuness part of your daily self-care routine, it offers guida...nce for choosing the right therapist for your family, should extra support be needed.

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Subjects
Published
Washington, DC : American Psychological Association [2021]
Language
English
Main Author
Frank J. Sileo, 1967- (author)
Other Authors
Carol S. Potter (author)
Physical Description
xv, 419 pages ; 22 cm
Bibliography
Includes bibliographical references and index.
ISBN
9781433833816
  • List of Worksheets
  • Foreword
  • Acknowledgments
  • The Unexpected Journey Begins
  • Why We Wrote This Book
  • What's in This Book
  • Our Stories About Chronic Illness
  • Our Hopes for You
  • Chapter 1. Navigating Your Feelings
  • What Is Chronic Illness?
  • Your Feelings Are All Over the Map-And That's Normal
  • How to Cope With Your Feelings
  • Next Step: Hope Helps You Cope
  • Chapter 2. Staying Healthy on the Journey
  • Burnout and Compassion Fatigue
  • Exploring Mindfulness Baths
  • Exploring Spiritual Paths
  • Next Step: Make Humor Part of Your Every Day
  • Chapter 3. Getting What You Need on the Road to the New Normal
  • "I Don't Have Time for One More Appointment!"
  • Finding a Therapist
  • Support Groups
  • Working With Your Insurance Company
  • Working With Your Employer
  • Be Persistent and Insistent
  • Finding Child Care and Respite Care
  • Next Step: Consider Participating in Clinical Research
  • Chapter 4. Communicating With Your Child: It's a Two-Way Street
  • Breaking the News to Your Child About Their Illness
  • Managing the Booster Seats: Talking With Your Preschool-Age Child
  • Teaching Them to Buckle Up: Talking With Your School-Age Child
  • Driving Lessons: Conversations With Your Teen
  • Next Step: You Can't Always Fix It, but You Can Be Present
  • Chapter 5. Your Copilots: Other Parents and Parent Figures in Your Child's Life
  • Staying Calm at the Wheel
  • When You're Driving Alone
  • Sharing the Wheel: When You Are in a Committed Relationship
  • Taking Turns at the Wheel: When You're Separated or Divorced
  • Next Step: Get That Engine Running More Smoothly
  • Chapter 6. Getting Everyone on Board: Siblings and Other Family Members
  • Bringing Siblings on Board
  • Bringing in Grandparents
  • Stepparents: Where Do You Belong-Back Seat or Front Seat?
  • Next Step: Be Family Focused Rather Than Illness Focused
  • Chapter 7. Mechanics of Working With the Medical Team
  • Who Is on Your Child's Medical Team?
  • Communicating Effectively With the Medical Team
  • At-Home Treatments and Medications
  • Making Pills More Manageable
  • Needle Fears: A Stick-y Situation
  • Next Step: Giving Your Child More Responsibility for Health Care Communication
  • Chapter 8. Mechanics of Working With the School Team
  • Civil Rights Laws That Support Your Child
  • The On-Ramp Back to School
  • Other School Avenues
  • When Your Child Refuses to Go to School
  • Dealing With Stigma
  • Bullying
  • Next Step: Take Action Against Disability Harassment
  • Chapter 9. The Cone Zone: Setting Healthy Boundaries
  • Mindful Listening and Talking
  • Letting Others Know What You Heed
  • Next Step: Help Your Child Set Healthy Boundaries With Others
  • Chapter 10. When Your Journey Includes Hospital Stays
  • Gathering Information
  • Preparing Your Child-And Yourself
  • In the Hospital
  • Dealing With Medical Procedures
  • Next Step: Learn About Comfort Care
  • Chapter 11. The Journey Through Death and Beyond
  • Making Impossible Decisions
  • Coming to the End of the Road
  • Next Step: Building Your Child's Legacy
  • Chapter 12. Concluding Thoughts: Building Resilience on the Journey
  • Resources for Your Journey
  • Notes
  • Index
  • About the Authors
Review by Publisher's Weekly Review

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.)

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