Resources to help you thrive
For Parents:
Parent Toolkit: Strategies for Maximizing Your Child’s Health
Children’s Hospital Colorado put together a comprehensive set of resources to help parents best take care of their child with chronic illness. Sections include “Building Resilience in Families with Chronically Ill Children,” “Navigating the Medical System,” “Helping Your Child Cope with Medical Procedures,” and more.
Retreats, Camps & Recreational Programs for Chronic, Serious or Life-Threatening Illnesses.
Children growing up with a chronic disease sometimes miss out on experiences other kids take for granted. This list of programs and camps for kids living with illness was curated by the nonprofit NeedyMeds, a national information resource to help people find assistance with health care costs.
Parenting a Child with a Life-Limiting Illness Toolkit
Created by Global Genes a nonprofit dedicated to aiding those with rare diseases, this toolkit features practical information about caring for the whole family, dealing with health insurance and understanding various medical devices.
For Child Life Specialists:
Extreme Parenting: Parenting Your Child with a Chronic Illness
This book by Sharon Dempsey covers a range of topics and different stages throughout a child’s development. It addresses hard questions, such as how to tell a child about their diagnosis, and lists advice at the end of each chapter.
The Invisible String by Patrice Karst
Patrice Karst is the author of the bestselling, contemporary classic children’s (and adults’!) book The Invisible String, which has sold over 1.5 million copies and been translated into seventeen languages. It is the story of the String (made out of love!) that connects us all. The Invisible String book series offers children a tangible understanding of love and teaches the world about the String that “even though you can’t see it with your eyes, you can feel it in your heart and know that you are always connected to everyone you love.”
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change by Marge Eaton Heegaard
An excellent resource for helping children learn the basic concepts of illness and various age-appropriate ways of coping with it.
Mindful Kids, No Worries from Kane Miller Books
Featuring activities and fun exercises that tackle childhood anxiety and stress, this book is designed to give children the tools to understand why they feel what they feel, discover ways to work through their feelings and find a way to regain happiness, peace and calm. Filled with age-appropriate drawing and writing for helping kids deal with emotions.
The Great Katie Kate Tackles Questions About Cancer by M. Maitland DeLand
When Dr. Demarco explains to Suzy that she might have cancer, the young girl begins to worry. Just then, the Great Katie Kate zooms in to ease Suzy’s mind and help her stare down the Worry Wombat. She takes Suzy on a magical tour through the hospital and explains what cancer is all about and, more important, how it is treated. As Suzy learns more about her condition, she learns to ask questions and even to smile, which makes the Worry Wombat disappear. This superhero saga provides an entertaining and indispensable tool for parents and medical professionals who are seeking a positive way to set young cancer patients on the road to recovery by helping them deal with their fears. With Katie Kate coming to the rescue, children with cancer have a friend they can trust.