Below are Resources for Caring for a Child with a Chronic Illness
Book/DVD Resources (* denotes that I have read and/or personally recommend)
The Child Life Council Bookstore
No Fears, No Tears DVD
A Child In Pain: What Health Professionals Can Do
Coping in Young Children: Early Intervention Practices to Enhance Adaptive Behavior and Resilience
The Handbook of Child Life: A Guide for Pediatric Psychosocial Care
In Sickness and In Play: Children Coping with Chronic Illness
Extreme Parenting: Parenting Your Child With a Chronic Illness
Parenting Children With Health Issues
Your Child In The Hospital
Helping Parents of Children with Cystic Fibrosis CopeThe Unspoken Concern: Post Traumatic Stress Disorder in CF
Ideas For Helping Infants (birth - 1 year) Cope
http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/childrens-needs-by-age/infant.html
Ideas For Helping Toddlers (1 year - 3 years) Cope
http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/childrens-needs-by-age/toddler.html
http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/helping-kids-cope/supporting-coping-with-distraction-breathing-and-other-techniques.html
* Try to find several age-appropriate books to read with your child. Books offer factual information that may clear up any misconceptions or fears your child has about what happens at the hospital (tip found here.)
Ideas For Helping Children of All Ages Cope
* Find a distraction. Kids may feel less discomfort and stress if they blow into a whistle or party blower, count, sing, hug a toy, or think of something good when getting an injection. An older child might prefer to wear headphones or watch a video during injections (tip from here.)
* Purchase/wrap small tiny toys that the child can open each time they endure a painful procedure (tip found here.)
* Give your child choices such as "do you want to take your red pill first or your blue pill first?" or "do you want the IV in the left arm or in your right arm?" (tip found here.)
* Decorate the hospital room with bright posters, Mylar balloons, crepe paper streamers and/or the child to liven up a dull room (tip found here.)
* The Coping Club - a website made up of youngsters with and without CF who want to tell other kids how they enrich their lives despite their daily medical challenges
* The Starlight Foundation - A foundation that offers a comprehensive menu of outpatient, hospital-based and Web offerings that enable to provide ongoing support for children and families — from diagnosis through the entire course of medical treatment.
Helping Siblings Cope
* http://www.chop.edu/service/child-life-education-and-creative-arts-therapy/siblings-needs/
* Children with Disabilities: Understanding Sibling Issues
* Bring up siblings when people focus only on the sick child. For example, if someone exclaims, "Oh look how good Lisa looks," you could say, "Yes and Martha has a new haircut, too. Don't you like it?" (tip found here.)
* Give siblings gifts and tokens of appreciation for helping out during hard times. Encourage your sick child to share the many toys and gifts he receives to prevent hurt feelings or jealousy (tip found here.)
Other Special Needs Resources
* Parenting Special Needs Online Magazine
* Inspiration Through Art
