Lighting the way for children with medical complexity
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PPCC has assembled a number of activities designed to engage children and teens in thought-provoking, imaginative, playful and expressive activities. The activities selected are generally appropriate for all ages and can be done individually or in a group. They are designed to promote fun and togetherness, offer an opportunity to express feelings and emotions, inject humor and provide a welcome respite to daily stresses.
Most of these activities can be modified as needed. Each activity has a suggested materials list including everyday items commonly found around the house. All activities should be supervised by an adult.
This activity can be done one-on-one with a parent/caregiver. The child should write down (or explain to parent/caregiver) what is bothering him or her and understand from the adult that it is not always possible to “solve” or “fix” everything. Parents/caregivers can dedicate time to listen to their child’s concerns and offer help - if that is what the child wants. Sometimes just giving a child a time to talk is what they need.
This is an activity for a child to do independently with help as needed and then discuss with his/her parents/caregivers. The main goal of this activity is for the child to understand that he/she is just as important to the family as the sibling with medical complexities. It also helps the child understand that medical complexities do not define the family.
A photo collage is a great way to tell a story about special moments in time between siblings. By gathering personal photographs and pictures and/or words from a magazine or newspaper you can make a special memento that will help the child cherish the relationship with their family. Two suggestions are making the collage in special shape or the first letter of the child’s name.
This is an excellent activity for older children and teenagers. It gives them the opportunity to be creative and make their own journal, which they can use to write their innermost feelings about having a sibling with a medically complex condition. Once the older child or teen has written in his/her journal, he/she can decide whether or not to share and discuss any of the entries with a parent/caregiver in order to work through any concerns. Journals can contain writing and/or pictures.
Make a play list of favorite songs and music artists. Play the music and let the child dance. It’s a fun way to get moving. Capture the dance moves on video or with photos. Talk about different songs that they listened to at different ages. Are there certain songs that make them happy, sad, motivated? Have them think of songs from favorite movies or TV shows. In addition to movement this can be a powerful reminiscing activity.
This can be done one-on-one or together as a family. Being able to physically draw, write and visualize their fears can help a child work through them. It is also an excellent time for parents/caregivers to talk about these fears and help children create strategies to work through feelings of fear when they arise. It is also an excellent opportunity to educate the family on the specific medically complex condition. Toddlers, preschoolers, and other young children are at a certain developmental level known as “magical thinking” which means that they might think they caused their sibling’s condition, it is a punishment, or that they also will get sick (Ages & Stages: How Children Use Magical Thinking). It is essential to discuss that the child did nothing to cause their sibling’s medical condition and that it is no one’s fault.
This activity can be done one-on-one or as a family. It gives each participant an opportunity to put emotions into writing and illustrate anything they are feeling. It is important to discuss feelings and address any confusion, anger, sadness, etc. that is mentioned.
A collection of apps that range from meditation and yoga to fun play activities...
Build a blanket fort or a tent. If camping in the great outdoors is not possible all that is needed are a few blankets, a table, and/or a couple chairs to build a cozy fort. Children might like to take their stuffed animals inside the fort to play. Add flashlights and bring in favorite stories to read together.
The holidays are a wonderful time for gift giving and for siblings to be together. Feelings of generosity and kinship will blossom by giving the sibling a spending limit and letting them pick out gifts for their brother or sister. Siblings could also donate the gifts to a specific charity that supports their loved one.
Exercises to help in Grounding, Visualization, Belly Breathing, and Guided Relaxation...
Allow siblings to be in charge of a special event such as a birthday, National Sibling Day, or a holiday, etc. Let them plan the event from start to finish providing support as needed.
Being separated from parents/caregivers and their siblings can be a major concern for children. Oftentimes they may not know or understand what is happening when their sibling is in the hospital. This activity can be an excellent resource to explain to child(ren) what happens in the hospital and remind them that even though their sibling may have to leave home for a bit, they are always with them and love them. This booklet can be completed in different ways. The entire family can create it together, or the child with medical complexities can make it as a gift for their sibling and they can go through it together.
Books clubs are a great way to engage children and teens in reading while enhancing communication skills, socialization, and raising cultural awareness and differing viewpoints while discussing literature. Decide if a teen will be the leader of a book club for younger children or if this is a group for teens led by teens. Remember, virtual book clubs also work!
Ask the child to write a letter to his/her sibling telling them: Things that may be hard to express...
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
