Learning that child is diagnosed with a serious illness or medical condition is scary, overwhelming and often leaves loved ones unsure how to respond. Today’s Fabulous Find Friday, Coping Space, is a resource offering coping strategies for schools, parents/caregivers and members of the community. Partnering with experts in PTSD, the Coping Space is full of helpful tips for families coping with a serious diagnosis.
Today’s Fabulous Find is one of my favorite bereavement resources, Bare Heart Buddy! The Bare Heart Buddy was founded by a Child Life Specialist who was looking for something to use for families who were struggling with loss or separation. The Bare Heart Buddy comes in a pack of two teddy bears, both of which have a hidden pocket in their backs. These pockets can be used to save mementos from the loved one, put letters to the loved ones or just draw memories that were shared with the loved ones. I enjoy using them for bereavement with children because I give the child two teddy bears. One they can leave with their loved one in the hospital or in the casket, and the other can be kept with the child. This is a connection with their loved one that lasts long after separation.
There are many resources that can be given to families when providing bereavement support. Below are a few of my favorite things;
Bare Heart Buddy. I love these bears because they have a hidden pocket in them and come in pairs. This means that children can put notes in one for their loved one and leave it at the bedside or in the casket and then they can keep the other bear and put keepsakes in it.
Color Wonder is great for making hand prints. By painting the patient’s hand with a clear gel, it will come up on the magic paper. Their loved one, the parent or sibling, can then add their hands to the picture. Because it’s a clear gel, it’s not as messy as paint it. Although I do want to share with you all one thing that we always remind families, make sure to make color copies! The paint does fade after time to if you copy it, it will last longer.
Fire in My Heart, Ice in My Veins is a journal for teens. If you work with an adolescent population regularly, you know how hard it is to find resources to promote positive coping in teens. Books are either written for children or adults and teens are in this in-between phase where they need targeted support. This journal is specific for end of life situations and offers the reader many opportunities to write and draw their feelings. Because it’s aimed at teens, the wording isn’t so childish that teens feel babied by it but also not written so much for an adult that it loses the teens’ attention.
When Someone Very Special Dies: Children Can Learn to Cope with Grief. This is a journal for school-aged children about death. It focuses on how things change in life and opens a dialogue with children about what grief is.
The Invisible String is a book for school-aged children that talks about loving someone although they aren’t there with you. Because it’s not specific for death, this book can be used for a variety of losses and separation. When used in bereavement settings, it can help lead discussion about how although our loved one isn’t here with us they still love us and we can still love them.
A Terrible Thing Happened is a book for young children about when something bad happens. It talks about the feelings that children might have, like an upset stomach, and how it is helpful to talk to someone about how you are feeling. The terrible thing is vague throughout the book so that this resource can be used for pretty much any bad thing that happens, but it helps children recognize that these feelings are normal and it’s okay to talk about them.
What are your favorite bereavement resources?
In the Fall of 2017, I completed my internship at a Pediatric Unit within an Adult Hospital. Although the pediatric population was our primary focus, we also provided support to adults who were struggling to talk to kids about hospital issues. One of the main things we did was work with parents to explain a new diagnosis to their children. If the parent had just been diagnosed with cancer or needed an organ transplant, we would often meet with the families to talk more about what these changes would mean.
You could probably define our main job as translation. Parents know their children best so most of them knew what to say but they struggled with how to explain medical terms like cancer, chemo, etc. That’s where Child Life’s developmentally appropriate experience and knowledge of the medical environment was needed. We would chat with parents about their children and what they’re like and then suggest ways to define big and scary words like cancer.
We also provided affirmation. With many of the families that I met with, the parents knew what they wanted to say and how to do it but they were unsure if they were “doing it right.” When we explained to them that they know their child best and their desire to be honest with the children is most important, families calmed down. It was interesting to see how helpful it was for them to have someone else say, “Yes, you’re doing it right.”
Obviously there were so many resources we provided for the families. For the parents, we gave them Kathleen McCue’s book How to Help Children with a Parent’s Serious Illness. This book is an excellent resource that provided families with practical guidance for talking to children about illness and also death. Because it’s broken up into smaller categories, parents could focus on the area that they felt they needed help with and they didn’t have to read the whole book. Some general books that we provided families with for their children were When Someone Has a Very Serious Illness and A Terrible Thing Happened.
For the children, we would share diagnosis specific books for the families about whatever illness they were facing. There are so many books available for children about illness and the medical setting, but they aren’t easily found in your local library. As Child Life Specialists, we knew resources that were available and we could share them with the families.
Finally, I loved to give families Worry Eaters or give them instructions to make their own worry eater. What’s great about Worry Eaters is that it encourages kids to write down their questions and fears but they can share those thoughts when they feel ready or when the caregiver is ready. It often takes some pressure off both the parent and the child. There was one family that I met during my internship who I gave Worry Eaters to mom to give to her two school aged boys. For the rest of dad’s hospitalization, they carried those Worry Eaters with them wherever they went. We invited the boys to many hospital events that were happening for our pediatric patients, and they brought their Worry Eaters to every event.
Do you work in a setting where you help adults talk to kids about overwhelming topics? I’d love to hear more about your experiences in the comments below!
The STAR Institute for Sensory Processing Disorder is based in Colorado but their website offers research and resources for people everywhere.
STAR’s website offers education, research and a variety of resources for professionals and families who want to learn more about SPD. As Child Life Specialists, we often encounter kids in the hospital with Sensory Processing Disorder. Especially with all the varying stimuli that are present in the hospital, it’s important for professionals to understand SPD and learn how to best support their patients. The STAR Institute is a great place to get started.
The Three "Peas" of Child Life 