Supporting Parents Through a Child’s Medical Diagnoses: Spotlight on Case for Smiles’ Coping Space

Supporting Parents Through a Child's Medical Diagnoses Spotlight on Case for Smiles_ Coping Space

Guest Blogger, Cindy Kerr from Case for Smiles

As child life specialists, you understand the importance of providing support to children and their families. So much of what you do every day – from addressing parent’s concerns about a diagnosis to helping kids find the words to express how they are feeling – is centered on advocacy and providing relief, which are both essential to fostering positive coping techniques.

Ensuring that kids are at ease during hospital stays has personal importance to me. When my late son Ryan was diagnosed with osteosarcoma over a decade ago, I searched for ways to bring a smile to his face. One of the things I did was sew whimsical pillowcases to brighten up his hospital bed (you may have seen them at your hospital).

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Ryan’s legacy lives on through the nonprofit organization Case for Smiles. Our mission is to help children and their families cope with the stresses of life changing childhood illness and injuries.

From the beginning, our primary focus has been on working with volunteers to sew and distribute pillowcases to children in hospitals (1.7M delivered to 362 hospitals so far), and it still is. However, we realized that there was more that could be done to provide emotional tools that promote healing. That is why we launched a comprehensive online resource called Coping Space, which is designed to help families, schools, communities, and health professionals find information on medical trauma.

The impetus for creating Coping Space came from what my family experienced after Ryan’s diagnosis. My life lost all sense of normalcy, and I worried about so many things when it came to Ryan and his two sisters, and of course my husband Gavin. During hospital visits, the staff was very helpful, but then I would come home and forget to take care of myself. I thought, like many moms do, that my role was to keep everything together. I pushed the anxiety and worry to the backburner and soldiered on, which in hindsight I realize wasn’t the best thing to do. To this day, I still experience symptoms of PTSD, which I now know isn’t uncommon.

Through my work, I’ve had the privilege to know leading Clinical Psychologist Dr. Anne Kazak, who writes extensively about the ongoing distress that some parents experience after a child’s illness. In one study that Dr. Kazak did on pediatric cancer, she found that 20% of families (30% of mothers) observed had at least one parent who had PTSD and posttraumatic stress symptoms (PTSS), which include:

  • Reexperiencing the trauma through triggers
  • Avoidance
  • Feelings of emotional numbness
  • Hyperarousal (jumpiness, altered sleep patterns, trouble concentrating, irritability, feeling threatened)
  • Constant fears and anxiety

These shocking PTSD rates are comparable to combat veterans. However, there is hope. What research has found on a consistent basis is that symptoms of trauma can be lessened, and wellbeing optimized through coping methods aimed at reducing stress.

The resources at Coping Space were written in partnership with leading pediatric stress and cancer organizations who lent their expertise to help create content for the site: The Center for Pediatric Traumatic Stress (CPTS), co-located at the Children’s Hospital of Philadelphia (CHOP) and Nemours/Alfred I. duPont Hospital for Children; The Devereux Center for Resilient Children; and Alex’s Lemonade Stand Foundation.

We offer tips, strategies, and support that can be used before, during, and after a child’s hospital stay. The resources at Coping Space are continually updated and expanded, for instance, there is a blog where we hope to share coping stories. As child life specialists, you know that there are not many vetted online sources for information to share with young patients and their families. We are proud that Coping Space was created with extensive input from our Associate Director, who is trained as a child life specialist with knowledge of how effective the coping recommendations are at reducing symptoms of stress and trauma.

From the beginning, Coping Space was conceived to expand the focus from concentrating on the ill or injured child and their parents to reach a wider variety of audiences. Currently, the Coping Space resources are designed for children, siblings, parents, caregivers, the community, and schools. We also offer a special section on resilience because developing the ability to bounce back from adverse situations is critical to coping.

The work you do as child life specialists is invaluable. I understand the effort and time spent assembling materials to respond to a family’s needs. I also know that there is no one-size-fits-all coping solution. My hope is that Coping Space becomes a go-to place that provides comprehensive materials—digitally and in print—that you can use to help children, families, and friends cope with a life-changing diagnosis in childhood.

Visit Coping Space today at www.copingspace.org and be sure to follow on Facebook, Twitter, and Instagram.

Restoring Resilience in Teens: Spotlight on Shadow’s Edge

Restoring Resilience in Teens Spotlight on Shadow's Edge

Guest Blogger, Garth Sundem from Digging Deep

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Shadow’s Edge is the first FREE game designed to build resilience in teens with serious health conditions. In the game, teens 13+ are transported to the city of Shadow’s Edge where they have an opportunity to revive a city left dark and disrupted by a storm. It’s the players’ quest to find and write on journal pages and to express themselves by making graffiti. Through their self-expression, players bring vibrancy back to the city. Along the way, they have help — the Guardians of Disruption, Disillusionment and Discovery, who send players on missions to look inside themselves for answers to tough questions and discover wisdoms hidden in the city. As players heal the city, they heal themselves. And through in-game community, players can share their words and art with others, building camaraderie and understanding that they are not alone in their struggles. Reviving the city alone, teens can explore the issues surrounding their illness. Together, they can spread what they learn. At the end, they can look back to see how truly far they have come. That is Shadow’s Edge.

Learn more about the game at Digging Deep and Shadow’s Edge sites!

Related Articles:

Empowering Adolescents Through Journaling: Spotlight on Digging Deep 

Connecting Families Together at Camp Sunshine in Sebago Lake

While attending the Association for Child Life Professionals conference this past May, I had the pleasure to meet the representatives of  Camp Sunshine. I wanted to share this amazing organization, so we can better support the families we work with and also volunteer our time as a camp counselor.

Camp Sunshine Logo

Camp Sunshine provides retreats combining respite, recreation and support, while enabling hope and promoting joy, for children with life-threatening illnesses and their families through the various stages of a child’s illness.

Camp Sunshine is the only program in the nation offered year-round with the distinction of having been designed to serve the entire family in a retreat model. The program is free of charge to families and includes on-site medical and psychosocial support. Bereavement sessions are also offered for families who have experienced the death of a child from a supported illness.

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A cost-free, year-round retreat on the shores of Sebago Lake in Casco, Maine

In 2017, nearly 700 families from all over the world will have attended Camp Sunshine’s one-of-a-kind retreat in Casco, Maine.

When families first hear about Camp Sunshine, their initial reaction can sometimes be: “My family gets to go on a free trip to Maine? What’s the catch?” But when they begin to do research and speak with Camp Sunshine’s Family Support Team, they quickly realize that there truly isn’t a catch and that the program is simply designed to be a safe, tranquil place for families to relax, reenergize and restore hope for the future.

“The transformation that happens during a Camp Sunshine session is one of love, kindness and hope,” explains Camp Sunshine’s Psychosocial Director, Nancy Cincotta, MSW, MPhil. “The challenges each person in the family faces outside of Camp Sunshine are incredibly complex, which is why it is so important for us to create communities of support for each member of the family, so they know they are not alone on their journeys.”

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Sessions at Camp Sunshine are designed to restore a sense of normalcy by offering families the ability to be around other families who are going through similar challenges. All campers (including siblings and parents) are able to participate in many exciting activities year-round like performing in the talent show, bass fishing, swimming in Sebago Lake or in the indoor pool, challenging themselves on the ropes course, and even snowshoeing, ice-skating and sledding in the winter. It is Camp Sunshine’s goal to educate, inspire and empower all families, preparing them to return home reinvigorated.

Creating Sunshine for Others

“The important connections that are fostered when a family walks through one of Camp Sunshine’s three, iconic front doors does not happen without the kindness and support of many people, including our generous donors, volunteers and families,” explained Camp Sunshine’s Executive Director Michael Katz. “There is nothing more inspiring than to have a family share with us that Camp Sunshine has changed their lives and in some instances saved their lives,” Katz continued. “We are so thankful to our donors and volunteers for helping us continue to create sunshine for these families.”

If you know a family with a child who has been diagnosed with a life-threatening illness, please consider referring the child’s family to Camp Sunshine. Camp Sunshine is still accepting applications for illness-specific fall and winter retreats in 2017. Session dates for 2018 will be released in early December. Please email info@campsunshine.org for more information. Family and volunteer applications can be found online.

Be sure to follow Camp Sunshine on Facebook, Twitter, and YouTube.