Save My Seat: Helping Children with Cancer Achieve Normalcy and Fight Isolation by Getting Back to School

What if children fighting cancer had the support they need at school through innovative solutions that engage peers, parents and educators?

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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

We had a young patient, 6 year old Brianna was fighting a brain tumor with the help of her parents, autistic brother Luke, compassionate doctors, and helpful educators. Brianna could not attend school during treatment and was on Hospital Homebound, causing her to feel different, isolated and alone. She got the education she needed, but not the relationships and socialization. Upon her re-entry to school, we did a meeting with school staff to talk about her unique needs - limited physical activity and contact sports due to her treatment and a port surgically-placed in her chest. Brianna also looked different due to radiation to her head to shrink the tumor and kill the cancerous cells. She wore a wig and hat to hide the permanent hair loss she experienced. In fact, she had a patchy re-growth that left her uncomfortably self-conscious. On her first day at a new school, starting mid-year she knew no one. Her class went to the computer lab where the teacher tried to be helpful to Brianna without singling her out. The teacher and other students immediately began working on their computers, focusing attention on their tasks. No one noticed at first that Brianna had to remove her hat and wig to get the headphones to fit. The teacher eventually noticed and made a mental note to help Brianna at the end of class, but she got distracted. She panicked internally when she realized class was over and she had forgotten. But when she looked over, three 1st grade girls were helping Brianna!

Which categories describe you? (the answer will not be public)

  • White (for example: German, Irish, English, Italian, Polish, French, Caucasian)

Website

Our website is http://postfl.org.

Location: Where is your organization headquartered? [State]

  • Florida

Location: Where is your organization headquartered? [City]

West Palm Beach

Location: Where is your project primarily creating impact? [State]

  • Florida

Location: Where is your project primarily creating impact? [City]

West Palm Beach, Boynton Beach, Lake Worth, Jupiter, Juno Beach, North Palm Beach, Palm Beach Gardens, Lantana, Wellington, Royal Palm Beach, Loxahatchee, Pahokee, Belle Glade, La Belle, Clewiston, South Bay, Tequesta, Hobe Sound, Stuart, White City, Palm Bay, Port St Lucie, Ft Pierce, Vero Beach, Port Salerno, Okeechobee, Indiantown, Fellesmere, Boca Raton, Delray, Atlantis

Problem: What problem is this project trying to address?

Children with cancer are unable to attend school due to treatment and immune suppression issues. They miss out on school, as well as the normalcy and socialization that school provides. Their isolation is profound. Young cancer survivors face issues such as insecurity, teasing, and disruption in peer bonding and social skills.

School is a lever for change, a barometer for how integrated a child is to normal activities. Children who succeed in school are more likely to be happy later in life. They have more opportunities and are more likely to go to college.

As a microcosm of society, school is where children learn about their place in the world, encounter other worldviews, and practice life skills. Returning to school builds hope for the future, allows for socialization, and promotes a sense of normalcy in a difficult time.

Engagement is the key to children growing up with a strong sense of self, purpose, and belonging. Multiple channels need to converge to create diverse ways to address this complex issue. We have developed new approaches for children fighting cancer to cultivate meaning and purpose. Strategies include building space for collective, community healing and open discussion among families, peers, and the child them self to explore identity and trauma related to cancer.

  1. Through education, we engage patients and other students to become part of the solution. Patients are invited to tell their own stories and coached in mediums that would make that possible and accessible. But just as important are the relationship opportunities and normalcy that school provides. The ability to make friends is vital to a child’s healthy development. Children who have friends at school tend to have better attitudes about school and learning. And they are exposed to different cultures, differing attitudes toward life, and different points of view.
    • A stuffed animal in placed in the classroom seat of the missing school peer to serve as a liaison between the patient and his/her classmates. The animal “carries messages from the patient,” “collects schoolwork on behalf of the patient,” and is a repository of questions the peers have about the absent patient. It serves as a seatholder – a reminder that the patient is still part of the class – a visual reminder of the student’s place in class.
    • Medical puppets, Marc and Corky, are used to explain the child’s medical diagnosis to the class and engage classmates in learning about the diagnosis, treatment, and empathic responses.
    • Students are assigned tasks with regard to the patient: report bullying; escort patient to lunch, class, etc.; be friendly.
    • Students send get well messages to sick peers.
    • Students help convey the class efforts to make missing peer feel included and important.
  2. Parents and patients are coached by therapists to become “experts” that function collaboratively with the class peers and school staff.
    • Patients are coached by therapists to tell their stories to the class either by talking conversationally, reading from a written text they create, or another medium such as video or photos.
    • Parents are taught how to advocate effectively on behalf of their child with professional support from POST.
  3. We create support systems for parents, educators, and caregivers, such as peer support groups and workshops that strengthen children’s emotional wellbeing and make school a safe space.
  4. Educators are informed about the difficulties patients face with regard to school and peer challenges so that they are alert for any issues and have a response plan.
  5. Neuropsychological evaluations will be made available to each child who needs one. Long-term side-effects often include cognitive deficits that impact school performance as much as frequent extended absences. Nine year old Jeff had kept pace with peers on simple math problems, but suddenly has trouble learning a new skill like multiplication. Quite simply, the disease, the treatment, or both cause damage to the brain's support cells, nerves and blood vessels. In turn, the damage slows the brain's ability to process or exchange information, making it difficult for the child to make the connections required for new developmental learning to occur. A neuropsychological evaluation report provides valuable information and serves as a guide for parents and school professionals creating a 504 plan or IEP.

All of these strategies come together to make school not only a safe space, but a designated place of transformation.

Is your model focused on any of the following traditionally underserved communities?

  • Children who are differently abled

Does your model work within any of the following sectors?

  • Education

If you chose "other," please share the sector you work within here:

The medical community, specifically pediatric oncology

Year Founded

1998

Project Stage

  • Growth (the pilot has already launched and is starting to expand)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

Upon return to school 12 year old Leslie was told by a peer, “We thought you were dead.” She was mortified, and no longer wanted to attend school. School was designated a safe space and everyone works toward that goal - children, parents, and school staff. A POST care team member would met with the child and family to discuss their needs and desired outcome using puppets and dolls. Children often express fears openly, which makes it possible to address and overcome them. The therapist set a time to meet with the school, and coached the parent and child in their roles as "experts." The child decided she want to tell her own story instead of an advocate such as parent or professional doing it. It has been very successful and Leslie is happy.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

We impacted over 100 families last year. The majority of the evaluative work on this project is mixed methods, including both quantitative and qualitative. Using the voice of the affected child is powerful in helping us learn to hear the lived experience of a child faced with this daunting set of circumstances.
Parents completed a questionnaire and then families were interviewed to develop themes from the rich data. Some of the most compelling data was the child's sense of accomplishment, agency, purpose, and meaning in overcoming their fears about educating their classmates. With regard to the parents, they felt empowered by advocating for their child.
Without this solution, children floundered in school, felt helpless and impotent, and had a much higher failure rate than children who received the support and coaching.

Organization Type

  • nonprofit/NGO/citizen sector

Annual Budget

  • $250k - $500k

Financial Sustainability Plan: What is your solution’s plan to ensure financial sustainability?

POST receives funding from Dana-Farber Cancer Institute and we apply for other grants and community funding. The bulk of our funding comes from generous individuals and organizations. We will continue seeking funding to grow this project.

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

Large tertiary cancer treatment centers have psychologists, social workers or child life specialists who will either speak to parents about their child’s school needs or might do a classroom presentation if the school is very close to the hospital. POST not only meets with the patient to make a customized plan, but goes to the classroom (regardless of where it is within our 6 county service area) to help the child present about their disease and engage other students. There are no other programs like this.

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

The most promising shifts in children’s well-being are derived from social entrepreneurship among youth - engaging kids to help other kids. Social media can truly be a force for good if utilized in the right way. Technology also helps spread the word in a timely way, whereas past information avenues were slow and unreliable.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Email

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

The Robert Wood Johnson Foundation

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Photo of Beecher
Team

Hi Barbara Abernathy, nice job on your submission and your wonderful work! I also work with pediatric cancer patients and am familiar with the isolation that children experience during cancer treatment- especially when they have a bone marrow transplant and have to be in isolation for a full year. I'm curious to hear more about how you handle very long absences from school- and also thought it might strengthen your submission to mention how many BMT patients have to be out of school for an entire year. Thank you for the wonderful work you do! 

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