Monday August 29, 2022
Children need a lot of support when they begin or return to school after treatment for cancer. Child Life Specialist and Elementary School Teacher, Meagan Fuller, explores how child life specialists in schools can help children with retinoblastoma adjust to school life, understand their experience, and find healthy ways to talk with peers about their cancer and visual impairment.
Medical play lets children dress up and “BE” the doctor, explore real and toy medical equipment, and carry out procedures on medical dolls. They can blow bubbles with sedation masks, and even get creative with syringe splatter paintings, and IV tubing bracelets. This is a safe and fun way for children with cancer, their siblings and friends to become familiar with medical materials and processes in a non-threatening way, to practice routine procedures, and gain mastery.
Retinoblastoma and School Life
Retinoblastoma is an aggressive eye cancer affecting babies and young children. It can affect one or both eyes and typically develops by 2 years old. Some children are born with tumors already formed.
Relapse of retinoblastoma within the eye is very common after eye salvage treatment. Many children continue to experience relapse into their early years of schooling (ages 4-8), and some are still in treatment or follow up care into middle-school (above age 11). While it’s rare for children to still be in treatment beyond age 8, this is happening more often as newer eye-salvage treatments are used.
All children who have eye salvage therapies will have eye exams under anesthesia for at least 3 years after the last active tumor. So it is common for children to be continuing these exams through the first years of school, even though most treatment is complete before their formal education begins.
Children in treatment and beyond experience issues around the effects of treatment, including sight loss, prosthetic eyes, and being and feeling “different”. Having support to process their medical experience as they enter the new school environment can positively impact their life in many ways. Child Life Specialists can provide this support, in collaboration with the child’s educators.
The Association of Child Life Professionals defines child life in the following statement:
“Child Life Specialists are educated and clinically trained in the developmental impact of illness and injury. Their role helps improve patient and family care, satisfaction, and overall experience.
“Infants, children and youth confront a wide variety of stressful and potentially traumatic events that can impact their ability to cope. These experiences related to healthcare can lead to feelings of fear, confusion, loss of control and isolation that can inhibit their development and have negative effects on their physical and emotional health and well-being.
“In both healthcare and community settings, Certified Child Life Specialists help infants, children, youth and families cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement. They provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education to reduce fear, anxiety, and pain.”
Child life specialists have different titles around the world, including Hospital Play Specialist and Child Life Therapist. In the school setting, they may be dual-qualified, working as classroom teachers, counsellors, Emotional and Behavioral Specialists, and in other roles. WE C Hope’s extensive Child Life section provides more information about what child life professionals do, where they work, and how child life supports help children through the trauma of retinoblastoma.
Why Do We Need Child Life in Schools?
Child life specialists within a school setting can help retinoblastoma survivors and patients cope with their medical journey, and talk about their cancer and its treatment and impacts with their peers. The child life specialist will minimize the emotional stress of entering or re-entering the school system, ensuring the child is well equipped with the necessary tools to have a smooth transition to school life.
They will support the child with psychologically and developmentally appropriate methods such as preparation; therapeutic play; and assessing psychosocial needs. They will provide resources to normalize medical procedures and reduce anxiety, fear, isolation, and feeling ‘different’. It is very important for the child to form a trusting relationship with the child life specialist as their supporting adult.
Going through a medical process can place a lot of stress on the child and their family, especially when the child is starting school, or going back after medical care.
The hospital-based child life specialist can create a transition plan to help the school’s child life specialist ease fear and provide a feeling of security and trust for the child.
The school’s child life specialist can educate people within the school environment about retinoblastoma. Increased awareness and understanding among staff and classroom volunteers will support the child’s normal developmental needs, and consistently help them manage feelings, and navigate the cancer and its effects in the educational environment.
Child life specialists pay close attention to the following, gathering information which helps with the transition from hospitalization and ongoing medical care to school life. They assess:
- The child’s ability to socialize with peers.
- The child’s play abilities in a therapeutic play environment.
- The child’s pain, which can impact their interaction in social settings, school attendance and completing schoolwork.
- Changes in the child’s social-emotional behavior feelings of exhaustion or illness.
Child life specialists use their professional judgment to gather information for their assessment. It helps tremendously when the family tells the child life specialist how they feel their child is doing, including physical and emotional stressors, and recent or upcoming medical experiences.
The child life specialist uses this information when identifying children’s changes in play or study skills. From the parents’ information, together with their own observations and assessments, they will make and follow a plan, and report back to the parents about how the child is doing.
How Can Parents and Teachers Access Child Life Services?
For many families and teachers, there are no child life specialists within the local educational authority to support the student and help them discuss their medical experience. Here are a few practical suggestions if this is your experience:
- Talk with your school’s special education team and social worker about the support your child needs relating to their medical experience.
- Ask whether any staff in your school are also trained child life professionals.
- Talk with the hospital’s oncology social worker, who is often the hospital-school liaison with responsibility for special education supports.
- Contact the child life department and/or hospital-based school teachers at your local pediatric hospital, or at the hospital where your child or student receives cancer care.
- Search the Association of Child Life Professionals website for articles/blogs on ‘ways to support children at school’.
Below are three articles from the ACLP resource library.
When facilitated by a child life professional, co-creating a group board game can be a transformative activity for older children and siblings living with a complex medical diagnosis and the stress it generates, and for their friends and classmates whose understanding and support is vital. This large floor board game was made from a table cloth.
Retinoblastoma Survivors and Patients Attending School
Children want to be included and feel part of a group; no child wants to be excluded. Elementary years are crucial in every child’s development. Some school-age children, are concerned with their body image, and can have self-esteem issues. This is not confined to children with a complex medical history or visible difference, but can be especially intense in children who experience hair loss, vision loss, eye-removal surgery, and other effects of treatment. They go through the grieving process to accept their new reality.
In the best support team, health care providers, social work, hospital child life specialists and family members will work with the school child life specialist to ensure appropriate resources are provided during the child’s transition into the classroom.
Around the world, child life services within a school system are very limited. Having them readily available to children, their families and educational staff can greatly reduce fear, pain and preventable uncertainties.
Within the school system, the child life specialist, homeroom teacher, resources team, family, and administrative team should work together to form a collaborative plan to integrate the child into school. This is not a one person approach; the combined support and services of everyone in the educational system can make a ‘huge difference’ to the child who has had multiple visits to the hospital and missed days of school, or who is starting school after months or years of treatment-disrupted life.
Child life specialists can help the child feel a sense of normalcy, interacting with their peers at school and completing classwork. While reducing the risk of long-term psychosocial issues, stress and anxiety so they can grow to their full potential.
Growth and Healing Through Play
Children of all ages learn and can express themselves through play. Play is the number one way in which children in every culture communicate with each other.
Piaget’s theory on cognitive development can help us to understand the four stages of play that school age children go through. Retinoblastoma patients and survivors will join in play activities with their peers, but how they play may look a little different for various reasons. For example, due to sight loss, having a prosthetic eye, the treatment they have received, or follow up care procedures.
The child life specialist can work together with the educational staff to develop a thorough and appropriate plan of action. Below is a chart from Jean Piaget that explains children’s stages of play, and areas where the child life specialist can adapt play for retinoblastoma patients and survivors. In school, they will focus on ages 4-5 (preoperational) and 6-12 (games with rules).
|Age||Stages of Play||Developmentally Appropriate Opportunities Facilitated by Child Life Staff|
|Birth- 1 Year||Sensorimotor||Tactile, visual, auditory, and kinetic stimulation such as:|
• Positive touch, face-to-face contact, singing and talking, and rocking or swinging.
• Walks in a stroller, tummy time and positioning for exploratory play through grasping, reaching, sitting, crawling, standing and walking.
• Opportunities to experience cause-effect relationships.
• Introduce colorful toys, books and changes in the environment; light, sound, textures.
|1-3 Years||Symbolic Representational||• Imitation facilitated through opportunities for parallel play.|
• Use of props for symbolic play and exploration of sensory materials such as paint, play dough, sand, water, big blocks.
• Increased exposure to language through talking, books, music, pictures and peer play.
|4-5 Years||Preoperational||Increased opportunities for both independent activities and associative play in groups. For example:|
• Playrooms set up to allow for choice of activity.
• Tone of activity (passive-quiet, active-physical).
• Individual or group play.
|6-12 Years||Games with Rules||Exposure to familiar, new and ‘safe’ activities, ideas and friends can be facilitated through structured play for appropriate interaction with materials and peers, e.g. Bingo, Tic-Tac-Toe, board and card games.|
Development of language and understanding of new concepts is encouraged through stimulating interactive programs like health-related games or experiments, and music or magic tricks.
Arts and crafts focused on the eyes open up opportunity for conversation with children about eye health, sight, retinoblastoma, prosthetic eyes, and the many impacts cancer has on the child’s life.
Above: Eyeball gift bags, created by children during an EyeLoveArt project.
Below: Children diagnosed with #retinoblastoma, their siblings, and supporting friends are superheroes. These kids had fun making their own superhero masks while sharing what makes each of them super!
Below are some tips for teachers educating children diagnosed with retinoblastoma, and how to adapt playful learning in elementary school:
It is vital to set up a classroom that will be suitable for your student with vision loss. For example:
- Help the child find the best seating so they can see what is happening – poor seating can result in headaches and neck pain, and loss of interest in school activities.
- Choose lighting that helps the child to see and minimises eye strain and discomfort – some treatments and drops for eye exams cause light sensitivity.
- Eliminate obstacles and don’t rearrange furniture without informing the child of specific changes, to ensure they can navigate safely and join in with ease.
- ASK the child and parents what adjustments will help them participate in independent and group activities.
The child will usually know what they NEED to have the BEST experience in the classroom. However, younger or more anxious children may need some guidance to identify the possible adjustments, and say what they need.
Children treated for cancer may have short and long term neurocognitive and psychological issues due to the types and doses of treatment they received. General anaesthesia, chemotherapy and radiotherapy, and eye strain or discomfort may cause children to be lethargic and less motivated to engage in very focused or energetic activities. Therefore, having a variety of activities – quiet and active – will allow the child to choose what they can and want to do, according to their fluctuating energy levels and capabilities.
When planning your lessons, please ensure your centers are developmentally appropriate and accessible for all learners in your room. By this, I mean having a range of gross motor activities (e.g. blocks, space for running around and dancing etc. outdoor play structure, obstacle course etc.) and fine motor centers (water play, painting, play dough, sand, etc.). And ensuring that adaptations are made, wherever possible, to ensure blind and partially sighted children can take part in those activities.
Example of tactile educational centers for kindergarten – grade 1 for math and language:
Please work with your SEN colleague and Teacher of the Visually Impaired to ensure your student has appropriately adapted materials.
Using linking cubes to create numbers
Writing numbers with play dough.
Building words using little block letters. From Kindergarten Literacy Activities
This activity can be adapted for a student with low vision by writing out the words with a tactile ink like tacti-mark. If the child is learning braille, ask the TVI to braille each word, and invite the child to copy using sticky-dots or pieces of playdough.
Using magnetic letters to spell names. From Mrs. Bremer’s Class
The nametag for a blind or visually impaired student is best placed near the doorhandle. so the child can easily locate it
Ask the child how they need their name to be written on the tag; for example, using a well-contrasting ink pen, braille, or tactile marker.
This Anchor Chart is taken from First Grader At Last.
Offering different ways to complete a task allows students with visual impairment to choose the approach that is best for them.
For grades 2 to 6, it is important that children who have gone through retinoblastoma, or are in active treatment or follow up care, be informed of the day’s plan. Being told what is happening and what will happen, gives the child some control in their lives. Serious illness and its treatment often destroys the child’s sense of control; when they know what to expect, they feel empowered and less anxious.
As their teacher, you will have the day planned, so it should be easy to explain what social and academic activities (both independent and group work) will take place.
A child in this age group will start to need an explanation of why each activity is happening. Knowing what to expect, they can form their own decisions. As the classroom teacher of a cancer patient or survivor, please keep this in mind.
When children engage in learning opportunities, they are really interacting, cooperating and playing with their peers. It is so important to offer a variety of choices for children coping with cancer so they can feel included, have autonomy, and opportunity to master new concepts they learn.
Helping Children Cope at School
The child life specialist and educational team should:
- Acknowledge the child may be encountering difficult thoughts and feelings, such as worry about transitioning to school and the next medical procedure, anxious about navigating the new environment with sight loss, fear of being left out.
- Validate the child’s thoughts and feelings – they will be expressing a wide range of emotions.
- Provide resources that can help with the transition to school.
- Learn about the child’s type of cancer, and provide appropriate resources for classmates to learn more, when the diagnosed child is ready.
- Provide age-appropriate ways for the child to talk about their cancer with their peers, if and when they wish to do so.
Child life, parents and the educational team need to work together to plan coping supports, and prepare the child for any changes that will occur.
Forming coping/relaxation strategies with the child is important so they have some skills and tools they can use during the day. These strategies can be used when the child is faced with an obstacle they need to overcome, when they’re feeling too overwhelmed to complete schoolwork or engage in the social environment.
Simple examples of coping strategies to have available in the classroom:
- Breathing exercises.
- Blowing bubbles.
- Imagery or other sensory prompts representing a child’s favorite place to visit, or favorite activity to do.
- Fidget toys.
- A quiet zone.
Mindfulness Jars help children calm high energy and big emotions.
The breathing dragon helps children concentrate on their breathing.
These simple calming supports are ideal classroom craft activities. Find text instructions and how-to videos for both in Megan’s blog post: Mindfulness Tips for Retinoblastoma Families and Supporting Teachers
Helping Children Explain Their Cancer and Visual Impairment to Peers
The child needs safe opportunities to explain their cancer and visual impairment experience to classmates. Creating a clear plan is crucial to ensure the child’s wishes are respected, and they are supported in the process. The plan will involve the multidisciplinary educational team (teacher, resource team, classroom education support worker and child life specialist), as well as the child and their family.
You will need to know what information the child is comfortable sharing with their classmates, and the way to share that gives them the strongest sense of safety. Your goal is to ensure the child feels included in decisions, and that they are in a safe place to share information about their cancer and/or visual impairment.
Most children know about cancer and sight loss because of a diagnosis affecting an adult relative, a celebrity or fictional character they like. What they understand from these experiences may be frightening – especially if the person with cancer died. The multidisciplinary educational team should normalize the words ‘cancer’ and ‘visual impairment’ so they become less scary for children to hear.
Many children with retinoblastoma have an eye removed to save their life. However, some children do not have this surgery and do not have a prosthetic eye. Some have perfect vision in one eye, while others have none in either eye. Please discuss with the parents and child what they have experienced, and what information and resources are appropriate to share.
The decision to share their story rests firmly with the child; they should never be coerced into sharing information they do not want to disclose. If the child wants to share their story, but feels uncomfortable doing so, help them find unique ways to build courage to talk with their peers. Ask the child what would help when explaining retinoblastoma and their personal experience. For example, the child may want to:
- Use a puppet to explain their cancer.
- Turn their back to the class while they talk.
- Leave the room when their teacher explains what retinoblastoma is.
- Share developmentally appropriate books or videos to explain the diagnosis in a non threatening way.
Providing medical play, expressive play and dramatic play opportunities will promote self-expression, mastery and therapeutic play for the diagnosed child and their peers. Both the teacher and child life specialist need to create a therapeutic relationship with the child, to build rapport and trust.
Developmentally age-appropriate tools/activities to talk about cancer
These approaches can help individual children and student groups learn and talk about cancer and visual impairment.
4-5 Years Old
- Use puppets/stuffed animal (some are available with prosthetic eyes)
- Storytelling – a range of picture books about retinoblastoma are listed on our Advice for Teachers page.
- Dramatic play
- Medical play
- Expressive play
6-12 Years Old
- Games with rules – ask the child if they would like to create a game (e.g. Kahoot or a physical board game) to explain their cancer to the class.
- Use puppets/stuffed animal
- Show videos
- Allow children to talk to and with their peers
- Medical play
- Expressive play
Between the ages of 6-12, children begin to think logically, and want more concrete explanations of the concepts they are learning about.
For children of all ages, including eye-focused medical play and expressive arts play can help reduce fear of vision loss and prosthetic eyes, and ease the flow of conversation about both.
The child life specialist can be instrumental in the integration of retinoblastoma patients and survivors into the classroom. Their special training allows them to be the liaison between school, hospital, and family. They help the child to overcome challenges, empowering them to reach their next milestone and develop to their full potential.
Hospital based child life specialists are increasingly working with families and teachers to support transition and conversations about cancer (and other medical histories). The number of school-based child life specialists is slowly growing, but their services in the classroom remain rare. Many children around the world do not yet have access to child life supports even within the hospital.
Wherever possible, we encourage the integration of child life in the classroom. They can support children with complex medical and/or psychological diagnoses; occasional medical care due to illness or accident; and other traumatic life experiences. Their knowledge and expertise can support educators, and help all children thrive in the classroom.
Creating a Personal Story Book is an esteem-building expressive arts and literacy activity, encouraging children to create a narrative about all the things that make them wonderful. With some guiding statements like “I am….” and “I can…”, children share their thoughts, feelings, and experiences. Their personality shines through as they illustrate their book with drawing, collage and scrapbook art materials. This can be a creative way for all students to share important things about themselves with their classmates. Visit our step-by-step guide to creating Personal Story Books.
About the Author
Meagan Fuller is a Certified Child life Specialist and Certified Teacher in Ontario Canada, with a BA honors degree in Child Studies. She has worked as a Child Life Specialist at the Children’s Hospital of Eastern Ontario, and is currently teaching grades 1 – 6. Meagan always envisioned herself working with children to positively impact their lives; From an early age, she knew she wanted to work with children in the educational or medical environment. She is passionate for children and their wellbeing, and now advocates bringing Child Life into the school system.