Bullying After Retinoblastoma: How to Help Kids Respond With Confidence

Monday November 11, 2019


Children diagnosed with retinoblastoma are especially vulnerable and sensitive to bullying due to treatment effects. Morgan Livingstone CCLS discusses what bullying is and isn’t, how parents can recognize the signs, and help young Rb survivors use stories and develop skills to stand up to bullies with confidence.


As a certified child life specialist, parent and human, I wish I could wave a magic wand and end bullying everywhere. Bullying is a complex problem we humans face at all ages and stages in our lives.

Image: The word “bullying” is positioned in the middle of a white circle, defined by a red outer line. A diagonal red line runs from top right to bottom left of the circle. Other words are seen in pale colours throughout the white circle. These words are:

The Facts About Bullying

Bullying can happen to anyone at any age.

Bullying can happen anywhere – at home, at school, at work, in the community.

Bullying is a learned behavior.

Bullying is repetitive.

Bullying involves an imbalance of power.

Bullying is intended to hurt and cause distress.

Bullying is an act of provocation – it is an action or words to make someone annoyed or upset, on purpose.

Bullying is no fun for anyone.

Excluding someone and leaving someone out of a group or play opportunity is called “Relational Bullying” and although it doesn’t physically hurt, it can hurt someone’s feelings.

Teasing is different than bullying, and takes place when two people playfully poke fun at each other and neither person feels upset or hurt. Teasing is all in fun and all the people involved should have a good laugh. Teasing does not include anything about someone’s differences, such as appearance, speech, religion, ethnicity or gender. Unless that person directly chooses to make light of their own experience, and invites others to share in the humour of the moment.

People Are Curious

Everyone is different: people are curious about facial differences.

It is human nature to be curious. Despite the fact we all know (and LOVE) that everyone in the world is unique, children and adults with facial differences often find people are especially curious about their faces and what makes them different.

Young children and youth who have received treatment for retinoblastoma may have a prosthetic eye(s), glasses, or a special eye patch, in addition to physical side effects such as strabismus (a misaligned eye), nystagmus (uncontrolled eye movements), or watery eyes and discharge at times. All these visible differences can cause other children and adults to be curious, and even ask questions or make comments.

Most of the time, the looks and the questions are not meant to hurt the child. But sometimes those questions, comments, and long stares are mean-spirited and harmful. Although almost all children will experience these behaviours at least once in their lives, children with facial differences will be more likely to experience taunting and other forms of bullying than their peers.  They may be especially sensitive to it, and validating their experience is vital to build trust that can overcome it.

Bullying comes in many forms, including:

  • Taunting
  • Physical aggression – hitting/pushing/kicking
  • Staring – frequent, long and intimidating stares
  • Excluding a child(ren) from a group
  • Cyberbullying/online/social media

All these forms of bullying are harmful, and kids need help from their friends and the adults in their life to help them deal with bullying.

Signs of Bullying

Many children and youth who have been bullied can experience low self-esteem and social isolation. Bullying can be a big stress and distraction, which can impact the child’s ability to perform and complete work at school.  It may even cause them to have a negative view of school. Some children who are bullied experience physical symptoms, such as headaches or stomachaches, and may have problems sleeping.

Signs of bullying may not be obvious, so it is important for parents, caregivers and educators to pay attention to certain behaviours. This can include:

  1. Avoiding school, or visiting the nurse to avoid class.
  2. Performance in school (grades and possibly behavior) declines.
  3. Frequent sick days off for headaches and stomachaches.
  4. Seems hungrier than usual on return from school. This may suggest avoidance of the lunch hall, or that lunch money / food is being stolen,
  5. Changes in friendships / relationships.
  6. Troubled sleeping.
  7. Crying spells and emotional outbursts.
  8. Not as talkative as usual with family.
  9. Reluctant to discuss school or friendships.
  10. Obsession with or withdrawal from devices and social media.
  11. Torn clothing and physical marks or bruises.

Text to the left reads “Bullying Hurts – inside and out”. Image to the right shows half a person’s face in greyscale, fading to white below the lips.Take special care in monitoring if your child is “the new kid”, and has entered a new school without friends or a support system yet. Ambassador and buddy programs can help new students start with a friend and assimilate with peers at a new school.

Also watch for signs of your child potentially developing a “victim stance”. When young children have not yet developed skills and assertiveness to stand up for themselves, they often have a victim stance, walking with their heads down, and hesitance to voice their feelings openly to peers.

Help build confidence through sports that focus on confidence, not competition with others, such as beginner judo or other martial arts. Children are able to build confidence without the pressure of team dynamics.

Scripted Responses: Telling Your Story

No child should have to face bullying alone. You can help prepare your child to answer questions and cope with unwanted attention and bullying.

Start with yourself. As a parent, you can learn to tell the story of why your child looks different. There can be a simple version of this story for strangers you will likely never see again, and a more detailed version of the story for those you will see again. There can even be a script for the days when you don’t want to talk about it at all.

“I can see you have noticed my child looks different. Let me tell you why this is…..he/she/they had an early childhood cancer called retinoblastoma, which is cancer in the eye. This meant treatment/surgery/procedures that affected the way her/his/their face looks.”

“I can see you have noticed my child looks different. I don’t want to/can’t take the time to talk about it right now.”

AS your child gets older, if they are comfortable, they can also create and practice scripted responses for people who have questions or are staring.

“Thanks for asking nicely about my eye/face. When I was a baby, I had something in my eye that needed to be removed so that I could be healthy. The treatment worked and now I have a special eye/prosthetic eye/strabismus so my eye looks a little different.”

“Thanks for asking about my eye. It’s a special eye that was made and painted just for me. Sometimes I get more tears in my eye, but I can wipe them away.”

“Thanks for asking nicely about my eye/face. I am fine, and I don’t want to talk about it now. Thanks for understanding.”

Teach your child to stand up straight and look attentively towards the individual they are addressing when talking about their facial difference. Making good eye contact helps, if possible, but it is not vital to effective communication.

Being calm and confident will be very helpful. Bullies are looking for an emotional reaction such as anger, fear, frustration or sadness. These responses could encourage the bully to continue. Role playing can help a child practice their scripted responses, and prepare to confront bullying without showing these emotional responses.

Providing social opportunities, such as group play with non-bullying children, can also help build your child’s self-esteem by developing skills and strengths in favorite activities.

Practice, Practice, Practice: Role Playing Responses

Against background of rolling green hills, a high blue sky and a radiant sun, a hand stretches out all five fingers and thumb. The back of the hand reads “High Five. Labelled 1 to 5, the thumb and four fingers in turn read: 1: Talk friendly, 2: Talk firmly, 3: Ignore, walk away, 4: Warn, 5: Report. A shining river flows across the bottom of the image, carrying the words “Be safe, be respectful, be a learner.” The statement is preceded by another radiant sun. In the bottom left corner is the emblem of Malanda State School. On the bottom right is an image of a boy and girl in school uniform, and a cow, with the phrase “work with pleasure”.

Teaching your child what to do if they are bullied should start when they are young.  Their hand can be an easy and effective guide to help them remember what to do.  Trace each finger as you learn each step in this helpful hand tool prompt:

  1. Talk friendly – “Please don’t speak to me that way.”
  2. Talk firmly – use a strong voice
  3. Ignore, walk away. – if they don’t stop using bullying words or behavior, try to ignore. If it still does not stop, walk away.
  4. Warn – If the bullying continues, let the child(ren) know you will be getting help from an adult.
  5. Report – to an adult.

Role Models and Encouraging Stories

Many older children and teens like to know about musicians, athletes and actors who have special eyes like them.

Fetty Wap is a famous Rap musician who had congenital glaucoma in both eye when he was born. The doctors were unable to successfully treat his left eye, and it was removed. When he was younger, he wore a prosthetic eye, but as an adult, he often choses to wear no prosthetic because, in his words “I don’t want to look like everybody else”.

There are MANY incredibly famous people – artists, actors, musicians, politicians and athletes – who only have one eye or vision loss of some kind. Check out these cool lists of people past and present with one eye and with strabismus.

Additionally, it can be a good family plan to explore some family-friendly movies and books that discuss bullying experienced by children with facial differences. The book, WONDER, written by R.J Palacio (now a movie) tells the life story of a young boy named Auggie who has a facial difference. This book and movie look at the life experiences, including bullying, from many perspectives, with heart and humor. This is a great story for older school age children and youth.

The Author has created some great resources for kids and families.   Teachers and community group leaders can use the wonderful WONDER Kindness Poster activity to help children think about and share the positive aspects of their classmates, to build one another up and create a kinder environment in which they learn and grow.

Preventing Bullying Starts At Home

You can’t control others, what they do and what they say. But you can control what you do and what you say, as well as how your respond or react to other people’s behavior.

Teaching children when they are young about how their actions, interactions, reactions and responses impact on others is an important life lesson. Parents can model appropriate responses in your daily interactions with your children, and show them through teachable moments throughout the day that there are many ways to respond, instead of reacting.

Parents’ actions and interactions with strangers are constantly teaching children about behavior and communication. So when you respond to strangers’ glances or questions calmly and clearly, using your planned scripts, showing that you are comfortable, you help kids learn how to respond to others with calm confidence, instead of reacting in anger.

Responding instead of reacting can take time to learn, even for adults. This simple situation is the perfect example of how the words we use, and how we deliver them, can drastically change the impact on the person they are directed to.

Person 1: “I can’t find the scissors. Do you know where they are?”

Person 2: Reactionary – “How the heck would I know where they are? I didn’t use them last!!!”

Person 2: Responsive – “Hmmm I don’t know where they are…but I’m happy to help you find them.”

The Terrible, Horrible, No Good, Very Bad Day

Get help early and often!

If you suspect your child is experiencing bullying that is not being managed with positive strategies, it is essential you seek out support and assistance immediately. If the bullying is taking place at school, on a sports team, or in a program your child attends, get the teachers, principals, coaches and instructors on board.  Meet with them to discuss what they plan to do, and what they are already doing, to end this bullying behavior.

In addition to seeking help from those involved with the organizations your child participates in, you can also seek out local charities and groups that advocate to prevent bullying and end bullying that already exists. These groups make BIG changes in public policy about what is acceptable and unacceptable behavior, and what constitutes bullying. Through your involvement, you can educate children, and make a positive impact on the policies that protect all children.

Two boys sit on a bench painted in bright rainbow colours, a wide lawn and trees behind them. One boy sits sideways with his legs crossed, leaning on his bag. The other leans against the back of the bench, legs stretched out to the ground, one ankle crossed over the other, turning in towards the other child. They appear to be deep in conversation.

About the Author

Morgan and Doc McStuffinsMorgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.

As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.

Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.

Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.

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