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You are here: Home1 / Retinoblastoma Resource2 / Child Life3 / Psychological Support4 / Talking About Vision Loss – For Kids!
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy cope with eye removal and artificial eyes.

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Talking About Vision Loss – Just For Kids

Hey Kids, this page is for you!

Before we can talk about vision loss, or when someone has a condition affecting how they see things, we first need to understand how seeing happens.

How Do Our Eyes See?

Your eyes and your brain work together to see!

Two siblings stand shoulder to shoulder, smiling. One sister wears an eye patch over one eye behind her glasses.

The eye is made up of many different parts, including the cornea, iris, lens, and retina. These parts all work together to focus on light and images. Your eyes then use special nerves to send information about what you see to your brain, so your brain can process and recognize what you’re seeing. In eyes that work correctly, this process happens almost instantly.

When this doesn’t work the way it should, a person may be vision impaired, or blind. The problem may affect one eye or both eyes.

Diagram showing key structures of the eye.

This diagram shows different parts of the eye.

How Does Retinoblastoma Affect Vision?

For kids with retinoblastoma, the tumors that were found in the eye, and the treatment given to treat that cancer, can impact their ability to see clearly, or even the ability to see at all. This depends on many different factors, like:

  • If one eye (unilateral) or both eyes (bilateral) have/had tumors in them.
  • Where the tumors were in the eye or eyes.
  • How many tumors there were and how big they grew.
  • The type of treatment needed to control the cancer in your eyes.
  • How your eye(s) healed after the treatments.
  • And many other factors that are different for each child.

You can ask your parents about your unique experiences if you were too young during treatment to remember them yourself.

When you think of being blind, you might imagine total darkness. But most people who are blind can still see a little light or shadows. This will depend on whether the optic nerve, a special part of the eye that takes information from the eye to the brain, is still working, or is still there at all. Sometimes it is necessary to remove the eye completely to stop the cancer spreading to the optic nerve, brain or other parts of the body. This surgery is called an enucleation. When the eye is removed completely, the doctors remove the part of the optic nerve connected to the eye, to ensure the cancer is completely gone.

Most people with sight loss have some useful vision.  How much vision a person has is measured by a skilled professional like an ophthalmologist, optometrist or orthoptist. When vision is measured at or below a certain level (20/200 or 6/60), the person may be called “legally blind”. The measurement means the person could see an object from 20 feet away that someone with perfect vision would see from 200 feet away.

Life with Vision Loss or Blindness

Having impaired vision, or being blind has an impact on a person’s life sometimes, but does not have to limit everything. With practice and help from the Eye Clinic, medical team, family and other helpers, kids with vision loss can enjoy many wonderful activities and adventures, just like their sighted brothers, sisters and friends.

The kinds of help you might need will be determined through some special examinations and vision testing. Once you know what your vision needs are, you may get to do some or all of these special activities to help you be and feel successful and more independent at home, at school and in the community. These can include:

  • Patching – to help make your vision as strong as it can be in your eyes.
  • Glasses – to help improve vision and offer some protection for your eye/eyes.
  • Skill building – with helpers who are trained to support kids with reduced vision, monocular vision (one seeing eye) or blindness, such as:
    • occupational therapist
    • mobility instructor
    • counsellor, child life specialist, or social worker
    • rehabilitation therapists and specialists
    • technology specialists
    • TVIs – Teachers of the Vision Impaired / braille teachers
    • And more…..

All these activities take practice and time, to help you build your skills and independence. As well as figuring out how you and your family/friends/helpers can be interdependent and work together.

Here is a great video from a young boy named Charles, sharing his Top 10 Tips for helping kids with a vision impairment.

Read our Parents Guide to Talking With Kids About Vision Loss

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  • Retinoblastoma Overview
    • How the Eye Works
    • Retinoblastoma Biology
    • Unilateral Retinoblastoma
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    • Trilateral Retinoblastoma
    • Genetics of Retinoblastoma
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        • Review the 12 Decision Making Steps
      • Enucleation
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      • Talking About Vision Loss – For Kids!
      • Support and Encourage
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