Young children need to feel they are active participants in the care of their special eye.
You can help your child find his own unique strategies to cope with his special eye, to embrace it and live well with it.
Use the techniques below as a guide. Ask a child life specialist at your hospital for support if you feel you need additional help.
Touch Through Play
For very young children with retinoblastoma, the need to routinely touch and examine the eye area can be a stressful experience.
Through play, you can provide positive sensory experiences that allow your child to become more familiar with touch. This will sensitize and calm him, enabling necessary care of the special eye.
Use games like peek a boo, in which you take turns gently touching each other’s faces around the eye area, brows and cheeks. This provides positive touch, without any manipulation or need to remove the special eye.
Body part songs (head, shoulders, Knees and Toes etc) often include the eye area. They should be included in daily playtimes to facilitate more positive touch experiences in and around the eye.
Encourage dress up games with glasses, and activities with binoculars or viewfinders. These are excellent playful ways to touch the eye area with objects, without touching the special eye itself.
Through this sensitization, children become experienced with contact in and around their eye. As a result, they are calmer and more familiar with the sensations when care of the eye is needed.
Several books have been written specifically for young children living with an artificial eye. Reading one of these with your child(ren) may be very valuable. You could suggest preschool / school teachers use a book in class to help peers understand your child’s experience.
Together you and your child can write and create your own book with simple facts of the process your child went through with the eye removal surgery and will undergo during visits to the ocularist and regular care of the eye.
This can include real photos of the doctors, ocularist and family members to help increase familiarity and comfort with the events and people involved.
Distraction games and toys are also an excellent way to support young children during visits to the eye doctor or ocularist. Activities can include blowing bubbles, singing favorite songs, playing with cause and effect musical toys, and listening to your reading story books.
Positive, relaxing touch can also help children cope with medical appointments. Gentle strokes on the forehead, face and neck can sooth and comfort an upset child. The three sets of photos below demonstrate simple baby massage strokes you can use with your child.
Some children may prefer touch on an area away from the face. Hand, feet and back strokes are recommended as calming forms of positive touch away from the eye.