Getting started

Simplify the Sensory Environment…

If you receive (or suspect) a CVI diagnosis for your child and do not know where to begin, start by thinking about the sensory input in your child’s environment. While your child is learning to use his vision to access and understand his world, he may not be able to tolerate multiple sensory information at the same time. When trying to achieve “best vision,” remove competing auditory, tactile, and olfactory distractors. As your child learns to use his vision, you will work to return those inputs one by one as you begin to understand exactly the kind of environment your child needs to use vision to the best of his ability. When you are not focusing on vision, encourage your child to use all of his senses and begin to teach him about his world, developing concepts through experiences.

If your child does not seem to be using his vision, here are some strategies to illicit an initial visual response:

  • Position your child in his preferred position, fully supported so he does not need to exert any energy in holding himself up in any way
  • Darken the room as much as possible and introduce a light source (APH Light Box, a flashlight, rope lights…)
  • Slowly move the light source, up/down, left/right…movement helps to alert the child to objects
  • Do not talk, do not play music, do not have the television on
  • Do not wear perfume, or have strong scents nearby
  • Remember that “wait time” is crucial. Be patient and encourage your Team to be patient as you wait….wait…wait…. for a reaction. Count how many seconds it takes to get a reaction, then share that with the Team.
  • Observe to see if there is any visual reaction….this may be a very subtle sign, a blink, a squint, tensing of the body, change in breathing pattern, looking away and then back to the light source, vocalizing, smiling
  • Be aware of stress or fatigue signs…this may be very subtle as well, hands tightening or splaying, hiccups, repeated yawning, covering of eyes, head consistently turned away, crying, or even excessive laughter….if child demonstrates stress, take a break with a non-visual activity
  • Remember to take notes in a notebook or even videotape your child to help you remember your child’s reactions….this information will be very helpful to share with your child’s medical and educational team.

As your family begins the CVI journey you will be looking for materials that are appropriate and enjoyable to him. This website has ideas for assessment materials and strategies to try at each stage of your child’s path. Remember to have hope! Work with your Team to assess and develop playtime, daily living and instructional activities based on where your child is successful visually. Under the Teaming tab, this website has a template for a daily routine matrix that allows you to list activities of your child’s day across the top and current vision adaptations needed down the side, so that you and your vision specialist can “fill in” the appropriate environmental adaptations that the entire Team needs to be aware of for success. The goal should be to find ways to use vision throughout his entire day .

Provide opportunities for your child to explore and interact with his environment… reach toward interesting targets, activate toys, knock over blocks, hold objects in his hands, and become curious!  Enjoy these times together.  Children learn through play, so make time for free play every day.  Your family may have many therapies and doctors appointments, but try not to forget about the joy of having your child. This time together will encourage bonding and a sense of trust as your family moves forward.