CVI Diagnoses & being registered blind

When your child has been officially registered as blind but has vision.

Late last year Olivia received a diagnosis of CVI known as Cortical visual impairment. This means the eye takes a normal picture of the object and sends the message to the brain, The message is not properly processed or integrated because of the abnormal brain function. For me this was devastating, We knew for a while there could be a visual impairment but we truly believed glasses would help. So when we received the news it was incredibly difficult to wrap our heads around it.

The realisation your child is basically trapped in her own body unable to communicate verbally and unable to process what’s happening around is hard as a mother

A child without Olivia’s neurological problems will be able to communicate what they can and cannot see. Children with CVI usually have some level of vision that may show some improvement over time. However, as a result of Olivia’s health, she is non-verbal so she can’t communicate if her vision is increasing or decreasing.

This is where sensory support team comes into play. Three times a week Olivia will have “visual sensory play” in a darkened room specialist will integrate play and therapy. From this, we have learnt Olivia can 100% see she recognises colour and light, it’s important that her vision is exercised just as often as her body. At home we use high contrast, lightened, reflective and colourful objects we have come to establish Olivia responds more in the evening or early morning when it’s darker.

We don’t know what will happen with Olivia’s eyesight in the future, as with everything else we take it one day at a time. She has officially been registered as blind, however, she will receive check-ups with the ophthalmology clinic to monitor her eye health.


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