My vision is ok when I am in woods but when there is noise, clutter and people wearing red and talking and running at the same time, my vision starts collapsing and shakes and turns to black like a pitch black TV and I can't see.
Robin, like all affected by CVIs is able to process and thus 'see' better in calm, quiet, uncluttered environments where there is not much movement. They describe their vision as going 'black' on such occasions. People with CVIs 'losing' vision or it reducing is commonly reported to us. This is not a permanent loss but as Robin describes, it can be very perturbing, indeed frightening for a child who may not yet understand why this happens. Adults with the condition may at times have more control over what may trigger such occurrences than children, and thus more easily avoid this happening.
Processing movement makes significant demands upon a person with CVIs, in particular in busy places. This is why many children with CVIs find playtimes, lunchtimes, noisy corridors and busy places generally exhausting. Such environments often create anxiety or trigger 'meltdowns'.
This can lead to problems in the playground. If one can't judge speed of movement, it may cause difficulties judging where others are in relation to oneself and create a state of 'high alert' in an affected person. Thus playtime is not a time for relaxation and fostering social communication and friendships but may prove the opposite, leaving a child not in a calm, relaxed state ready to tackle schoolwork.
When combined with noise this is a potential recipe for disaster for many children. They may get into trouble for bumping into others, when it is not their fault, as they may be unable to judge the speed of movement, depth and distance of their peers accurately and thus avoid collisions. A child may also shy away from others and be frightened which is equally distressing and inhibits social engagement.
How can you join in games, in particular ball games when you may not see the ball if it is moving quickly and/or work out where it is coming from, especially when combined with the movement of your peers? This can be very socially isolating.
Nurseries and early years settings where 'free flow' of movement and visually cluttered environments are commonplace, can be particularly challenging for children with CVIs.
In Robin's case, the colour red is a significant distractor which completely takes their attention and prevents them from using their vision effectively
Countryside and quiet open spaces by their very nature, reduce the amount an affected person has to process and allows them to 'see' more. This is why Robin feels calm and enjoys walking in local woodland.
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