CVI Scotland trustee & parent of a child with CVI, Helen, thinks we all need to start looking more closely at Higher Visual Processing Difficulties.
My son has had CVI from birth, he is now ten.
We were told he had low vision, with significant delays in learning and development, and this was how he was managed.
Then, when he was six, we learned that he has difficulties with higher visual processing as well, like those described on this website. We learned also that these might, in part, explain his delays.
For my son these include:
When his tube of visual attention narrows, I imagine my son feels as if he is tumbling inside a chaotic whirlwind. Not only is his vision affected, he becomes paralysed, and he has often fallen to the floor.
Yet if you saw him now, walking around at home, you would probably not even think he had a visual impairment, but take him somewhere unknown, even in a place with minimal movement or noise or clutter, and he can become as helpless as a baby.
As I learnt more about these higher processing difficulties, and how they are affecting my son, I came to realise that they are causing his learning difficulties. His learning difficulties are not a separate condition. They are caused by his CVIs, at least in part. This new knowledge has helped us to become better and better at recognising the support he needs to learn and develop. It's not been easy, but over time, those closest to him have learnt to tune into his world, and step into his wonderful existence.
Through my work with CVI Scotland I meet many families. I now realise, that almost without exception, the children I've met, also have similar higher processing difficulties.
So I asked our experts...
They explained CVI is the leading cause of vision impairment in children in industrialised countries, and that a large proportion of children affected by CVI, have higher visual processing difficulties - sometimes with, and sometimes without other disorders of vision.
So these higher visual processes are really important to understand. Yet many professionals in the visual world still seem to limit their focus to low vision and visual impairments due to the eyes.
I know from both my experiences and those of so many families I've met, that when the higher visual processing difficulties are understood and accommodated, children can learn, it's as simple as that.
The standard teaching approaches for low vision alone might not be simply inadequate for children with CVI, they can for some, create learning difficulties. Just think about that - the wrong approach doesn't simply do nothing or make learning slower - it can actually create learning difficulties.
I know personally of many examples where the wrong approaches have also created major behavioural challenges too.
I believe that everyone - families, carers, those in education, medicine or other areas of support - who work with anyone affected by CVI, needs to understand the higher visual processes and what can go wrong with them.
It may seem bold for a parent to be writing like this, but parents, carers and those affected by CVI know this condition better than anyone else, because we live with it all day, every day and it affects those most dear to us.
Our voice matters.
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