Back to Brains
CVI is a label, an umbrella term, for many different neurological visual conditions, each unique to the affected person. You may be someone with CVI, you may care for someone with CVI or you may, through your work, support people with CVI.
If we want our support to be most effective (but not ineffective because it doesn't match), we all need to understand CVI in terms of each individual's condition and how their brain is functioning.
For instance, many with CVI have difficulties recognising faces and / or facial expressions - but WHY?
On one level the answer is 'because they have CVI', but there are a number of underlying possible reasons, such as...
There is a wealth of knowledge that, if correctly understood, can be life changing for each person with CVI, but this requires three things:
Why not take a look at our CVI Pathway sections? The Pathway we describe, is the natural order of how our minds process what we see. This order is important, because it helps lead to an understanding of the person with CVI and the visual difficulties they have (like being unable to recognise people visually) and how they deal with this (perhaps by voice recognition).
We all need to be comfortable talking about the brain and how it creates the picture that we see, and through the CVI Pathways we hope to make this information accessible and exciting by increasing our understanding
We believe that those closest to the person with CVI, who know them best and love them most, as both their ultimate experts and champions, are their parents and carers. They play the most important role in helping them to access the world, to learn and to live a full and happy life.
Parents and carers are the people we are aiming to explain the brain to. No specific education, prior knowledge or understanding is needed. We think, with time and patience everyone can learn to understand more about the brain and how it sees, by taking a step-by-step approach.
Through our What Is CVI? sections we explain the different common conditions that come under the CVI umbrella, using everyday language but relating them back to the brain. Through our evolving Home sections, we describe many practical ways to help understand the person with CVI, and learn what is needed to create an environment where they feel safe, and can learn and develop.
Our major new section in Home is all about our Visual Attention and how this is calibrated. This may seem complicated and academic, but it's just another part of how our brains let us focus on key issues, which can be disturbed by CVI. While Gordon Dutton's Blog 20 describes the distractions of a stone in one's shoe, why this is, and how it relates to CVI and attention.
The fact you can read these words means your visual attention systems have sorted out an enormous amount of information, coming in through all five senses, so as to choose and focus on the print - but not the weight of your clothes, nor the ticking clock, or the sounds of birds or traffic outside, or the footsteps in a hall.
When attention is not calibrated well, things that should get attention are neglected, like the bridge Nicola nearly threw her father over into a stream below, or the lorry she nearly walked under. We love Nicola's blogs, they make us laugh, but there's always a serious side!
All of this, from stones in shoes, to throwing dads into streams and not recognising people, whether it's a profoundly disabled child or a high functioning professional, all comes back to the visual brain, and the more we understand it, the more we can support the person with CVI.
We shared a short video (Toy Box Test) that simply seemed to involve a child having to pick a toy out of a toy box. But there's a huge amount to learn from seeing how well this little task is performed - knowledge that can be turned into practical everyday approaches at home.
The group who produced this test are looking into how the brain grows and develops in response to practise, which to us is both fascinating and exciting. We can't make promises about sight improving, but what we do see is huge potential to essentially re-wire the brain, to do the same things in different ways - like learning to scan a face to recognise it, or learning to recognise people by their scent or the sound of their footsteps. This re-wiring, or creation of new pathways in the brain is called neuroplasticity, and we see enormous potential in such teaching and training for everyone affected by CVI at every level.
But there's a but - and it's a big one - you have to know which bit of the brain is affected and how, to ensure the approach is one that can work by being matched to ability - otherwise it will be confusing, difficult (perhaps impossible), and stressful, maybe making the person feel stupid and worthless. And this is where the wrong approach, that is not individually matched to the person's limitations and abilities, can be detrimental.
The foundation of what we share on this website is published scientific research. Our work benefits from the contribution of world leading scientists and academics, who give their time and share their expertise for free, because like us, they want our readers, like you, to be able to support those with CVI who are close to you, as well as you can. By ensuring only scientific foundations, our work is relevant internationally, as a well used and shared resource.
Getting to understand CVI is not quick or easy, but we work with a wide range of parents, and all can learn.
We are all in this together, sharing and developing our understanding of CVI.
The CVI Scotland Team
PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.
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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.