Many children are affected by multiple CVIs. The name we have given to groups of individual CVIs that occur in the same child is CVI Cluster (links to all pages referenced at the end of this email). The individual CVIs are the identified difficulties, each associated with a particular process in the brain, that have been researched, published and broadly accepted by the medical and scientific communities.
The first three CVI Clusters we list, all relate to glitches in the same brain process of mapping the visual scene. To explain, think about where you are right now, maybe sitting down reading this on a computer or smartphone. Your position has been mapped in relation to everything around you. Take a moment to look up and think about where things are, what is near and within your reach? What is further away? How far away? That's your map, it has positioned, hopefully accurately, everything around you... you really are the centre of your universe!
It is not just what you can see that is mapped, what you can hear is mapped too, so you know how far away a sound is and roughly from what direction it is coming from. And everything you can see and hear, once mapped, gets attention so that it can go to your memory stores and be recognised. It is your whole body that things are mapped around, not just your eyes, ears or head. You would have difficulty putting on your shoes if everything was only mapped around the position of your eyes!
No mapping? Then no attention, no recognition - which is a problem, a big problem.
For many with CVI, this mapping process, when performing sub-optimally, is at the core of the difficulties. Some difficulties have been well documented, researched and have made it onto a list of recognised individual cerebral visual impairments. Difficulty in visually reaching accurately is called optic ataxia, while challenges looking for things come under the area of simultanagnostic vision....but what else? Through conversations with parents we have identified a common difficulty, where children whose visual map is not performing typically are often startled and frightened and things seem to 'jump out'. We called this Looming.
Whilst we have explained Looming, and been clear that this visual difficulty has been identified and described from multiple first hand descriptions, to become 'accepted' it needs to be researched, and the findings need to be reviewed and published. This process is important, but it is also frustrating when parents report not being believed, when describing their child's difficulties, just because they do not fit into a box of approved conditions. This was the theme of Nicola McDowell's powerful blog 28, 'Time To Make Progress', reflecting:
...having on many occasions had my experience of CVI dismissed (or even laughed at) because it didn't meet someone's scientific understanding of CVI
At CVI Scotland we feel honoured that through our engagements with our community including people with CVI, parents and others in support roles across many professions, we have been able to identify, explore and share some of these experiences. Looming is one, CVI Meltdowns another. They do need to be researched according to scientific principles. This is for safety reasons we completely agree with, but in the meantime, whilst not published, it does not mean they aren't real.
We still have a great deal to learn about how different brain processes performing atypically, affect vision, so as a parent...where do you start? Particularly if your child is affected by multiple CVIs. One parent explained their simple approach (extract from the CVI Clusters page):
I think of it like looking after a group of children, and each has one very simple need, and if I can get them all right, I have a happy group who learn well together. One of these children needs things to be very slow, another needs things to stay where they are, another needs only one thing at a time in an uncluttered room, another needs things to be higher up to be seen, while another needs strong contrast and another needs things to be bigger. Put together these are all the different visual impairments in the same boy. And a happy group is a happy boy!
A few simple changes with no cost, just good understanding and a bit of planning, can make the world of difference to a child with CVI.
The CVI Scotland Team
We know of many people with CVI, particularly here in the UK, are back in lockdown due to Covid. We have included below a link to our previous newsletter looking as issues around Covid, with many links on our website. If you are supporting a child with CVI, who is learning remotely, please take time to read the excellent piece from our sister charity The CVI Society, on home learning challenges with CVI. We have also featured a report based on research findings from the Northern Ireland charity Angel Eyes, of current support for children with all visual impairment in their area, which makes for uncomfortable but very important reading.
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.