We recently posted a list of eight things we think everyone needs to know before they can start to understand CVI:
The more you learn, and the more you help the person with CVI to learn, by making their world more visible, accessible, understandable and memorable, the more they will progress and everyone will be happier.
Happy people learn best!
For some, this will be obvious. Our reason for highlighting these points is that when trying to understand CVI, we think you first have to understand how we learn, and then understand how an altered experience created by CVI might affect this. We approach all of our work from this perspective, including some major new sections that are part of our Home sections. The Home sections are where we try to show parents and carers ways they can directly support the person with CVI when at home or out and about.
One new section has been about Learning at Home. We have found that because there is little to compare CVI outcomes to, the tiniest response to any teaching approach is taken as confirmation of the success of the approach. As parents, we have learnt through our personal experience that people with CVI are much more capable than they are often able to demonstrate, and we have created some simple tools to help you see whether the learning environment and learning approach are optimal for the person with CVI. We have two sections aimed at the people more severely affected by CVI. One is an approach that we have used successfully ourselves for our children to teach people previously considered non-verbal to talk. Another is looking at how those most severely affected by CVI learn, and how learning can be made more enjoyable, meaningful and effective,
CVI is not just about severely affected children, it can affect anyone at any age, some mildly, some more severely, with many different causes. We keep coming across confusing information, because across different countries there are different systems and terms. Think about backache, and all the different causes and levels of severity. Different countries will have different systems for who diagnoses the back condition and the names of the different types. How they are grouped may vary from country to country, as may the descriptors and the approaches, but underlying it all, across every country, the overall medical condition and its many types are the same. Similarly CVI has many different descriptors and many different approaches are used, but underneath it all, we are all talking about the same medical conditions. These conditions come under the umbrella of what we have chosen to call the cerebral visual impairments, and they each have names, clinical names. One is called posterior cortical atrophy, as described in Gordon Dutton's Blog 22. At CVI Scotland we seek to explain the medical conditions and aim not to feature any approaches that are locally popular, not even some employed here in Scotland! We are thrilled to have users across 108 countries and we want to ensure everything we share is relevant to everyone.
We like to feature published research, and have written short introductions to three more clinical papers. Through our introductions, we are trying to show that while these research papers may seem technical and scientific, they are in fact completely relevant to our children. One paper is about Object Recognition, another is on the condition affecting facial recognition called Prosopagnosia, and we consider where this fits into the world of visual impairments. Another is called Dorsal Stream Dysfunction Plus, looking at CVI at the milder levels, where it may remain undiagnosed or be alternatively labelled at an observational level rather than diagnostically, or be hidden behind another label like a learning disability, attentional issues or autism. Would you recognise it in someone - even yourself? We know people live with CVI without knowing it, Nicola McDowell did for seventeen years, and in her Blog 18 she considers whether her CVI is the cause of many physical health issues she has had, and there is clinical research to suggest she might be right.
We have two new surveys in our Take Part in Research Section, which is exciting, because it means more and more people are investing in serious research into CVI, and we need to encourage everyone to engage with the research community, because everyone with CVI will benefit.
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.