CVI Mascot - VIC

Blogs & News

Issue 10 - 17 April 2018

Hi,

We recently posted a list of eight things we think everyone needs to know before they can start to understand CVI:

  • 1. Everything you can do, you have learnt. This includes learning to talk, learning to dress and feed yourself, learning to make friends, learning what music you like, and learning to read. Learning doesn't just happen at school!
  • 2. We learn from what happens to us. We do this with our five senses - sight, hearing, touch, taste and smell.
  • 3. If something is not visible to us, we can't learn from what it looks like. If something can't be heard we can't learn from what it sounds like. This is the same for the other senses.
  • 4. There are a lot of reasons why things may not be be seen or heard. These can be found on our website.
  • 5. Whenever you are with a person with CVI, you need to think about what they can see and understand, not what you can see and understand.This means you must know and understand how CVI is affecting that one person, as this is different from every other person with CVI.
  • 6. The more you make things visible and understandable, the more the person with CVI will learn.
  • 7. Just seeing or hearing something doesn't mean you understand it. If you see something new it often needs to be explained to be understood. This means that you will probably have to do a lot of things differently to help the person with CVI learn, and that is at home, at school and out and about. And not just you, but everyone around the person with CVI.
  • 8. You and the person with CVI you are with, will both get out what you both put in.

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.

Best wishes,

The CVI Scotland Team

PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.

In this issue...

  • Learning at Home
  • Learning at Home - CVI Severely Learning Delayed
  • Language for non-verbal children with CVI
  • Object Recognition Paper
  • Facial Recognition Paper
  • Dorsal Stream Dysfunction Plus Paper
  • Nicola McDowell's Blog 18
  • Gordon Dutton's Latest Blogs
  • Take Part in Research
  • CVI Facts

Learning at Home

Ways to understand and measure the effectiveness of the learning environment and learning opportunities for the person with CVI.

Learning at Home - CVI Severely Learning Delayed

Giving specific examples to apply the measured approach we introduced in Learning at Home (above) relating to those with CVI and severe learning difficulties.

Language for non-verbal children with CVI

Explaining reasons why some children with CVI might be considered non-verbal, and a suggested approach.

Object Recognition Paper

In our introduction to this paper we explain a little about the importance of object recognition. We consider the question as to whether people have CVI and learning difficulties, or people have learning difficulties because of CVI?

Facial Recognition Paper

We explain a little about the condition prosopagnosia, and consider where it fits in the world of visual impairments from the brain.

Dorsal Stream Dysfunction Plus Paper

Gordon Dutton's paper considers the milder forms of CVI which often go undiagnosed and unknown, but not without challenges for the person affected. The paper contains many pointers and suggestions.

Nicola McDowell's Blog 18

Nicola McDowell considers whether her CVI might be responsible for a number of physical health issues she has had to deal with.

Gordon Dutton's Latest Blogs

Gordon Dutton's looks at anxiety created by CVI. In Blog 21 he explains the need to create a calming environment, and in Blog 22, recalls a person with posterior cortical atrophy who became frightened as the condition progressed.

Take Part in Research

We feature three ongoing research projects, please take a look and share with anyone who might be able to participate.

CVI Facts

This is a new section we are developing, sharing simple single facts about CVI that are widely agreed.

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About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.