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Newsletter 21 Working Together & Sharing

Hi,

Sharing

We approach the end of the 2019 in a reflective mood. Soon, we will be celebrating three years since we launched our website. Within our team there was concern at the beginning...'what if no one is interested?' With virtually no money, just the expertise and generosity of an incredible team, we launched and grew...and grew. Today we are used across more than 150 countries, and all by people sharing.

Over the last three years we have worked with many amazing people, but are particularly thankful to the parents of children with CVI and adults with CVI who have given us so much of their time to explain their experiences, for us to share. Share - that word again. What have we learnt from you all? We have learnt that there is an awful lot more to learn.

The pieces we write are often inspired by conversations or publications. Our feature on Learning Emotions with CVI was inspired in part by an academic lecture on Theory of Mind and CVI (all links below), but also the incredible and primitive brain process called affective blindsight. It explains how some babies, with damage to their occipital lobes meaning they create no picture of what their eyes see, can respond to a parent's smile - a smile they can't see. Blindsight is incredible.

Another piece featured a fascinating paper looking at the different ranges of lower visual field impairments. Many visual field tests assess where things are and are not visible. This research added an important element - what happens if something is made bigger in an area it might otherwise be unseen, in the lower visual field. Making lower visual field impairments a spectrum of a spectrum, so does that make CVI a spectrum of spectrums of spectrums?

Both of these pieces (Learning Emotions with CVI and Ranges of Lower visual Field Impairment Paper) combined first-hand accounts with our understanding, academic theory and quality published research. Sharing again, we all need each other.

We shared a film from an organisation based in Holland called Bartiméus, which had some great first-hand accounts from young people affected by CVI. When we listen to the experiences people share, it is important to always keep an open mind as the best authorities are those who have CVI and the people closest to them.

As we leave both the year and the decade, we extend heartfelt thanks to everyone in the growing community we are proud to be a part of. We have many exciting new developments to share with you in 2020, and look forward to continuing to share and develop our understanding of CVI, together.

Thank you,

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 Emotions with CVI
  • Nicola McDowell's Blog 23
  • CVI & Theory of Mind Lecture
  • Ranges of Lower Visual Field Impairments Paper
  • Young People with CVI Film
  • Gordon Dutton's Blog 26

Learning Emotions with CVI

Explaining approaches to difficulties CVI causes in relation to emotional development, affecting social relationships and confidence. Explaining approaches to difficulties CVI causes in relation to emotional development, affecting social relationships and confidence.

Nicola McDowell's Blog 23

Becoming a social outcast overnight - Nicola, in a courageous blog, shares her struggles with emotions due to CVI.Becoming a social outcast overnight - Nicola, in a courageous blog, shares her struggles with emotions due to CVI.

CVI & Theory of Mind Lecture

Slides from the world's first presentation on CVI & Theory of Mind, given by Prof John Ravenscroft, University of EdinburghSlides from the world's first presentation on CVI & Theory of Mind, given by Prof John Ravenscroft, University of Edinburgh

Ranges of Lower Visual Field Impairments Paper

Introduction to a fascinating paper looking at different ways to measure lower visual field impairments.Introduction to a fascinating paper looking at different ways to measure lower visual field impairments.

Young People with CVI Film

Great first-hand accounts of CVI from some young people, from the Dutch organisation Bartiméus.Great first-hand accounts of CVI from some young people, from the Dutch organisation Bartiméus.

Gordon Dutton's Blog 26

Children with visual impairments flourish when parents teach them language, using consistent meaningful words. Gordon Dutton reflects on the development of children where parents have embraced this approach. Children with visual impairments flourish when parents teach them language, using consistent meaningful words. Gordon Dutton reflects on the development of children where parents have embraced this approach.

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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.