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Newsletter 25 Different Understandings of CVI

Hi,

One of our challenges is writing for a wide group of people, who all understand CVI differently...for example understood as being...

  • A set of tests and results needed to correctly diagnose the cause of vision problems, by ophthalmologists, or...
  • One of the risks to babies born prematurely, or if there has been a complication, by neonatologists, or...
  • Disordered white matter pathways, and what happens to the rest of the brain when they are damaged, by neurologists, or...
  • A group of behaviours by, psychologists, or...
  • The cause of learning difficulties, by teachers.

What about the child with CVI - what is CVI to them? Is it any of the above? All of the above? To the child with CVI, CVI is normal.

What about the parents and carers of a child with CVI - what is CVI to them? The answer we hear most often is simply 'worry'.

There is a definition, the one most commonly currently used is:

A verifiable visual dysfunction, which cannot be attributed to disorders of the anterior visual pathways or any potentially co-occurring ocular impairment.

Sakki H, link below

Does that tell us what CVI is? This definition came from a paper that looked at the different terms and definitions used, because it had all become a bit of a muddle with different groups in different countries all using different definitions.

CVI is different for everyone with CVI, and for everyone involved in CVI; moreover CVI is not a moment in time...

CVI for each affected person has a history, which could have started with a brain altering event at birth, or later in life, for example due to stroke or be becoming progressively more severe due to multiple sclerosis or dementia.

CVI has a now, the moment we live in, the worried parent, the child trying to read...

And most importantly, why we are here and are so passionate about what we do, CVI has a future, a tomorrow which can be made a little easier, a little happier, and a future that can be planned...

Planning is an important word, to plan something, especially where there are likely to be difficulties, requires knowledge of the causes of the difficulties. Sometimes planning is simple. If the visual difficulty is that text is too small to be seen clearly, then, well... make it bigger.

Unfortunately, CVI is rarely that simple. This has been our ultimate challenge; to work out a way that we can explain CVI so that each person affected and those supporting them can prepare, plan and make the necessary changes in advance. Not just respond to something that's already difficult, but actually anticipate, and prevent it being difficult to make life easier.

We are approaching our five year anniversary of working towards this goal, from a first meeting in a Glasgow Department Store. Over these five years we have learnt that there are three essential things to know, to understand CVI for each affected person:

  • 1. The person with CVI. An expert knowledge of their life, because understanding how CVI has affected their development is as important as understanding how CVI affects how they experience their world now, which needs...
  • 2. An understanding of CVI. This is why we wrote the Lessons, to be relevant to anyone, including the parent who never studied science at school and the doctor looking to understand their patient better.
  • 3. An understanding of how CVI affects the individual, which is personal to them, and dynamic, and is commonly non-conscious, so something they are not aware of.

3 (above) is the really tricky one! How can we write about a condition that is different for everyone? That can change in a moment due to an enormous number of factors from a loud motorbike passing to a worrying thought.

Our plan is to provide a personal guide to understanding how CVI affects the individual through our new section Pick & Mix, which we are currently finishing writing and hope to have on our website in a few weeks. Pick & Mix means you pick only what is relevant to you, which might be everyday difficulties, like spilling things, or tripping down kerbs etc. We hope to guide you to learn what the causes are. The term CVI alone, is not enough to think of as a cause.

Causes
The causes are the individual brain based impairments of vision, like reduced visual acuity, hemianopia or simultanagnostic vision. The causes are not the difficulties or behaviours or necessary accommodations, they can be thought as CVI Outcomes. Professor Amanda Lueck in one of a series of wonderful Conversations About CVI with Professor John Ravenscroft, uses the term root-causes to separate the causes from the outcomes. For example, if a person finds recognising faces difficult due to reduced visual acuity, then making a face bigger, maybe by standing closer, may help. But... making the face bigger won't help the person who has the same difficulty, but due to simultanagnostic vision, in fact it may make it worse.. and standing closer won't help the person with prosopagnosia either. They all have the same problem, recognising faces, but there are different causes, so different solutions. The causes need to be known if we are to plan what to do.

Pick & Mix is taking a little longer to complete than expected because areas we feel we can explain better keep popping up, which is why there are a lot of new pages at the end of this email. Things like...

Help! The importance of asking for help when needed, necessary for independence - and sometimes to avoid death!...as explained in Nicola McDowell's blog (or rather Dr McDowell, congratulations on an amazing PhD Nicola).

Video. The incredible range of uses, for learning, understanding facial expressions, recognising people and for the more able, learning about their own brain, the greatest skill for anyone with CVI.

Looking. A technique to help find things, especially when somewhere noisy and cluttered, called the Wagon Wheel Approach.

We also have a new blogger called Dragonfly, an adult who has had CVI all their life but was diagnosed only in 2018. The story is amazing, and beautifully told in the first introductory blog (below). We can't wait to hear more.

With all the different approaches and understandings, terms and definitions, there is no right and wrong, but somehow we have to bring it all together to help each person with CVI. It is only when the causes, the root-causes are understood, that we can plan, and that is our goal, and has been for nearly five years.

We hope you are well.

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...

  • Conversations About CVI
  • Nicola McDowells' Blog 26 Asking for Help
  • Using Videos to Support Learning with CVI
  • Wagon Wheel Approach
  • Dragonfly - New CVI Blogger
  • Gordon Dutton's Blog 28 How do we know where we are?
  • Sight-Sim
  • Tolerating Face Masks
  • CVI Definitions Paper

Conversations About CVI

Professor John Ravenscroft's series of video discussions with many familiar people from the CVI world.Professor John Ravenscroft's series of video discussions with many familiar people from the CVI world.

Nicola McDowells' Blog 26 Asking for Help

CVI can mean things can change for the affected person, sometimes dramatically and sometimes extremely quickly, sometimes meaning they are not safe. Nicola McDowell explains the importance of asking for help when needed.CVI can mean things can change for the affected person, sometimes dramatically and sometimes extremely quickly, sometimes meaning they are not safe. Nicola McDowell explains the importance of asking for help when needed.

Using Videos to Support Learning with CVI

Guide to the many ways using video can help with learning, support and personal development.Guide to the many ways using video can help with learning, support and personal development.

Wagon Wheel Approach

Explaining a simple but methodological visual search approach that people with CVI have found extremely usefulExplaining a simple but methodological visual search approach that people with CVI have found extremely useful

Dragonfly - New CVI Blogger

Our new blogger, an adult who has lived with CVI since birth but was only diagnosed in 2018, and has a fascinating story to share with our community.Our new blogger, an adult who has lived with CVI since birth but was only diagnosed in 2018, and has a fascinating story to share with our community.

Gordon Dutton's Blog 28 How do we know where we are?

Gordon Dutton shares some fascinating experiments and experiences explaining the different ways the senses guide us, and where other senses can be helpful if vision is impaired, including the proprioception and vestibular systems.Gordon Dutton shares some fascinating experiments and experiences explaining the different ways the senses guide us, and where other senses can be helpful if vision is impaired, including the proprioception and vestibular systems.

Sight-Sim

Sight Sim is a free, world class simulator programme, to show reduced visual acuity and reduced contrast sensitivity.Sight Sim is a free, world class simulator programme, to show reduced visual acuity and reduced contrast sensitivity.

Tolerating Face Masks

Guide to help visually impaired children tolerate wearing a face mask.Guide to help visually impaired children tolerate wearing a face mask.

CVI Definitions Paper

Paper Is there a consensus defining childhood CVI? A systematic review of terminology and definitions by Hannah Sakki and colleagues.Paper Is there a consensus defining childhood CVI? A systematic review of terminology and definitions by Hannah Sakki and colleagues.

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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.