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Blogs & News

Issue 13 - 8 October 2018

Hi,

This month we feature a blog from a parent, who has managed to help her almost fully dependant daughter Amelia, become the independent teenager she wants to be, in the space of a few months.

What the mother did was in principle very simple - she understood all of Amelia's needs, and worked out ways to help her. Amelia, like many with CVIs, has multiple processing difficulties, all working together at the same time, but annoyingly variable too - so conventional approaches just didn't work. This mother created her own set of approaches to try, not only based on her knowledge and understanding of her daughter's abilities and challenges, but also based on her daughter's needs and desires. And the mother got it spot on, which we know because Amelia, rather than resisting the tedious repetition of multiple difficult tasks around mobility, personal care, and daunting social skills, embraced and loved her new programme leading to her independence.

The mother got it right because she understood a few key factors around her daughter's development. The first, and most fundamental, is how we learn - how we get that stuff called knowledge into the storage libraries in our brain. Learning is a three-part process, where we experience something, then remember it, and when we come across it again, recognise it.

Experience - Memory - Recognition, and repeat.

That is how the pathways in our brains are built, everything you are, from when you were a helpless new-born baby, to now, has gone through that process.

  • Are you sitting? You learnt to sit that way.
  • Are you reading these words? You learnt to read that way.
  • This language you are reading in - You learnt language this way.

But - and it's a big but, CVIs affect the experience part of that three-way process. With CVIs, the experiences are not always consistent, or even perceivable, and can vary, and affect other senses, not just vision - making that process of learning much more difficult. This is why so many children with CVIs have learning difficulties at school.

This mother understood which areas were making the experiences difficult to learn from, and, admitting needing a little trial and error, worked out a way through. But this mother understood each of the different CVIs her daughter was affected by, and this is key.

Could you imagine a child with an ocular (eye) visual impairment (OVI), and the parents, therapists and educators being told "they have an OVI - that's all you need to know". It wouldn't happen, there are many different visual impairment affecting the eyes, some affect clarity, others visual field - and each different visual impairment requires a different approach. CVIs are the same, there are many different CVIs (sorry to be such a bore and keep repeating ourselves, but once again, CVI is an umbrella term for many different brain related impairments of vision), each, or combinations requiring a different approach

Another child, we featured, called Charlotte, worked with a Music Therapist, and with support from the family and multiple professionals, learnt to walk and is learning to talk. This child was considered to have very complex needs, and like many severely affected by CVIs, can only attend to one thing at a time, not just visually but across all of her senses. This makes learning new things particularly challenging (Gordon Dutton describes some of the children he has worked with as having a sort of 'single attention syndrome' in his Blog 23). Following Charlotte's progress, we see that with great patience and time, she, like all children, can learn.

Many parents regularly contribute to the CVI Scotland website, and we love sharing stories, because that is the best way to learn, from one another. One problem we come across is still, how few families really understand the nature of their child's difficulties. Often, they have been given labels, which are explained in terms of the label, rather than the child. At the end of this letter we are sharing a list of what we think are the key areas to understand, to learn the world of the person with CVIs (Initial Goals for Understanding).

Once you have this understanding, you can start to see the world through their eyes, and this is key, as Gordon Dutton explains in his Blog 24 about the Self-Referencing Criterion. We need to understand their world, to learn to better see and experience their world, and not use our world.

Get these things right, and children learn to do things, and love learning, and that makes everyone happier, and if money was an argument, makes life cheaper (because people who can do things for themselves don't need someone else to do things for them). Another example we featured was a boy who found reading long words difficult, and was found to have Balint Syndrome. Very simple advice, based on the understanding of his CVIs turned the boy's life around. CVIs commonly affect reading and writing, and can easily be confused with dyslexia.

These three cases all show us that children with CVIs do not have some sort of inherent learning difficulty. They have a visual impairment that makes learning more difficult if it is not fully understood and accommodated. Get it right, and we have yet to find a child unable to learn. Where children do not learn, this is a sign that we need to do better, and these cases show us we can.

Best wishes

The CVI Scotland Team

Initial Goals for Understanding

What do we need to know about children or adults with CVIs, to learn to understand their world -and so see their world as they do?

  • 1) A full list of which (so each) cerebral visual impairments each child has.
  • 2) For each individual cerebral visual impairment - their range, from mild, to most challenging, and how these limit the child's access to their world.
  • 3) For each cerebral visual impairment - the factors that make it better and worse, which may be
  • a. environmental (e.g. somewhere busy)
  • b. internal (how they are feeling - happy? bored? in discomfort?)
  • 4) Other neurological processing difficulties, for example affecting the processing of sounds (like cerebral auditory impairment) or time (for example disorders of the cerebellum) or motor skills (for example cerebral palsy) - and for each of these, repeat points 2) and 3) above.
  • 5) An understanding of the behaviours the person is affected by, and how and where their learning and emotional development may have been affected.
  • 6) Other medical conditions that affect the person.
  • 7) Whether the CVI was present at birth or very soon after, or acquired in childhood or later.

Next, you have to look at the past, present and future.

The Past

The past is full of priceless knowledge. Reflecting - consider:

  • Times when the person has been most happy
  • Times when the person has been most distressed
  • Times the person has really surprised you, doing something you thought was way beyond them
  • Times the person has really focused on something
  • Times the person seems difficult and distracted

And for each of these, note:

  • The physical environments they were in
  • The people they were with
  • What they were doing
  • Anything else that seems relevant

See if you can come up with any themes.

Where the CVI was acquired, in addition to the above, consider the skills the person had before the event, and how these have changed.

Present

Your starting point is where the person is now - not where someone else says they should be. We all exist in the four dimensions of space and time.

With what you know from 1-7 (above)

  • How much time do you need to allow?
  • How fast or slow should things be?
  • How big, or small do things need to be to be seen?*
  • How are things heard? Is quiet needed to hear? Only one sound?
  • What environments help the person see, hear and experience the world most clearly?
  • How many things is the person able to process at once (across all the senses)
  • How are their other senses affected?

And make everything perceivable for them.

And make everyone else make everything perceivable for them.

*This list is by no means comprehensive, once each element of the visual impairment is identified, then the support needs to be matched (see our What Is CVI? sections for more information).

The Future

Plans need to be organic, and as a person develops, everything changes, and needs to be reviewed and re-reviewed.

Consider the person's needs, relevant to them, in terms of:

  • Their learning and education
  • Their independence, doing more for themselves and taking more control of their life and decisions
  • Their social relationships and interactions, so they are not lonely.

In this issue...

  • Parent Blogs: Amelia - Becoming an Independent Teenager
  • Gordon Dutton's Blog 23
  • Shane Harvey's (Senior Music Therapist) Guest Blog
  • Gordon Dutton's Blog 24
  • Balint Syndrome Paper
  • Sean Reading at Home
  • Katie's Reading
  • Child with 'More than Blindsight' Paper
  • Theory of Mind & CVI
  • Access (previously featured)

Parent Blogs: Amelia - Becoming an Independent Teenager

Wonderful account from a mother, matching support to her daughter's actual needs, and quite literally opening up the world to her.

Gordon Dutton's Blog 23

This blog reflects on experiences with children with severe learning disabilities, who may be thought to have a 'single attention syndrome'.

Shane Harvey's (Senior Music Therapist) Guest Blog

Shane explains his successful approach through the case study of a child with CVIs.

Gordon Dutton's Blog 24

On the self-referencing criterion. If you are applying it, your efforts with those affected by CVIs could well be redundant.

Balint Syndrome Paper

An introduction and link to a published paper, explaining the case of a ten-year-old boy who struggled reading long words, and was found to have Balint Syndrome.

Sean Reading at Home

Explanation of how reading difficulties, possibly looking like dyslexia, can be attributed to CVI.

Katie's Reading

Katie's reading is inconsistent, sometimes great, other times she is almost illiterate. Distractions? Dyslexia? Katie has CVI - but which one?

Child with 'More than Blindsight' Paper

Fascinating paper about a boy who should be blind, but can see remarkably well - however beyond blindsight and his Riddoch Syndrome, this boy can see colours without a primary visual cortex. Incredible!

Theory of Mind & CVI

The world's first presentation on CVI and Theory of Mind given by Prof John Ravenscroft at AER International Conference in June 2018

Access (previously featured)

Explaining the fundamentals of how we get that stuff called knowledge into our brains.

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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.