What is CVI?

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Learning at Home

These Home sections are all about learning in one way or another. Here we want to explain a little more about the process and purpose of learning for the person with CVI and how to put the two together for optimal learning.

This explanation applies to everyone with CVI, including professional adults, profoundly disabled children and even prematurely born babies. In the following three subsections we look at the different groups separately, but the short explanation below needs to be read first.

We refer to many accounts people have shared. If you wish to read these in full please follow the links to the other sections where you will find them. It is also worth reading Nicola McDowell's blogs, because she explains in context many of the points we make about living in a world that does not make sense.

There are several reasons why we have written this section...

Why?

We learn all the time. Wherever we are. Whatever we are doing.

Learning should be a good thing, but it isn't always. It is not always easy to understand what is effective and what is not, and to know what might be creating problems like challenging behaviours and unhappiness. We are going to try to show you a way to do this.

Why?

Because we have discovered that our children with CVI can do a great deal more than they were able to show.

We think learning opportunities across life are missed or extremely limited because, quite simply, learning is not made learnable.

In our Access sections we explain the process of learning, and how experiences need to be first perceivable, and then meaningful and motivational. Where teaching given does not meet these conditions it may not only be unsuitable, it may be severely detrimental to the person, for many reasons, including:

  • The person may feel stupid if unable to learn from something others find simple
  • The person may get frustrated
  • The person may feel anxious, because they are falling behind, or letting down someone they care about who is trying to teach them
  • The human brain is not designed to do nothing, if there is no meaningful stimulation from 'outside' it has nowhere else to go but inward, creating its own stimulations which may include rocking, head banging and pinching oneself

There are many other causes for these same behaviours, but they have all been described to us by parents of children with CVI, as a result of experiences not being learnable. Please see our sections on Behaviour and Emotions for more information.

People with CVI already live in an environment where the world their brain creates is not a match for the world as it really is, across all the senses for some, not just visually. There is a huge range from the mildly affected, to the profoundly affected where the world their brain creates bears no resemblance to the world as it is (as explained in Home). However, rather than an absence of vision or low vision, as with ocular (eye) visual impairments, the person with CVI has:

  • Vision that can be overwhelming, inconsistent, unreliable, untrustworthy and the cause of regular frights (see our section on Looming).
  • Hearing that may also be affected, so sounds and noise can also be overwhelming, inconsistent, unreliable, untrustworthy and the cause of regular frights (see our sections on Cerebral Auditory Impairments and Not Looking to Listen).
  • Other senses that can process differently, so everything experienced can be overwhelming, inconsistent, unreliably, untrustworthy and the cause of regular frights (see the Home section).

We will explain why, not in terms of any opinion or testimony, instead...

  • we have looked at the process of learning in relation to what the brain does
  • then looked at children with CVI and how they learn
  • then looked at the purpose of their learning

Why?

Because we think home is the place where there are the greatest learning opportunities for the person with CVI. Here are our reasons:

  • a) The time the person spends at home (85% roughly, see Home section)
  • b) The unique expert knowledge the people at home have of the person with CVI, not just how they are affected by CVI, but also their experiences across their whole life to date.
  • c) The time, love, patience and motivation those at home have for the person with CVI, which goes above and beyond anyone else's.

One issue is that many do not realise the person may be able to do much more, and their development to date may be seen as proof that the teaching methods have been successful.

We are going to try to explain this, and help show ways to see if learning is being made as good as it can be (optimal) or impossible, or somewhere in between (we will go into more detail in the subsections).

We are going to explain, looking at three areas of learning:

  • 1) Learning Environments - that is the physical environment, be it a classroom, bedroom, the beach - wherever you are is a learning environment.
  • 2) Learning substance - this is the actual stuff you are taught, across life, so including things like counting, science, riding a horse etc but extending to a wide understanding of the world the person lives in - it is all learning. The person teaching (maybe a parent, brother or sister, friend), the materials they use, the method they use, it's all learning.
  • 3) Learning purposes - These are the reasons why you are learning, maybe to develop your education, or become more confident in friendship groups, or manage everyday tasks on your own.

We are going to explain with a few examples - let us imagine you want to learn a new language, maybe French.

1) Learning Environment

Let us place you on this trackside for your first lesson.

It is noisy, busy, trains are going past, people are moving around, and yet through it all, at the end of a lesson you might be able to show that you have taken some reasonable notes and can remember a few basic words.

This shows clearly that trackside at a busy train station during rush hour is an effective learning environment, doesn't it? We have just proved it, because you wrote some things down and remembered a couple of words.

This sarcastic account demonstrates our dilemma.

Like so much around learning and CVI, there is nothing to compare the outcomes to, so any response, no matter how small, is often seen to demonstrate success. Some approaches may be very successful, and we would want to share these, but others we know are not. What we are hoping you will do, with the guidance in this section, is, through a little trial and error, work out how the person with CVI you support learns, then ensure their learning is actually made learnable, and then, most importantly, connected with a purpose, so that it is useful for the person.

Do you think these children will learn more on the trackside, or here?Do you think these children will learn more on the trackside, or here?

The learning environment is not just about classrooms, which can be busy and noisy and cluttered, like the train station. Everywhere can be a learning environment, and there is a spectrum, from those more optimal for learning, to those less optimal for learning. And this is the same for everything. We are not suggesting existing approaches are incorrect, but like everything they are on a spectrum, and with an understanding of your child's learning abilities (which we will help you understand), you can work out for yourselves what is better for learning and what not so good, and make the necessary adjustments - as with most things, just a little knowledge is all that is needed.

Rather than thinking about things being right or wrong, use a spectrum and think about where and how learning can be made easier.Rather than thinking about things being right or wrong, use a spectrum and think about where and how learning can be made easier.

2) Learning Substance

Let us imagine we are still wanting to speak a new language, but this time we are not sure which one, so four teachers come at the same time, and at the same time teach French, Spanish, German and Chinese. At the end of your lesson you may have made some notes and picked out a word or two, so that must be a successful teaching method - we have just proved it as you produced something.

See our dilemma again?

Here we need to think in terms of a spectrum again, the substance of this learning was information coming from four different teachers at the same time, and it was mildly effective.

We call the combined ranges of the learning environment and learning substance the learning spectrum. We think being taught by several teachers at once would come quite low on that spectrum in terms of how much we can learn.

With knowledge and simple adjustments (like just one teacher, in a quiet uncluttered environment) learning would be far more effective and higher on the learning spectrum.

Does this sound like an over-exaggerated example - four people all teaching you at the same time?

This is similar to how people have explained trying to learn with CVI to us, where information is coming in from all around, unstructured, unregulated (see our sections on Attention & Its Calibration), and the person is very quickly overwhelmed.

What must if feel like to be in the middle of information coming in from all angles across all of your senses - a little overwhelming maybe?  And we expect this child to learn in these conditions we create.What must if feel like to be in the middle of information coming in from all angles across all of your senses - a little overwhelming maybe? And we expect this child to learn in these conditions we create.

Let us think about this simple toy (below).

This might seem like a straight forward toy, but for a child with CVI it could be their equivalent of being taught French, German, Spanish and Chinese all at the same time.

To understand why, think of looking at this toy through an empty colander.

Think about colander vision...Think about colander vision...

There are some rules...

  • You can only look through one hole at a time.
  • You can't decide which hole you are looking through
  • You can't choose when you want to move to another hole
  • Sometimes you can't move away from the hole you are looking through
  • Sometimes you can't move back to the hole you were looking through - each time you try you get moved to another hole
  • Sometimes you can't find the hole you were just looking through
  • When you see through another hole, you don't know how it connects to the hole you were just looking through (whether it was above, below, to the left or right)

If a child only responds to things one element at a time and finds cluttered busy noisy environments stressful, they may well have reduced visual attention due to simultanagnostic vision (which we sometimes call colander vision).

So returning to the simple toy, using colander vision, it might look something like this (below)

  • And this is only the vision, we have not even begun to factor in the impact of information received across the other four senses of hearing, touch, smell and taste.
  • And this is limited to playing with one simple toy, but the person with CVI who has colander vision lives with it all the time. It affects every element of how they experience the world, so every element of their existence.

This means you need to think about colander vision not just for play activities, but everywhere all the time.

This toy can be very useful, learnable and purposeful, but the person needs to understand how the child they are teaching learns, and for many it will be layer by layer, one element at a time, as we explained in our Zoom In Zip Up Zoom Out sections.

So, is it reasonable for these little blobs of random visual information to make any sense to the child, if they don't make sense to us?

We don't think so, but it the child finds a piece, which may well be random, this is sometimes taken as successful learning - in the same way remembering a single word in French being taught by four teachers on the trackside of a busy station proves successful learning. Technically it does, but we think it is right down at the lowest end of the learning spectrum, and we owe it to the person with CVI to do much better than this!

Included in Learning Substance:

  • The people working with the person with CVI, in whatever capacity, maybe a sibling playing or a parent reading, or a home teacher or therapist.
  • The form of communication or contact - is it understandable for the person with CVI?
  • The materials used, like toys (as in the picture above) or games or things to touch - are they matched to the person's vision and so, accessible? Do they make sense? Do they have meaning?
  • The speed - might things be going too fast? Can you slow things down? Can you allow more time?
  • Does the person get to do things for themselves? Learning is considerably more difficult when people do things for you.
  • Content- is it already known, or not yet known, but learnable. Or does it need to wait until more is understood? (see Gordon Dutton's blog 13)

3. Learning Purpose

We wrote a short section creating three groups we called the Three Rights to broadly explain our work in relation to the person with CVI's rights:

  • A right to education and learning
  • A right to have control and be independent
  • A right to effective social relationships

Learning needs to have a purpose, otherwise - what's the point?

Much pre-school learning is around role playing, whether with dolls, or cars, trains, dressing up etc. This makes sense, slowly the child is being introduced to the adult world that one day they will live in independently.

It is just as important that where the child may have additional support needs, including profound learning delays, that learning still has a purpose.

Where is the child expected to meet this little smiling blue bobbly chap?

What is the purpose of playing with him? Maybe the child needs to learn to touch more things?

But just think about why, with what we know about how the brain learns (see Access).

The blue ball is experienced through touch, and may be remembered for another session and recognised - but where in the world outside of this particular play session is the child likely to come across this ball and think 'ah, I know what that is' - what is the purpose?

An alternative

We understand that many children with CVI are tactile averse, and an approach is to slowly introduce them to more tactile experiences, but why not make these experiences something that might be useful to know in their life - so rather than a blue plastic bumpy ball, why not an orange (if safe).

Start with a simple single real orange, and whilst the child is exploring the texture and shape use the word 'orange' (see our Language for Non-Verbal Children with CVI section). As the child becomes familiar with the orange, which may take anything from a few minutes to many weeks or months depending on the child, slice open an orange and let them explore the different textures, and feel the sticky juice, still using the single word orange.

Over time, if safe, maybe let them try to taste some of the orange segment, and put the juice in a cup, and the drink is 'orange juice'.

Over more time, as Halloween approaches, you may have an 'orange pumpkin' to carve.

So the child over time has learnt the word orange, the feel of it (round), a drink, a bigger round thing (pumpkin) and has learnt that the one thing they all have in common is the colour orange, so they have learnt, with the correct word, the abstract concept of a colour.

Why would you encourage a child to play with a meaningless toy when you can teach them all that?

The original purpose of touch is served, from liquid sticky juice, to soft segments, bumpy orange rind and the hard outer shell of a pumpkin.

Let us look at what the child has learnt in terms of the three rights we explained, (and not everything has to tick all three boxes), these will vary from child to child but may include...

Learning:

  • Language
  • Concept of colour
  • Experiencing different textures
  • Experiencing different tastes
  • Experiencing different smells
  • ...all with purpose and meaning

Independence

  • If allowed to explore the items themselves, possibly feed and drink themselves

Social relations:

  • Participate meaningfully in events like Halloween
  • Enjoy new eating experience with family

Over more time, you can introduce words like round or ball with the orange, and link to other things that are round or balls, and from that, other shapes, and from that colours and shapes, you can build up learning, understanding and vocabulary - all from one orange. It only takes a tiny bit of thought, to make learning purposeful to the person, by giving meaningful experience and progressively enhancing it.

Learning just for fun!

Sometimes it is not easy to find a purpose in an activity, but if the person is having fun, then purpose has been fulfilled.

Many children with CVI love bubbles, and these may serve a purpose in helping them track by following the movement, motivating them to reach and to use their arms, or for the more able, to try to chase them. It may be a way they can have fun with other children, or it may be just for fun.

Connor likes to go into his sister's bedroom where she spins him on her chair - and he howls with laughter when she does it. Even if you are not sure why, if the person is loving it (and it is safe of course), then somewhere, whatever it is, will be serving a purpose.

For Connor and his sister, they are learning to engage through play.

The Five Areas

In every sub-section of Home, we consider the application and implication across five broad areas:

  • 1. Time at home & in the garden
  • 2. Night time / sleeping / not sleeping
  • 3. Trips (e.g. shopping, play parks, sports, parties, outings)
  • 4. Car Journeys
  • 5. Socialising and visits to friends and relatives & holidays

These Five Areas cover how many with CVI will spend their time. They do not cover all the time for everyone, but hopefully will give some guidance on how to relate what we explain and suggest, in practical ways, to the individual with CVI.

Owing to the large amount of information, we have created three separate pages to cover the five areas in relation to each of our three CVI Classifications, which range from profoundly disabled children to high functioning professionals. Please note, the classifications have nothing to do with the actual severity of the CVI (please read our section on CVI Classifications for a full explanation of the meaning and purpose).

Our aim is to help you focus on the information that is directly relevant to the person with CVI you support.

Classification 1 describes the most profoundly disabled, but consider Ben who worked with Artist Steve Hollingsworth. As a young adult, Ben, with quadriplegic cerebral palsy, learnt to use his right arm - because Steve (through his art) made learning learnable. Think of Ali who worked with CVI expert QTVI Suzanne Little, and as an older teenager with quadriplegic cerebral palsy started to use her right arm for the first time using coloured tent therapy (read an account here).The brain never loses its capacity to learn.
Section: Home: Learning - CVI Severely Learning Delayed

CVI Classification 2 is a middle group, some with considerable learning needs, but able to speak and have a degree of independent mobility. Aged 13 Katherine showed that she could learn to read, and loved it, because reading was made learnable (read her story here). There are many examples helping people not just through education, but also to become more independent and confident in their social relationships.

CVI Classification 3 is the most able, including our blogger Nicola McDowell. Nicola is a successful professional, currently working on her PhD, a published academic and presents internationally. Before Nicola understood her CVI she was just scraping through tests and exams, and this is what we mean by considering the learning spectrum. For Nicola to scrape a pass grade as a teenager might show that some learning approach was successful, she did pass after all. But Nicola was actually an A star pupil, and by changing her learning approaches and environments, she has returned to that level - working at the high end of the learning spectrum so achieving higher outcomes.

CVI Scotland's Learning Spectrum

We have created a simple tool to help you work out how good the learning opportunities are for the person with CVI, and where they could be made better.

We explain how to use this in the following section CVI Scotland's Learning Spectrum.

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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.