We know that many children most profoundly affected by CVI are considered non-verbal.
To be non-verbal means to have little or no language, with little means of communication beyond vocalisation or movements, interpretable by those who know them well to mean either:
This is similar to how a mother interprets different forms of crying from her new-born baby, but this level of communication is extremely limited and limiting.
From our experiences, being non-verbal does not necessarily mean the person can't learn language.
With what we know about CVI we have looked at how language can be made learnable, which means it must be consistently and intelligently perceivable. We have tried this approach and children who were considered non-verbal are learning to talk, because language has quite simply been made learnable for them.
To us, now, non-verbal simply means 'has yet to learn language'.
From our positive experiences we believe:
We are going to explain an approach combining the teaching of Speech & Language Therapist Dr Sally Ward, as explained in her book Baby Talk (see bottom of page for details), with our understanding of the brain, how it is affected by CVI, how this impacts upon language learning, and how to use this knowledge to effectively teach language to our children, as we have.
The brain has a tremendous capacity to learn new things, this includes language, once it has been made accessible and intelligible.
Here we are describing a step by step approach, and linking this to other sections where wider explanations of concepts are available, if needed.
Spoken language is made up of words, and comprises two categories:
Most of us learn to understand language and to speak at such an early age we have no conscious recollection of how we did it, and most of us match our expressive and receptive forms of language without thinking about it. Say a word out loud, any word - did you have to think about if first and then think about how to say it?
Actually you did, but this process would have been lightning fast, so fast you probably weren't even aware you were doing it, although it wasn't like this when you first learned it (that is why we slow down and speak so clearly to infants, without even recognising we're doing it). Sometimes we have to think about a particular word we want, but once that word has been selected, we normally simply say it, and don't have to think how to say it.
But language is made up of many separate processes that need:
1) and 2) is Learning Language
3) is Speaking Language
1) and 2) (above) whilst separate, work together and need each other for the development of language.
We will look at speaking towards the end, because without the first two, the sound of speech is just meaningless noise to the person whose CVI has prevented language learning.
All learning entails:
As we explained in our Access section.
The pathway needed for this process, required for all visual learning, is the pathway that takes information that is experienced (real-time) to the temporal lobes, where the libraries of information are stored, to be matched and recognised. This is called the ventral stream.
We know, that with CVI, how things are experienced can make learning challenging, because CVI can affect:
So we have a problem!
Essentially, with CVI, the mental emulation of the world our brain creates, is not a perfect match for the world as it really is. With some people there may be slight and mild distortions of perception (across the senses), with others it may be so wildly different that the two worlds bear little resemblance to one another, as we explained in our Home section. We call this different world created by the brain of the person with CVI, that person's alternative world.
The experience bit of the learning process, for optimum learning needs to be:
We perceive what we experience through our five senses of sight, hearing, touch, taste and small. But with CVI these perceptions are not consistent nor reliable due to the alternative world the brain creates.
So here is our first challenge - how do we make language consistently perceivable for those with CVI?
Create An Environment to Learn
First of all, we need to create an environment where the brain can learn. We know that many with CVI have fewer brain processing channels (Gordon Dutton clearly explains this in his Blog 18 and there are some amazing images here).We have explained that learning employs the ventral stream, but there is another stream that can take up those all important processing channels, called the dorsal stream. The dorsal stream processes visual information and takes it to the posterior parietal lobes in the brain to map that information, the smaller the dorsal stream bundle, the fewer the channels, so the less detail is mapped, causing less accurate movement in the environment, and leading to less being seen at any one time. In most of us, these two streams work together, at the same time and in harmony. With CVI, where there are already limited processing channels, sometimes there is too much in the surroundings to process, so something has to give! We explain this in relation to the challenges of simply picking a toy out of a box (Toy Box Test).
We know that the ventral stream is essential for learning, so we need to reduce the demands on the dorsal stream (to free up mental capacity for the ventral stream).
So how do we do that?
Freeing Up the Dorsal Stream
EVERYTHING THAT REQUIRES VISUAL SEARCH USES THE DORSAL STREAM
This is not always obvious. We explained in our Attention & Its Calibration section that everything that is within our visual field is constantly being processed. If the environment is busy or cluttered or noisy, this is going to put huge demands on the dorsal stream (but without us being aware of this, because it happens without our knowing).
We have found that at first, the optimal environment for learning is one that is a single colour, as can be achieved in a tent. If the room is quiet, working inside a single coloured tent reduces most of the demands on the dorsal stream.
You can purchase an inexpensive pop-up tent like this, to have in your home, through many on-line retailers. The colour is not as important as everything inside the tent needing to be the same colour.
Making words perceivable.
We need to make a single word perceivable as a single word, so that it can be stored (to memory) to become available to be matched as recognisable when heard next time, but there are a few things we need to consider.
1) Slow it down!
For many with CVI the world is just too fast, as we explain in our Movement section, and this extends to what is heard in some.
Here is a link to a talk by Winston Churchill on You Tube.
Winston Churchill is a world famous orator, but let us see how much harder it is to understand him when he is speaking faster. If you can, view the YouTube film on a computer and click on the settings button, as indicated in the image below.
Next click on speed
And click 2, to listen to Winston Churchill speaking twice as fast.
We can still just about understand what Winston Churchill is saying, but it is more difficult.
We wonder if for the person with CVI, people talking sounds a bit like this:
So we need to speak slowly and clearly.
But when we slow words down, we naturally say the word by extending the vowels (a, e, i, o, u).
Try saying the word pen very slowly - we naturally extend the vowel 'e' so the word sounds like peeeeeeeen. Consonants are short, mostly sort of clipped, sounding letters, and do not naturally avail themselves to being extended - just try extending the letter p on its own.
If we go back to the video of Winston Churchill speaking, go back to the settings, but this time click 0.25 to hear what Winston Churchill's speech sounds like at a quarter of the speed, so very slow.
The full words are extended, not just the vowels. The reasons this is important is because if the person with CVI processes both sight and sound slowly, as we know from many affected children, extending the words (saying them more slowly) by only extending the vowels, then all the person with CVI is likely to hear is a lot of long vowels, which all sound similar, so we must make the whole word perceivable.
Let us choose the word kiss.
Practice saying it slowly, extending the k and a lovely long sssss at the end, making a one syllable word into a three syllable word. If you can, record yourself saying the word kiss a few times normally, then play it back very slowly (as we have shown here).
You may have to play a little with the speed you say the word to match it to the processing speed of the individual who has CVI. The technique is to gradually and progressively slow your voice until attention is given. At the end of this section we have listed a few common indicators that a person who does not have language is engaged, interested and hopefully learning.
2) Remove auditory clutter
In the tent you will have reduced the visual demands on the dorsal stream, but processing lots of noise is also demanding, and will use up the valuable processing channels we are going to so much trouble to release, to allow the ventral stream to work as effectively as possible to allow LEARNING.
Auditory clutter includes:
3) Start with single words
It sounds obvious, but we are so used to speaking in sentences that we can forget to only use a single word, as we commonly do for young infants. Many with more profound CVI can at first only learn from one meaningful thing at a time. Once that thing is successfully learnt it can be sorted in memory, and a second thing added.
We will continue with the word kiss, which we think is appropriate, because this is an approach we are expecting will be taught at home, by those closest to the person with CVI.
So our word kiss, said slowly, in a tent, without background noise or other words, should be perceivable for the person with CVI, even the most profoundly disabled. The only exception would be where the person is profoundly hearing impaired in both ears.
So we have our work Kiss, perceivable now, but what does it mean?
For a person with no language, it is just another sound, so we have to match it with something that is very easy to for the person with CVI to connect it to, and link the two together.
This connection needs to be something that the person with CVI has already engaged with.
The first thing is to engage with the person and to get their attention. Then let us think of that kiss - maybe on the back of the persons hand, as you purse your lips make a kiss sound and kiss the back of their hand and say, as you have practiced, the word kkkiiissss.
Then, whilst in the tent where the person can enjoy the sanctuary of having a break from endless exhausting processing, just repeat, and enjoy. You are teaching the most important skill that a person can learn.
Because the person is in their calm relaxing tent, with someone, who is connecting with them in a way that makes sense to them, the third part of the elements needed for an experience to be optimally learnable should fall into place, which is...
We all only learn when we are happy, calm and relaxed.
Being stressed, worried or frightened uses up huge amounts of processing power, essentially undoing all the trouble we have gone to, to create an environment to learn.
We want that lovely new word 'kiss' to be to be remembered, which means it will be given its own little storage place in your mind, so that when it is perceived again - whether it is maybe heard, or the sensation of the kiss is felt (or both), the person not only knows what it is - they now have a word for what it is, and so language develops.
You don't have to use the word kiss of course, in the example here Connor's mother used the word hand (Language & Talking Connor).
It has to be a single word, and the meaning has to be simple, unambiguous and consistent.
And the experience it describes already has to have meaning for the person with CVI - the new element you are introducing is the word - if you are also introducing a second new element to that new experience, then it's likely to be too much. We chose kiss because we thought most people at home would show affection to the person with CVI using a kiss.
Other examples (which can't all be practiced in a tent) may include:
With this process, you are developing the systems of language in the brain, and you need patience. This will be new and exciting for the person with CVI - a way to make sense of their world they have never had before, because the words used are perceivable and link to known experiences, giving them meaning.
As with the cycle of learning, namely:
The more it is repeated, while the person is happy and motivated, the more it will be reinforced.
Here are a few ways we can tell that the person with CVI with limited communication may be indicating they are making a connection with what you are teaching and so, learning:
Parents know the person with CVI better than anyone and know how they show they are happy - use this method, and look forward to the day they can tell you!
At the person's pace, add new words, matched as we have explained, and start filling their mind with meaningful words.
We are aware that there are many alternative forms of communication that are used with children who are considered non-verbal and have profound disabilities. We know that for some children with certain conditions they can be very successful. However, in relation to children with CVI and how their brains process, their effectiveness may be less, if at all.
Here are some examples, and why:
Multiple communication environments:
These involve the same thing being communicated in many different ways, maybe a word, a sign, a signifier and a picture card. This can be far too many elements to process at once, and all meaning can be lost in the mental muddle - less is more.
Communication with Multiple Pictures / Images
Anything that requires visual search (needed to look between different pictures) is going to create demands on the dorsal stream, reducing capacity for the ventral stream.
Many of those with more profound CVI have extreme difficulty with visual search, but for the more able, coping strategies can be learnt. These can be difficult and require patience and a lot of practice. For the more severely affected, however, anything demanding visual search needs to be minimised to optimise learning potential.
We don't understand why you would use an object in isolation when you can also use the salient word - and develop language, connecting the person with the rest of the world through the international medium of communication - LANGUAGE!
Most of us take for granted a skill we have, to hear any word, even one we don't know, and then be able to translate it into a sound we can say (speak) with the two being good match.
This is an incredibly complex skill - let us take the word CRISP - you have read it, and matched it with the word in your mind store, now say it out loud - crisp - easy huh?
Are you aware of all the different things you did to say that short single syllable word?
We are explaining this, because some may think that the person with CVI may not be learning language simply because they do not immediately repeat the word they are learning. For a person who has never spoken a word, they are at the beginning of a journey, and need time and patience to develop these incredibly complex skills, most of us don't give a second thought to.
The person may make a sound, possibly their way of trying to repeat the word, and just using their voice to make a sound is a sign that they have made that first link - that this is where that sound comes from. Think about it, that is a massive step in its own right.
The person may do some of the following to indicate they are learning:
Do not take a lack of speaking as a sign that the person is not learning language, speaking is a completely separate and difficult skill. Look for consistent signs that a word is correctly understood in context - for example one mother told us.
If I say the word 'shower' my child grabs hold of his plate because he knows the next thing is shower time - any other word he sits happily with his dinner, but say 'shower', not even directed to him, and he grabs his plate. He definitely knows the word - two years ago he didn't know any words!
This is just the very first step, we will be adding further sections with different levels following the development of language.
We recommend the book Baby Talk by Speech & Language Therapist Dr Sally Ward.
Her system of teaching works because it recognises that young children process a limited amount of information at a time. So enhancing each experience very shortly after it happens with a salient word, and building this up is effective, just as we have found it is for children without language who also have CVI and who too can process only a limited amount.
1) Time at home and in the garden.
Home, being the most familiar place is the optimal place to learn. If you have a pop-up tent, this can be used in the house and garden, like a portable perfect home classroom. Think about the things the person already has as part of their routines, like:
2) Night time / sleeping / not sleeping
Bedtime covers a long period and many elements, and it is too broad (at this stage) to link to a single word, but during bedtime there are many smaller experiences that could be easily linked, including story, cuddle, blanket and teddy.
Using the same approach, of matching a single word (said clearly and slowly enough) with an experience - ideally as it is experienced or immediately after (so long as the two can be easily matched), you can teach new words anywhere. The more busy or cluttered the environment the more challenging this will be, but the person will probably quickly pick up on a new way of saying things that is just for them.
4) Trips (e.g. shopping, play-parks, sports, parties, outings)
As with holidays, there are always opportunities. The environment will create more challenges to the learning process, but words should still be taught.
If the person does anything regularly, like horse-riding, or swimming, or a music group, use the word - just the single word. Once reinforced a few times (even though the person may not be able to say it) you can tell them they are going swimming, for example when getting ready to leave.
Just think of the huge difference that would make to the person's life, to know in advance what is happening, that they are being taken swimming for example.
5) Car journeys
Use the word 'car' for journeys in the car. Add elements from within the journey that can be easily connected with, like belt (for seatbelt), music, windy (if the window is open) etc
6) Socialising and visits to friends and relatives
As far as possible, encourage other people to use single words matched with experiences as we have explained.
You must believe!
When the person shows you that first little sign that they can learn, which might be no more than stilling to show that they are engaged and concentrating, that's your cue to keep trying. It is a long journey, but worth it.
Do not be discouraged if the person does not speak, as we tried to explain, speaking is a separate skill - see if you can pronounce the Russian words in the link below (which we know will be easy for our Russian users!)
A last bit about the brain
We have explained this approach using a simplified explanation of the brain's pathways. Think again of what you understand by a kiss, part of it will be the experience of what it actually feel like (the touch), this information will be stored somewhere in your brain, as will the many different emotional elements of kisses, from the healing powers of a mothers kiss as a young infant, through to adulthood, and each emotional experience will have its own place in your brain where it is stored, and then there is the word kiss which also has its own little storage place.
Think of these sections or storage places like little bundles of bioluminescent creatures in the sea lighting up briefly when disturbed. Imagine there is a vast number, relating to your wide range of experiences of a kiss since you were born...
when the kiss is experienced, or the word kiss is heard, you weave a transient net, that connects and draws together all the briefly activated illuminated bundles, to make the nature and meaning of the kiss known, understood, matched, and linked to past experience and to language.
There have been many studies mapping the functions of the brain, however most concern 'typical' brains.
We know that CVI has many causes, relates to many structural forms, and has many patterns, making the sensations experienced by every affected person unique.
Whatever the cause, if the person struggles in a cluttered environment, and decluttering (like working in a tent) helps them concentrate and relax, then it is likely they will benefit developmentally from reducing the demands on the dorsal stream using the ways we have described.
We will be adding further steps as sub-sections to this section, and will place notifications in our Updates section, via our Facebook page and on Twitter @scotlandcvi
We would love to hear how you get on, please email us on firstname.lastname@example.org
Your generous donations will be put to immediate use in supporting our charity...
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.