What is CVI?

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Emotions

In relation to the person with CVI, emotions can be thought of in two broad categories:

  • 1. How the person is feeling
  • 2. How the person interprets how other people are feeling

Hundreds of separate emotions have been identified, and each has many subsets, we do not intend to go through all of these. We know that people with CVI can have unusual, unexpected, atypical and inconsistent emotional responses and reactions. In this section we are going to try to explain a bit about emotional development. This knowledge then needs to be paired with the unique knowledge of the individual with CVI and their emotional development to date.

With this our hope is that you may have a better understanding of why the person with CVI responds and reacts emotionally in the way they do, and if approaches are needed, suggest where they might be found.

Emotional Development

Emotions are learnt. Many of our strongest emotional behaviours are developed in our first year of life, when we did not have language. This is the case for all of us. Emotions, like everything else that is learnt, are the product of the process of learning we explained in our Access section.

Learning if the product of the repeated cycle of:

  • Experience
  • Memory
  • Recognition

For optimum learning, the Experience (from the above cycle) must be

  • Perceivable
  • Meaningful
  • Motivational

One of the first emotional reactions, of a new-born baby, is the image of their parent or carers face. Where a baby might have low or no vision, building these early emotions can present challenges. This has been well researched and there are many books and papers on this subject (as a web-search will reveal).

But the child with CVI, who may or may not have low vision, may also be affected by:

  • Inconsistent, confusing and sometimes frightening vision
  • Challenges processing sounds at the same time as processing vision (see Cerebral Auditory Impairment CAI) - Challenges processing when there is too much going on at once (see 3D Rotating brain for images and explanation)

Researchers studying emotions use a general rule that:

90% or more of an emotional message is non-verbal

Daniel Goleman, Emotional Intelligence, ch7 p97

How is this young infant expected to learn emotions by being expected to 'read' them in others, the way children who do not have CVI do?

We think this is going to be with great difficulty, and this is demonstrated by some of the comments parents have shared.

Amelia

In our section Amelia's Great Climb, Amelia was asked if there was anything she didn't like or frightened her. Her reply stunned her mother

"I get afraid when people shout at me, I don't like it, sometimes when they shout very loud and roar at me, my heart starts beating loud, I can hear it and I try not to cry."

We noted "We know that Amelia does not live in an environment where she is roared at, or even shouted at, however, we also know she can struggle with interpreting auditory information (see Cerebral Auditory Impairments). For example, a child in Amelia's class may raise their voice directed at another child, and Amelia may feel that she is being shouted at".

This is because Amelia has not been able to learn that there are different types of raised voices, including:

- happy and excited raised voices
- angry and frustrated raised voices
- threatening and frightening raised voices

Because Amelia has, like many with CVI, combined CVI and CAI. To tell the difference between these sometimes subtle differences between raised voices, requires learning, which, as we stated above requires an experience that is perceivable. Often the subtle differences are to be found in the facial expression or body language, but Amelia has not been able to learn this because they are visual cues, and her CVI means she doesn't see them.

It would appear that because Amelia can't tell the different types of raised voices apart, she feels frightened, like someone is roaring at her.

Greta

Greta, a child with CVI, was also asked if there was anything she didn't like or frightened her. Her mother replied:

"One thing she hates is the sound of anyone in distress or crying...especially children."

It is difficult to know whether Greta is upset because she is empathising, that is feeling sorry for the other child, or because on some level she is feeling uncomfortable or threatened by the distress in another. Greta is unlikely to know why she hates the sound of distress, it is possible it is a behaviour that formed during a time before she could speak, so she is unable to articulate it, to herself or anyone else.

Emotional Strategies

What is important with Greta and Amelia is that now these emotional reactions are known, that action is taken so that they don't find them so upsetting. For example, ensure people who are with Greta know that if a child starts crying, maybe because they fell over in a park, that she is likely to become upset too, and to reassure and support her.

If you support someone with CVI, consider what in other people's behaviour they find frightening or upsetting, if you can, ask them - you may be surprised. Then consider the enormous challenges to learning CVI presents, and how much harder this is around the extreme subtleties of emotional behaviours.

Consider:

  • Rather than relying on someone with CVI to be able to understand what a person is feeling by their body language, expression or even tone of voice, get used to explaining clearly, using language the person understands, what you are feeling, and encourage others to do the same.
  • Ask the person with CVI how they are feeling, they may not look interested or excited, when they are. Many of these expressions are learnt visually. People thought a girl called Heather was not interested when they were talking to her because she turned her back on them. In fact she was very interested, but could not hear them whilst looking at them - read the account here.
  • For those with limited communications, those closest to them will need to act as their proxy, using their unique insight and knowledge, and be supported in explaining this to others. Not all people are confident doing this, particularly if it is parents explaining their child to professionals (some of whom think the role should be the other way around). Where this is the case, support should be given to everyone, for the sake of the person with CVI.
  • Apparent Emotional Outbursts - Young children with CVI may strike out at other children approaching from the side, probably because they appear to loom into view. This miscalculated impulse may be misinterpreted as emotional antipathy or aggression, when in fact the child with CVI is desperate to make friends (but on their terms).

To understand the emotional behaviours of the person with CVI you need to understand their behavioural development to date. We have several sections on behaviours to explain more about this.

The Bad News

You can't erase the past. If the person with CVI has been traumatised by past events, these are likely to stay with them.

The Good News

With understanding, there is an enormous amount you can do, through re-educating, and helping your child to relearn. Key, again because the strategy involves learning, is that you understand how the individual learns, and with that knowledge ensure this path is:

  • Perceivable, meaningful and motivational, so that the
  • Experience can be remembered and recognised, and learnt!

We have heard children with CVI described as:

  • distant
  • aloof
  • aggressive
  • not making eye contact
  • lacking empathy

This is an outside to inside perspective (see Gordon Dutton's blog 5)

Let us try to see this from their perspective (inside to out)

  • Distant - I don't know how to form relationships or get close to people, I am frightened of rejection, you are confusing me, I don't know what you want.
  • Aloof - I don't understand the rules of closeness or intimacy
  • Aggressive -I am feeling very frightened and physically threatened
  • Not making eye contact - I can't see all of you, only bits of you at once, I may not recognise you by what you look like, but I know you as well as anyone else knows you, in my way.
  • Lacking empathy - I have feelings, but I don't understand all the rules of your feelings so I don't know what to do, if you just told me it would be so much easier, because I have got it wrong so many times trying to guess.

Stages of Emotions

For all of us, our emotions travel with us on our journey through life, as our needs change with our different ages. This is the same for people with CVI and in addition to the above they may need different levels of help and support as they approach different stages, including:

  • Infant & early childhood family relationships
  • Early school / friendships
  • Entering adulthood, intimacy
  • Workplace relationships

Some services and charities offer help with emotional support. Please ensure they understand the unique nature and needs of the individual, and do not use generic approaches. Many still treat all visual impairments the same and we know that accommodations allowing for low vision alone or ocular visual impairments can be insufficient and detrimental for a person with CVI (link to paper here). Ask what they propose and why - if it can't be linked back to the nature of the person's needs, then maybe you should think again.

The 5 Areas

In every sub-section of Home, we consider the application and implication across five broad areas (listed below), which cover how many with CVI will spend their time. They will 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.

1. Time at home & in the garden

If the person with CVI can speak, encourage everyone to use language they understand, matched to current experience, to explain what they are feeling.

If the person with CVI does not speak, be mindful of the tone of voice everyone around them uses, trying to avoid raised voices and shouting (and inevitable arguments at times) - the person may think they are being roared at, as Amelie (above), but can't tell you.

2. Night time / sleeping / not sleeping

Challenges with sleep and bed time can be related to emotional development, for example:

  • Fear of the dark
  • Fear of being alone
  • Not liking being away from a key person e.g. parent

These challenges in turn may become emotional reactions, like refusal to go to bed, or fighting, getting stressed and sometimes CVI Meltdowns. CVI can be frightening for many reasons, particularly if the child is alone, and these reactions may be their way of saying

  • I'm frightened
  • Don't go, I will miss you
  • I don't understand the dark, where is everything (as was the case with a child we featured in newsletter 6)

Please review our behaviours sections for further information and suggested approaches and strategies.

3. Trips (e.g. shopping, play parks, sports, parties, outings)

Be mindful of behaviours in others the person with CVI might find upsetting, always ensure someone is able to support them if necessary.

4. Car Journeys

Cars, for many, are safe places, but they can also be a place where tensions are raised, for example fighting between other children, arguments, irritation at other drivers. Remember the person with CVI may not know this is not directed at them.

5. Socialising and visits to friends and relatives & holidays

Try to ensure everyone understands the same rules, just say how you feel, clearly, without subtle tones or irony.

Final notes

People with CVI are not stupid or lacking in feeling, but they have a visual impairment that in many also affects how they process sounds, and alas they are not mind readers!

We asked Mary who has CVI and is able to articulate her experiences, if she could help explain further and offer any general strategies that have helped her.

Mary explains both her challenges and simple approaches she can use anywhere to help her.

I often find that the emotional responses to the difficulties that come about as a result of my visual issues, are more problematic than the visual issues themselves. For a long time, I had no control over how I reacted and this often left me feeling embarrassed, frustrated and at times, even ashamed. The best example of this, is when people have loomed in front of me, or suddenly appeared beside me. I normally find this very frightening and cannot control the angry outburst that comes out of my mouth as a result. Of course, most of the time, the person didn't realise I couldn't see them before they started talking to me, or touched me, so do not understand why I am suddenly yelling at them.

I also often found myself so anxious and uptight in difficult environments that I could not enjoy the activity I was there for, like going out for a dinner. Once I got home and was in a safe place where I could relax, I would get annoyed with myself for not trying to calm myself more in the restaurant so that I could actually enjoy the experience.

It was these kinds of experiences that led me to try and develop strategies to deal with the emotional responses, so that I could start to enjoy life a little bit more and partake in activities I found difficult. Most of these are really simple, but it was something I had to teach myself to do. For instance; taking regular breaks away from crowded environments - even if that meant taking a really long time to go to the bathroom! If need be, I also get someone to come with me, especially if it's an unfamiliar environment. Another one I often use, is mindfulness breathing, where I try to block out everything around me and just count my in and out breaths up to 10. I do this as many times as I need, with and without my eyes shut depending on where I am. Another good option is distracting myself from the scene around me by stopping to have something to eat or drink and just concentrating on the process of eating, which blocks out everything going on around me.

These kind of strategies work most of the time. However, for them to be really effective, I had to learn to read the early signs of when things were starting to get overwhelming and I was getting emotional. It is important to implement these kinds of strategies early, because once I have got extremely stressed, I am not able to think straight and do not remember to use any of them.

We recommend the book Emotional Intelligence by Daniel Goleman, available internationally.  This is a good introduction to all areas of emotions, with further reading if desired.  When reading this book, consider the added challenges of CVI in terms of emotional development.We recommend the book Emotional Intelligence by Daniel Goleman, available internationally. This is a good introduction to all areas of emotions, with further reading if desired. When reading this book, consider the added challenges of CVI in terms of emotional development.

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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.