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People (Non-Verbal Children)

CVI can create problems with social interactions. For a non-verbal child with CVI these are even more difficult. The difficulties can range from the child being extremely shy, to being uninhibited, or unresponsive or disinterested. We have listed a few examples below, from the perspective of what you may see, and followed these with relevant examples viewed from your child's perspective, along with suggestions of the help they may need from you.

Parent's Perspective

My child sometimes, often or always appears to...

  • only care about themselves
  • be completely disinterested in how people are feeling, even people really close to them, it is like the only purpose of people is to serve them.
  • hate or be terrified of all but a few very well-known people, and may lash-out, yell, throw things or cry.
  • hate or be terrified of certain specific people, and may lash-out, yell, throw things or cry to show it.
  • have absolutely no inhibitions around people, which may involve standing too close, touching people, taking / snatching things away from people / other children
  • ignore people
  • be naughty
  • have no sense of what friendship means

So that is what it might look like, and these are really important problems, for you as a parent, but also for your child. Let's look at it from their perspective....

Child's Perspective

Favourites

  • You are my favourite person to be with, that is why I fight to be with you, because I like you best. I might not be able to show that like other children, but just the fuss I make when you are replaced with anyone should show you how important you are to me.
  • Please...think why I like you so much, it is almost certainly because you know me best, and understand me more than most. When introducing new people, let me get to know them in my own time, and make sure you tell them the things I like, so they know too.

Least Favourite People!

  • My reasons for not liking someone may be because they do things that upset or frighten me. They might not mean to, and they may be trying to help, but I don't understand that. Or, it might be that other people have upset me, and I am now treating all new people (strangers) in the same way, even without knowing them.
  • Please...I don't learn anything when I am unhappy, this is my way of communicating with you that something is wrong, so with the person, figure out to help me. Do not force me to do things - how would you like it?

Indifferent

  • I may not gesture using facial expressions, but please do not take my absence of a facial expression as an absence of caring. Your emotions are extremely difficult for me to learn, because I don't see them, or understand them.
  • Please...help me learn. Use a word consistently, so for example if I am smiling or laughing say 'happy', and use the same word when you are 'happy' so that I can learn to connect the word with both a nice feeling I have and the same nice feeling you have. Say the word on its own, and really slowly, so I can hear it clearly. I might not be able to say the word, and I might not be able to show the emotion, but it means I can learn to understand the emotion. Think of the main emotions I am affected by and give them simple one word names when I am showing them, like tired, and between us we can learn. Right now, it makes very little sense to me.

Lacking Inhibitions

  • You live in a world of loads of rules, particularly around how people are with each other, like no touching unless you know someone really well, or not taking things without asking first, or even standing too close to people or leaning on them.
  • Please...understand, I do not know or understand these rules. People are wonderful, but can also be confusing or frightening. I might touch someone so that I can work out where they are, or just to experience what they feel like.

Self-Serving

  • So you think I don't care about you and only care about myself, and your only purpose to me, is to serve me?
  • Please...remember I have not learnt to express myself like you know. If you are one of my favourites (see above) that is my equivalent of telling you I think you are truly wonderful - the best!

Unresponsive

  • It looks a bit like I am ignoring you, or pretending you are not there.
  • Please...think about what I am doing. Maybe I am in deep thought, or maybe I am very tired, or maybe something else has my full attention, or maybe I am ignoring you because I want you to go away, or maybe, I can't see you so I don't know you are there. Think, is this how I often am with the same person (see favourites, least favourites above)? What else is going on around me, that might need resolving?

Naughty

  • Ok, I'm not naughty! Let's just get that straight right away. I may have developed behaviours that mean some of the decisions I make, you may think are not very good decisions. The key word is 'developed'. These behaviours did not come from nowhere, they were developed as a reaction to something. Maybe a frustration because I couldn't communicate, or because I was scared.
  • Please...think about what I am doing and when? Do you think this is something I am doing deliberately, or is it a misunderstanding or accident? It may well be a mix of all three. If I make poor decisions, please think about what is going on around me, and what can we do together to work on those behaviours, and develop them further, but this time in a different more positive way?

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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.