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Frightened (Non-Verbal Children)

We all can all remember an experience that has frightened us. Maybe it was a big spider or someone jumping out at you as a prank. Your reaction may have been to jump or scream. That reaction happened because your brain automatically released powerful chemicals into your body because it thought you were going to get hurt. The chemicals gave you a quick shot to make you stronger and faster, commonly referred to as fight or flight. The example of the spider and someone jumping out are two different types of fright. The spider (for those frightened of spiders) might just have been sitting on a wall not moving. Unless it's a poisonous spider it's not actually a risk to you. Your fear of the spider has been learnt. Someone jumping out at you is an instinctive fear but the brain's chemical process as a reaction is the same for both.

Learnt Fears

These can include the common fear of spiders, to fear of frogs, clowns, water, thunder, enclosed spaces, open spaces... almost anything. You might not know or remember where it came from, but sometime in the past this fear has been learnt. This is important to understand for your child with CVI, as some fears may seem completely irrational. It could even be your child appears to be only pretending to be frightened because they don't want to do something. We will explain this from the child's perspective.

Instinctive (Primitive) Fears

Your brain comes pre-programmed to protect you from harm, and operates a sort of radar system around you, constantly surveying your surroundings for threat - you are not aware it is doing this for you until, for example, someone jumps out at you. Your surveillance system will register anything moving fast towards you, and will pick it up from its visual movement, as well as how far away sounds are thought to be.

Some fears can lead to behaviours that may appear obsessive. If some of the descriptions below seem familiar, please take a few minutes to also look at the following page (Obsessive).

Frightened Children with CVI

With CVI, we know children can often appear frightened, even when there is no obvious cause. At the bottom of this page is a passage from a talk a mother of a child with CVI gave, explaining a nice quiet walk along a suburban street with her infant who has CVI, when suddenly for no reason her child started screaming so loudly she though he must need an ambulance - but there was nothing there and nothing wrong. Incorrect! From the child's perspective, there was very definitely something there, and something terrifyingly wrong.

You may have seen these extreme reactions in your child.

Some invisible force has created terror.

Invisible to you.

Invisible to you, does not mean it is not there for the child.

When looking at why a non-verbal child with CVI becomes frightened we need to look at what your child's brain is doing.

There are three cerebral visual impairments, common in non-verbal children with CVI, that can cause frights:

  • 1. Movement - Things that move too fast may not be seen, until they slow down, when they can suddenly become visible when slow enough, seeming to appear, or pop-out (or jump out) from nowhere, just like someone jumping out on you. Something that seems to be going very slowly to you, might be perceived as going extremely fast to your child.
  • 2. Distance - Judging how far away things are, may be difficult, so something that is a safe distance away, may be thought by your child to be much closer. They may think it so close that they are going to be physically hit by something.
  • 3. Visual Attention - Your child may not see everything you see, especially where there is movement, noise and clutter, but it means things can pop-out, as if from nowhere

What about all three combined, as is the case for many?

Imagine a jogger in the park coming towards you and your child. You see them, they are just jogging, you can see there is plenty of space, it is calm and quiet as you know your child likes it to be. To your child, the jogger may not be visible in the distance, but as they get closer your child may feel they have become uncomfortably close, so close that they're going to collide, because to your child, the jogger is going super-fast. Your child's brain has calculated that this is going to really hurt and has prepared your child, who may start to scream, or go into a ball (to protect themselves) and become extremely distressed, for a crisis - just a jogger in a quiet park. We described this in more detail in a page called Looming, link below.

A lone jogger coming towards your child and yourself, in a lovely quiet park with lots of space.  What could be frightening about that?A lone jogger coming towards your child and yourself, in a lovely quiet park with lots of space. What could be frightening about that?

Another issue can add to the frights...

  • 4. Noise Where you child has to process many additional sounds, everything can be more difficult, and the reactions more severe.

So, mindful of the above, here are a few general suggestions:

Explained from your child's point of view...

Am I sometimes, often or always:

Jumpy?

  • By jumpy I mean something that has startled or surprised me to make me jump, but mildly. Maybe I show this with a slight jolt, sudden intake breadth or a sound like a yelp.
  • Please...It might not seem very serious but my brain has just calculated that something might hurt me. What do you think it was? Look around me? Is something different, did someone in the distance shout maybe? I might not be able to tell how far away the noise came from and it felt too close? I know I am not screaming with fear, but even being made to slightly jump is not very nice.

Terrified?

  • I am almost certainly screaming and fighting, possibly trying to get away.
  • Please...you may know I am perfectly safe, but my brain thinks I am in very grave danger. Firstly, help me to feel protected. One of the best ways can be just to hold me. You, by holding me, are creating a protective barrier in my mind. That is very powerful. You need to judge at the time what is right for me, but I need the whole situation to be calmed. It may have been no more that a person cycling past us in the street to cause this, but the threat was very real to me, and I may need a lot of reassuring and quiet calm time to recover. You may need to take me to somewhere I feel safe, for example home.

Frightened of some People?

  • Certain people frighten me. This might be specific people, or anyone whom I don't know.
  • Please... Think of what people have done with me that I have not enjoyed, or that might have been uncomfortable and hurt, or frightened me. Something has led to this behaviour. What was it? When was it? My fear might seem irrational or unreasonable to you, but it is real to me, and it can't be ignored. To deal with my fear you first have to accept that it is both real, and to me, justified. With the person / people who frighten me, see if you can reintroduce them very slowly, but as soon as I show distress they need to back-off, so I feel in control, otherwise I will be too frightened and it will never be sorted. I may need a lot of time, so think about who it is, and if I really need to spend time with them?

Irrationally fearful?

  • I may be frightened of certain foods, or of a particular room, maybe a sound, like the hand-dryer in the bathroom or an activity like going swimming or having a bath.
  • Please...it might seem like I am being irrational or unreasonable, but something is frightening me. Whatever it is, you know my life, think back to when it started... Did someone try to force me to eat something? Did my head go under the water in the swimming pool? These fears had a starting point. Next, think... you know my life's challenges. Whatever it is might be difficult for me. How important is it? Can it just be avoided?

Common Frights

In addition to the above, we have heard repeated accounts of the following situations that non-verbal children with CVI are frightened of:

  • Hospitals and clinical environments, possibly from many interventions as an infant.
  • Face sensitivity - anything touching their face, including brushing teeth, a flannel, hair-brushing, haircuts.
  • Forced Restraint

Sleep
Anything that means that the fight or flight reflex is regularly activated, as is the case here, can leave your child feeling physically very tired, and possibly a bit lethargic. They then need rest and sleep.

Further reading

CVI Meltdowns

Looming

Protective Shields

This is part of a talk given by a parent at the CVI Society Convention 2018, which has been edited for this page. For the full original transcript click here (excerpt from text after slide 24).

...I used to push my son along the quiet back streets from the town centre back to my house. Suddenly, he'd start screaming - and I'd be looking around for something, but there was nothing, so I convinced myself something awful must be happening in his brain and went to the doctor with that concern many times. Here's what I now think had happened...

Walking along, all quiet, a car approaches, not a loud motorbike - I'd have picked that up at the time - just a car, approaching a turning - it slows down, where it suddenly becomes visible, moving, at what to me would be a snail's pace but to my son, who processes movement and speed differently, is probably approaching at lightning speed. It had come out of nowhere and was almost certainly going to kill him - that is what his brain had calculated, and had sent all the relevant signals - imagine right now, an engine part has fallen off of a passing aeroplane and crashes through the ceiling - this is not about conscious calculated responses, this is about brain reactions - and then imagine the confusion, having braced yourself for certain death...and imagine that happening repeatedly, sometimes daily - so you resist going out, going anywhere new...

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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.