Many people with CVI are unaware that they have it. They find endless challenges performing basic tasks, that other people seem to find so simple, for example:
Whether CVI has been present from birth, or was due to an event or injury sustained later in life, the period where the visual impairment was unknown (agnostic period) will be challenging. This includes where there has been possible labelling (for example of autistic spectrum disorder, attention deficit disorder, dyspraxia), no diagnosis, or a correct behavioural diagnosis, but without the required level of understanding or support.
Written below is a short account of how certain behaviours can evolve with CVI, whether combined with other considerable learning and medical challenges, or alone in an intelligent and articulate individual. This information has been compiled from first hand experiences, and we are very interested to hear your stories.
The starting point is when the CVI occurred, not when it was first noticed, reported or diagnosed, which will be one of either
2) Following an Event / Injury
This is the period from the starting point (above) to the point when the CVI is fully understood in relation to the individual.
During the agnostic period, the individual, and those closest to them, are unlikely to best understand the challenges they face. It is likely that they will have no idea that their 'reality' is different to that of anyone else.
This period for many will stretch years, and cover key stages of social development.
During the agnostic period, behaviours fall into two categories. Those formed from 1) a fear of injury, and those formed from 2) a fear of social embarrassment.
The behaviour starts when the brain thinks there is an imminent physical threat. For many reasons due to CVI, the threat may not be real, however it is real to the person. When we feel physically threatened we will automatically protect ourselves in a number of ways:
These behaviours will not make sense to someone in the same situation who does not have CVI, because to them there may be no physical threat.
Leon has CVI and is starting nursery, and standing in his new playground with his mother. Children are running in all directions, and shouting and laughing. The mother is not aware of any physical threat, if she was she would take steps to protect Leon.
Leon can't judge the distance of all the children running around him, and constantly thinks someone is about to run straight into him. Leon becomes anxious, then stands closer to his mother for protection, and starts holding onto her tighter and tighter.
The mother doesn't understand Leon's anxiety, and initially may put it down to nerves, but will increasingly feel Leon needs to learn to join in, and stop being so clingy. The mother pushes Leon away when he is holding onto her. The mother is acting out of love, she wants to see Leon confidently playing with the other children.
Leon's primary 'instrument' to protect himself (his mother) has been removed, but the threat if injury from collision is still very real. Leon is becoming increasingly frightened, he is frightened and the person who protects him most (his mother) is pushing him into harm's way, as he sees it.
Leon's options are now very limited. He is in an enclosed space so can't run away, he becomes more and more anxious, to the point where he no longer has any control and has a CVI meltdown (see below).
This experience will be awful and traumatic for Leon.
Because it is not understood, again out of love, the mother persists in making Leon stand in the playground, but the threat is real, possibly reinforced by a child bumping into him on occasion.
To Leon, the playground is a frightening place, and this fear is constantly reinforced, and forms a behaviour of aversion to the playground. Leon's fear is turning into a severe phobia.
The behaviour may evolve to include the playground when it is both busy and quiet, and extend to other playgrounds, and other places that are crowded.
Leon doesn't understand why he is frightened.
Leon can't help his behaviour, he does not have control over his reactions to an imminent physical threat
Leon's mother is worried but doesn't understand either.
Leon's fear of the playground, even when it is empty, or other playgrounds he has no experience of, is a secondary fear, from the initial fear of collision being reinforced over time. This secondary fear is sometimes referred to as Pavlovian Fear. The behaviour from the primary fear (of injury) has been conditioned, and extended to a fear where there is a perceived threat, whether known or unknown.
This Pavlovian fear is important to understand. As Leon gets older, his dislike of busy places is constantly reinforced, but he can't identify it as a fear of collision anymore, it is a fear of busy places.
Leon chooses an increasingly isolated life
Leon has simply never liked crowds
Leon gets lonely
Leon gets depressed
Leon has no understanding that this all started on a playground many many years ago
Leon still doesn't know that he has CVI
Leon's fears and behaviours continue to be reinforced.
This only applies to those with self-awareness, but by proxy can apply to carers and parents, which would have an impact on their charge.
For all people with CVI, the challenges of developing healthy social relations with other people presents unique challenges. The examples are endless, but to demonstrate how these can affect our behaviours let us use a few examples.
Sam started nursery with Leon. Sam happily ran around the playground. Sam had a little friend called Grace. One day another child messed up Grace's work and she was sad. She went to her friend Sam for support but he didn't seem to care.
Sam can't read facial expressions.
Sam doesn't know it.
Sam has no idea that he has upset Grace
The next day Grace chooses another child to play with. Sam doesn't understand why and is upset. This scenario is repeated, and over time Sam becomes increasingly less confident making friends.
Sam doesn't know he has CVI
Sam just thinks he is not the sort of person people like.
These true stories are heartbreaking. With CVI the biggest challenges are people:
Social relationships are as important to people with CVI as anyone else, they can just be harder. Without understanding their condition, people with CVI can become:
Socially Isolated and
Socially lacking in confidence
Mary explained her challenges, growing up with CVI without knowing she had it:
"the abuse and negative feedback you get from not only the general public but people that know you as well. I don't know how many times I got told off by teachers, parents and other adults for doing something that was vision related but nobody realised. I have also been yelled at, abused and laughed at by strangers when I have done things like walk into them or a wall/object. Also people do not understanding why I haven't responded to them when they have waved at me or seen me somewhere and they think I have completely ignored them."
Only with a complete understanding of your condition can you start to change the direction of your behaviours, which to this point have been constantly reinforced, creating deep rooted subconscious anxieties. This requires:
1) An understanding of how behaviours have related to your visual impairments, which means you first have to understand CVI. This understanding is ongoing and evolving.
2)Strategies to help you manage more effectively. These may include:
3) Support - primarily from those who love you most, but ideally with caring professional input.
4) A plan, using baby-steps of controlled exposure "move from the known, to dip a toe into the knowable unknown".
5) An understanding that the plan is ever evolving and constantly needs to be adjusted in line with
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