What is CVI?

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Safe Places

Imagine knowing it's normal to have vision like a lighthouse in the mist. What you point your eyes at, you can see if you pay attention, but all around it's hazy. This is, in a sense, simultanagnosia. We see what we're looking at as a complete picture, but really it's made up from many glances. Many with CVI make fewer glances and their everyday vision is patchy. They see fewer items. Seeing is harder. It needs more concentration. This can be stressful, especially in new places with new people who don't understand, and the stress can build up. A 'Safe Place' where everything is known, unchangeable, comfortable and predictable becomes the way to go, but look out if anybody or anything disturbs this.

When describing behaviours, many people have reported seemingly obsessive behaviours. With Connor it is his television, with Mary it is the very specific order of things in her home.

In this section we are going to take a deeper look at these specific behaviours, because rather than being obsessive behaviours, it may be that they are critical support systems the person has built up.

Lucy's mother explains

Woe betide if anyone - visitors included - touches her stuff. You can touch anything else - but not her stuff.

If she's aware of you picking up something of hers - she'll shout out or complain and possibly try to grab it off you.

Katherine's mother adds:

I would say Katherine finds invasion of her safe place very difficult to deal with. Unfortunately, due to her medical problems, she can't ever be too far from us. However, she does have access to a room downstairs for her to chill, especially after school. This works well until someone needs to go into that room, so we avoid it as much as possible but sometimes it's inevitable. Katherine doesn't ever watch TV, she used to, but now she only watches things on her iPad.

I'm going explain this the best I can........ How she reacts appears really over the top. It's like someone has gone in the room, turned off what she was watching, and mixed up and moved and hidden all her personal items, when in fact they haven't even spoken to her.

Her reaction to it, is almost like she's completely lost her way, and has forgotten what she was actually doing or watching and is unable to get herself back to where she was, before the person came into the room.

To try to understand these particularly severe, seemingly disproportionate behavioural responses we will consider how they may have arisen, how they developed, what triggers them and what purpose they serve.

The Arising of Safe Places

If we think of our brain processing as being like a computer, the more we ask it to do the more it is challenged, and with each additional task, all the others are slightly diminished. When driving your car, if you talk on your phone at the same time, part of the concentration required for driving is shifted to the call, and your driving skills diminish, making an accident more likely (this is why talking on your phone whilst driving is illegal in many countries).

If we use the analogy of the computer's Random Access Memory (RAM) which runs the applications, just like for our conscious brain, it is limited.

When you answer a call whilst driving, you reduce the amount of RAM given to your driving. On a computer, if you are only doing one thing, maybe looking at this webpage, the computer should be able to cope well. If you have several webpages open, plus other programmes, some of which may be downloading information, or performing upgrades, the computer will become slower. There will be a point where there is too much to process, and you will notice glitches, things stop working, and it may crash and need to be completely re-booted.

This is a bit like everyday mental processing for the person with CVI. There is, in a sense, less RAM. Simple things other people may take for granted can be very challenging.

Think of a nice thing, like a trip to the playground.

Now revisit the section on simultanagnosia. The playground won't make any sense, it will be full of noises that can't be anchored, which is almost certainly confusing if not frightening at times. Quickly the person can become mildly anxious, which makes visual processing even more challenging, and a downward spiral starts. Now add optic ataxia and the looming effect - things can appear closer than they really are, maybe a child running past appears to be on a collision course, and the person, already anxious suddenly feels a panic - they are reacting to the fear that someone or something is about to collide with them.

So just this seemingly simple nice trip to the playground can be overwhelmingly difficult for the person with CVI to process, and just like the computer they will:

  • slow down - become fatigued, switch off / zone out and possibly even go to sleep
  • start glitching - become irritated, call out, moan, maybe try to grab or hit something
  • crash - CVI Meltdown, where the individual is no longer in control of their actions, akin to the 'fight or flight' response (see previous section CVI Meltdowns)

For the person affected, it seems that in all this chaos something emerges that is consistent, and through that consistency it provides a degree of calm, and they create a connection with it. Over time, with reinforcement, this connection becomes more important. To understand this let us consider four examples and the things they connected with and why:

Lucy is an outgoing girl who loves company:

"Lucy loves visitors. Every ring of the doorbell she rushes to see who it is.

She really loves company and everyone is immediately referred to as "the friend/s or new friend" however "Lucy likes to be in control of what she wants to play with, which story to read etc".

Lucy's things create a consistent framework that she knows to be her reality. Lucy's stuff, (and "Woe betide if anyone - visitors included - touches her stuff") is to Lucy, an extension of her self. Interfering with Lucy's stuff is by default, also altering something that is safe to Lucy, which is very threatening.
Lucy's stuff is Lucy's safe place.

Katherine has her room, an actual physical safe place. The world to Katherine, like the little example in the park (above) is extremely challenging to process. In this one place things stand still, they stay where they are.

Katherine's mother adds

"She likes to get her school uniform ready each night and she likes it placed on the floor of our landing because she can see it better there, than when in her bedroom. She'll get dressed ok with help, but if another family member comes out of their room and walks along the landing to go downstairs, or to the bathroom, she then gets upset, loses her way and finds it difficult to get back on track and find the remaining items of clothing".

Katherine laying her clothes out creates another safe place for her, where she feels in control, and in turn this will help her feel calm, able and content.

Connor's mother started placing him in front of the television on the advice of a friend. She didn't really see the point as at that stage he was registered blind and considered to be visually completely unresponsive. However Connor's mother quickly realised that he engaged with a DVD of nursery rhymes.

Connor's mother writes

"The first time I notice any extreme response to the television was one day when Connor was strapped into his chair with his nursery rhymes on whilst I was doing something in the kitchen. Suddenly he started screaming, I thought his chair must have tipped and he'd cracked his head on the floor. I rushed in and found his older siblings sitting on the sofa looking terrified - 'what did you do?' I shouted, and then I saw...they didn't think he'd notice, and had changed his nursery rhymes over to Sponge Bob Square Pants".

For Connor the television presented something that was consistent, it didn't move, it made the same sounds and showed the same images or the few select nursery rhymes he watched over and over and over again. This was the only place where Connor could relax. The television with very specific programmes became Connor's safe place.

Mary's safe place is her home. Mary is extremely particular about where and how things are put away, but this is because Mary needs that level of consistency to find things. Just to perform everyday tasks like making the dinner is made extremely difficult if things are not where they should be, because Mary can't find them. Mary is more than capable of making the dinner, but imagine someone had played a game and hidden all the ingredients around the house and you have to find them before you can start. For Mary, if things are not where they should be, this is the challenge she faces, even for seemingly simple tasks.

Mary can't order the world outside, but the order within her home is very important to her. It is her anchor that allows her to go out into the world she can't control and face the daily challenges her CVI creates.

Mary reflects

"The hardest times that I have faced over the last 20 years have been when I was in situations where I didn't have a completely safe and secure home environment to retreat to. During my first year at university I lived in the halls of residence and this was extremely difficult. I really struggled with many aspects of my life that year. Flat sharing was just as hard, as the only place I could let my guard down was my room. Halfway through my second year, I almost gave up university because it was so hard, I just wanted to go home."

We can see with these examples how safe places seem to have emerged, almost like a calm from chaos, the known from the unknowable.

The safe places don't have to be a physical space, as with Mary's home and Katherine's room or Connor's dvd with his nursery rhymes. This has meant he can feel safe and happy and calm when he goes to stay with his grandmother. Lucy can take her stuff with her too, and control it as she needs to at home.

Examples of Safe Places

  • an actual place, a room, house, corner
  • an experience, like a television programme or song played through headphones
  • things, belongings, items
  • a process, like placing the school uniform in a particular place

Safe Places - Characteristics

  • consistent, they don't change
  • they are known
  • they can be controlled (see below for when not controlled)

Safe Places - Intrusions

The need for a safe place for each person appears to be clear, and important. We learnt about these safe places however from the obsessive like way each individual protects them. The breaches of the safe places we have called intrusions.

Just as safe places come in many forms, so do the intrusions, including:

  • the intruder - a person or thing violating the physical space, messing with sacred belongings or changing the television programme
  • the imposter - it may be that certain known people, for example family members, are permitted access to the safe place, but an unfamiliar person can create creating a feeling of unease
  • the inserter - someone has added something to a favourite scene without permission
  • the thief - something important isn't where it should be or has been moved
  • the muddler - things are there but have been moved around
  • the starvation - I have been away from my safe space and I don't know how to get back to it and I can't cope any more

An infringement on any safe place is not unlikely to be met with the most extreme reactions, repeated from the CVI Meltdown section:

CVI Meltdown Emotional Reactions:

  • totally overwhelming fear, causing a very real perceived threat of physical injury (for example from looming objects, due to optic ataxia)
  • emotional stress, which could be made worse from sensing the worry
  • stress, anxiety, frustration or anger of those caring for you tiredness brain fatigue (resulting from trying hard to cope against overwhelming odds)

CVI Meltdown Behavioural Outcomes:

  • screaming
  • lying on the floor / unable to stand / walk
  • physically attacking
  • escaping

Rather than thinking of safe places as obsessive behaviour, perhaps it is more accurate to see them as very important coping mechanisms that need to be understood and respected. These behaviours can however get out of control, and Connor's were so extreme that he fought attempts to leave the house.

Safe Places as a Strategy

Understanding the person's safe places can provide a very useful tool. Many people with CVI feel uncomfortable away from known places and experiences. Anything new or different, for example going on holiday can be challenging.

Things to consider to help accommodate the person in an unknown setting might include:

  • finding or dedicating a quiet uncluttered place for them to relax
  • taking important personal items
  • recreating experiences - for example Katherine likes being independent and dressing herself, so dedicate another place for this important process

There are a few useful tips when using safe places to help the person with CVI not just tolerate, but ultimately enjoy new experiences:

  • everything must be controlled
  • take things slowly, move from the known, and only take a small controlled baby steps into the unknown
  • the person must understand what is happening, and if communications are challenging, reinforced systems need to be established by gradual build up and repetition

Connor has been learning to embrace new experiences using this method. His mother describes one of their approaches using a blue pop-up tent (creating a temporary artificial safe place away from home):

"Connor was so anxious of everything he didn't know, that he wouldn't leave the house. If people he didn't know came into the house he would invariably go to his room. As a family we were completely divided, and I was often home alone with Connor whilst my husband and the other children went out.

We had used a tent at home, and decided to try taking one out with us. The day was planned very carefully, we were going to a local beach, so the drive was going to be short. We took two cars, so if it was too much for Connor I could take him straight home again.

I stayed with Connor whilst my husband went ahead and put the tent up. As we approached the beach Connor became very anxious, but the walk to the pop-up tent was only a few meters, as soon as we got to the tent I held him and he fell asleep. After about half an hour he woke up again, still in my arms, but was surprisingly calm. He sat with me for a further two hours, although didn't venture out or explore the sand, but he was calm.

Communicating with Connor is extremely challenging, so this was all about tiny baby steps, ensuring he still felt safe and in control, and letting him lead when he was ready.

That day he didn't want to explore, but I spent nearly three hours with my whole family for the first time in years.

We have built on this approach over the year, and slowly Connor started to explore, including:

* putting his feet in the sand whilst sitting on my lap
* walking from the car to the supermarket (whilst holding my hand)
* letting his brother push him fast in the park
* longer car journeys
* tolerating being away from home for increasingly longer periods of time
* less suspicion with new people

And most recently, embracing the completely new place and experience of horse-riding, which he loves!

Connor now loves to go out and explore, but takes for granted that it won't be anywhere so frightening as it used to be. We have slowly built up and reinforced the idea that he is always in control and can choose to do things rather than being forced to. It's like he has learnt to trust us again, and for the first time in his 8 year life we are seeing an adventurous inquisitive little boy keen to explore."

LIMIT NO MORE!

All children should have to opportunity to learn from and explore the world around them. Connor followed this process and it gave him a route from fear to freedom.

Limit No More! The 10 steps of Connor's journey from fear to freedom.Limit No More! The 10 steps of Connor's journey from fear to freedom.

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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.