Our world is unrecognisable from the one we all inhabited just a few weeks ago, when we sent out our last newsletter.
Unrecognisable - so that means a lot of change in a very short time. This can be very challenging for people affected by CVI.
While we know some are coping well, others are really struggling and feeling overwhelmed.
Our website strongly recommends that change is controlled, planned, thought-through, structured, and matched to the needs and challenges of each individual with CVI. This can mean the smallest of baby steps for some, matched to the pace of the person with the CVIs, with them in control. This new environment is the absolute opposite! So what can we do?
Do what works for you! This was Gordon Dutton's message from his Corona Blog 2 (all links at the bottom of this page). The example below explains why:
Our team had a group discussion around two children, both of whom have a similar CVI profile in terms of which CVIs are affected, and the severity of their learning and communication challenges. One, a boy, was confused about the change in his routines and was clearly missing the people he could not meet. A parent suggested making Facetime a really fun experience, not just a video-call but an activity, including bouncing on a bed together using Facetime and even, with a little planning, 'passing a gift across'. The mother of the boy thought this was a wonderful idea and would really help her son with CVI at this difficult time. The parent of the other child, a girl, said absolutely not - as it would confuse, frustrate and even frighten her daughter.
With CVI, each person needs an approach matched to their needs. The girl and boy have had different learning experiences that have meant their brains have developed differently - this is why the Facetime for one would likely be wonderful and for the other, disastrous. What works for one might not work for the other.
Do what works for you. Who decides what this is? The people looking after the person with CVI who know them best. For many this will be parents and carers. In times of great change, emotional stability and feeling safe are especially important. If we don't feel safe, we can't learn. But with CVI, emotional wellbeing can have a direct impact on visual processing, so this is especially important, otherwise some nasty spirals can start... spiralling.
What happens when we don't feel safe? Well, our brain comes with a mechanism to protect us, commonly referred to as our 'fight or flight' reflex. Fight or flight is due to triggering of the amygdala (pronounced uh-mig-duh-luh) in the brain which releases chemicals to give you a 'kick' to either run fast of fight hard - diverting blood to the fists to fight and to the big leg muscles to run. It is a very primitive and powerful reaction, and designed to be needed in relatively short bursts, not days, weeks or even months.
Fight or flight can make a person feel extremely tired, especially when severe or prolonged, and more so if both.
With CVI, stress, anxiety, fear and tiredness have all consistently been reported as making visual processing more challenging. When visual processing is more challenging, the calculations the brain makes about very basic issues like how far away things are, or how fast they are moving, are more difficult and less accurate. This means things can pop out or be perceived as dangerous, even when they are not. This can make a person with CVI jump, scream or even have a full CVI Meltdown if distressing enough.
Having CVI means that, with even just a little bit of stress or anxiety (which can include a child picking up on an adult's stress), visual processing is more difficult. This can mean regular frights, which can make a person tired. This can mean visual processing is affected, which can lead to even more regular frights, meaning more tiredness and so on - a CVI Spiral, and not a very nice one for anyone involved.
How to break free of this cycle?
Keep things simple:
If you are unsure where to start, simply think about what we can still do...
What would make you, and the person with CVI most happy?
It might be keeping in touch with friends and relatives on the telephone or on-line, watching old movies, reading stories, or bouncing on the bed whilst on FaceTime with granddad!
Do what works for you, do what makes you all happiest.
This will turn into your agenda.
The CVI Scotland Team
PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.
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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.