Coming up with the best ways to support a person affected with cerebral visual impairment (CVI) is a challenge. There are many things to think about, because of the number of variables to consider.
Take for example two boys of the same age with CVI who seem very similar. Let’s call them Sam and Peter. Both were born prematurely. Their brain MRI scans look similar. They perform at similar academic levels, and they have similar difficulties. At school, Sam and Peter have difficulty finding their place when reading, as well as finding their friends on the playground. When shown a visual search technique, this proved helpful for Sam, but not Peter.
Learning visual search techniques can help many with CVI, just not all. The method suggested is not wrong, it’s just not right for Peter. One of our regular bloggers, a teenage girl with CVI called Yellowstone, does not think in visual imagery (featured in our previous newsletter, all links below). For Yellowstone, like Peter, suggestions to help that use vision, are often ineffective, and can be stressful. On the other hand, another blogger, Nicola McDowell, uses practiced visual search techniques daily, and like Sam finds them very helpful.
Our whole life experience contributes to how our brain interprets and makes sense of what we see. That is the case for us all, including everyone with CVI. This is the reason different ideas do, and do not work for different people. Support needs an understanding of the person, not just their visual impairment.
The suggested visual search technique worked for Sam, so it’s correctly considered successful. But what about Peter? It is all too easy to make it Peter’s fault that the suggestion did not work, but this is wrong! Peter needs alternative approaches appropriate to his skills and strengths.
This is the problem when trying to apply generalised solutions where there are so many variables.
So how can we best provide support when everyone is different, and the support works for some people but not others, for so many different reasons.
That is the challenge we set ourselves when setting out to develop our pathway for support.
We spoke to our experts and asked – how do you do it? Even with a validated set of questions created to identify individual cerebral impairments in a person diagnosed with CVI, there is still the whole rest of the person and their life to consider. How do you best learn about what is affecting a person, so that you can guide their support?
A key comment was:
”It’s all down to the emergence of patterns. It’s like music. Let it flow and enjoy.”
From this advice, we’ve created a four-step plan, to help learn about a person affected by CVI, allowing for their whole life contributing to how they see. We have called it Pick & Mix. It’s easy to understand and do, and it’s for everyone affected by CVI.
Step 1 – Give it a go! We have put together lists of suggestions relating to all sorts of circumstances, from eating and drinking, to sports, school and being safe out and about. We are launching Pick & Mix with our food section but will be adding the others soon. Scroll down, look for what you want help with. We have many suggestions to try, with some short videos. CVI can affect many situations, so our lists do not cover every possible scenario, but we hope there are enough ideas for it to prove useful for everyone.
Step 2 – Learn More Next to each suggestion you’ll find details of the cerebral visual impairments (CVIs) commonly linked with that idea, along with guidance ’Notes’ to explain a little more. There are also sections under the heading of ’Personality’ that seek to explain characteristics associated with people who have CVI and the list of labels that many with CVI we know have been given.
Step 3 – Emerging Profile Through trying things, applying your growing understanding of the CVIs, and using the Notes to guide you and the person, you will learn more, simply through doing. It will become clear why some things work, and why others don’t.
Step 4 – Keep Learning The key learning resource about the person with CVI, is the person, or you if you have CVI. For this step we give links to learn more, from just learning a little, to an advanced level of understanding. Do what works for you, in your time at your pace.
Who is Pick & Mix For? Pick & Mix is for everyone affected by CVI, with or without a formal diagnosis. It is for children and adults, whether CVI is from birth or acquired. It is suitable to be used by all in supporting roles, including family, caring and professional. It is suitable to be used by the person with CVI.
We know that the vast majority of people affected by CVI will not have a CVI diagnosis. We also know that some who think they may have CVI, might not. If Pick & Mix helps, then great, but success does not mean the person definitely has CVI, it just means their support is improving, which is our aim.
Pick & Mix is neither a diagnostic nor an assessment tool. It is designed to provide support.
Non-Verbal People A key part of Pick & Mix is to explain things, which is not practicable where a person has limited communication skills. We are writing a separate Pick & Mix for this group.
Over the next few weeks, we will be adding more sections and in the future we aim to turn Pick & Mix into an app.
Please take a look at the Food section and Give it a go!
The CVI Scotland Team
PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page. You can also find us on Instagram.
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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.