Quick CVI Support
Is it possible to get quick support for CVI?
This is an issue we have been thinking about for a long time, because we are aware that many who are looking for help, just want a bit of advice. The problem of course is the incredible range of ways CVI affects people differently.
One Visual Impairment (VI) teacher said that it took her two years to 'get' a child with CVI (from Professor John Ravenscroft's interview with US CVI Education Expert Dr Amanda Lueck, all links at the end of this email). Two years! That sounds about right actually. CVI can be assessed and diagnosed by a specially trained medical doctor in a single session, but that is just a diagnosis. The diagnosis ideally explains which cerebral visual impairment the person is affected by, but in terms of what needs to be understood to support that person, the diagnosis is just one step on a long, but important and hopefully wonderful journey of learning.
So, is a quick bit of advice possible?
Not when looking at a wide range of people, but how about a single person, maybe a single child? A parent is only interested in how CVI affects their child, not all children. Can we offer a parent a quick bit of advice about their child? This is the challenge we set ourselves, and have come up with a major new section called 'Shopping for CVI Support'.
Shopping for CVI Support
We have created our version of an on-line CVI Supermarket of advice. The idea is to create ways for a parent to easily and simply identify their child with CVI. Think about shopping and just taking the items off the shelves you need, that are ideally easy to find. That is what we are setting out to achieve.
To identify your child with CVI, we are developing three sections:
The support is short and simple, often just a couple of sentences. This is quick advice. We will be adding many links for further reading.
We introduce the home-talk, where the parent and their child explore the differences in how the other experiences their world. This is more than what is and is not seen as being different, and is key to the parent being able to learn to understand their child. It is also key to helping the child understand their own world...but this of course concerns only children who can talk.
This is a group we feel can sometimes get left out. Any approach to support that involves following instructions or language to communicate, is of little use to children who are non-verbal or have very limited communication. We know this is a cause of irritation to parents and a waste of their time, and sometimes also upsetting, because their child has been excluded. We have created a completely separate section for non-verbal children.
Some CVI issues, particularly certain activities, will need different support advice for those who use a wheelchair. We are developing a further section for these specific issues.
Shopping for CVI Support is not just for parents, it is for anyone, and is particularly useful when learning to understand the individual person with CVI and their needs. It is being designed to quickly look something up or check something. It is by no means everything you will need to know, that takes time, but sometimes all there is time for, is a quick shop.
Sources of Support
Our sources are parents, children and adults with CVI, and their teachers, doctors and therapists who, for several decades now, have shared what they have learnt, so that others can be helped. In our view, there are no better sources of support than from those who can share from actual lived experiences.
We have so far completed the General sections and have decided to make them available whilst we finish writing the remaining sections, because we think you may find them really helpful. We plan to release the next section, Labels, in the next few weeks, followed soon after by Activities.
We know many of you will still be at home under lock-down rules, and hope everyone is safe and well.
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.