The CVIs - just another label?
We have started using the term the CVIs rather than CVI, to reflect the fact that cerebral visual impairment is not a single condition, but is the umbrella term for many different brain related impairments of vision. In exactly the same way as OVI, (referring to ocular visual impairments or visual impairments due to the eyes) is an umbrella term for many different conditions.
For both the CVIs and the OVIs, this is important to know, because people can be affected by some or many of the different impairments under each umbrella, some people affected severely, some mildly, some from birth, some acquired during their life - all different!
With children and learning, all of these differences come under the jurisdiction of the teacher of the visually impaired, who needs to not only understand all the different eye and brain conditions affecting vision, along with any other condition that may affect the child's learning, but then also to look at how to make potentially any subject accessible to learn for any child of any age and any ability - not forgetting that nearly all the teaching is built around the one thing that is altered - vision. Wow, that is a big ask, and was quite rightfully celebrated in a blog written by Professor John Ravenscroft of the University of Edinburgh, 'shouting-out' to all the wonderful teachers of children with visual impairments, around the world.
The joining of the CVI and OVI worlds was also discussed in an incredibly important new published paper we featured (Paper showing that injury to the visual brain can lead to detectable changes in the eyes, link below). Scientists have made a new discovery about how the eyes are affected by brain injury, which could potentially lead to new ways to test for CVI using a simple eye examination.
CVI sits in the middle of a very big family, with some relatives specialising in OVI and others specialising in different brain based challenges, where there may be associated behavioural difficulties and learning delays. These may include autism, attention deficit hyperactivity disorder, developmental coordination disorder (DCD, known as dyspraxia to some) and even dyslexia, with the many different names for learning and developmental delays. We feature a paper on dyslexia, because CVI can cause dyslexia in some, but for a long time it was thought, incorrectly, that dyslexia had one only cause, and that all approaches to help were based on that single (phonetic) cause, probably to the detriment of innumerable children over sixty years.
Understanding the cause, and separating it from behaviours is explained in another paper we have featured, on the CVIs and DCD, which can get muddled up.
We must separate behaviours from causes.
Behaviours have causes.
The CVIs are causes.
The CVIs are not visual behaviours (the CVIs are medical conditions).
The CVIs cause visual behaviours.
Just like with a cough, which could be the symptom of a mild cold or a serious illness, it is important to find the cause and treat it. Similarly, for each person with CVI, we need to seek the causes, that is find out which of the individual cerebral visual impairments the person is affected by, and to what extent, and identify other conditions that may be relevant. Behaviours can have many different causes, the starting point needs to be the cause, not the behaviour. Get it wrong and it can be disastrous for the whole family, as one mother has explained to us in her open and honest reflections of a journey with her child affected by a range of CVIs.
The whole issue with labels is a complicated one, for example if a child has DCD but is later found to have CVI, then the DCD is sort of ruled out. Whereas if a child has reading and writing difficulties caused by their CVI, some, but not all have dyslexia (as explained in the DCD and Dyslexia papers below). A label tends to create a group, and where there is a group, approaches tend to be to the group (that is generic) rather than individualised. Even CVI is a label, potentially affecting anyone of any age and ability, from premature babies to the elderly, including the academically able and the profoundly disabled - the label CVI tells us virtually nothing on its own.
The approach always needs to be specific to the individual, and specific for the causes of their challenges and behaviours. Many areas, like autism and DCD don't have known causes, people with CVI do, and we must identify and use them, so that the approaches used match each individual's challenges.
At CVI Scotland we are so passionate about this because every time we see the understanding of a child's profile of CVIs embraced, lives are transformed (as with the Mother's Reflections, below). Our sister organisation, the CVI Society, with whom we work closely, shares this passion, and has launched an exciting new website as a platform to help reach more people. This year's UK CVI Convention is now open for bookings, with a keynote presentation from the leading international expert in the CVIs Professor Gordon Dutton, plus Mr Richard Bowman from Great Ormond Street Hospital's CVI Clinic and Professor Cathy Williams from the ground breaking CVI Project in Bristol. This is the only family convention in the UK specifically focussing on the cerebral visual impairments, the leading cause of vision loss of children in economically developed countries. It is a wonderful and unique occasion, attended by parents, carers, doctors & surgeons, therapists, vision scientists, teachers, charities, service providers and people with CVI. Numbers are limited this year so be sure to book early. We look forward to seeing some of you there.
The CVI Scotland Team
PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.
In this issue...
Your generous donations will be put to immediate use in supporting our charity...
At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.