As part of our new sections 'Shopping For CVI Suggestions' we have just published an alphabetical list of the labels children with CVI are given to represent their behaviours and challenges.
In our introduction we explain a little about what these labels are, as many are not medical conditions. That does not mean the difficulties the child has are not genuine, of course they are. It just means that there is not the widespread agreement needed under a particular label, as to what is happening and why. Dyspraxia is probably the best example of a label that never had agreement, and has never technically qualified as a medical condition, despite being widely 'diagnosed' and supported.
Dyspraxia is also a good example of a lot of words beginning with D around these labels. The 'dys' in dyspraxia and dyslexia stands for 'difficult' Difficulty and disorder are terms commonly used in the labels, as is delay.
Delay...a bus gets delayed, maybe because it is a busy day, and when it gets quieter may catch up. The word 'delay' implies that something is catch-up-able. But what if one of the roads on the bus route is shut so it can go no further? The bus is no longer delayed for the people on the other side of the road closure, is it? It isn't coming because it can't come.
If a child's learning is affected by a visual impairment, which means the way they are taught is not easily learnable for the child, is that child delayed? The child with a visual impairment could be seen like the bus, unable to go beyond the closed road... unless someone helps them. The bus driver can't unblock the road, but if someone clears it, or helps them find a different way, they can progress, maybe even catch up. The child with CVI is the same, if learning has been blocked. Someone needs to work out the cause of the blockage and either clear it, or help them find a different way.
Thinking of the child in terms of too many Ds like delay, difficulty and disorder, can lead to another D - Discrimination.
It can be very subtle; often people are not aware of it, but these constantly negative labels create a type of bias, that we think is unfair. It's not the bus driver's fault the road was closed. But, if everyone blames the bus driver enough, they might start to believe they are at fault, even though they don't know what they could do.
We were reminded of an early guest blog from Dr Namita Jacob who wrote:
"Children with disabilities are often seen as not being able, or they are praised hugely for small achievements which in a way sends a message - that's really fantastic for you not for us, but for you ah! That's great"
The blog was about self-efficacy, which is all about believing in yourself and your abilities to do things. Namita Jacob's point what that, if those around the child don't see or treat them as able, how are they expected to see themselves as able? And to do anything for ourselves, we need some sense that we might achieve it.
And so these negative labels not only are widely disputed, they can create further problems for the child. To believe they can do things, others have to believe in them. This is the same both for an academically able articulate child with CVI, and another child with CVI who has profound challenges.
Profound challenges...we listed all the labels we could find, used to describe this group of children....severe, global, multiple. A mother felt overwhelmed by the labels her son had been given...Severe Global Developmental Delay...what does that even mean? Her son was being compared to something called 'normal', and he had been 'assessed' as being severely and globally delayed...like the bus, but very very late! Was he expected to catch up? Or was the label a way of saying 'there's no point'? It didn't make any sense.
In a personal email she allowed us to share, Gordon Dutton explained
"All exceptional people like him are autonomous independent individuals whose frame of reference is themselves, and any comparison with others is inappropriate and futile."
We believe it is important to put the child first, not the label, and to see the labels as an evolving part of the child's journey. One week a child may have ADHD, the next, after an assessment confirms CVI, the child no longer has ADHD. The difficulties under the ADHD label are still there, and the ADHD diagnosis a week before when CVI was not known was correct. Now the child has CVI and their difficulties are explained due to their CVI.
Labels are not written in stone, they are fluid, like everything we know including about every medical condition, we still strive to learn more.
The list of labels is part of the sections to help parents identify their child, as most children we know with CVI have had some of these labels attributed to them. Some have proved useful in meaning resources have been allocated to help support. Others have proved to be like the blockage in the road, creating difficulties they were given to identify and help.
Currently, the professions of most of those assessing and attributing these labels, have no required training in CVI. This means that labels can be incorrectly attributed to children with CVI, because of the complex and poorly understood difficulties a condition like CVI creates.
Think of the child with CVI as the driver of the bus. Not delayed, even if it might arrive late or not at all - you need to look what is happening on their journey, what is causing things to move more slowly or stop, decide where they should go, and help clear their path.
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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