This month we feature a blog from a parent, who has managed to help her almost fully dependant daughter Amelia, become the independent teenager she wants to be, in the space of a few months.
What the mother did was in principle very simple - she understood all of Amelia's needs, and worked out ways to help her. Amelia, like many with CVIs, has multiple processing difficulties, all working together at the same time, but annoyingly variable too - so conventional approaches just didn't work. This mother created her own set of approaches to try, not only based on her knowledge and understanding of her daughter's abilities and challenges, but also based on her daughter's needs and desires. And the mother got it spot on, which we know because Amelia, rather than resisting the tedious repetition of multiple difficult tasks around mobility, personal care, and daunting social skills, embraced and loved her new programme leading to her independence.
The mother got it right because she understood a few key factors around her daughter's development. The first, and most fundamental, is how we learn - how we get that stuff called knowledge into the storage libraries in our brain. Learning is a three-part process, where we experience something, then remember it, and when we come across it again, recognise it.
Experience - Memory - Recognition, and repeat.
That is how the pathways in our brains are built, everything you are, from when you were a helpless new-born baby, to now, has gone through that process.
But - and it's a big but, CVIs affect the experience part of that three-way process. With CVIs, the experiences are not always consistent, or even perceivable, and can vary, and affect other senses, not just vision - making that process of learning much more difficult. This is why so many children with CVIs have learning difficulties at school.
This mother understood which areas were making the experiences difficult to learn from, and, admitting needing a little trial and error, worked out a way through. But this mother understood each of the different CVIs her daughter was affected by, and this is key.
Could you imagine a child with an ocular (eye) visual impairment (OVI), and the parents, therapists and educators being told "they have an OVI - that's all you need to know". It wouldn't happen, there are many different visual impairment affecting the eyes, some affect clarity, others visual field - and each different visual impairment requires a different approach. CVIs are the same, there are many different CVIs (sorry to be such a bore and keep repeating ourselves, but once again, CVI is an umbrella term for many different brain related impairments of vision), each, or combinations requiring a different approach
Another child, we featured, called Charlotte, worked with a Music Therapist, and with support from the family and multiple professionals, learnt to walk and is learning to talk. This child was considered to have very complex needs, and like many severely affected by CVIs, can only attend to one thing at a time, not just visually but across all of her senses. This makes learning new things particularly challenging (Gordon Dutton describes some of the children he has worked with as having a sort of 'single attention syndrome' in his Blog 23). Following Charlotte's progress, we see that with great patience and time, she, like all children, can learn.
Many parents regularly contribute to the CVI Scotland website, and we love sharing stories, because that is the best way to learn, from one another. One problem we come across is still, how few families really understand the nature of their child's difficulties. Often, they have been given labels, which are explained in terms of the label, rather than the child. At the end of this letter we are sharing a list of what we think are the key areas to understand, to learn the world of the person with CVIs (Initial Goals for Understanding).
Once you have this understanding, you can start to see the world through their eyes, and this is key, as Gordon Dutton explains in his Blog 24 about the Self-Referencing Criterion. We need to understand their world, to learn to better see and experience their world, and not use our world.
Get these things right, and children learn to do things, and love learning, and that makes everyone happier, and if money was an argument, makes life cheaper (because people who can do things for themselves don't need someone else to do things for them). Another example we featured was a boy who found reading long words difficult, and was found to have Balint Syndrome. Very simple advice, based on the understanding of his CVIs turned the boy's life around. CVIs commonly affect reading and writing, and can easily be confused with dyslexia.
These three cases all show us that children with CVIs do not have some sort of inherent learning difficulty. They have a visual impairment that makes learning more difficult if it is not fully understood and accommodated. Get it right, and we have yet to find a child unable to learn. Where children do not learn, this is a sign that we need to do better, and these cases show us we can.
The CVI Scotland Team
Initial Goals for Understanding
What do we need to know about children or adults with CVIs, to learn to understand their world -and so see their world as they do?
Next, you have to look at the past, present and future.
The past is full of priceless knowledge. Reflecting - consider:
And for each of these, note:
See if you can come up with any themes.
Where the CVI was acquired, in addition to the above, consider the skills the person had before the event, and how these have changed.
Your starting point is where the person is now - not where someone else says they should be. We all exist in the four dimensions of space and time.
With what you know from 1-7 (above)
And make everything perceivable for them.
And make everyone else make everything perceivable for them.
*This list is by no means comprehensive, once each element of the visual impairment is identified, then the support needs to be matched (see our What Is CVI? sections for more information).
Plans need to be organic, and as a person develops, everything changes, and needs to be reviewed and re-reviewed.
Consider the person's needs, relevant to them, in terms of:
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.