We have been looking at CVI and noise, and have found that many, in fact nearly every person we know who is affected by CVI, also has some sort of issue with noise or processing sounds. Gordon Dutton discusses a possible interpretation of listening to many consistent accounts of unusual responses, and reactions to sound, in his Blog 11. We recently published a new section on the website called Cerebral Auditory Impairments, to share some of the different accounts, and consider them in relation to what we know about CVI.
We are also aware with this latest section that our website is growing and growing. It might seem overwhelming to have to work through long sections to understand something you may not know is even relevant. We have just created two new bite-sized sections for this reason. One is called snapshots and is a photo, for example of a child who loves to climb, and a couple of lines about what the photo might mean. We hope these will be easy to flick through, and if several are relevant, you will be encouraged to look further to understand the particular issue. Another is called behaviours, for example watching the television with your face pressed against it, and is a little more detailed, but still very short.
These bite sized sections are aimed at making the website more widely accessible, however there is a point with CVI where you will need to learn more, and to do this you have to put the time in. The more you put in, the more you get out, whether it is 10, 100 or over 1000 hours. We appreciate that this may seem a daunting commitment, but hopefully this journey of learning will be enjoyable and enlightening, and will be life changing for the person with CVI, and life affirming for the person supporting them. There are no short cuts, and no one can do it for you, that is why we created CVI Scotland and wrote this website, so that everyone has the opportunity to learn for themselves. At the time of writing this newsletter the website is being viewed in forty seven different languages from sixty nine different countries. That's a lot of people learning, and it will only make our community stronger.
We have also started building up our Support section, and one of the first features was about understanding the child with CVI's support needs in school. This involves walking through their school day, looking through their eyes. There are three case-studies; one a profoundly disabled child, another a child with additional needs in a mainstream school, and finally a high functioning child in mainstream school, all with CVI. If you know a child with CVI, follow the case study of the child closest to them and see if it is enlightening. Then read Nicola McDowell's blog 9, where she describes how her CVI presents extreme challenges to being in a classroom. We think everyone who has any interest or involvement with a child who has CVI and is at school needs to read this, and hopefully make changes to create an environment where learning is possible.
Another addition to the new support section is a feature we commissioned on Horse Riding, which turned out to be a lovely uplifting piece. The benefits are enormous, but not just physically around balance and posture. A key message that many parents repeated was the sense of achievement their child benefitted from. Where life is challenging, here is something some can do independently and do well, and with that seems to come a new social confidence. Give it a try, but read our guide first.
We know many are going on holidays, and wish you all a happy and relaxing break. If you are with someone with CVI, remember to consider that whilst exciting, a completely unknown environment can be very challenging. You might want to consider purchasing a cheap pop-up tent to take as a portable 'recharge-your-batteries' station, useful for everyone, but particularly the person with CVI.
From the CVI Scotland Team
PS All additions and changes on the website are communicated through our Updates section on the homepage, and via Twitter @scotlandcvi and our CVI Scotland Facebook page. Copies of previous newsletters can be found in the News & Blogs sections on the website. To sign up to receive the next and future newsletters please click here.
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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.