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Day to Day Challenges of Living with CVIs

Spotty's Rider movingly describes some of her day to day challenges caused by her CVIs

So far I have written about strategies I use to help my CVIs, but I thought I would give you an insight into the difficulties I face every day as well. This can start as early as the morning when I try to be independent and make myself some breakfast, I look in the fridge and it is visually overwhelming, especially if my mum has just been shopping and I can't find the butter. I have to ask for someone to get if for me, they walk over and spot it straight away and this can make me feel incredibly frustrated. When I go upstairs and get dressed, I open my underwear drawer and again it is a sea of objects, I often have to ask my sister to get me a pair of school socks out as I cannot always identify them. These kinds of mornings can set me up for a bad day at school as I am already frustrated with myself.

As school begins and I walk down the corridor with my friends, I cannot always hear them as I am overwhelmed, I have both CVIs and also auditory processing problems which are similar to my CVIs, but are auditory 'cluttering'. I can miss out on what is said and so feel isolated, I do not want to ask them to repeat what they have said as I have found they can get frustrated and annoyed with me- saying 'weren't you listening to me!'

Lessons begin and I have the board to look at, worksheets, books- everything is so visual; I get very tired. Teachers try their best to adapt sheets so I can see them but it does not always work, I get frustrated as I cannot access the lesson like everyone else, I feel different. Lessons are also always noisy with people fidgeting, moving chairs, books and worksheets, although behaviour is good at my school, in any classroom there is a lot of background noise. This can make it hard for me to hear the teacher and can make me more visually stressed so my vision reduces, I get more tired. A day full of lessons is exhausting and I can get grumpy as the day goes on as I am tired and frustrated this can lead to fall outs with friends as I can lack tolerance.

Then of course there are PE lessons which I dread. I am a sporty person and a good runner so I should be good at PE, but of course there are team games like hockey and netball. Team games to me are so very difficult, everyone is running in different directions and then there is a moving ball to follow. People pass it to me but I can't judge the speed or where I should catch it so I miss it, which leads to frustration from my class mates. They stop passing it to me, as I can't always catch or hit the ball and I can feel useless, isolated and different, I do not like PE.

At the end of a day there is of course homework, again a visual challenge after a long day. I try to do my homework but again there is a lot of noise at home in the evening with my little sister so it can make it very hard to concentrate plus I am tired. There can often be shouting and fall outs which upsets me because I can't help it, but after a long day I can have a melt down as I am exhausted.
My family does their best to support me as does my school, but living with CVIs is very challenging, although I do my best to be upbeat and look for strategies to help myself all the time, living with the condition is hard

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