Kerry Fox talks about how her son Alfie, who is now an 18 year old talented film maker and photographer, learned to navigate his world.
Alfie suffered from neonatal hypoglycaemia soon after his birth which resulted in Cerebral Palsy with significant damage to both his occipital lobes. He was only a few weeks old when we were told he was likely to have a degree of cerebral visual impairment and we were referred to the Sensory Needs VI service. From very early on we noticed that he acted like he could not see, he is 14 years old now and we have watched him learn to see, navigate his environment and achieve many things we did not think were possible.
There are so many stories relating to Alfie's journey I would like to write about but I think that would take up a whole website in itself! He learnt to move and learn his world didn't disappear into an abyss past the spot he was laid on-he used an inflatable roll with a bell to push in front of him to map out the floor, he wouldn't cross a threshold where the floor changed colour as he thought he could drop into a big black hole, he shrinks going through doorways thinking they are much more narrow than they are. Alfie cannot see in a crowd and I spent many years in the school playground with bright red hair so he could see his mum waiting for him. He still relies on a bright marker to distinguish those he is with when outdoors.
Alfie reads but cannot read a book where all the pages are reams of text; he can manage a few sentences per page in enlarged text. He could not learn phonics but had to learn to read using whole words. He amazed his teacher on his first day of reception class by reading his name. Alfie has to turn away from people to listen, he cannot use all his senses together, and sometimes this has been misinterpreted as Autistic Spectrum Condition.
We have had complete melt downs in the cinema as he has gone from a lit room to a poorly lit one, meltdowns when there are sounds that are disembodied for example a hoover in one room he in another,motorbikes outside, fireworks-he needs to see where the sound is and understand where the sound is from-imagine yourself having no sight and there been a sudden loud noise from nowhere and of course stairs!!
With no 3D vision it's the black hole of the never-ending abyss again, and we avoid all escalators going down! We have been on a long journey helping those who work with Alfie to understand what CVI is and how it impacts on Alfie. To meet Alfie you would not guess he struggles with his visual processing - he has worked so hard to process his whole world and has come a long way from his early days and we have learnt many strategies along the way although the recent purchase of a black puppy proved a challenge as he could not see the pup on a dark floor or in dim light oops!! So we are still learning..........
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