Growing up with cerebral visual impairment: Alfie’s story
Friday, 23 February 2018
Kerry, mother of Alfie who has cerebral visual impairment (CVI), talks about what it's been like learning to live with his condition.
Alfie experienced neonatal hypoglycaemia soon after his birth, resulting 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 were referred to the local VI service.
From very early on, we noticed that he acted like he couldn’t see. He is 18 years old now and a budding filmmaker and photographer. We have watched him learn to navigate his environment and achieve many things we didn’t think were possible.
Alfie learnt to move and discovered his world didn’t disappear into an abyss past the spot he was laid on (he used an inflatable roll with a bell which he pushed in front of him to map out the floor). He shrinks going through doorways thinking they’re much narrower than they are.
He wouldn’t cross a threshold where the floor changed colour as he thought he could drop into a big black hole.
He can’t 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 he can’t read a book where all the pages are reams of text (he can manage a few sentences per page in enlarged text). He couldn’t learn phonics, but instead learned to read using whole words – he amazed his teacher on his first day of reception class by reading his name.
He has to turn away from people to listen as he can’t use all his senses together, and sometimes this is misinterpreted as autism spectrum condition.
Alfie has had complete meltdowns in the cinema when he has gone from a lit room to a poorly lit one, when there are sounds that are disembodied (for example a hoover in one room when he’s in another) as he needs to understand where the sound is coming from – imagine having no sight and there been a sudden loud noise start 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 him.
If you met Alfie, you wouldn’t 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. We have learnt many strategies along the way – although the recent purchase of a black puppy proved a challenge as he couldn’t see the pup on a dark floor or in dim light oops! So we are still learning…