Saturday 28 January 2012

North Wales girl's vision 'like looking through Swiss cheese'

LIFE through brave little Elisa Wheeler’s eyes is like “looking through the holes in Swiss cheese”. 

Although her eyes are normal, the eight-year-old’s brain can’t process what she sees – leaving big gaps in her vision. It means she has difficulties making sense of the world around her.
The plucky Ysgol Maes Hyfryd pupil was just a baby when she was diagnosed with Cerebral Visual Impairment (CVI) and mild cerebral palsy.  Every day since has been a “learning curve” for her parents, Polly and Derek, and older siblings Iestyn, 13, and Lowri, 11.

The family from Corwen have spent countless hours researching on the internet and developing techniques to aid her “misunderstood” condition, which makes learning letters and numbers an almost impossible task.  Her abilities can also alter from one day to the next depending on whether or not she’s tired, feeling ill, or is suddenly disorientated by unexpected loud noises.

Polly explained: “CVI is a very complicated condition where some of the special vision parts of the brain and its connections are damaged. With it, things can change daily.

“If Elisa’s extremely tired, she can fall over three or four times or miss steps. Her ability to cope with noise and look at the same time is affected – for example if an ambulance goes past with sirens on all of a sudden, it really frightens her because she’s only able to process one thing at a time, and we think it cuts her vision off.”

Polly said it’s also very difficult explaining the complex condition to people and getting them to understand. She added: “It’s quite hard when you’re just a mum. I’m not exactly the most educated person when it comes to medical matters, but you have to learn.

“The way some people have described it is like looking through the holes in Swiss cheese, in that you will only see a part of an image while the rest of it is blocked. “Similarly, there is a lot of information missing when Elisa looks at things and so she sometimes struggles to recognise faces, but yet will pick out a coat or clothing. “At school, she has one-to-one support and is mainly dependant on adults because when the kids are running around the playground at break times, Elisa can’t see who’s who and she can’t react quickly enough to people, which obviously has an impact on her building relationships. 

“That said, we are really pleased with the way her vision is coming along because the more she learns, the more she sees. It’s all about stimulating her brain and teaching her strategies which help her to make sense of the world around her.”

Elisa has visited a CVI expert in Scotland who helped the family develop methods to teach her colours by associating them with objects. But when she was a baby, the family were pretty much “on their own” without the internet.

Polly had suffered a difficult pregnancy and Elisa, who was in the footlong breech position, was born eight weeks early by Caesarian section. Not long after, doctors discovered that her brain connection pathways were damaged, and for 12 months of her infant life she was left completely blind. The Wheelers were forced to “self educate” themselves while medics looked for answers. Polly described the feelings of isolation trying to get to grips with her daughter’s impairment without the ability to explain it. 

“Elisa’s condition just didn’t make any sense to me at first – I kept thinking if she can see it, then why can’t she do it. You don’t realise that most of the ability to see depends on the messages being sent from the eyes to the brain. In Elisa’s case, the messages just can’t get through properly.”  The 50-year-old added: “It’s only in recent years that we got the internet and it opened up a lot more doors for us as we went on forums and researched the condition. “It became a quest for us to find the information that was out there, and with knowledge came more confidence. At the end of the day, you’re the real expert because you’re having on-the-job training and know your own child.

“However it sometimes feels as if you’re spending your time with your back to the rest of the world while you search and type, and you can feel isolated knowing you’re the only voice saying these things to teachers and parents. The massive responsibility of not getting it right is frightening because it’s Elisa who’s got to live with the implications, so I’ve got to do my best to help her. We don’t know how far her potential will go but we are so proud of her and would never restrict her. She’s a great little girl who’s brought so much to our family. She brings a smile to everyone’s face.”

CVI causes visual impairment even though the eyes are normal. Often children with it actually have good visual acuity but can’t make sense of what they see. In most cases, once the damage has happened it does not get worse. As the child grows older the visual difficulties may slowly improve. There are many different causes of damage to the vision parts of the brain. Most often damage occurs while the child is still in the womb.

The internet opened up reams of information and support for Polly and she was helped by charities including Contact a Family, Snap Cymru and Parents of Disabled Children.

Contact a Family campaigns to raise awareness of the issues affecting families of the 770,000 disabled children in the UK.  A spokeswoman said: “Families with disabled children experience isolation in different ways: a lack of social interaction due to difficulties working and not having the time or money to do family activities; a fear of how people will react when they go out with their child; and feeling alone because no one else shares their experience.”

Srabani Sen, the organisation’s chief executive, said: “Isolation is having a devastating impact on  some of this country's most vulnerable families. This isolation can be avoided if tackled at the earliest opportunity.”

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Thank you to my good friend Polly, for granting permission to use this article. Elisa is a truly delightful little girl and I  felt strongly when I have seen her that with the right approach and strategies she ought to make good progress - Maurice.

First published in the Daily Post, North Wales, 21 January 2012.

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