Visual Impairment

5 simple ways to comfort a sensitive child

Posted on Mar 15, 2014 | 1 comment

5 simple ways to comfort a sensitive child

I HATE THIS! …says May in a million ways every day. May has a lot of sensory issues that could limit us if we let them. But, we want to be a part of the world, not locked away in our house every day. When we leave our house, I can’t control the environment – but I have picked up a few tricks that help comfort her. Here is one way to tackle each of the 5 senses: 1. TOUCH – Touch anything wet or cold to your child’s hand before touching it to their face. The face is a very sensitive place and it will be less shocking for them if they feel it first somewhere else....

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When there is no answer

Posted on Feb 28, 2014 | 5 comments

When there is no answer

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?” She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing. “How was your...

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Bad Mother Story (#246,000,001)

Posted on Aug 31, 2013 | 10 comments

Bad Mother Story (#246,000,001)

I’m a bad mom. Months ago – six or seven months ago – I took May to Great Ormond Street Hospital to get her eyes checked by a specialist team. Two years ago, I begged, pleaded and even punched some people out to get her seen by them. (Okay, I didn’t punch anyone in in the face, but I was tempted.) So, it is even more ridiculous when I admit the following: I received her new prescription but I never got it filled. May has been without glasses all this time. And yes – it is my fault. But, before you pass judgement, consider the lives of a special needs mother and...

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This week I’m… using an iPad?

Posted on Mar 17, 2013 | 10 comments

This week I’m… using an iPad?

May wants an iPad. It’s not because she thinks I deserve to watch more movies. (Though that’s a bonus.) She wants an iPad because it may be the first piece of equipment that really helps her learn to see. May has Cortical Visual Impairment (AKA Cerebral Visual Impairment). CVI is the brain damage that stops her from understanding what she sees. This photo is a good example of how May does not focus, not because she can’t, but because she’s never understood there is anything to focus on. Over the past few years, we’ve spent money on a lot of visually stimulating...

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What I have in common with Katie Price, glamour model (more than you think)

Posted on Oct 4, 2012 | 2 comments

What I have in common with Katie Price, glamour model (more than you think)

Does this story sound familiar? From an article in The Guardian about Katie Price, glamour model and mother to a disabled son: “I can’t fault the NHS. Even though when Harvey was younger, I thought they were a bit shit,” she says, and thinks about it for a while as the hairdryer roars. “They were shit, actually. We didn’t get any support. I remember the health visitor who first looked in his eyes, who said, ‘Oh, he’s not really following. I think you need to go and see your doctor.’ So I went to see my doctor, he did the same thing and said,...

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