Wednesday, September 28, 2011

Orion's Eyes Meet Sunlight

When one says a child is blind, it doesn't mean the child is totally blind. It's a range of different vision issues. I have taken Orion to opthalmologists (I count 3) and the consensus is that he is totally blind (no usable vision).  I beg to differ, I think he reacts to light (not shapes or blobs, just strong light).  I've always brought up that I saw him react to camera flashes and sunlight.  That's all.  It ends up with what feels like me talking to myself.

Just being able to detect light is a huge difference than no vision at all.  There's the Non-24 Hour Sleep-Wake Syndrome that is common with people who are totally blind.  For a while I thought maybe Orion had this, but hey, he's still a baby and they usually wake up at night.  So far, so good for Orion. (Good for Mom and Dad, too.)

So, with the tip I remembered from a CBSS Summer Institute workshop Thomas and I took back in June, I recorded Orion's reaction, or lack of, to sunlight.  So, can you please look at this video and tell me what you think?

I'm bringing Orion to a pediatric/genetic opthalmologist at the National Eye Institute at the National Institute of Health (NEI/NIH) in Bethesda, MD in November.  Children like Orion is right up his alley.  I'm bringing this video, too. I am very curious about what he will say.


  1. First shot looks like it "burned" a little bit, causing rapid blinking.... Towards the end of the clip, the blinking seemed to be more like he was checking to see "is that thing still in my face?"

  2. Yes, he is reacting to something, maybe he is seeing the light. He also might be feeling the heat of the sun on his face Face the direct sunlight with your eyes shut and you can feel it too. Repeat the test with a strong spotlight that will not radiate heat, and if you see similar reaction, it would be strong evidence that he is "seeing" the light.

  3. That looks like a reaction to light to me! I'm very glad that you have this video to show them. I too have had medical people look at me like i'm crazy when I say my son can see light and some shapes. Now they are starting to believe me based on his reactions now that he's a little older (2). At first they just thought I was a crazy mom seeing what I wanted to see. But there are many people who should have no light perception based on their medical status that say - I don't know how but I can see light! The medical community doesn't have all the answers in these cases.

    My son has been able to do a lot with his light perception. He gets around the house pretty well (he will be getting a cane soon). He loves standing at the front door and attends to windows and doorways because he notices the light/darkness.


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