empwrn at bellsouth.net
Mon Apr 12 14:14:00 UTC 2010
Hey guys, I recently had an experience that I think is helping me to better understand what Jack does and doesn't see. This was my blog post last night. I'd love feedback particularly from folks whose kids (or who themselves) can tell me if I've actually captured the idea or if I'm off-base.
Marie (mother of Jack, 4 years old with Apert Syndrome)
Life at Dusk Do you ever think and think and think some more about a subject but find that you cannot wrap your brain around an idea? So you just kind of shelve it and labor along with your limited ability to understand. Then one day something fairly insignificant happens and the cartoon light bulb pops on over your head and you hear the ding ding of the jackpot in your ears?Jack would live outside if we would let him. We returned home from church one evening and the usual clamoring to play outside began from the back seat. "Okay, 10 minutes!" I declared with a plan to be firm. We stepped out of our garage into the cooling evening temperatures and I shivered a bit, glad that I had already time-limited this little adventure.Jack took off for our backyard. I ran after him as my eyes began to adjust to the dim light from our neighbors' houses and the few street lights. I could make out Jack's form ahead of me and I could tell that he had dark colored clothing on but I could not make out the color. When he turned toward me, I recognized the shape of his face and his glasses but I could not make out his facial expression. I thought I saw something in the dark and tried to step over it but my foot found nothing to step over. I tripped over the garden hose that did not stand out in the dark. I found myself able to make my way around the yard but the trip over the garden hose was enough to make me extra cautious lest I fall over any other unseen objects in my path. Suddenly, ding ding ding, a heavy fog lifted from my brain. This is it! This must be it. Jack lives in a constant state of dusk. He's not completely blind. He can see but he has difficulty making out fine details. Without high contrast and good lighting, he cannot distinguish one color from another. He needs high contrast thick letters 2-3 inches high for near work. It's life at dusk with a couple of additional challenges. The difference in the left and right eye causes Jack not to use his left eye causing depth perception issues. We also learned at Jack's recent follow up with the vision rehabilitation doctor that Jack has cortical visual impairment. His brain does not always process the signals it receives appropriately. Some days he sees better than others. Here's a quote I found interesting "When a child with CVI needs to control his head, use his vision, and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope." And that is just if a child has CVI. I guess you'd have to add "at dusk and without depth perception" to the end of the quote to describe Jack's optic nerve atrophy as well as his CVI.Take a walk at dusk sometime and think of Jack
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