Lately he has not been able to tell me what colors are what. A huge thing other parents said to what I was asking about is that he says black is red, or red is black, and yellow is white and virtually no yellow colors have any color to him as he immediately says white unless it's more of an orange or darker yellow. I think it's because of the shade. The other parents with full Achromat kids have told me that their kids say the same as well until they were old enough to point at a color scale. Think about it, if you have no base line of what colors are at all how would you have anything to go off of? You'd memorize different shade colors as people point to them in order to try to memorize them. That is what other parents have mentioned to me as well. It all really does make sense. After all, the ERG taken during summer resulted with her expressing how low the cells really were to the point where if he does see color it's very minor.
Can you imagine not seeing these magnificent colors? Ever.
I had this epiphany driving in the car this week with my 2 youngest sons. I don't recall exactly where we were headed. It was more of a detour since part of the highway out of where we live was closed due to construction. I decided to take a back road and drive to the general area that I knew the other entrance to the highway was. During our back track it offered me time to soak in the color of all the fall leaves transforming into warm reds, oranges, and yellows with almost little to no green leaves as the sign the season was in transition. It was a very euphoric feeling just meditating in that quick moment of my detour. Enjoying the view I quickly informed Colin to try to take a look outside and let me know what he sees on the tree's. That is when it really actually soaked in with me. What if he can't see this vibrant colors of the earth? Just as much as he can't even go outside let alone have the window blinds open when it's a beautiful sunny day outside that he can't even enjoy since all he sees is completely white or black and white contours of things around him as he tries to navigate around it all. Often times he goes completely blind from the sun. No blues, clouds, etc. Thank God for modern technology as I've been able to show him what the sky actually looks like from a view that he will never experience it with.
Only more ERG's as well as genetic testing will confirm where he is at within the vision spectrum of color. Or if it's progressively going to get worse within time to the point that he'll go completely blind from either that or a detached retina.
As they say, "just take one day at a time"
That is all we really can do.
Carpe Diem and let him see the sights that will be engraved in his mind for years to come!
What if your annual visual reference for fall would be in a grey monochromatic scale?
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