Ok! So what is the story… I can only tell you a little bit… the rest we will have to wait to find out from Kodi!! Here’s what I know.
The boy could see but was very poor vision and up close but did see color because he loved YELLOW!!! We talk loud and tell him about the how he will see yellow again… Like in the Baby Van Gough DVD’s we have that had up close contrasting things… He went nuts when he saw the yellow butterflies, yellow flowers that made a field look yellow, Yellow birds and yes when the yellow chicks would bounce across the black screen he would squeal with delight and jump out of his chair and giggle and laugh and put his face on the TV… (the TV screen was always smeared with “Kodi slime”) He would make anyone laugh with is joy…
This all changed! His world became dark. I can’t imagine what he must have been thinking and why this was happening… thank you Dr Jan van Dijk for your insight and telling me in email that when a person loses vision it takes a couple of years… All I can think is even slight vision is better than nothing… Because when his world went dark he was not a happy boy. He lost so much he had. YELLOW for one. Now I can see (understand) that some of his cries were “my mom went to work and I miss her!!!” and some were “I cant’s see anymore and I’m sad” He shut down. He was in pain. We have done a really good job this summer of getting him to trust that we are here, we are watching out for him, and we are making sure he can still do fun things… He is so much happier. It was a very difficult road getting him here… Dr. Cress and Dr. Feyma and Dr. Malone and Dr. Quiram know and saw how difficult this was for us. I have to say I think you were all so kind and helpful in getting us this far. AMAZING doctors. We are seeing light even though his world is dark. We are understanding more about his world of darkness as he loses his vision.
Ok. So his eyes are in pain. What does Kodi do to communicate this?
Ever watch a kid so irritated by pain they can’t describe so they pinch, hit or rub it really hard… as if to some how “dig it out” but it only makes it worse? This is Kodi. He got so frustrated with the pain that he began hitting his eyes… He knew he felt pain when he did this and he knew we also knew it hurts to hit so by hitting somehow we will understand he’s hurting.
Well this only makes it worse. Anyway! The other thing he would do is put a blanket on his head, cover his eyes with hands or put something over his eyes… shirt, socks, anything available.
After really bruising his eyes we decided to try a cool gel mask… His immediate reaction was
“AH! Now this is good!!!” and he giggled and went nuts with excitement! He got a hold one day of Symone’s sleep mask and put it on. We decided to go shopping!
So the sunglasses became his first one… then the solid black… (Zorro mask) and he had another and I have no photo and we can’t find it… so we have what we need… right?
I got a lovely email from a dear friend (she’s very sick right now) and she informed me she found a cute owl mask for Kodi… I thought that was so sweet. When her husband gave it to me it made me giggle!!!!
It’s so funny!!! Enjoy!!! By the way… these are not for sleeping for Kodi… they are for comfort… He doesn’t suck his thumb much anymore… (caught him the other day in bed asleep with thumb in his mouth) He doesn’t have to always have his blanket or any special thing… But he does love these sleep masks…. If it comforts him great. I know we get the strangest looks when we go places in public… OH! This one little girl said to her mom “Mom why is that big boy (she was shorter and younger) sleep walking with a mask on?” I busted out laughing and told her he is DeafBlind and wants it on and he’s not really asleep. Poor little thing got so concerned and her mom said “I”m so glad you told us this. I was wondering the same thing when she asked me. I didn’t know what to say. Now we can learn more about something… eyes, ears, and what happens when we don’t have them working right.”
We talked for a bit and I know that little girl will forever be affected by that knowledge… And just at the right time Kodi took his mask off and threw it and hit himself in the eye and then I picked it up and handed it back and he put it back on… She asked “why did he do that?” I said “we really want to know. But I’m thinking he’s trying to tell us that it hurts” She said she was “‘I’m sorry your eye hurts, Kodi.” So mom and daughter thanks for asking. It never ceases to amaze me how little people know about DeafBlindness. And yet the respect when they learn about how difficult it is. It’s real… I don’t have the numbers…
But it’s out there and not all are born this way… Many become this when they age or get some disease that destroys their hearing and vision.
So sleep masks are the thing now… and why not have fun with it.. He sure does!!!