We are still flummoxed with my daughter’s vision. Her teacher has emailed and spoken with us, saying that my daughter’s frustration with her vision has caused her to be unfriendly to her peers now. The teachers ask if they can help but they’re not sure what to do and my daughter isn’t telling them. Is she scared? Is she worried? We can’t tell. She won’t tell us.
Her VI teacher said the level of non-compliance or even interest in doing braille work is so high that she’s backing off from educational goals and just trying to play and have fun so my daughter doesn’t have a bad association with braille.
We’re seeing the frustration manifested in anger and defiance here too—along with the reduced mobility and functionality with her current vision. Today on the ride to school I asked if her vision was different or if she couldn’t open her eyes due to brightness. I was told I wasn’t getting an answer with, “I’m not telling.” When I pressed her hard enough I got that everything still looked the same and her vision was good and she could see things. We know this isn’t true because she will lie and say she sees something like, “I can see the house” when we’re miles away.
So we had an emergency session with her play therapist today. Dhruti videoed a lot of the session and shared the video with me. As we whispered afterwards she said, “I don’t think she’s lost more vision. I think she’s under so much pressure from everyone around her to see better it’s making things worse. Just stop asking and talking about it.”
Could we be making it worse for her? We’ve dropped any testing questions or direct questions and are telling her everything she needs to know as though she’s completely unable to see such as, “the fork is to the left of your plate, the chicken is in the front and the corn is in the back of the plate. Your milk is on the right and I’m handing you your napkin now.” Dhruti says she’s holding her eyes open in the sessions with her.
But we’re seeing closed eyes sometimes, watching her pull down the corners of her eyes as though that might make them see better and behavior such as walking straight into a black fence which she always saw among many other large obstacles she just isn’t noticing. She’s a hazard to herself right now and sometimes we’re forgetful she may not have the peripheral and form vision she had some months ago.
Then this afternoon we had our music therapist over who said similar things as Dhruti, saying with the blinds closed, my daughter could discern all the transparent colored scarves on the floor—something she couldn’t do before the cataract surgery.
So is it brightness? Is it a drop in pressure? Is it us putting pressure on her to tell us what she can and can’t see? Or is it something else? Tomorrow we see her ophthalmologist/surgeon and will hopefully find out a little more.
The Big Boy Update: Keira, one of our children’s best friends, came into the house to tell me there was a talking tree outside in the front. I came out and the tree looked normal—until I heard it talk and saw my son so high in it I didn’t even realize he was there. I wanted to tell him it wasn’t safe and to come down, but my parents let me climb in all sorts of trees when I was young (trust me, they have stories they can tell you). I broke an arm once but for the most part I didn’t want to get hurt so I was reasonably careful. I said good job and went back inside and tried not to look as he climbed down.
The Tiny Girl Chronicles: Chelsea, our music therapist, said my daughter is getting into more visual-focused things since the surgery. Today she wanted to play the keyboard and would ask Chelsea, “guess what color this song is?”
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