[blparent] First Questions About Blindness

[Jo Elizabeth Pinto]

Hi.  I was wondering if some of you parents who have older children could recall and share how the issue of your blindness came up with your kids, and how you explained your disability to them simply enough so they could understand.

A few weeks ago, something came up that I can't really remember, but for some reason I told Sarah, who is now two and a half, that my eyes didn't work.  I said they were broken, which is a concept she usually understands.  She said to me very seriously, "Mommy, they're not open."  So I told her my eyes didn't work even when they were open.  She said in a very matter-of-fact way, "Just open them."

Toddlers move on pretty easily, so the subject was quickly dropped.  I started noticing that Sarah would say, "By your left, by your left" when I was searching for something, although she didn't know what "left" meant.  She'd just heard other people saying it.  Sometimes she would stay "step" when we came to a curb, and although I wouldn't rely on her directions as consistent or trustworthy, I've thanked her for telling me just because it seems to me like a considerate thing to do.

One day last week, we were going to a restaurant, and she asked me if I would be taking my eyes with me.  I said yes, and she asked if she could take her eyes, too.  I said yes, she could, and she promptly poked herself in the eye, seeming like she was trying to get her eyeball in her hand.  So I told her that we all have eyes which are part of our bodies, and that they didn't come off.

The thing that has started getting me kind of concerned is that Sarah and I will be playing with a toy or doing something, and she'll start saying, "Mommy, open your eyes.  Don't close your eyes."  I have no voluntary control over whether my eyes are open or closed.  Or she'll say, "I have to close my eyes like Mommy."  Then tonight, I was sitting on the floor and she stood in front of me, pinched one of my cheeks with each of her hands, and said, "Mommy, don't do that with your face."  Something was obviously bothering her because she continued to say the same thing.  I asked her what she meant, and she said, "The pancake face.  I don't wanna see the pancake."  (God knows where she got that.)

Anyway, I didn't know what to say.  One of the concerns my sister brought up when I first got pregnant was that my facial expressions don't always fit naturally with the situation that is going on, and that my baby would pick up on that.  My sister tends to be kind of superficial and focused on appearance, and it surely isn't that big of a deal, but I'm wondering what you all told your kids, or how the issues resolved themselves.  Please forgive the long post, but I felt I should explain the progression of things.

Jo Elizabeth