[blparent] First Questions About Blindness

Wed Oct 13 21:40:44 UTC 2010

Sounds like my story, however, even though Gab heard the words coming out of
my mouth and she too said she would heel me, not until she explained it to
her friends, teachers and her friends parents did I  really know that she
knew.  I mean, she always said, My mommy can't see," but to a youngster the
concept is not really there.   V

-----Original Message-----
From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
Behalf Of jill
Sent: Wednesday, October 13, 2010 2:05 PM
To: 'NFBnet Blind Parents Mailing List'
Subject: Re: [blparent] First Questions About Blindness

Hi Jo Elizabeth,
I have a 13 year old son, 5 year old son and a 3 month old daughter.  With
my oldest, I took the approach that my eyes didn't work, and he was about 2
then and he kissed them and said that he would make them better.  He learned
that I saw with my hands and ears.  With my 5 year old, I explained that God
had Made me that way, like he makes everyone different and special in their
own way.  I have rp and my sight has dwindled over the years.  I pretty much
now have light perception and contrast.  I recently had a drop in vision
again.  He and I are adjusting.  I use to could tell that he was playing in
the floor, but now not so much.  He is so very quiet sometimes!  I nearly
fell over him and of course I began to cry due to surprise and guilt.  He
also did.  He came to me and threw his arms around me and said " I wish you
weren't blind Mommie".  What do you say to that except me too and remind him
that there are still lots of things to be thankful for and how good God is
for helping me from day to day.

Jill
-----Original Message-----
From: blparent-bounces at nfbnet.org [mailto:blparent-bounces at nfbnet.org] On
Behalf Of Jo Elizabeth Pinto
Sent: Wednesday, October 13, 2010 12:39 AM
To: NFBnet Blind Parents Mailing List
Subject: [blparent] First Questions About Blindness

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
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