[blindkid] When your child realizes she's different....

Tue Nov 18 18:39:28 UTC 2008

Forgive me Amy, but in my opinion the underlying problem is that the world
is geared in access and in bias and value and language and in a vast
majority of populous toward sight. It cannot help but get into her psyche.
This is something experienced by people who are in a minority, who are
misunderstood and treated as inferior, not just blind people.

I remember one day I was laying on the living room floor with Jordan, I
think he was about six, we were just laying there talking about nothing in
particular, he asked me out of the blue, and quite calmly and seriously,
"Mom, are blind people happy?" He had never asked such a thing or displayed
any negativity before. Where would he even get any idea to doubt it? The
world around him does...so that is where!

It will be a lifelong shoring up of confidence and tough skin and refusing
to believe the doubts in society. You have begun with a good beginning. For
Jordan nothing got to shoring up the core of him like knowing a wide variety
of blind adults and being with them REGULARLY. When doubts came up I could
point to a person or people we both knew. When doubts came up I would talk
him through to the unreasonableness of the basis for the doubt. Sometimes I
would point out what sighted people thought was a superiority in vision, but
was only an illusion. (Such as being able to tell by vision if a stranger
was nice or not-or the pan is hot or cold)

Totally blind kids (from birth or memory) have a unique challenge in that
they have no concept of sight whatsoever. It is like you or I trying to
imagine the fourth dimension>we have no personal reference and can not
possibly imagine it. We only have ideas from others who have experience with
it. The ideas they get are often biased. I have heard many blind from birth
kids exclaim that eyesight seemed almost magical in its power to know a lot
of things and from such distances. You have to work at taking the magic out
of it. You do have to recognize how it seems magical and how it is a great
sense. But it is not everything by a long shot.

There have been times, even as a teen and not too long ago where tears came
or some doubt showed up still for Jordan. One night it was frustration with
long hours of homework. He had the idea if he was sighted that it would not
take so long. That is not necessarily true. He was just feeling sorry for
himself. All 4.0 and 3.8 students in AP and honors courses are doing many
hours of homework a night. 

I take time to point out there are some things that are superior
non-visually. Ironically no one has audience "eye contact" and perfect
posture like a blind person who can read a speech in Braille. You will have
to notice these things and point them out.

Our kids get HUNDREDS of messages daily, weekly, that blindness is inferior.
Psychologists say for every criticism, or negative put down, humans need 10
positive encouraging messages to even things out. That is a lot of
counter-acting we have to do. One can not do it unless they make it a
lifestyle and are making purposeful efforts at it. This is key though, THE
EFFORTS MUST BE GENUINE. False praise or praise for doing nothing can be
even more damaging than clear ideas the child knows are false.

Also words alone are empty. If a child is told they can be anything, and
even knows blind people who are doing normal things or even extraordinary
things, but that child does not have the personal skills it will not do much
good. That is why normal expectations at home, a refusal on our part to feel
sorry or over-protect, a LIFESTYLE of chores and independence practice will
make them able to walk the talk.

Remember last year Stephanie? I posted how I had been reading a list of jobs
to Bogdan and Jordan. I think one was a masseuse or something. And Jordan
commented "oh that would be a good job FOR A BLIND PERSON". I was shocked. I
couldn't believe he was still thinking of any job on those terms. We
discussed it at length over a period of days. We debated. I said, Is a
doctor a good job FOR A BLIND PERSON? IT DEPENDES ON THE BLIDN PERSON...just
like it depends on the sighted person. It depends on intellect and ambition,
NOT ON EYESIGHT. I posted a reminder to have conversations with our kids,
because these things lurk--they can not help but lurk because of all the
messages they get daily. You said something like you were glad Kendra felt
so good about herself and she believed she could be anything and you didn't
have to worry. (I am NOT trying to say I told you so...) I am sorry to say,
I knew this was coming...it has nothing to do even with if we have been
great parents and really connected to the NFB from day one. It is a disease
they all catch to some degree...Which is why it is even more important to be
connected to each other, the NFB, and give our kids normal expectations.

Stephanie, you are a great mom, you and Richard have done things
"right"...keep doing what you have been doing. Kendra will believe again,
and doubt again, but in the end she will believe and she has as good a
chance as any 20/20 kid to fulfill her own potential.

My heart goes out--I know the stabbed in the heart feeling. Don't let that
get to you--we have to fight feeling sorry for them in the tiniest way,
because they can feel it. How can I believe I am equal to all if even my
parents feel somewhat "sorry" for me because of my blindness. I have tried
to turn that into the admiration I feel for Jordan's attitude and work ethic
in rising above the low expectations of others.

You also DON'T KNOW what Kendra would have been like had she been
sighted--you don't KNOW that eyesight alone would have or will give her ANY
better-ness in life. She needs to know that too.

Much, much, love,

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc
-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Amy Ruell
Sent: Tuesday, November 18, 2008 11:13 AM
To: 'NFBnet Blind Kid Mailing List,(for parents of blind children)'
Subject: Re: [blindkid] When your child realizes she's different....

Hello Stephanie,
I'm sure that those words were very hard to hear!!! Do you know why she's
struggling with this right now? Maybe if you knew more, you could help her
solve the undrlying problem that is causing her to wish she could see.
Thanks.
Amy

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Kieszak, Stephanie (CDC/CCEHIP/NCEH)
Sent: Tuesday, November 18, 2008 11:45 AM
To: blindkid at nfbnet.org
Subject: [blindkid] When your child realizes she's different....

My 6 year old daughter has recently started talking a lot about being blind
and about her "acrylic" eyes, as she refers to her prosthetics. The other
night, she said to me "Mommy, can you get me something so I can see with my
eyes instead of with my hands?"  I felt like someone had plunged a knife
into my heart!  For you parents of older kids, was there anything you ever
said or did that helped when your child seemed to be feeling sad or angry
about being blind?  I tried reminding her of all the other blind people we
know who also don't see things with their eyes but that didn't seem to help.
Any suggestions would be greatly appreciated! Stephanie

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