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

Wed Nov 19 05:49:57 UTC 2008

Kala,
That is the trouble with email, and often not even having met the person(s)
you are writing to or who are reading the subject... I wasn't assuming you
had created a world of specialness in an overboard way, and I wanted you to
know I was not assuming that.

But it did remind me of things in general with attaining normalcy. It
reminded me of the importance of the search for regularness...For Anonymity
as Dr. Maurer said in a speech once. For being special not because you are
unusually tall or short or thin or blonde or blind or read with bumps
instead of flat lines, but because of your gifts and personality--your
individual-ness, within being a "normal" human being. The search to blend in
and not stick out, and to shine as a star from real efforts not from having
fame handed.

When my son was in fourth grade I taught his Sunday school class, we were
talking one Sunday about what makes you popular. Jordan piped up and said
"I'm popular because I'm blind". It was true in a way, everyone at school
knew him, he was the only blind kid, the janitor...everyone. He had picked
up on that and internalized it. I did not want him to feel popular because
he was blind. I wanted him to feel popular because he was kind and friendly
and fun to be around in his own unique way.

There were times I thought we had "gotten past it" and Jordan had all the
confidence or "believed" or thought of himself more as the same as others
than so different or it was a phase and it would not happen again and I was
not prepared for the surprise of doubt coming back or the ways it came back.
I really wanted him to have a coat of armour of confidence. And the truth is
our kids need confidence, especially with the low expectations that abound.
I worked hard to base that confidence in real terms and in his own personal
strengths and successes from real efforts, not in some specialness due to
blindness or its techniques. There were a few times (handful) where he was
exhausted or spent and blamed blindness for his troubles-I allowed him to
cry or vent and we talked it out until the real reason for the frustration
was found or if it had something to do with blindness, well that is they way
it was sometimes. Sometimes, it had to do with people's hurtful
treatment--he just had to learn those people were wrong.

I liked what Debbie Stein has just said too. They will all have "bad days"
some times just because they are human and stuff about life in general gives
us bad days and sometimes there are real frustrations that come with being
blind itself or with the world's reactions to it. It doesn't mean they are
not growing up well adjusted. Well adjusted also means knowing how to handle
a bad day or crummy feelings.  Truly, blind and sighted people have much
more in common than in difference, much more.

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 kala hjelle
Sent: Tuesday, November 18, 2008 2:51 PM
To: blindkid list
Subject: Re: [blindkid] When your child realizes she's different....

Carrie, I do appreciate you writing that your response was not directed
specifically at me, but I do want to clarify what I wrote.  We do not
think/act in a way that says Lily's blindness is the only reason she is
different/special/unique. I think I wrote that we say it is one of many. And
although we do think that her blindness makes her unique and is an important
part of who she is, it is one of MANY, and she knows that.  I just wanted to
share one way that Lily embraces her blindness (being able to teach people
about it), which seems to help her not feel down or sad about it. 
The buddy camp sounds fantastic... What a fun way to get to know yourself!
kala

> From: carrie.gilmer at gmail.com> To: blindkid at nfbnet.org> Date: Tue, 18 Nov
2008 13:15:14 -0600> Subject: Re: [blindkid] When your child realizes she's
different....> > I am going to write something here...and Kala especially
since you are new> and do not know me I want to EMPHATICALLY state this is
not directed> personally at you...what you wrote just reminded me of
something and made me> think.> > I worked at Buddy camp in some way for 10
years. It is a camp where> everyone, campers and counselors are blind. Every
year the biggest challenge> for many was that they were no longer "special"
because they were> blind-EVERYONE was blind. They had to struggle to find
what was special> about THEM. This I always witnessed was the best and
hardest thing for many> of the children...above the skills, everything.> >
Also I heard a blind woman from birth give a speech once how she was raised>
to believe she was really special, really smart, really uniquely great. Her>
Braille reading was special. Then she got to college and found out how>
normal she was. It was quite a shock. Her reading was normal, that was
about> it. It was really quite a shock to her.> > Also we have to be careful
with totally blind kids to separate out true just> plain curiosity in trying
to understand and figure out what sight even is> and is capable of verses
true sadness at or doubts about blindness. It is> important not to mix those
things up-they are two totally different things.> > > > 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 Mindy Lipsey> Sent:
Tuesday, November 18, 2008 11:37 AM> To: NFBnet Blind Kid Mailing List,(for
parents of blind children)> Subject: Re: [blindkid] When your child realizes
she's different....> > I would definately suggest having other friends and
role models who are> blind, so she doesn't ever feel "alone".> I also remind
my boys that everyone has "something" - basically something> they have to
"deal with".> I also tell them that God made us all the way we are for a
reason. > Sometimes we don't know what that reason is yet, but we will
eventually find> out.> Hope this helps.> > Mindy > > --- On Tue, 11/18/08,
Amy Ruell <aruell at nbp.org> wrote:> > From: Amy Ruell <aruell at nbp.org>>
Subject: Re: [blindkid] When your child realizes she's different....> To:
"'NFBnet Blind Kid Mailing List, (for parents of blind children)'">
<blindkid at nfbnet.org>> Date: Tuesday, November 18, 2008, 12:12 PM> > 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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