[blindkid] new member

Carrie Gilmer carrie.gilmer at gmail.com
Thu Feb 19 13:29:10 UTC 2009


Dear Marie,
I am glad you have found us. We do have lots of information, and nearly all
of us can empathize with being overwhelmed in the beginning with sifting
through all the information and with not quite knowing how best to help our
child or which thing to focus on in helping them first.

We do have a lot of information so be patient with your self and give
yourself time to absorb it. The great thing about this list is getting real
time practical advice personalized and specific to your questions as you
indicated. We have knowledgeable parents, also teachers, and blind adults on
the list here to help and support.

I don't know how new you are, but just a few days ago if you missed it our
parent president in Colorado gave some wonderful advice on speech
development, and more importantly I think, choosing which thing to work on
first. Sometimes we try and work on everything our child needs by little
bits here and there and little progress is made. It is a general rule I find
in life for many things that are overwhelming or have gotten complicated to
pick one area, begin, zone in like a laser on it (bring a burst of service)
and then go on to the next thing. In case you missed what Rene had to say I
will forward to you off-list. 

You may have questions about working with other professionals such as OT's
or ST's, or about low vision in general, or things you can do to help him
develop the fine and gross motor strength and skill. Break it down, bring us
the problems or challenges "of the day" so to speak. And we will do our
best. Above all be patient with yourself in learning new information. None
of our children came to us with an instruction booklet and we did not start
out with certificates in expertise in our children's disabilities. And don't
forget to trust your own good sense in wanting to give your child every
opportunity to reach his learning potential. Many of us were told "your
child will never..." In building a house the floor and walls come before the
ceiling, we shouldn't start with a ceiling on our children until after we
have the frame and foundation too.

Also, please feel free to call. And please let us know (privately if you
wish) where you are. There may be local resources we can send you and we
also have a free magazine and literature we can send you.

Warm Regards,

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 Marie Smith
Sent: Wednesday, February 18, 2009 8:56 PM
To: blindkid at nfbnet.org
Subject: [blindkid] new member

Hello, I am a new member of this listserv and hope to learn from other
members how I can best help my son who we've recently been told has
estimated vision of about 20/300 in his right eye due to optic nerve
atrophy. The left eye is pretty much nonfunctional because of the optic
nerve atrophy. I am feeling a bit overwhelmed at the moment by just going
through some of the pages on the website. My son also has fine motor, gross
motor, and speech delays caused by frequent surgery/anesthesia, frequent
hospitalization and being born with Apert syndrome. I look forward to
hopefully networking with other parents who can give us real world practical
advice.

 

Marie S,otj

 

 

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