[blindkid] Why Do You Want to Make that Child Blind?

Tue Mar 23 13:11:42 UTC 2010

Sounds like everyone was quick to put a developmental delay label on your daughter at such a young age. Especially if she is only 1 to 2 months behind. Where is the delay? My daughter was born at 24 weeks gestation and began walking at 18 months. Every child will be different however. You may want to ask the label be removed from paperwork. This could create low expectations for others dealing with your child (now and in the future).
I would also worry that your TVI might pass on her assumpitions that learning braille is going to be "hard" to your daughter. She should have a positive and creative attitude about teaching braille. My daughter also has some sight. TVI's told us they would have to blindfold her to learn braille (as if it was some type of torture). At the end of the day, my daughter was never taught braille and struggled to keep up. Finally she became so frustrated (as with me) with the system, she started taking a Hadley distance education course on her own to learn braille while in junior high. She is currently as senior and is working feverishly to build her reading speed before college. It is much easier to teach the kids while they are young. I would recommend you call a meeting and ask/demand goals be written to introduce braille and orientation & mobility training (cane travel). You don't have to wait - you can call IFSP's (ARD's) at any time.
Just thought you would like to hear another mother's testimony.
Kim Cunningham

--- On Mon, 3/22/10, Eliza Ellett <elizaellett at yahoo.com> wrote:

From: Eliza Ellett <elizaellett at yahoo.com>
Subject: Re: [blindkid] Why Do You Want to Make that Child Blind?
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" <blindkid at nfbnet.org>
Date: Monday, March 22, 2010, 11:01 AM

Carol, 
 Your article completely struck home, I actually started crying, someone finally understood.  I want to go to the convention just to meet you and thank you in person. I completely feel/felt like nobody understood my anxiety of the situation. My daughter's TVI is wonderful, but she too is worried about her having "too much" vision. She still readily approves learning braille and cane walking, just wanted me to know it my be difficult, since she still has "decent" vision. She can see about 12-18 inches in front and that's with her attention on one object. She crawls into everything, not so much now since she's used her HEAD as her feeler for the last six months or so. Also, I know it varies, but is there an estimate on age of when a visually impaired child may start walking? Is it the vision that is delaying her walking or could it be a combination of things? She is also moderately to severe hearing impaired, they have her down as developmentally
delayed, but is it probably because of the two sensory impairments? She is coginitively within a month or two of her age, she's 21mths. Let me know what you think, I would appreciate any guidance. 

Thank you, 
Eliza

________________________________
From: Marie <empwrn at bellsouth.net>
To: Blindkid email <blindkid at nfbnet.org>
Sent: Mon, March 22, 2010 7:46:15 AM
Subject: Re: [blindkid] Why Do You Want to Make that Child Blind?

My husband read it last night and he also thought it was excellent. It was an opener to a pretty good discussion. It was perfect timing for such a discussion too. Today we return to our son's vision rehabilitation doctor for re-testing and recommendations. The school district relies pretty heavily on her recommendations for guidance.
Our appointment is at 1045 am central time. I will be checking email until about 945 am. I would love to hear suggestions from anyone who is able to send them.
I should mention our son's TVI will be attending the meeting as well.
Marie
Sent from my Verizon Wireless BlackBerry

-----Original Message-----
From: Carol Castellano <blindchildren at verizon.net>
Date: Mon, 22 Mar 2010 07:44:13 
To: NFBnet Blind Kid Mailing List,\(for parents of blind children\)<blindkid at nfbnet.org>
Subject: Re: [blindkid] Why Do You Want to Make that Child Blind?

Hi Marie (yes, you may call me Carol!),

Thanks for the kind words.  I feel really strongly about the 
subject--as do many Federation members--as I truly get call after 
call from parents whose children are kept from learning the very 
skills that would enable them to lead independent lives.  Just a few 
days ago, there was another such situation.  The child is being 
taught braille now--after "flunkiing" kindergarten--but the parents 
have been told no, he doesn't need a cane.  You can predict what is 
going to happen.  He is already using his foot as a feeler on stairs 
and when it is bright or dark in a room or outside.  He will reach 
the age that most kids learn to cross streets and that will be 
delayed.  He will become a pre-adolescent and will not be able to go 
out at night with friends--he'll be embarrassed because he can't walk 
at night independently and believe me, a bunch of boys will not want 
a guy holding onto them all evening.  And then someone will say, gee, 
maybe he ought to have a cane.  He'll be thirteen or fourteen or 
fifteen and guess what, shocking, he won't want to have anything to 
do with one.    then the "experts" will tell us, nope, kids just 
don't like canes.

Ugh.

Carol

Carol Castellano, President
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nfb.org/nopbc

At 11:30 AM 3/21/2010, you wrote:
>Carol (may I call you Carol?) I loved your article "Why do you want 
>to make that child blind?" It says so much and spoke to my own 
>wondering about how much to emphasize Jack's legal blindness. I am 
>going to get my husband to read it too. I would also like to copy it 
>and distribute it to every member of our IEP team. I'll talk to my 
>husband after he reads it and see what he thinks.
>Moms and Dads out there go read the article. It's a fresh 
>perspective and likely not the way provided to you by most people you know.
>In fact, Carol, is there an online link to this article someplace? 
>I'd love to point my blog readers to it as well.
>Marie (mother of Jack, 4 years old with Apert Syndrome)
>http://allaccesspasstojack.blogspot.com
>Sent from my Verizon Wireless BlackBerry
>
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