[blindkid] A question

Jess sA Mobile jess28 at samobile.net
Sat Jul 24 23:29:48 UTC 2010


  Hi Richard and all,
Firstly, both the parents have to except  that they have a blind or visually
impaired child. Then secondly  they need to be made aware of the National
Federation of the Blind as a whole and then the National Organization of
Parents of Blind Children.   I'm an adult whom is visually impaired due to
Albinism .  And, I finally made the decided about a year or so ago to join
the Federation  because I finally realized after being a member of ACB for
almost ten years that my philophsy on blindness is more of the Federation
Philopsy.  For any parents out there whom raised their kids in the 1980s and
sent your kids to public school instead of  a school for the blind did you
notice that your kids were put in a special education classroom where
behavior problems were the main problem?
Jessica

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Richard Holloway
Sent: Saturday, July 24, 2010 9:36 AM
To: NFBnet Blind Kid Mailing List, (for parents of blind children)
Subject: Re: [blindkid] A question

Rosina,

Your post makes me reflect on my daughter's first months and years and  
our discovery of her blindness-- Our daughter was born with one with  
one eye so small it was virtually missing and there were at least some  
concerns with her other eye on the day she was delivered. We were at a  
large Metro Atlanta hospital and then transfered to a large children's  
hospital here. She had numerous operations the first few months of her  
life by multiple surgeons, all renowned to be the best in their fields.

I have always been amazed that with all the contact we had with top  
hospitals, doctors, surgeons and other medical professionals,  
virtually no effort was made to provide us with or direct us toward  
any parental support and only when it was determined (at around four  
months of age) that she had basically no hope of recovering any vision  
at all were any discussions of referrals for alternative techniques  
for the vision impaired offered, and even those were minimal, at best.

If this is how the apparent "best in their fields" in a large US city  
handle assisting parents of blind children, I can't imagine it is much  
better anywhere else. In fact I have never heard anyone tell me how  
their hospital or doctor (etc.) was all about getting them support  
through the NFB or NOPBC or any other organization. The medical focus  
is on repairing the medical conditions and restoring vision. That's a  
fine thing if there is vision to save or restore, but no matter how  
well that works out, unless vision can be restored to typical levels,  
the patients are going to need alternative solutions for their entire  
life and they and their parents are going to do much, MUCH better with  
support. (I have always wondered if any other groups of professionals  
working with kids who have unique needs similar to ours are better at   
suggesting parents get help and where to find it.)

In our case, even if our daughter had 20-20 vision in her "good eye",  
she was never going to see on one side. I'd think that alone would  
have doctors suggesting where to get some support. But she didn't have  
good vision in either eye-- in fact she had cataracts in the other  
eye. There was much more wrong (with her vision) as we would later  
learn, but they knew about the cataracts on day one-- so I can make no  
excuses for their lack of support. They suggested these were only  
"peripheral" cataracts and would not impact her field of vision. Well,  
by her two month well visit, she had no red-reflex at all. Clearly,  
she was apparently functionally blind by two months of age, if not  
before.

We were actually lucky in that my wife works for the CDC so she has  
some knowledge of where to go and look for information to start with,  
and we're both fairly handy with computers and able to find things on- 
line quite well, but even at that, we had a struggle finding good  
information. It is no wonder more people are unaware of services which  
might be available for their children before Kindergarten. If nobody  
gives you the information, you do whatever you learn is possible on  
your own and that's it. I wish we could find a away to get the  
information in more places for parents to find and to encourage  
doctors and other medical professionals to be more willing to share  
information about support and other resources which could help our kids.

One other point-- our daughter is totally blind and we (and the  
professionals) knew this by the time she was about four months old (or  
knew at least that any remaining light perception would not last long  
once her retina detached and could not be repaired after several  
attempts). Surely knowing that she had no vision at all, any  
professional who knew anything about support for the blind would have  
offered it- -after all, there was no "low-vision" approach to be  
argued over in our case. I would suspect kids with some residual  
vision are even less likely to have suggestions for support offered by  
professionals (in cases where the occasional suggestion might be made).

Our kids have to work awfully hard to keep up with their sighted  
peers. The last thing they need to do be to be playing "catch-up" for  
several years right at the start of school, but it happens all the  
time. What a shame--

I think all of this sort of begs the question-- How do we make more  
parents of blind children aware of NOPBC philosophies and resources,  
and make them aware as early as possible?...

Richard



On Jul 24, 2010, at 8:25 AM, Rosina Solano wrote:

>
> Gosh, I just wish I would have known that there were services out  
> there and my child could get them.  My son didn't get any services  
> until Kindergarten because I didn't know that he could be getting  
> them.  If he had started EVERYTHING (braille, cane, etc.) earlier it  
> would not have made him start out behind the other kids.  He is okay  
> now, but it was a struggle at the beginning.
>
> Rosina
>
>
>
>
>
>
>
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