[blindkid] Becoming aware of services?

[Carol Castellano]

It really is distressing that families don't find information 
earlier.  I suppose part of the issue is that blindness in children 
is a very low incidence disability and so even pediatric 
ophthalmologists have not seen it often.  And, as others have said, 
the doctors treat the medical part and don't always know the 
informational needs in the other areas.
Carol

At 03:24 PM 7/24/2010, you wrote:

>Yes, I totally agree.  When Roman was born they told us right away 
>that he had congenital glaucoma and referred us to specialists.  He 
>underwent multiple surgeries his first year (one per month).  He 
>also developed cataracts because of all the surgeries.  However, 
>during all of this, I never really knew what the definetion of 
>"blind" was or even "legally blind".  All I knew was if you couldn't 
>see, you were blind.  But my son could see, okay not very well, but 
>he could see.  Now don't get me wrong, it wasn't denial on our part 
>to resist him being blind.  I just never knew that he needed these 
>things.  Now yes, I did lots of research, but it was all medically 
>related about the disease and such.  It never dawned on me to do 
>anything more until he was in a private pre-school and I figured I 
>would have to teach him braille.  I asked the teachers if they knew 
>where I could find out about getting some books to teach him.  See I 
>had searched about
>  braille, but I never got anything about school services for 
> it.  They, the teachers told me that the school would probably be 
> able to help me find out.
>When the school found out that they had a child coming up that was 
>going to need braille, they asked for medical info and then sent off 
>a special ed teacher to become a TVI.  Yes, my school is great in 
>the fact that we get our TVI each and every day and that they give 
>us almost anything we want (to a point).  However, after my second 
>son started school and then we found out about another child that 
>was only 3 and getting services, I wished we could have got the ball 
>rolling for us sooner.  Granted, school did not know about my kids, 
>but I never even knew that we could be getting this help.  I sure 
>wish we could have started them with a cane and braille soooo much earlier.
>Roman and Ethan have a degenerative disease and so even though 
>Ethan's vision is better than Roman the school is giving him 
>services with the idea that it is a very strong possibility that he 
>will need it.  How nice, but it could have been so much better to 
>start it early.  How come parents don't get this information?
>
>
>
>
>
>
>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
>
>
>
>
>
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Carol Castellano
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nopbc.org