[blindkid] More than just blindness

[Lalena Fayre]

As I read through my latest issue of Future Reflections, I was struck with
a further sense of isolation. The same holds true when I read this listserv
and review the agenda of the upcoming national conference.

My son is totally blind with multiple other disabilities - nonverbal and
global developmental delays that impact every area. I'm fortunate to have a
good foundation and understanding of blindness education. But when you add
the other issues to the blindness, one is struck with how much blindness
complicates things. For example, typical adaptive communication devices are
vision based. Another, pre-Braille work is important but after 3 years of
it and no significant progress made, you are forced to deal with functional
skill development which the therapist don't know how to do with a blind
child, let allow a blind cognitively delayed child.

I turn to the NFB for support and resources, yet publications are full of
typically developed children who happen to be blind. I call my local
organizations here in the bay area (which I know are inline with NFB
philosophy) looking for social opportunities for my son, but he can't
participate because of his developmental delays.

At the end of the day I'm left wondering......am I the only parent of a
child with multiple disabilities, developmental delays, AND blindness? Are
the majority of blind child typically developed? And where do I turn for a
network of parents who may understand?