[blindkid] More than just blindness

[Carol Castellano]

Hi Lalena,

My heart goes out to you and to any parent feeling isolated while 
doing such a hard job.  You and your child are welcome here.  We are 
here for you, too, and want to hear your challenges and triumphs and 
ideas, and give you support, information, ideas, and love.

As someone mentioned, most statistics say that about two-thirds of 
blind/VI kids have additional disabilities (about one-third moderate 
and about one-third severe), so there are MANY of us out here who 
know and understand.  In fact, we usually have board members both on 
our national  board and on the state boards who are parents of MD 
children.  As someone also mentioned, there are not that many of us 
around--families with blind kids of any kind--so sometimes we have to 
reach out beyond our own community or even state to find experienced 
parents and support.

In NOPBC we work hard to be there for ALL parents of BVI kids--from 
babies to college age, from low vision to totally blind, from just 
plain blind to severe multiple disabilities.  We do care and we do 
understand.  For example, in the packet for this year's conference 
registration we have an article by a parent of a totally blind little 
child and one by the mom of a multiply disabled teen.  In our 
workshop lineup, we try hard to have a workshop in every session that 
would be helpful to those in different categories.  For MD this year 
we have Independent Movement & Travel for Children with Additional 
Disabilities, Hands Off! Honoring the child's right to personal space 
and control over his/her body. Instructor: Carlton Walker, Teacher of 
Blind Students, President, NOPBC, and Saying It My Way, Encouraging 
communication, learning, and play in children with communication 
needs. Instructor: Natalie Shaheen, Director of Education, NFB 
Jernigan Institute.  Of course many of the other workshops would be 
of interest as well.

One of the things we do which I think is really important is assist 
with an approach to education and development--we don't care if a 
child has additional disabilities or not--we will stand shoulder to 
shoulder with the parent to insist that every door stays open for 
that child, that the child gets an appropriate education, and that 
the child is allowed and enabled to develop a sense of control over 
his life, to whatever degree he/she can.

Please do share your questions and ideas with us--on this listserv, 
on our FB page, or through ideas for articles and workshops.  We 
would welcome your input.  I am glad you wrote and hope that we get 
to meet one day.

Warm wishes,
Carol

Carol Castellano
Parents of Blind Children-NJ
Director of Programs
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.blindchildren.org
www.nfb.org/parents-and-teachers


At 10:19 AM 6/30/2014, you wrote:
>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?
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