[blindkid] More than just blindness

Wed Jul 2 02:30:22 UTC 2014

Hi Lalena,

It might not be obvious but NOPBC is a volunteer organization. The programs at convention are run by volunteers and most talks are given by volunteers.  Programs are not designed to exclude anyone. If there is someone who wants to write an article for Future Reflections concerning their experience with kids with multiple disabilities, I imagine the editor would be happy to include it. If someone wants to organize a session at convention and can find knowledgeable speakers, propose it to the board. In my experience, the issues covered are those where volunteers have the time and experience to make the sessions work. It's just not possible for a small group of people to do everything.

Sally Thomas
Sent from my iPhone

> On Jul 1, 2014, at 11:23 PM, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:
> 
> Hi Carol -
> I do appreciate your lengthy response. The NOPBC is certainly full of kind
> people with great intentions but when it comes down to it the programs of
> the NFB are geared toward typically developed or mild MD/blind children. I
> think of the Readers are Leaders program, the children featured in Future
> Reflections, even the child care provided at national convention takes
> little into account for the children who need 1:1 assistance to fully
> participate. If 1/3 of blind kids have severe MD and there are board
> members who are parents of kids like mine, why aren't there more programs?
> more education? more acknowledgement of raising a blind child who because
> of their developmental delays will not become a fully functioning adult? At
> a minimum, why are there so future articles written about these children?
> We are talking about 1 out of every 3 blind children but the publications
> and programming is geared towards the 30-40%% of kids who are blind only.
> 
> I'm not saying that there aren't challenges for a blind or low vision kid
> with no other disabilities. There very much are and I'm glad the NOPBC is
> here to support them in spades. When I reviewed the conference agenda, I
> did read of the 2 workshops ( hands off is applicable to all blind
> children) which would directly relate to the 60-70% of kids with MD/blind
> issues. But again the agenda is similar to this listserv and future
> reflections, focused on the 30% of kids who are blind only.
> 
> I am certainly not bashing the work of NOPBC or the NFB but I'm saying that
> more emphasis needs to be placed where the majority of kids are. The future
> of the blind community is a majority of people with MD on the mild to
> severe spectrum and the advocacy, support, and resources for them needs to
> increase. Because as someone pointed out....blindness is a low incident
> disability and MD with blindness is even lower, so the support community is
> national not simply local. BTW I see this lack of support even having
> lived, and been a part of, NFB in SF bay area and Littleton, CO where the
> CCB is.
> 
> Thank you to those that spoke up with me and helped in making a personal
> connection. And Carol, we have met. LOL but I know it's tough to remember
> everyone's story and name.
> Lalena
> 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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