[blindkid] blindkid Digest, Vol 123, Issue 9

Holly Miller hollym12 at gmail.com
Sun Jul 13 01:44:54 UTC 2014


Lalena,
I certainly don't think you are a ranting lunatic.  While I won't pretend I've been in your shoes I do have several friends with severely disabled kids (blind and sighted) and know the tremendous difference family life is for them than us.  The logistics of a simple outing are on a whole different level.

Being stared at, snickered at, avoided should not be happening in our organization (or anywhere else).  Of course I believe it does happen and I'm sorry for that.  All of us know what the stares and whispers feel like when people realize our child is blind.   We should know better than to do it to someone else just because their child is a different kind of different.
I don't know how as an organization we can stop that but I hope every individual reading this holds it in the back of their mind for the next time they meet a family who could use a friendly face.

Are the majority of blind children multiply disabled? I don't know. Do we have reliable stats on that?  If they are, Multiply disabled is a spectrum.  Not all multiply disabled children are globally delayed.  A child who is blind & AdHd or dyslexic can be listed as MD when it come to IEP statistics.  From my own lay-observation, many blind kids have some autistic tendencies and would likely  be classified as MD on paper but are quite capable of becoming independent adults.  It may take extra intervention than "just" blind kids but it's a totally realistic outcome.  

So that takes me to seminars and articles.  Yes, we should make sure we cover topics relevant to heavily disabled children but I'm not sure I agree we have too much when it comes to independence as an end goal.  We are experts in blindness and independence.  There are a lot of things we are not experts in.

Many of our blind kids are adopted (mine is! ) but we don't hold seminars on attachment therapy.  Many of our kids are blind due to retinoblastoma but we don't write about the latest cancer topics.  It's not that these things wouldn't be useful to or welcomed by our members - it's just not our wheelhouse.  
There are other groups that are experts in those things.  

I am NOT saing "go away, find another group"  I am (perhaps clumsily) saying maybe we can't be everything to everyone but hopefully we can give everyone something.  

Holly


> On Jul 12, 2014, at 6:01 PM, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:
> 
> First I have to admit, I'm struggling with how to reply to individual
> messages that posted on this list. So any tips on how to do that is great!
> 
> At first I was going to let most of the well-intended messages slide by. I
> didn't want to explain in detail why many of the suggestions and thoughts
> are just wrong. Worse some of the responses were just so inaccurate about
> how the national organization responds. But with Barbara's response in
> particular (and many of you who sent me private messages) I just have to
> respond more.
> 
> So my son has no visual acuity. He is totally blind. He was adopted at the
> age of 5. At that time he had a development level of a 3-6 month old
> children. We knew of his blindness and due to my ex being blind, our
> experience in NFB, my ex working at CCB, attending multiple conventions,
> etc, I had few fears of his blindness and didn't have the misconception
> that blindness would hold him back in any way.
> 
> I agree that for some families it is very possible for a school district to
> discriminate against blind children and even more so against multiple
> handicap children who are also blind. This hasn't been the case with my
> son. He is in a Braille enriched environment. I wouldn't allow him to be
> otherwise.  I wanted my son to "play" with the Perkins brailler. I wanted
> him to use the old Library of Congress tape recorders. I wanted him to have
> a cane. So I am not going to jump on the NFB bandwagon that of course the
> educational system is against blind children and keeping them illiterate.
> And honestly that has nothing at all to do with my original post.
> 
> My post is about the programs of the NOPBC and the NFB. My post is about
> the shadow the MAJORITY of multiple handicap blind children are kept in by
> the very advocacy group that should be shining a light on them. As multiple
> people have stated, the MAJORITY of blind children now have multiple
> handicaps yet as I said the majority of programs, conference seminars,
> conference child care, etc. is geared toward fully functioning blind
> children. I'm not saying that there is no benefit to the general seminars.
> But I can't tell you how frustrating it is to sit in a seminar about your
> child going to college, or increasing age appropriate independent travel,
> etc.. I might as well sit there and cry feeling as if no one understands
> what it's like to have an 11 year old who is developmentally 3. Where are
> seminars on long-term care for your child? Finding places where your
> heavily disabled child can have independence? Things along those lines.
> 
> And I hear the response - the NOPBC is a volunteer group, start your own
> group, start your own activities, etc. But talk about victim blaming. I
> throw my hands up in exasperation because how in the world can I find time
> to do that when I need to provide 24-hour care for my child? How can I
> start another branch of NOPBC when I'm dealing with life as a parent to a
> 11 year old who is developmentally 3?
> 
> I love my son and I advocate for my son like no one's business. I have
> barked up many trees and been the squeakiest wheel possible, and it's
> worked. There are strides that have been made but the social isolation is
> what kills me the most. It is that need to belong and feel as if I have
> people in my corner who understand what it's like on a daily basis.
> 
> I don't want the stares or the "tsk tsk" response when I ask for 1:1
> assistance for my son to participate in activities to the best of his
> ability. I don't want someone to tell me that I should have my son in a
> quiet corner when he needs it but basically be ignored the rest of the
> time. I don't want the stares when I go to a NFB or NOPBC convention. I
> don't want my son to be looked down upon because he isn't a fully
> independent blind child. I don't want to hear the gasps when I ask if he
> can have 1:1 supervision and hand-over-hand assistance. I don't want to be
> lectured as if it's my attitude or lack of Foundation philosophy that is
> the problem. I don't want to be treated as if I'm just another "sighty"
> parent who doesn't understand blindness and thinks that blind people should
> be coddled.
> 
> All of these things are wrong. Totally wrong. But based upon past
> experience and reading the organization's materials, the problem isn't that
> there is a blind spot (forgive the pun) in the organization, it's that
> there is a problem with me.
> 
> I feel empowered that I'm not alone. That I'm not the only parent of a
> multi-disable blind child who has felt this scorn. And I don't think the
> solution is to just leave and make your own organization, I think the
> solution is for the national office to focus on issues of multiple
> disabilities and blindness.
> 
> I'm sure I've angered some of you. Seemed like a ranting lunatic but well,
> I'm human and I hope that my rant might just dislodge this notion that I'm
> not educated on philosophy, unaware that this is a volunteer organization,
> or haven't read enough books yet.
> 
> Peace and love.
> 
> 
>> 




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