[blindkid] blindkid Digest, Vol 123, Issue 9

[Lalena Fayre]

Ashley -
I couldn't agree more with your day. The workshops and focus of the NFB is
on the bright stars who go on to university and graduate school. I know
some of that is necessary because some blind people would never see a
highly educated, professionally successful blind person in their life. But
I think they go over board and that attitude is spilling over to the NOPBC.

I'm all for self-advocacy as well as demanding accessibility and
accommodations, BUT too often the attitude is that this accessibility and
accommodations MUST result in total independent access. If things like a
visual guide or visual assistance is provided then it's a failure. Worse
the person who lacks the skills is seen as less successful as well. It's
like if you can't walk through the airport without visual assistance you
aren't a fully independent blind person. This attitude drives me nuts.

When this attitude is applied to a parent/child situation it's so painful.
I'm all for children being age appropriately independent but if a child
can't be then visual guide and/or assistance should be provided and the
child and parent shouldn't be looked down upon if they need this. Full
integration isn't always possible for some mild to severe disability
children who happen to be blind.

My son does have severe disabilities for sure. I often say if he was just
blind this would be a cake walk. LOL He is biologically now 11 and is
developing at his own pace which is currently about 3 (but will change as
he grows). The city I live has a specialized recreation program for
developmentally delayed individuals. He does go to this in the summer but
the challenge there is the counselors don't know how to work with a blind
child. The good news is they are willing to be educated and quickly learn
that blindness doesn't hold him back.

I would like to find a therapeutic rec program run by one of the blind
organizations around here. (I live in the SF Bay Area). They are great for
blind and mild developmental disabilities. But can't accommodate more
modertate to severe disabilities. As other parents have said, I have to
pick and choose where my son can participate. I really do wish there were
more opportunities for him to be involved in programming for Blind kids.
But as you've said, that's for the superstars.
Lalena

On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett <bookwormahb at earthlink.net
> wrote:

> Lalena,
> I'm sorry to hear you feel so isolated. As I said, I do agree nfb needs to
> address multiple disabilities more. I agree all the focus is on normal
> developing kids.
> I'm actually the child and my parents are the parents, btw.
> My dad also felt not all needs were addressed. And, no I have no other
> diagnosis, but we feel I'm LD in some respects and spatial deficits are
> here too.
>
> I've been lucky to graduate college given the rampant inaccessibility of
> software these days.
>
> My dad felt and still feels that NFb only has workshops for the bright
> stars who go to college and often grad school.
> Its as if blind kids have to do all this stuff and make straight A's to be
> normal.
> What about the kids who are lucky to make it through community college?
> NFb has no place for them, but some cannot, due to a variety of reasons
> ranging from academic deficits to advocacy skills to blindness deficits to
> simply failure to be accomodated.
> I know some kids who only got through community college, and no they're
> not nfb.
>
> Where will these kids, now adults, find jobs? its as if the organization
> does not care.
>
> Not everyone can get a grad degree and be a professional. Not everyone is
> cut to be a lawyer, teacher, It professional, or counselor.
> And I could rant about the inaccessibility of entry level employment but I
> won't. If you even get that BA degree, you will find most entry level jobs
> are too visual like scheduling appointments is often not doable do to the
> software issues.
>
> Those kids who are the bright students tend to stay in NFB and be leaders
> in nabs.
> But, if you are below average, the organization does not have a place; not
> as a kid or adult.
>
> Laleana as for your specific situation, it sounds like a severe case. He
> acts 3 and he is 11 you say.
> Is there any recreation for kids with disabilities in your area? its
> called therapeutic recreation. we have a TR division where I live.
> They should have some activities he can do. You also might find a mentor
> for him through Best Buddies.
> In terms of socializing, I'm not sure as most kids will not play with a
> child who acts much younger.
> My only thought is to get him to play with other kids with disabilities if
> possible. For instance high functioning autistic kids might be a  good fit.
> I know some of them. they tend to do things a little slower and may be
> receptive to playing with him.
>
> All blind and low vision kids struggle with socialization; I had few
> friends growing up.
> I certainly cannot imagine  what its like for you and your son.
>
> HTH,
>
> Ashley
> -----Original Message----- From: Lalena Fayre via blindkid
> Sent: Saturday, July 12, 2014 7:01 PM
> To: Blind Kid Mailing List,(for parents of blind children)
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
>
>
> 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.
>
>