[blindkid] blindkid Digest, Vol 123, Issue 9

[Sarah Thomas]

You begin with a legitimate observation and then draw a conclusion that is way off base. I simply do not understand why you have a problem with successful blind people.  People from all walks of life have struggles and when they find ways to overcome those struggles, sharing their success and strategies is useful information for people with similar struggles.  Providing examples that blindness does not mean incompetence is very useful to the blindness community and humanity at large.  The NFB has fought for access to education, access to public facilities and is currently fighting for equal wages for people in sheltered workshops.  Those initiatives affect all blind people--not just super smart ones.

You say your child has a great school environment and you wouldn't have it any other way.  You say that your child has access to a recreation program for developmentally disabled kids and that the staff is open to listening to ways to accommodate your child.  You are lucky.  I've been through many 18 hour long IEP meetings just trying to get my son braille and/or accessible materials that he is legally entitled to. Schools have willfully denied him access to an education. I've seen him rejected by programs for able bodied kids and disabled kids because he is "vanilla blind."  I can't arrange my life to live in the San Francisco Bay area so I looked for an organization that addressed some of the issues I faced as the parent of a blind child.  NOPBC and NFB have helped my son and me with some(not all) of the issues we have faced.  I don't expect them to solve all my problems and I've given back to the organization.  I do understand that parenting a child with multiple disabilities is very difficult but just because my child is vanilla blind doesn't mean I don't face additional challenges that make my free time precious.  Do I understand all of the challenges you face? No.  You seem to think my life is easy--hubris.

I'd be way more sympathetic to your plea if you asked for a way to add more content for multiply disabled kids and offered some ideas about how this could be done than I am with your position that it is NOPBC's responsibility to provide you content you want.  Like Holly said, we aren't experts in multiple disabilities.  Why is it my responsibility to go learn about your problems and provide you with information tailored to your needs?  What I see happening at NOPBC is people coming together to share their struggles and successes; people trying to raise the bar for blind kids.  Maybe you could offer to be a moderator for a parents of kids with multiple disabilities list.  Several people have said that they are members of NOPBC and are parents of kids with additional disabilities.  Maybe you could nominate your son's teacher for teacher of the year.  The teacher who wins gets a trip to the convention and addresses the NOPBC.  People could learn about educating kids with with multiple disabilities.  Anything useful and educational would be an improvement over the attitude that "you owe me something and if you don't do it my way, you are wrong."   

I don't like everything that the NFB and NOPBC does.  I don't agree with everything that the groups say and do.  I take the useful parts and discard those that don't work for me.  Waiting for or demanding that the organization change to suit my needs and opinions would be fruitless.

Sally Thomas

 
On Jul 14, 2014, at 6:51 AM, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:

> 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.
>> 
>> 
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