[blindkid] blindkid Digest, Vol 123, Issue 13

Kieszak, Stephanie (CDC/ONDIEH/NCEH) sek7 at cdc.gov
Mon Jul 14 13:35:12 UTC 2014


Great idea, Laura. I'd be interested in serving on that working group as well.
Stephanie Kieszak-Holloway,
President, GA Organization of Parents of Blind Children


-----Original Message-----
From: blindkid [mailto:blindkid-bounces at nfbnet.org] On Behalf Of Laura Bostick via blindkid
Sent: Monday, July 14, 2014 9:30 AM
To: NFBnet Blind Kid Mailing List, (for parents of blind children); Mark Riccobono; Natalie Shaheen; Casey West Robertson; Edward Bell
Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 13

There are many legitimate concerns being expressed here about how children
who are blind with additional exceptionalities and their families can best
be served in the NFB and in their own communities.  I think that it
warrants further exploration, and I would propose that a working group be
formed.  I'd be happy to serve.  I am interested both as a parent and POBC
leader and as a professional.  Casey Robertson and I teach the courses in
the Teaching Blind Students graduate program at Louisiana Tech University,
and we are very interested in finding better ways to teach TBSs to work
with these children and their families.  I know for a fact that the NFB
cares deeply about improving the lives of all blind people, but I agree
that we need to consider how we can improve our programs to include people
with additional disabilities.  I'd love to help.  Mark and Natalie, please
let me know how I can serve.

Laura Bostick
Louisiana Tech University
Teaching Blind Students Graduate Program


On Mon, Jul 14, 2014 at 7:00 AM, <blindkid-request at nfbnet.org> wrote:

> Send blindkid mailing list submissions to
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>
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> When replying, please edit your Subject line so it is more specific
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>
> Today's Topics:
>
>    1. Holly's comments (Lydia Anne Schuck)
>    2. Re: blindkid Digest, Vol 123, Issue 9 (Arielle Silverman)
>    3. Re: blindkid Digest, Vol 123, Issue 9 (Lalena Fayre)
>    4. Re: blindkid Digest, Vol 123, Issue 9 (Marianne Denning)
>    5. Re: blindkid Digest, Vol 123, Issue 9 (melissa R Green)
>    6. Re: blindkid Digest, Vol 123, Issue 9 (Sarah Thomas)
>    7. Re: more than just blindness blindkid Digest, Vol 123,    Issue
>       9 (Ashley Bramlett)
>    8. Re: more than just blindness blindkid Digest, Vol 123, Issue
>       9 (Marianne Denning)
>
>
> ----------------------------------------------------------------------
>
> Message: 1
> Date: Sun, 13 Jul 2014 12:16:01 -0400 (EDT)
> From: Lydia Anne Schuck <lydia.a.schuck at wmich.edu>
> To: blindkid at nfbnet.org
> Subject: [blindkid] Holly's comments
> Message-ID: <61298116.3909478.1405268161160.JavaMail.root at wmich.edu>
> Content-Type: text/plain; charset=utf-8
>
> Hello,
> I think Holly's comments are just what I would have said.
>
> I also relate very strongly to you, Lalena, in the isolation and huge
> desire for my family to be part of mainstream experiences.  There is
> chronic sorrow attached to that.  Even though I don't think blindness is a
> tragedy, I wish things were different sometimes, for the sake of everyone
> in the family. Our daughter's additional disabilities isolate us from the
> mainstream.
>
> Lydia Schuck
>
>
>
>
>
> ------------------------------
>
> Message: 2
> Date: Sun, 13 Jul 2014 13:58:59 -0700
> From: Arielle Silverman <arielle71 at gmail.com>
> To: Ashley Bramlett <bookwormahb at earthlink.net>, "Blind Kid Mailing
>         List,   (for parents of blind children)" <blindkid at nfbnet.org>
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> Message-ID:
>         <
> CALAYQJCF9bsPK37WxFEp+TcBfEExPFk_dsCVjfFZBXX6FBdOpw at mail.gmail.com>
> Content-Type: text/plain; charset=UTF-8
>
> Hi all,
>
> I am not a parent, so I have not jumped in to this discussion thus
> far, but I want to address Ashley's comments as a past leader of the
> NFB's student division, NABS.
> Ashley, your feelings are legitimate, and I am glad you shared them
> with us. As an organization we should try to be more mindful of
> including and showcasing those members who have achieved alternative
> paths to success, and those who are not above-average academically. I
> also think we should focus more on making entry-level employment
> accessible instead of just focusing on helping the lawyers, scientists
> and others in prestigious careers. I would be interested in hearing
> your specific ideas and suggestions about how this segment of the
> young blind population could be better included in the NFB, and I'm
> sure the NABS president would also love to hear any feedback,
> especially concrete suggestions for changes.
> I will also say, though, that in my experience the student division
> and our local NFB chapters are made up of people from all walks of
> life, including community college students and those without college
> degrees. One case in point: When I led Arizona's student division, my
> secretary and treasurer for several years were both community college
> students, and one of our most active members was a young man who
> worked at the Arizona Industries for the Blind and did not have a
> college degree. He enjoyed being a part of the student division and
> his local chapter, where he received a lot of useful support and
> mentorship. I just want to convey to parents that all students and
> young people are welcome in the student division and have been welcome
> as long as I remember.
>
> Best,
> Arielle
>
> On 7/12/14, Ashley Bramlett via blindkid <blindkid at nfbnet.org> 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.
> >
> >
> > On Thu, Jul 10, 2014 at 5:00 AM, <blindkid-request at nfbnet.org> wrote:
> >
> >> Send blindkid mailing list submissions to
> >>         blindkid at nfbnet.org
> >>
> >> To subscribe or unsubscribe via the World Wide Web, visit
> >>         http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> or, via email, send a message with subject or body 'help' to
> >>         blindkid-request at nfbnet.org
> >>
> >> You can reach the person managing the list at
> >>         blindkid-owner at nfbnet.org
> >>
> >> When replying, please edit your Subject line so it is more specific
> >> than "Re: Contents of blindkid digest..."
> >>
> >>
> >> Today's Topics:
> >>
> >>    1. Re: More than just blindness (Bernadette Jacobs)
> >>    2. Re: More than just blindness (Barbara Hammel)
> >>    3. Re: More than just blindness (Penny Duffy)
> >>    4. Re: More than just blindness (Robert Jaquiss)
> >>    5. Re: More than just blindness (Bernadette Jacobs)
> >>    6. Re: More than just blindness (Barbara HAMMEL)
> >>
> >>
> >> ----------------------------------------------------------------------
> >>
> >> Message: 1
> >> Date: Wed, 09 Jul 2014 09:46:04 -0400
> >> From: Bernadette Jacobs <bernienfb75 at gmail.com>
> >> To: Ashley Bramlett <bookwormahb at earthlink.net>, "Blind Kid Mailing
> >>         List,   \(for parents of blind children\)" <blindkid at nfbnet.org
> >
> >> Subject: Re: [blindkid] More than just blindness
> >> Message-ID: <53BD479C.4080904 at gmail.com>
> >> Content-Type: text/plain; charset=ISO-8859-1; format=flowed
> >>
> >> Dear Blind Parent!!!
> >>
> >> I have no idea who you are.  But if only you knew how I feel your
> >> pain!!!  I feel your pain to the very depth of my very soul!!! Can't
> >> very well keep myself a secret though.  Everyone here who knows me is
> >> going to know who's the culprit for these words here, so I might just as
> >> well let it all out now!!
> >>
> >> My husband and I, too, have a blind, autistic, non-verbal son with
> >> multiple delays whom we adopted from China.  We also have an
> >> eleven-year-old daughter who was adopted from Thailand.  Seeing this
> >> post, I simply can't hold back any longer. The world waits in line for
> >> whenever it's their turn to take our daughter for an an afternoon, day,
> >> weekend, week, or whatever.  Yet, when we bring both our children
> >> somewhere, she's welcome with open arms.  As for our son, nobody ever
> >> breathes a word.  But, the implication speaks louder than words ever
> >> will.  I can pick out the people, in fact. "Too bad we can't find some
> >> place for the family dog..."  Believe me, Darling.  Nobody knows your
> >> pain better than my husband and I. It's never what they say, because
> >> they try as hard as they might to be discrete.  Believe me!!  It's what
> >> they don't say Darling!! Hurts your heart.  Huh???  I don't wish this
> >> hurt on my worst enemy Darling!!  Believe me, I don't!!  Between a group
> >> of us, we "thought" we had everything sewed up with a very competent
> >> caregiver who, I'm sure, tried to lovingly care for our son and there
> >> was an episode which took place at our state convention and when my
> >> husband and I both inquired, people in charge, refused to give us any
> >> information.  I didn't feel I was out of place trying to find out what
> >> happened.  After all, I'm only his mother???  When I inquired the day
> >> after state convention was over, there was only a lame effort to sweep
> >> it under the rug with a "TEXT."  This upset me even worse.  From that
> >> moment on, I spent the rest of the day writing a letter which I have in
> >> the bowels of my computer which I never yet sent out.  Yes, it's a
> >> resignation letter from our state NOPC board.  I never sent it out yet.
> >> But, might as well now.
> >>
> >> I have another very, very good friend who keeps telling me she'll never
> >> come to any activities because she's so afraid of the very same things
> >> we've encountered here.  She keeps telling me, "I just don't know how
> >> you do it...  I couldn't bear that hurt in my heart for my son.  I
> >> couldn't stand my heart being crushed like that.  How do you do it???"
> >> Truth is, Darling, there some days I truly do feel absolutely crushed.
> >> Yes, my only cleansing is to cry.  Believe me!!  Because if anyone wants
> >> to participate and  be in the middle of activity it's him.  If only you
> >> could see him jump up and down with that huge round grin across that
> >> little round face and hear that infectious belly-laugh!!  Squealing,
> >> laughing, jumping up and down?  The whole scenario is absolutely
> >> infectiously unforgetable!! What a perfect picture!!  Guess ya have to
> >> be there to get it.  But believe me.  It's there.  We have one friend
> >> who sat next to him, the last morning of our state convention and he
> >> spent almost the entire time kissing her hands because he knows how much
> >> she just loves him.  And he loves her that much and more.  It was
> >> absolutely priceless.
> >>
> >> Whoever you are, you're most welcome to write me "offlist" and we can
> >> engage in further dialog.  It just warms my heart to know that my
> >> husband and I are not alone.  If only you knew!!
> >>
> >> Bernie
> >> On 7/7/2014 2:07 AM, Ashley Bramlett via blindkid wrote:
> >> > Lalena,
> >> > I've been lurking a little while and will intro myself soon after most
> >> > of the list get back from convention.
> >> > I'm actually the child; grown now and career exploring, and my parents
> >> > are sighted.
> >> >
> >> >
> >> > I agree with you. There are not enough resources for addressing the
> >> > needs of multiple disabled kids and yes the NFB focusses on bright
> >> > normal developing kids. But many blind kids have multiple
> disabilities.
> >> >
> >> > You raise some concerns which I'm sure others deal with. So your kid
> >> > is completely blind? like no vision even of close up objects?
> >> > How far delayed is he? how old? Where do you live? is bay area ca?
> >> >
> >> > What are the issues with braille reading? Perhaps with more info
> >> > someone may be able to help.
> >> >
> >> > I've seen those communication devices with pictures. Will he ever
> >> > speak with intervention, or is this permanent?
> >> > Does your TVI not have ideas? I mean, surely she or he has encountered
> >> > nonverbal blind kids before.
> >> > Maybe he can hold up objects to communicate to start with. For
> >> > instance, toy food can mean hungry and a common bathroom object like a
> >> > towel can mean needs to go to the bathroom.
> >> >
> >> > I'll also write off list with some more thoughts.
> >> >
> >> > Ashley
> >> > -----Original Message----- From: Lalena Fayre via blindkid
> >> > Sent: Monday, June 30, 2014 10:19 AM
> >> > To: blindkid at nfbnet.org
> >> > Subject: [blindkid] More than just blindness
> >> >
> >> > 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?
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> > blindkid:
> >> >
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bookwormahb%40earthlink.net
> >> >
> >> >
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> > blindkid:
> >> >
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> >> >
> >>
> >>
> >>
> >>
> >> ------------------------------
> >>
> >> Message: 2
> >> Date: Wed, 9 Jul 2014 09:01:48 -0500
> >> From: "Barbara Hammel" <poetlori8 at msn.com>
> >> To: "Bernadette Jacobs" <bernienfb75 at gmail.com>, "Blind Kid Mailing
> >>         List,   \(for parents of blind children\)" <blindkid at nfbnet.org
> >
> >> Subject: Re: [blindkid] More than just blindness
> >> Message-ID: <SNT148-DS7B33297FE31F99A4FF55BEB0F0 at phx.gbl>
> >> Content-Type: text/plain; format=flowed; charset="iso-8859-1";
> >>         reply-type=response
> >>
> >> Bernie, you make me want to cry.  You have aptly worded the same
> feelings
> >>
> >> I
> >> have.  Imagine the only time you feel like a "normal" parent is when
> your
> >> kids are the only ones in the hotel pool and you and your husband are in
> >> the
> >> hot tub watching them jump around and spin around and laugh with no one
> >> there to ignore them or goo on the sympathy.  Everyone is afraid of your
> >> child(ren) like they are monsters or something.
> >> Barbara
> >>
> >>
> >>
> >>
> >> Writing free verse is like playing tennis with the net down.--Robert
> >> Frost
> >> -----Original Message-----
> >> From: Bernadette Jacobs via blindkid
> >> Sent: Wednesday, July 09, 2014 8:46 AM
> >> To: Ashley Bramlett ; Blind Kid Mailing List,(for parents of blind
> >> children)
> >> Subject: Re: [blindkid] More than just blindness
> >>
> >> Dear Blind Parent!!!
> >>
> >> I have no idea who you are.  But if only you knew how I feel your
> >> pain!!!  I feel your pain to the very depth of my very soul!!! Can't
> >> very well keep myself a secret though.  Everyone here who knows me is
> >> going to know who's the culprit for these words here, so I might just as
> >> well let it all out now!!
> >>
> >> My husband and I, too, have a blind, autistic, non-verbal son with
> >> multiple delays whom we adopted from China.  We also have an
> >> eleven-year-old daughter who was adopted from Thailand.  Seeing this
> >> post, I simply can't hold back any longer. The world waits in line for
> >> whenever it's their turn to take our daughter for an an afternoon, day,
> >> weekend, week, or whatever.  Yet, when we bring both our children
> >> somewhere, she's welcome with open arms.  As for our son, nobody ever
> >> breathes a word.  But, the implication speaks louder than words ever
> >> will.  I can pick out the people, in fact. "Too bad we can't find some
> >> place for the family dog..."  Believe me, Darling.  Nobody knows your
> >> pain better than my husband and I. It's never what they say, because
> >> they try as hard as they might to be discrete.  Believe me!!  It's what
> >> they don't say Darling!! Hurts your heart.  Huh???  I don't wish this
> >> hurt on my worst enemy Darling!!  Believe me, I don't!!  Between a group
> >> of us, we "thought" we had everything sewed up with a very competent
> >> caregiver who, I'm sure, tried to lovingly care for our son and there
> >> was an episode which took place at our state convention and when my
> >> husband and I both inquired, people in charge, refused to give us any
> >> information.  I didn't feel I was out of place trying to find out what
> >> happened.  After all, I'm only his mother???  When I inquired the day
> >> after state convention was over, there was only a lame effort to sweep
> >> it under the rug with a "TEXT."  This upset me even worse.  From that
> >> moment on, I spent the rest of the day writing a letter which I have in
> >> the bowels of my computer which I never yet sent out.  Yes, it's a
> >> resignation letter from our state NOPC board.  I never sent it out yet.
> >> But, might as well now.
> >>
> >> I have another very, very good friend who keeps telling me she'll never
> >> come to any activities because she's so afraid of the very same things
> >> we've encountered here.  She keeps telling me, "I just don't know how
> >> you do it...  I couldn't bear that hurt in my heart for my son.  I
> >> couldn't stand my heart being crushed like that.  How do you do it???"
> >> Truth is, Darling, there some days I truly do feel absolutely crushed.
> >> Yes, my only cleansing is to cry.  Believe me!!  Because if anyone wants
> >> to participate and  be in the middle of activity it's him.  If only you
> >> could see him jump up and down with that huge round grin across that
> >> little round face and hear that infectious belly-laugh!!  Squealing,
> >> laughing, jumping up and down?  The whole scenario is absolutely
> >> infectiously unforgetable!! What a perfect picture!!  Guess ya have to
> >> be there to get it.  But believe me.  It's there.  We have one friend
> >> who sat next to him, the last morning of our state convention and he
> >> spent almost the entire time kissing her hands because he knows how much
> >> she just loves him.  And he loves her that much and more.  It was
> >> absolutely priceless.
> >>
> >> Whoever you are, you're most welcome to write me "offlist" and we can
> >> engage in further dialog.  It just warms my heart to know that my
> >> husband and I are not alone.  If only you knew!!
> >>
> >> Bernie
> >> On 7/7/2014 2:07 AM, Ashley Bramlett via blindkid wrote:
> >> > Lalena,
> >> > I've been lurking a little while and will intro myself soon after most
> >> > of
> >> > the list get back from convention.
> >> > I'm actually the child; grown now and career exploring, and my parents
> >> are
> >> > sighted.
> >> >
> >> >
> >> > I agree with you. There are not enough resources for addressing the
> >> > needs
> >> > of multiple disabled kids and yes the NFB focusses on bright normal
> >> > developing kids. But many blind kids have multiple disabilities.
> >> >
> >> > You raise some concerns which I'm sure others deal with. So your kid
> is
> >> > completely blind? like no vision even of close up objects?
> >> > How far delayed is he? how old? Where do you live? is bay area ca?
> >> >
> >> > What are the issues with braille reading? Perhaps with more info
> >> > someone
> >> > may be able to help.
> >> >
> >> > I've seen those communication devices with pictures. Will he ever
> speak
> >> > with intervention, or is this permanent?
> >> > Does your TVI not have ideas? I mean, surely she or he has encountered
> >> > nonverbal blind kids before.
> >> > Maybe he can hold up objects to communicate to start with. For
> >> > instance,
> >> > toy food can mean hungry and a common bathroom object like a towel can
> >> > mean needs to go to the bathroom.
> >> >
> >> > I'll also write off list with some more thoughts.
> >> >
> >> > Ashley
> >> > -----Original Message----- From: Lalena Fayre via blindkid
> >> > Sent: Monday, June 30, 2014 10:19 AM
> >> > To: blindkid at nfbnet.org
> >> > Subject: [blindkid] More than just blindness
> >> >
> >> > 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?
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> > blindkid:
> >> >
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bookwormahb%40earthlink.net
> >> >
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> > blindkid:
> >> >
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> >>
> >>
> >> _______________________________________________
> >> blindkid mailing list
> >> blindkid at nfbnet.org
> >> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> To unsubscribe, change your list options or get your account info for
> >> blindkid:
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/poetlori8%40msn.com
> >>
> >>
> >>
> >>
> >> ------------------------------
> >>
> >> Message: 3
> >> Date: Wed, 9 Jul 2014 14:48:50 -0400
> >> From: Penny Duffy <pennyduffy at gmail.com>
> >> To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,  (for
> >>         parents of blind children)" <blindkid at nfbnet.org>
> >> Subject: Re: [blindkid] More than just blindness
> >> Message-ID:
> >>         <CABb_=
> >> QeBK9g5cfasfgb7T5p62p06heqcM5SmnrrJ8+fxgZkBbQ at mail.gmail.com>
> >> Content-Type: text/plain; charset=UTF-8
> >>
> >> Lelena,
> >>
> >> I read through what you said. If i missed anything please let me know.
> >>  Many of the parents i assist in my state experiance more than one
> >> disability not just blindness.  I believe strongly that these children
> >> heavily discriminated against in educational settings.  Very few
> >> educators
> >> feel a child with more than one disability including blindness should be
> >> taught braille at all which is extremely wrong considering they would
> >> never
> >> say the same thing about  a child with non blindness related
> >> disabilities.
> >>  Its an understanding that literacy is important to all.
> >>
> >> The NOPBC always works hard at trying to build program that will benefit
> >> all kinds of different kids and different learners. I hope you never
> feel
> >> we are are not trying to serve your needs.
> >>
> >> Below is the NOPBC works shops from this years conference.  there was
> two
> >> workshops which were geared directly for parents of children with
> >> multiple
> >> disabilities.   I would challenge that ALL the rest of the workshops
> >> would
> >> benefit parents with children with multiple disabilities. also.
> including
> >> the college one.  The NOPBC programming is primarily our parent
> >> conference
> >> and we sponsor Future Reflections which regularly  feature stores about
> >> all
> >> kids of different kids.
> >>
> >>  Also if you are talking about NFB direct programming like the great
> STEM
> >> programs I am sure Natalie Shaheen, Director of Education at the NFB
> >> Jernigan Institute would love to hear some ideas.  I happen to know this
> >> area is VERY important to her.
> >> Let me know if I can be have anymore help.  I am very passionate in this
> >> area.
> >> -Penny Duffy
> >>
> >> --
> >>
> >> Independence in the Classroom
> >> Tools, tips, and techniques for setting up the classroom and training
> the
> >> student for independent functioning. Instructor: Jackie Anderson,
> Teacher
> >> of Blind Students
> >>
> >> Independent Movement & Travel for Children with Additional Disabilities
> >> Working toward maximum independence and self-determination for the child
> >> with additional disabilities. Instructor: Denise Mackenstadt, NOMC
> >>
> >> Low Vision Toolbox
> >> Useful items for low vision students and how to determine the most
> >> efficient method for the task. Instructor: TBA
> >>
> >> First Steps
> >> Exploration and independent movement and travel in early childhood.
> >> Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
> >>
> >> Accessible Technology
> >> Using accessible technology for meaningful participation in school, at
> >> home, and in the community. Instructor: Eric Guillory, Director, Youth
> >> Services, LA Center for the Blind
> >>
> >> Independence Skills at Home & in the Community
> >> Teaching and supporting the development of independence skills for full
> >> participation in home and community life. Instructor: Mary Jo Hartle,
> >> NOMC,
> >> TBS
> >>
> >> 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
> >>
> >> Independent Movement & Travel for the School-Age Student
> >> High expectations, real-life goals, and how to achieve them in the area
> >> of
> >> independent movement and travel. Instructor: TBA
> >>
> >> Tactile Graphics?The Good, the Bad, & the Ugly
> >> The basics of creating a good tactile graphic that will really work for
> >> the
> >> blind child. Instructor: Carol Castellano, Director of Programs, NOPBC
> >>
> >> I Get Around
> >> Getting around independently when you do not drive. Instructors: Pam
> >> Allen,
> >> Director, LA Center for the Blind; Roland Allen, NOMC
> >>
> >> Low Vision Technology
> >> >From low tech to high tech, learn about the many options for the low
> >> vision
> >> student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
> >>
> >> Saying It My Way
> >> Encouraging communication, learning, and play in children with
> >> communication needs. Instructor: Natalie Shaheen, Director of Education,
> >> NFB Jernigan Institute
> >>
> >> Social Skills for the School-Age Child
> >> Encouraging appropriate social interaction and play. Instructor: Sheena
> >> Manuel, Outreach Specialist, Professional Development and Research
> >> Institute on Blindness
> >>
> >> How to Set Up a Saturday School
> >> Empowering families to learn and teach the skills of independence.
> >> Instructor: Jackie Anderson, Teacher of Blind Students
> >>
> >> College Checklist: Is Your Blind Child Ready? Are YOU Ready?
> >> Preparing for heading off to college?what parents and students need to
> >> know, with a special visit from one of "the roommates from hell."
> >> Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh
> >> Joiner,
> >> Student; Arielle Silverman, Fellow, University of WA; Debbie Kent Stein,
> >> Editor, Future Reflections
> >>
> >> Unified English Braille (UEB)
> >> It's new. It's coming. What is it, how will the transition be made, and
> >> what will it mean to your child? Instructor: Casey Robertson, Teacher of
> >> Blind Students
> >>
> >> IEP Basics for Parents of Blind/VI Students
> >> The sections of the IEP, essential assessments, how assessment
> >> information
> >> is used, how to be an active and effective participant. Instructor:
> >> Carlton
> >> Walker, Attorney, Teacher of Blind Students
> >>
> >> IEP Development and Legal Process Overview
> >> Do's & Don'ts for the IEP meeting; preparing for possible mediation, due
> >> process, appeal, etc; overview of the legal process; how to prepare for
> a
> >> due process hearing so you don't have to have one! Instructor: Carlton
> >> Walker, Attorney, Teacher of Blind Students
> >>
> >>
> >> Spanish Language Session
> >> This session will cover a range of subjects of interest to parents of
> >> blind
> >> children. Instructor: Conchita Hernandez, Special Educator
> >>
> >>
> >> On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
> >> blindkid at nfbnet.org> 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?
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> > blindkid:
> >> >
> >> >
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> >> >
> >>
> >>
> >> ------------------------------
> >>
> >> Message: 4
> >> Date: Wed, 9 Jul 2014 16:26:43 -0700
> >> From: "Robert Jaquiss" <rjaquiss at earthlink.net>
> >> To: "'Penny Duffy'" <pennyduffy at gmail.com>, "'Blind Kid Mailing List,
> >>         \(for parents of blind children\)'" <blindkid at nfbnet.org>,
> >>  "'Lalena
> >>         Fayre'" <lalenas at gmail.com>
> >> Subject: Re: [blindkid] More than just blindness
> >> Message-ID: <000201cf9bcd$3f19cc50$bd4d64f0$@earthlink.net>
> >> Content-Type: text/plain;       charset="UTF-8"
> >>
> >> Hello:
> >>
> >>      I thought I would pass on this link for the Active Learning
> >> Foundation in case it is useful:
> >> http://www.lilliworks.org/
> >> The Active Learning Foundation (ALF) promotes the work of Dr. Lilli
> >> Nielsen. Four of her books are available from BookShare. The materials
> >> developed by Dr. Nielsen are specifically intended for use with
> >> multihandicapped blind children.
> >>
> >>      Some years ago, I knew a lady who made tactile versions of Bliss
> >> Symbolics. The system allows a person to communicate their wants or
> needs
> >> by selecting a "symbol" from a board. The symbols consist of ovals,
> >> circles, squares, hearts etc. Each of the shapes is movified by gluing
> >> something to the surface. There are for instance shapes for requesting
> >> people. Each shape has something on it to indicate the particular person
> >> of
> >> interest.
> >>
> >>      There is also intelitools which can be produced using tactile
> >> overlays. Hope this is useful.
> >>
> >> Regards,
> >>
> >> Robert
> >>
> >> Robert Jaquiss
> >> Tactile Graphics Solutions LLC.
> >> Email: rjaquiss at earthlink.net
> >> *** Specializing in computerized production of tactile graphics, ALT
> >> development, technology assessments, product evaluations and web site
> >> certification. ***
> >>
> >>
> >>
> >>
> >> ------------------------------
> >>
> >> Message: 5
> >> Date: Wed, 09 Jul 2014 19:39:40 -0400
> >> From: Bernadette Jacobs <bernienfb75 at gmail.com>
> >> To: Penny Duffy <pennyduffy at gmail.com>, "Blind Kid Mailing List,
> >>  \(for
> >>         parents of blind children\)" <blindkid at nfbnet.org>
> >> Subject: Re: [blindkid] More than just blindness
> >> Message-ID: <53BDD2BC.9080502 at gmail.com>
> >> Content-Type: text/plain; charset=UTF-8; format=flowed
> >>
> >> God Bless you Penny.  Ya just don't get it do ya Darling?  All the books
> >> in the world and all the human instruction can be a wonderful thing?
> >> But Honey, I ask you.  What about these kids who actually exist?  When
> >> we bring our children with these multiple handicaps/issues along with us
> >> because they're actually part of our families, The activities and
> >> childcare that are provided for the families is Okay for the typical
> >> children.  But what about these children with other issues are left to
> >> fall through the cracks? But, that's Okay?  Hmmm.
> >>
> >> As for Natalie, I can't think of a dearer lady.  I have the utmost
> >> respect for her experteese and advice.  I feel it such an honor and
> >> privilege to know her and call her a very dear friend to me and my
> >> husband.  She's spent time with David and has struck up a nice little
> >> friendship with David.  She is one very caring lady and she's one of the
> >> hardest, profficient people I know.  As for Carlton Walker, she's
> >> another very bright, dear lady.  Her daughter and our daughter have also
> >> struck up a good friendship.  But, as Barbara has said, where David is
> >> concerned, David appears to scare the tar out of the rest of the world.
> >> That's putting it nicely.  But this, does at times, forces me to
> >> consider when and where we go as a family and sometimes, I do stay back
> >> and let Bill take Virginia.  For, sometimes, I just don't think my heart
> >> can stand anymore hurt.  Some days I can let it roll off.  But there are
> >> others, I simply can't. After all, I might actually be human and have
> >> feelings too?  And they're not in a book or in some training???
> >>
> >> Bernie
> >> On 7/9/2014 2:48 PM, Penny Duffy via blindkid wrote:
> >> > Lelena,
> >> >
> >> > I read through what you said. If i missed anything please let me know.
> >> >   Many of the parents i assist in my state experiance more than one
> >> > disability not just blindness.  I believe strongly that these children
> >> > heavily discriminated against in educational settings.  Very few
> >> educators
> >> > feel a child with more than one disability including blindness should
> >> > be
> >> > taught braille at all which is extremely wrong considering they would
> >> never
> >> > say the same thing about  a child with non blindness related
> >> disabilities.
> >> >   Its an understanding that literacy is important to all.
> >> >
> >> > The NOPBC always works hard at trying to build program that will
> >> > benefit
> >> > all kinds of different kids and different learners. I hope you never
> >> > feel
> >> > we are are not trying to serve your needs.
> >> >
> >> > Below is the NOPBC works shops from this years conference.  there was
> >> > two
> >> > workshops which were geared directly for parents of children with
> >> multiple
> >> > disabilities.   I would challenge that ALL the rest of the workshops
> >> would
> >> > benefit parents with children with multiple disabilities. also.
> >> > including
> >> > the college one.  The NOPBC programming is primarily our parent
> >> conference
> >> > and we sponsor Future Reflections which regularly  feature stores
> about
> >> all
> >> > kids of different kids.
> >> >
> >> >   Also if you are talking about NFB direct programming like the great
> >> STEM
> >> > programs I am sure Natalie Shaheen, Director of Education at the NFB
> >> > Jernigan Institute would love to hear some ideas.  I happen to know
> >> > this
> >> > area is VERY important to her.
> >> > Let me know if I can be have anymore help.  I am very passionate in
> >> > this
> >> > area.
> >> > -Penny Duffy
> >> >
> >> > --
> >> >
> >> > Independence in the Classroom
> >> > Tools, tips, and techniques for setting up the classroom and training
> >> > the
> >> > student for independent functioning. Instructor: Jackie Anderson,
> >> > Teacher
> >> > of Blind Students
> >> >
> >> > Independent Movement & Travel for Children with Additional
> Disabilities
> >> > Working toward maximum independence and self-determination for the
> >> > child
> >> > with additional disabilities. Instructor: Denise Mackenstadt, NOMC
> >> >
> >> > Low Vision Toolbox
> >> > Useful items for low vision students and how to determine the most
> >> > efficient method for the task. Instructor: TBA
> >> >
> >> > First Steps
> >> > Exploration and independent movement and travel in early childhood.
> >> > Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
> >> >
> >> > Accessible Technology
> >> > Using accessible technology for meaningful participation in school, at
> >> > home, and in the community. Instructor: Eric Guillory, Director, Youth
> >> > Services, LA Center for the Blind
> >> >
> >> > Independence Skills at Home & in the Community
> >> > Teaching and supporting the development of independence skills for
> full
> >> > participation in home and community life. Instructor: Mary Jo Hartle,
> >> NOMC,
> >> > TBS
> >> >
> >> > 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
> >> >
> >> > Independent Movement & Travel for the School-Age Student
> >> > High expectations, real-life goals, and how to achieve them in the
> area
> >> of
> >> > independent movement and travel. Instructor: TBA
> >> >
> >> > Tactile Graphics?The Good, the Bad, & the Ugly
> >> > The basics of creating a good tactile graphic that will really work
> for
> >> the
> >> > blind child. Instructor: Carol Castellano, Director of Programs, NOPBC
> >> >
> >> > I Get Around
> >> > Getting around independently when you do not drive. Instructors: Pam
> >> Allen,
> >> > Director, LA Center for the Blind; Roland Allen, NOMC
> >> >
> >> > Low Vision Technology
> >> >  From low tech to high tech, learn about the many options for the low
> >> vision
> >> > student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
> >> >
> >> > Saying It My Way
> >> > Encouraging communication, learning, and play in children with
> >> > communication needs. Instructor: Natalie Shaheen, Director of
> >> > Education,
> >> > NFB Jernigan Institute
> >> >
> >> > Social Skills for the School-Age Child
> >> > Encouraging appropriate social interaction and play. Instructor:
> Sheena
> >> > Manuel, Outreach Specialist, Professional Development and Research
> >> > Institute on Blindness
> >> >
> >> > How to Set Up a Saturday School
> >> > Empowering families to learn and teach the skills of independence.
> >> > Instructor: Jackie Anderson, Teacher of Blind Students
> >> >
> >> > College Checklist: Is Your Blind Child Ready? Are YOU Ready?
> >> > Preparing for heading off to college?what parents and students need to
> >> > know, with a special visit from one of "the roommates from hell."
> >> > Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh
> >> Joiner,
> >> > Student; Arielle Silverman, Fellow, University of WA; Debbie Kent
> >> > Stein,
> >> > Editor, Future Reflections
> >> >
> >> > Unified English Braille (UEB)
> >> > It's new. It's coming. What is it, how will the transition be made,
> and
> >> > what will it mean to your child? Instructor: Casey Robertson, Teacher
> >> > of
> >> > Blind Students
> >> >
> >> > IEP Basics for Parents of Blind/VI Students
> >> > The sections of the IEP, essential assessments, how assessment
> >> information
> >> > is used, how to be an active and effective participant. Instructor:
> >> Carlton
> >> > Walker, Attorney, Teacher of Blind Students
> >> >
> >> > IEP Development and Legal Process Overview
> >> > Do's & Don'ts for the IEP meeting; preparing for possible mediation,
> >> > due
> >> > process, appeal, etc; overview of the legal process; how to prepare
> for
> >> >
> >> > a
> >> > due process hearing so you don't have to have one! Instructor: Carlton
> >> > Walker, Attorney, Teacher of Blind Students
> >> >
> >> >
> >> > Spanish Language Session
> >> > This session will cover a range of subjects of interest to parents of
> >> blind
> >> > children. Instructor: Conchita Hernandez, Special Educator
> >> >
> >> >
> >> > On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
> >> > blindkid at nfbnet.org> 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?
> >> >> _______________________________________________
> >> >> blindkid mailing list
> >> >> blindkid at nfbnet.org
> >> >> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> >> To unsubscribe, change your list options or get your account info for
> >> >> blindkid:
> >> >>
> >> >>
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> >> >>
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> blindkid:
> >> >
> >>
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> >>
> >>
> >>
> >>
> >> ------------------------------
> >>
> >> Message: 6
> >> Date: Wed, 9 Jul 2014 18:53:55 -0500
> >> From: Barbara HAMMEL <poetlori8 at msn.com>
> >> To: Bernadette Jacobs <bernienfb75 at gmail.com>, "Blind Kid Mailing
> >>         List, (for      parents of blind children)" <
> blindkid at nfbnet.org>
> >> Subject: Re: [blindkid] More than just blindness
> >> Message-ID: <SNT407-EAS162535AB58E67A24690ABECEB0F0 at phx.gbl>
> >> Content-Type: text/plain; charset="utf-8"
> >>
> >> I have a thought and wonder who to present it to. I'd even be willing to
> >> be a worker full-time. My thought is, could we have a room in child-care
> >> just for the Pauls, Jesses and Davids of the world? A room where the
> >> parents don't have to worry about how many toys will be eaten or chairs
> >> tipped over. A room where spinning in circles or rocking on your head
> all
> >> day is okay. Aroom where a tantrum isn't going to clear the room and
> >> leave
> >> the rest of the kids crying. A room where no activities really need to
> be
> >> planned because the kids won't want to do them any way.
> >> Barbara
> >>
> >> Sent from my iPhone
> >>
> >> > On Jul 9, 2014, at 6:40 PM, "Bernadette Jacobs via blindkid" <
> >> blindkid at nfbnet.org> wrote:
> >> >
> >> > God Bless you Penny.  Ya just don't get it do ya Darling?  All the
> >> > books
> >> in the world and all the human instruction can be a wonderful thing?
>  But
> >> Honey, I ask you.  What about these kids who actually exist?  When we
> >> bring
> >> our children with these multiple handicaps/issues along with us because
> >> they're actually part of our families, The activities and childcare that
> >> are provided for the families is Okay for the typical children.  But
> what
> >> about these children with other issues are left to fall through the
> >> cracks?
> >> But, that's Okay?  Hmmm.
> >> >
> >> > As for Natalie, I can't think of a dearer lady.  I have the utmost
> >> respect for her experteese and advice.  I feel it such an honor and
> >> privilege to know her and call her a very dear friend to me and my
> >> husband.
> >>  She's spent time with David and has struck up a nice little friendship
> >> with David.  She is one very caring lady and she's one of the hardest,
> >> profficient people I know.  As for Carlton Walker, she's another very
> >> bright, dear lady.  Her daughter and our daughter have also struck up a
> >> good friendship.  But, as Barbara has said, where David is concerned,
> >> David
> >> appears to scare the tar out of the rest of the world.  That's putting
> it
> >> nicely.  But this, does at times, forces me to consider when and where
> we
> >> go as a family and sometimes, I do stay back and let Bill take Virginia.
> >>  For, sometimes, I just don't think my heart can stand anymore hurt.
> >> Some
> >> days I can let it roll off.  But there are others, I simply can't. After
> >> all, I might actually be human and have feelings too?  And they're not
> in
> >>
> >> a
> >> book or in some training???
> >> >
> >> > Bernie
> >> >> On 7/9/2014 2:48 PM, Penny Duffy via blindkid wrote:
> >> >> Lelena,
> >> >>
> >> >> I read through what you said. If i missed anything please let me
> know.
> >> >>  Many of the parents i assist in my state experiance more than one
> >> >> disability not just blindness.  I believe strongly that these
> children
> >> >> heavily discriminated against in educational settings.  Very few
> >> educators
> >> >> feel a child with more than one disability including blindness should
> >> >> be
> >> >> taught braille at all which is extremely wrong considering they would
> >> never
> >> >> say the same thing about  a child with non blindness related
> >> disabilities.
> >> >>  Its an understanding that literacy is important to all.
> >> >>
> >> >> The NOPBC always works hard at trying to build program that will
> >> >> benefit
> >> >> all kinds of different kids and different learners. I hope you never
> >> feel
> >> >> we are are not trying to serve your needs.
> >> >>
> >> >> Below is the NOPBC works shops from this years conference.  there was
> >> two
> >> >> workshops which were geared directly for parents of children with
> >> multiple
> >> >> disabilities.   I would challenge that ALL the rest of the workshops
> >> would
> >> >> benefit parents with children with multiple disabilities. also.
> >> including
> >> >> the college one.  The NOPBC programming is primarily our parent
> >> conference
> >> >> and we sponsor Future Reflections which regularly  feature stores
> >> >> about
> >> all
> >> >> kids of different kids.
> >> >>
> >> >>  Also if you are talking about NFB direct programming like the great
> >> STEM
> >> >> programs I am sure Natalie Shaheen, Director of Education at the NFB
> >> >> Jernigan Institute would love to hear some ideas.  I happen to know
> >> >> this
> >> >> area is VERY important to her.
> >> >> Let me know if I can be have anymore help.  I am very passionate in
> >> >> this
> >> >> area.
> >> >> -Penny Duffy
> >> >>
> >> >> --
> >> >>
> >> >> Independence in the Classroom
> >> >> Tools, tips, and techniques for setting up the classroom and training
> >> the
> >> >> student for independent functioning. Instructor: Jackie Anderson,
> >> Teacher
> >> >> of Blind Students
> >> >>
> >> >> Independent Movement & Travel for Children with Additional
> >> >> Disabilities
> >> >> Working toward maximum independence and self-determination for the
> >> >> child
> >> >> with additional disabilities. Instructor: Denise Mackenstadt, NOMC
> >> >>
> >> >> Low Vision Toolbox
> >> >> Useful items for low vision students and how to determine the most
> >> >> efficient method for the task. Instructor: TBA
> >> >>
> >> >> First Steps
> >> >> Exploration and independent movement and travel in early childhood.
> >> >> Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
> >> >>
> >> >> Accessible Technology
> >> >> Using accessible technology for meaningful participation in school,
> at
> >> >> home, and in the community. Instructor: Eric Guillory, Director,
> Youth
> >> >> Services, LA Center for the Blind
> >> >>
> >> >> Independence Skills at Home & in the Community
> >> >> Teaching and supporting the development of independence skills for
> >> >> full
> >> >> participation in home and community life. Instructor: Mary Jo Hartle,
> >> NOMC,
> >> >> TBS
> >> >>
> >> >> 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
> >> >>
> >> >> Independent Movement & Travel for the School-Age Student
> >> >> High expectations, real-life goals, and how to achieve them in the
> >> >> area
> >> of
> >> >> independent movement and travel. Instructor: TBA
> >> >>
> >> >> Tactile Graphics?The Good, the Bad, & the Ugly
> >> >> The basics of creating a good tactile graphic that will really work
> >> >> for
> >> the
> >> >> blind child. Instructor: Carol Castellano, Director of Programs,
> NOPBC
> >> >>
> >> >> I Get Around
> >> >> Getting around independently when you do not drive. Instructors: Pam
> >> Allen,
> >> >> Director, LA Center for the Blind; Roland Allen, NOMC
> >> >>
> >> >> Low Vision Technology
> >> >> From low tech to high tech, learn about the many options for the low
> >> vision
> >> >> student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
> >> >>
> >> >> Saying It My Way
> >> >> Encouraging communication, learning, and play in children with
> >> >> communication needs. Instructor: Natalie Shaheen, Director of
> >> >> Education,
> >> >> NFB Jernigan Institute
> >> >>
> >> >> Social Skills for the School-Age Child
> >> >> Encouraging appropriate social interaction and play. Instructor:
> >> >> Sheena
> >> >> Manuel, Outreach Specialist, Professional Development and Research
> >> >> Institute on Blindness
> >> >>
> >> >> How to Set Up a Saturday School
> >> >> Empowering families to learn and teach the skills of independence.
> >> >> Instructor: Jackie Anderson, Teacher of Blind Students
> >> >>
> >> >> College Checklist: Is Your Blind Child Ready? Are YOU Ready?
> >> >> Preparing for heading off to college?what parents and students need
> to
> >> >> know, with a special visit from one of "the roommates from hell."
> >> >> Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh
> >> Joiner,
> >> >> Student; Arielle Silverman, Fellow, University of WA; Debbie Kent
> >> >> Stein,
> >> >> Editor, Future Reflections
> >> >>
> >> >> Unified English Braille (UEB)
> >> >> It's new. It's coming. What is it, how will the transition be made,
> >> >> and
> >> >> what will it mean to your child? Instructor: Casey Robertson, Teacher
> >> >> of
> >> >> Blind Students
> >> >>
> >> >> IEP Basics for Parents of Blind/VI Students
> >> >> The sections of the IEP, essential assessments, how assessment
> >> information
> >> >> is used, how to be an active and effective participant. Instructor:
> >> Carlton
> >> >> Walker, Attorney, Teacher of Blind Students
> >> >>
> >> >> IEP Development and Legal Process Overview
> >> >> Do's & Don'ts for the IEP meeting; preparing for possible mediation,
> >> >> due
> >> >> process, appeal, etc; overview of the legal process; how to prepare
> >> >> for
> >> a
> >> >> due process hearing so you don't have to have one! Instructor:
> Carlton
> >> >> Walker, Attorney, Teacher of Blind Students
> >> >>
> >> >>
> >> >> Spanish Language Session
> >> >> This session will cover a range of subjects of interest to parents of
> >> blind
> >> >> children. Instructor: Conchita Hernandez, Special Educator
> >> >>
> >> >>
> >> >> On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
> >> >> blindkid at nfbnet.org> 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?
> >> >>> _______________________________________________
> >> >>> blindkid mailing list
> >> >>> blindkid at nfbnet.org
> >> >>> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> >>> To unsubscribe, change your list options or get your account info
> for
> >> >>> blindkid:
> >> >>>
> >> >>>
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> >> >> _______________________________________________
> >> >> blindkid mailing list
> >> >> blindkid at nfbnet.org
> >> >> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> >> To unsubscribe, change your list options or get your account info for
> >> blindkid:
> >> >>
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> >> >
> >> >
> >> > _______________________________________________
> >> > blindkid mailing list
> >> > blindkid at nfbnet.org
> >> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >> > To unsubscribe, change your list options or get your account info for
> >> blindkid:
> >> >
> >>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/poetlori8%40msn.com
> >>
> >> ------------------------------
> >>
> >> Subject: Digest Footer
> >>
> >> _______________________________________________
> >> blindkid mailing list
> >> blindkid at nfbnet.org
> >> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >>
> >>
> >> ------------------------------
> >>
> >> End of blindkid Digest, Vol 123, Issue 9
> >> ****************************************
> >>
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
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> >
> >
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
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> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
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> >
>
>
>
> ------------------------------
>
> Message: 3
> Date: Sun, 13 Jul 2014 15:51:11 -0700
> From: Lalena Fayre <lalenas at gmail.com>
> To: Ashley Bramlett <bookwormahb at earthlink.net>
> Cc: "Blind Kid Mailing List,    \(for parents of blind children\)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> Message-ID:
>         <CAH4h=
> tY3n9te8qcmbMhT32K0s--iAOXag6iyuS3wwXyoWTNMpg at mail.gmail.com>
> Content-Type: text/plain; charset=UTF-8
>
> 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.
> >
> >
>
>
> ------------------------------
>
> Message: 4
> Date: Sun, 13 Jul 2014 20:08:16 -0400
> From: Marianne Denning <marianne at denningweb.com>
> To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,  (for
>         parents of blind children)" <blindkid at nfbnet.org>
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> Message-ID:
>         <CANZu-JguTg_+uy0-KCPPwJhUTVO2UT=
> v3t2PhrYuPw1+3trD4Q at mail.gmail.com>
> Content-Type: text/plain; charset=UTF-8
>
> I agree with this statement.  Organizations that work with people who
> are blind don't understand people with other disabilities and
> organizations that work with people with another disability don't
> understand people who are blind.  It is a real struggle.  In
> Cincinnati we had an organization called Clovernook that said their
> mission was to work with people who are blind with additional
> disabilities but a few years ago they changed their mission.  It was
> very sad to me because people who are deaf or blind are treated very
> differently than those who are not.  It is like people can't think how
> to teach something in a different way.
>
> On 7/13/14, 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.
> >>
> >>
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/marianne%40denningweb.com
> >
>
>
> --
> Marianne Denning, TVI, MA
> Teacher of students who are blind or visually impaired
> (513) 607-6053
>
>
>
> ------------------------------
>
> Message: 5
> Date: Sun, 13 Jul 2014 19:44:04 -0600
> From: "melissa R Green" <lissa1531 at gmail.com>
> To: "Ashley Bramlett" <bookwormahb at earthlink.net>, "Blind Kid Mailing
>         List,   \(for parents of blind children\)" <blindkid at nfbnet.org>
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> Message-ID: <0CD1AF85A096476094DD1A637D69BCB2 at HP30910210001>
> Content-Type: text/plain;       charset="iso-8859-1"
>
> ashley.
> thank you for sharing your feelings.  I think that the bright stars are
> what
> we hear about.  this is due to the fact that many of the "bright stars" put
> themselves in the forefront of everything.  I was not a student and I was
> involved in the student devision.  Also my mom was invited to join the
> parent things and she chose not to join.  She said that in many cases it
> was
> either my child his super blind person/student, or my child is so low
> functioning or would never do anything like go to college or even get a
> job.
> there wasn't any middle ground.  And many times the nfb is like this as
> well.  that is why I got involved and am still involved with the nfb.
> Melissa R Green and Pj
> Failure is not fatal, but failure to change might be
>
>
>
> ----- Original Message -----
> From: "Ashley Bramlett via blindkid" <blindkid at nfbnet.org>
> To: "Lalena Fayre" <lalenas at gmail.com>; "Blind Kid Mailing List,(for
> parents
> of blind children)" <blindkid at nfbnet.org>
> Sent: Saturday, July 12, 2014 11:44 PM
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
>
>
> 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.
>
>
> On Thu, Jul 10, 2014 at 5:00 AM, <blindkid-request at nfbnet.org> wrote:
>
> > Send blindkid mailing list submissions to
> >         blindkid at nfbnet.org
> >
> > To subscribe or unsubscribe via the World Wide Web, visit
> >         http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > or, via email, send a message with subject or body 'help' to
> >         blindkid-request at nfbnet.org
> >
> > You can reach the person managing the list at
> >         blindkid-owner at nfbnet.org
> >
> > When replying, please edit your Subject line so it is more specific
> > than "Re: Contents of blindkid digest..."
> >
> >
> > Today's Topics:
> >
> >    1. Re: More than just blindness (Bernadette Jacobs)
> >    2. Re: More than just blindness (Barbara Hammel)
> >    3. Re: More than just blindness (Penny Duffy)
> >    4. Re: More than just blindness (Robert Jaquiss)
> >    5. Re: More than just blindness (Bernadette Jacobs)
> >    6. Re: More than just blindness (Barbara HAMMEL)
> >
> >
> > ----------------------------------------------------------------------
> >
> > Message: 1
> > Date: Wed, 09 Jul 2014 09:46:04 -0400
> > From: Bernadette Jacobs <bernienfb75 at gmail.com>
> > To: Ashley Bramlett <bookwormahb at earthlink.net>, "Blind Kid Mailing
> >         List,   \(for parents of blind children\)" <blindkid at nfbnet.org>
> > Subject: Re: [blindkid] More than just blindness
> > Message-ID: <53BD479C.4080904 at gmail.com>
> > Content-Type: text/plain; charset=ISO-8859-1; format=flowed
> >
> > Dear Blind Parent!!!
> >
> > I have no idea who you are.  But if only you knew how I feel your
> > pain!!!  I feel your pain to the very depth of my very soul!!! Can't
> > very well keep myself a secret though.  Everyone here who knows me is
> > going to know who's the culprit for these words here, so I might just as
> > well let it all out now!!
> >
> > My husband and I, too, have a blind, autistic, non-verbal son with
> > multiple delays whom we adopted from China.  We also have an
> > eleven-year-old daughter who was adopted from Thailand.  Seeing this
> > post, I simply can't hold back any longer. The world waits in line for
> > whenever it's their turn to take our daughter for an an afternoon, day,
> > weekend, week, or whatever.  Yet, when we bring both our children
> > somewhere, she's welcome with open arms.  As for our son, nobody ever
> > breathes a word.  But, the implication speaks louder than words ever
> > will.  I can pick out the people, in fact. "Too bad we can't find some
> > place for the family dog..."  Believe me, Darling.  Nobody knows your
> > pain better than my husband and I. It's never what they say, because
> > they try as hard as they might to be discrete.  Believe me!!  It's what
> > they don't say Darling!! Hurts your heart.  Huh???  I don't wish this
> > hurt on my worst enemy Darling!!  Believe me, I don't!!  Between a group
> > of us, we "thought" we had everything sewed up with a very competent
> > caregiver who, I'm sure, tried to lovingly care for our son and there
> > was an episode which took place at our state convention and when my
> > husband and I both inquired, people in charge, refused to give us any
> > information.  I didn't feel I was out of place trying to find out what
> > happened.  After all, I'm only his mother???  When I inquired the day
> > after state convention was over, there was only a lame effort to sweep
> > it under the rug with a "TEXT."  This upset me even worse.  From that
> > moment on, I spent the rest of the day writing a letter which I have in
> > the bowels of my computer which I never yet sent out.  Yes, it's a
> > resignation letter from our state NOPC board.  I never sent it out yet.
> > But, might as well now.
> >
> > I have another very, very good friend who keeps telling me she'll never
> > come to any activities because she's so afraid of the very same things
> > we've encountered here.  She keeps telling me, "I just don't know how
> > you do it...  I couldn't bear that hurt in my heart for my son.  I
> > couldn't stand my heart being crushed like that.  How do you do it???"
> > Truth is, Darling, there some days I truly do feel absolutely crushed.
> > Yes, my only cleansing is to cry.  Believe me!!  Because if anyone wants
> > to participate and  be in the middle of activity it's him.  If only you
> > could see him jump up and down with that huge round grin across that
> > little round face and hear that infectious belly-laugh!!  Squealing,
> > laughing, jumping up and down?  The whole scenario is absolutely
> > infectiously unforgetable!! What a perfect picture!!  Guess ya have to
> > be there to get it.  But believe me.  It's there.  We have one friend
> > who sat next to him, the last morning of our state convention and he
> > spent almost the entire time kissing her hands because he knows how much
> > she just loves him.  And he loves her that much and more.  It was
> > absolutely priceless.
> >
> > Whoever you are, you're most welcome to write me "offlist" and we can
> > engage in further dialog.  It just warms my heart to know that my
> > husband and I are not alone.  If only you knew!!
> >
> > Bernie
> > On 7/7/2014 2:07 AM, Ashley Bramlett via blindkid wrote:
> > > Lalena,
> > > I've been lurking a little while and will intro myself soon after most
> > > of the list get back from convention.
> > > I'm actually the child; grown now and career exploring, and my parents
> > > are sighted.
> > >
> > >
> > > I agree with you. There are not enough resources for addressing the
> > > needs of multiple disabled kids and yes the NFB focusses on bright
> > > normal developing kids. But many blind kids have multiple disabilities.
> > >
> > > You raise some concerns which I'm sure others deal with. So your kid
> > > is completely blind? like no vision even of close up objects?
> > > How far delayed is he? how old? Where do you live? is bay area ca?
> > >
> > > What are the issues with braille reading? Perhaps with more info
> > > someone may be able to help.
> > >
> > > I've seen those communication devices with pictures. Will he ever
> > > speak with intervention, or is this permanent?
> > > Does your TVI not have ideas? I mean, surely she or he has encountered
> > > nonverbal blind kids before.
> > > Maybe he can hold up objects to communicate to start with. For
> > > instance, toy food can mean hungry and a common bathroom object like a
> > > towel can mean needs to go to the bathroom.
> > >
> > > I'll also write off list with some more thoughts.
> > >
> > > Ashley
> > > -----Original Message----- From: Lalena Fayre via blindkid
> > > Sent: Monday, June 30, 2014 10:19 AM
> > > To: blindkid at nfbnet.org
> > > Subject: [blindkid] More than just blindness
> > >
> > > 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?
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bookwormahb%40earthlink.net
> > >
> > >
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> > >
> >
> >
> >
> >
> > ------------------------------
> >
> > Message: 2
> > Date: Wed, 9 Jul 2014 09:01:48 -0500
> > From: "Barbara Hammel" <poetlori8 at msn.com>
> > To: "Bernadette Jacobs" <bernienfb75 at gmail.com>, "Blind Kid Mailing
> >         List,   \(for parents of blind children\)" <blindkid at nfbnet.org>
> > Subject: Re: [blindkid] More than just blindness
> > Message-ID: <SNT148-DS7B33297FE31F99A4FF55BEB0F0 at phx.gbl>
> > Content-Type: text/plain; format=flowed; charset="iso-8859-1";
> >         reply-type=response
> >
> > Bernie, you make me want to cry.  You have aptly worded the same feelings
> > I
> > have.  Imagine the only time you feel like a "normal" parent is when your
> > kids are the only ones in the hotel pool and you and your husband are in
> > the
> > hot tub watching them jump around and spin around and laugh with no one
> > there to ignore them or goo on the sympathy.  Everyone is afraid of your
> > child(ren) like they are monsters or something.
> > Barbara
> >
> >
> >
> >
> > Writing free verse is like playing tennis with the net down.--Robert
> Frost
> > -----Original Message-----
> > From: Bernadette Jacobs via blindkid
> > Sent: Wednesday, July 09, 2014 8:46 AM
> > To: Ashley Bramlett ; Blind Kid Mailing List,(for parents of blind
> > children)
> > Subject: Re: [blindkid] More than just blindness
> >
> > Dear Blind Parent!!!
> >
> > I have no idea who you are.  But if only you knew how I feel your
> > pain!!!  I feel your pain to the very depth of my very soul!!! Can't
> > very well keep myself a secret though.  Everyone here who knows me is
> > going to know who's the culprit for these words here, so I might just as
> > well let it all out now!!
> >
> > My husband and I, too, have a blind, autistic, non-verbal son with
> > multiple delays whom we adopted from China.  We also have an
> > eleven-year-old daughter who was adopted from Thailand.  Seeing this
> > post, I simply can't hold back any longer. The world waits in line for
> > whenever it's their turn to take our daughter for an an afternoon, day,
> > weekend, week, or whatever.  Yet, when we bring both our children
> > somewhere, she's welcome with open arms.  As for our son, nobody ever
> > breathes a word.  But, the implication speaks louder than words ever
> > will.  I can pick out the people, in fact. "Too bad we can't find some
> > place for the family dog..."  Believe me, Darling.  Nobody knows your
> > pain better than my husband and I. It's never what they say, because
> > they try as hard as they might to be discrete.  Believe me!!  It's what
> > they don't say Darling!! Hurts your heart.  Huh???  I don't wish this
> > hurt on my worst enemy Darling!!  Believe me, I don't!!  Between a group
> > of us, we "thought" we had everything sewed up with a very competent
> > caregiver who, I'm sure, tried to lovingly care for our son and there
> > was an episode which took place at our state convention and when my
> > husband and I both inquired, people in charge, refused to give us any
> > information.  I didn't feel I was out of place trying to find out what
> > happened.  After all, I'm only his mother???  When I inquired the day
> > after state convention was over, there was only a lame effort to sweep
> > it under the rug with a "TEXT."  This upset me even worse.  From that
> > moment on, I spent the rest of the day writing a letter which I have in
> > the bowels of my computer which I never yet sent out.  Yes, it's a
> > resignation letter from our state NOPC board.  I never sent it out yet.
> > But, might as well now.
> >
> > I have another very, very good friend who keeps telling me she'll never
> > come to any activities because she's so afraid of the very same things
> > we've encountered here.  She keeps telling me, "I just don't know how
> > you do it...  I couldn't bear that hurt in my heart for my son.  I
> > couldn't stand my heart being crushed like that.  How do you do it???"
> > Truth is, Darling, there some days I truly do feel absolutely crushed.
> > Yes, my only cleansing is to cry.  Believe me!!  Because if anyone wants
> > to participate and  be in the middle of activity it's him.  If only you
> > could see him jump up and down with that huge round grin across that
> > little round face and hear that infectious belly-laugh!!  Squealing,
> > laughing, jumping up and down?  The whole scenario is absolutely
> > infectiously unforgetable!! What a perfect picture!!  Guess ya have to
> > be there to get it.  But believe me.  It's there.  We have one friend
> > who sat next to him, the last morning of our state convention and he
> > spent almost the entire time kissing her hands because he knows how much
> > she just loves him.  And he loves her that much and more.  It was
> > absolutely priceless.
> >
> > Whoever you are, you're most welcome to write me "offlist" and we can
> > engage in further dialog.  It just warms my heart to know that my
> > husband and I are not alone.  If only you knew!!
> >
> > Bernie
> > On 7/7/2014 2:07 AM, Ashley Bramlett via blindkid wrote:
> > > Lalena,
> > > I've been lurking a little while and will intro myself soon after most
> > > of
> > > the list get back from convention.
> > > I'm actually the child; grown now and career exploring, and my parents
> > are
> > > sighted.
> > >
> > >
> > > I agree with you. There are not enough resources for addressing the
> > > needs
> > > of multiple disabled kids and yes the NFB focusses on bright normal
> > > developing kids. But many blind kids have multiple disabilities.
> > >
> > > You raise some concerns which I'm sure others deal with. So your kid is
> > > completely blind? like no vision even of close up objects?
> > > How far delayed is he? how old? Where do you live? is bay area ca?
> > >
> > > What are the issues with braille reading? Perhaps with more info
> someone
> > > may be able to help.
> > >
> > > I've seen those communication devices with pictures. Will he ever speak
> > > with intervention, or is this permanent?
> > > Does your TVI not have ideas? I mean, surely she or he has encountered
> > > nonverbal blind kids before.
> > > Maybe he can hold up objects to communicate to start with. For
> instance,
> > > toy food can mean hungry and a common bathroom object like a towel can
> > > mean needs to go to the bathroom.
> > >
> > > I'll also write off list with some more thoughts.
> > >
> > > Ashley
> > > -----Original Message----- From: Lalena Fayre via blindkid
> > > Sent: Monday, June 30, 2014 10:19 AM
> > > To: blindkid at nfbnet.org
> > > Subject: [blindkid] More than just blindness
> > >
> > > 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?
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bookwormahb%40earthlink.net
> > >
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> >
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/poetlori8%40msn.com
> >
> >
> >
> >
> > ------------------------------
> >
> > Message: 3
> > Date: Wed, 9 Jul 2014 14:48:50 -0400
> > From: Penny Duffy <pennyduffy at gmail.com>
> > To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,  (for
> >         parents of blind children)" <blindkid at nfbnet.org>
> > Subject: Re: [blindkid] More than just blindness
> > Message-ID:
> >         <CABb_=
> > QeBK9g5cfasfgb7T5p62p06heqcM5SmnrrJ8+fxgZkBbQ at mail.gmail.com>
> > Content-Type: text/plain; charset=UTF-8
> >
> > Lelena,
> >
> > I read through what you said. If i missed anything please let me know.
> >  Many of the parents i assist in my state experiance more than one
> > disability not just blindness.  I believe strongly that these children
> > heavily discriminated against in educational settings.  Very few
> educators
> > feel a child with more than one disability including blindness should be
> > taught braille at all which is extremely wrong considering they would
> > never
> > say the same thing about  a child with non blindness related
> disabilities.
> >  Its an understanding that literacy is important to all.
> >
> > The NOPBC always works hard at trying to build program that will benefit
> > all kinds of different kids and different learners. I hope you never feel
> > we are are not trying to serve your needs.
> >
> > Below is the NOPBC works shops from this years conference.  there was two
> > workshops which were geared directly for parents of children with
> multiple
> > disabilities.   I would challenge that ALL the rest of the workshops
> would
> > benefit parents with children with multiple disabilities. also. including
> > the college one.  The NOPBC programming is primarily our parent
> conference
> > and we sponsor Future Reflections which regularly  feature stores about
> > all
> > kids of different kids.
> >
> >  Also if you are talking about NFB direct programming like the great STEM
> > programs I am sure Natalie Shaheen, Director of Education at the NFB
> > Jernigan Institute would love to hear some ideas.  I happen to know this
> > area is VERY important to her.
> > Let me know if I can be have anymore help.  I am very passionate in this
> > area.
> > -Penny Duffy
> >
> > --
> >
> > Independence in the Classroom
> > Tools, tips, and techniques for setting up the classroom and training the
> > student for independent functioning. Instructor: Jackie Anderson, Teacher
> > of Blind Students
> >
> > Independent Movement & Travel for Children with Additional Disabilities
> > Working toward maximum independence and self-determination for the child
> > with additional disabilities. Instructor: Denise Mackenstadt, NOMC
> >
> > Low Vision Toolbox
> > Useful items for low vision students and how to determine the most
> > efficient method for the task. Instructor: TBA
> >
> > First Steps
> > Exploration and independent movement and travel in early childhood.
> > Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
> >
> > Accessible Technology
> > Using accessible technology for meaningful participation in school, at
> > home, and in the community. Instructor: Eric Guillory, Director, Youth
> > Services, LA Center for the Blind
> >
> > Independence Skills at Home & in the Community
> > Teaching and supporting the development of independence skills for full
> > participation in home and community life. Instructor: Mary Jo Hartle,
> > NOMC,
> > TBS
> >
> > 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
> >
> > Independent Movement & Travel for the School-Age Student
> > High expectations, real-life goals, and how to achieve them in the area
> of
> > independent movement and travel. Instructor: TBA
> >
> > Tactile Graphics?The Good, the Bad, & the Ugly
> > The basics of creating a good tactile graphic that will really work for
> > the
> > blind child. Instructor: Carol Castellano, Director of Programs, NOPBC
> >
> > I Get Around
> > Getting around independently when you do not drive. Instructors: Pam
> > Allen,
> > Director, LA Center for the Blind; Roland Allen, NOMC
> >
> > Low Vision Technology
> > >From low tech to high tech, learn about the many options for the low
> > vision
> > student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
> >
> > Saying It My Way
> > Encouraging communication, learning, and play in children with
> > communication needs. Instructor: Natalie Shaheen, Director of Education,
> > NFB Jernigan Institute
> >
> > Social Skills for the School-Age Child
> > Encouraging appropriate social interaction and play. Instructor: Sheena
> > Manuel, Outreach Specialist, Professional Development and Research
> > Institute on Blindness
> >
> > How to Set Up a Saturday School
> > Empowering families to learn and teach the skills of independence.
> > Instructor: Jackie Anderson, Teacher of Blind Students
> >
> > College Checklist: Is Your Blind Child Ready? Are YOU Ready?
> > Preparing for heading off to college?what parents and students need to
> > know, with a special visit from one of "the roommates from hell."
> > Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh
> > Joiner,
> > Student; Arielle Silverman, Fellow, University of WA; Debbie Kent Stein,
> > Editor, Future Reflections
> >
> > Unified English Braille (UEB)
> > It's new. It's coming. What is it, how will the transition be made, and
> > what will it mean to your child? Instructor: Casey Robertson, Teacher of
> > Blind Students
> >
> > IEP Basics for Parents of Blind/VI Students
> > The sections of the IEP, essential assessments, how assessment
> information
> > is used, how to be an active and effective participant. Instructor:
> > Carlton
> > Walker, Attorney, Teacher of Blind Students
> >
> > IEP Development and Legal Process Overview
> > Do's & Don'ts for the IEP meeting; preparing for possible mediation, due
> > process, appeal, etc; overview of the legal process; how to prepare for a
> > due process hearing so you don't have to have one! Instructor: Carlton
> > Walker, Attorney, Teacher of Blind Students
> >
> >
> > Spanish Language Session
> > This session will cover a range of subjects of interest to parents of
> > blind
> > children. Instructor: Conchita Hernandez, Special Educator
> >
> >
> > On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
> > blindkid at nfbnet.org> 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?
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > >
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> > >
> >
> >
> > ------------------------------
> >
> > Message: 4
> > Date: Wed, 9 Jul 2014 16:26:43 -0700
> > From: "Robert Jaquiss" <rjaquiss at earthlink.net>
> > To: "'Penny Duffy'" <pennyduffy at gmail.com>, "'Blind Kid Mailing List,
> >         \(for parents of blind children\)'" <blindkid at nfbnet.org>,
> >  "'Lalena
> >         Fayre'" <lalenas at gmail.com>
> > Subject: Re: [blindkid] More than just blindness
> > Message-ID: <000201cf9bcd$3f19cc50$bd4d64f0$@earthlink.net>
> > Content-Type: text/plain;       charset="UTF-8"
> >
> > Hello:
> >
> >      I thought I would pass on this link for the Active Learning
> > Foundation in case it is useful:
> > http://www.lilliworks.org/
> > The Active Learning Foundation (ALF) promotes the work of Dr. Lilli
> > Nielsen. Four of her books are available from BookShare. The materials
> > developed by Dr. Nielsen are specifically intended for use with
> > multihandicapped blind children.
> >
> >      Some years ago, I knew a lady who made tactile versions of Bliss
> > Symbolics. The system allows a person to communicate their wants or needs
> > by selecting a "symbol" from a board. The symbols consist of ovals,
> > circles, squares, hearts etc. Each of the shapes is movified by gluing
> > something to the surface. There are for instance shapes for requesting
> > people. Each shape has something on it to indicate the particular person
> > of
> > interest.
> >
> >      There is also intelitools which can be produced using tactile
> > overlays. Hope this is useful.
> >
> > Regards,
> >
> > Robert
> >
> > Robert Jaquiss
> > Tactile Graphics Solutions LLC.
> > Email: rjaquiss at earthlink.net
> > *** Specializing in computerized production of tactile graphics, ALT
> > development, technology assessments, product evaluations and web site
> > certification. ***
> >
> >
> >
> >
> > ------------------------------
> >
> > Message: 5
> > Date: Wed, 09 Jul 2014 19:39:40 -0400
> > From: Bernadette Jacobs <bernienfb75 at gmail.com>
> > To: Penny Duffy <pennyduffy at gmail.com>, "Blind Kid Mailing List,
> >  \(for
> >         parents of blind children\)" <blindkid at nfbnet.org>
> > Subject: Re: [blindkid] More than just blindness
> > Message-ID: <53BDD2BC.9080502 at gmail.com>
> > Content-Type: text/plain; charset=UTF-8; format=flowed
> >
> > God Bless you Penny.  Ya just don't get it do ya Darling?  All the books
> > in the world and all the human instruction can be a wonderful thing?
> > But Honey, I ask you.  What about these kids who actually exist?  When
> > we bring our children with these multiple handicaps/issues along with us
> > because they're actually part of our families, The activities and
> > childcare that are provided for the families is Okay for the typical
> > children.  But what about these children with other issues are left to
> > fall through the cracks? But, that's Okay?  Hmmm.
> >
> > As for Natalie, I can't think of a dearer lady.  I have the utmost
> > respect for her experteese and advice.  I feel it such an honor and
> > privilege to know her and call her a very dear friend to me and my
> > husband.  She's spent time with David and has struck up a nice little
> > friendship with David.  She is one very caring lady and she's one of the
> > hardest, profficient people I know.  As for Carlton Walker, she's
> > another very bright, dear lady.  Her daughter and our daughter have also
> > struck up a good friendship.  But, as Barbara has said, where David is
> > concerned, David appears to scare the tar out of the rest of the world.
> > That's putting it nicely.  But this, does at times, forces me to
> > consider when and where we go as a family and sometimes, I do stay back
> > and let Bill take Virginia.  For, sometimes, I just don't think my heart
> > can stand anymore hurt.  Some days I can let it roll off.  But there are
> > others, I simply can't. After all, I might actually be human and have
> > feelings too?  And they're not in a book or in some training???
> >
> > Bernie
> > On 7/9/2014 2:48 PM, Penny Duffy via blindkid wrote:
> > > Lelena,
> > >
> > > I read through what you said. If i missed anything please let me know.
> > >   Many of the parents i assist in my state experiance more than one
> > > disability not just blindness.  I believe strongly that these children
> > > heavily discriminated against in educational settings.  Very few
> > educators
> > > feel a child with more than one disability including blindness should
> be
> > > taught braille at all which is extremely wrong considering they would
> > never
> > > say the same thing about  a child with non blindness related
> > disabilities.
> > >   Its an understanding that literacy is important to all.
> > >
> > > The NOPBC always works hard at trying to build program that will
> benefit
> > > all kinds of different kids and different learners. I hope you never
> > > feel
> > > we are are not trying to serve your needs.
> > >
> > > Below is the NOPBC works shops from this years conference.  there was
> > > two
> > > workshops which were geared directly for parents of children with
> > multiple
> > > disabilities.   I would challenge that ALL the rest of the workshops
> > would
> > > benefit parents with children with multiple disabilities. also.
> > > including
> > > the college one.  The NOPBC programming is primarily our parent
> > conference
> > > and we sponsor Future Reflections which regularly  feature stores about
> > all
> > > kids of different kids.
> > >
> > >   Also if you are talking about NFB direct programming like the great
> > STEM
> > > programs I am sure Natalie Shaheen, Director of Education at the NFB
> > > Jernigan Institute would love to hear some ideas.  I happen to know
> this
> > > area is VERY important to her.
> > > Let me know if I can be have anymore help.  I am very passionate in
> this
> > > area.
> > > -Penny Duffy
> > >
> > > --
> > >
> > > Independence in the Classroom
> > > Tools, tips, and techniques for setting up the classroom and training
> > > the
> > > student for independent functioning. Instructor: Jackie Anderson,
> > > Teacher
> > > of Blind Students
> > >
> > > Independent Movement & Travel for Children with Additional Disabilities
> > > Working toward maximum independence and self-determination for the
> child
> > > with additional disabilities. Instructor: Denise Mackenstadt, NOMC
> > >
> > > Low Vision Toolbox
> > > Useful items for low vision students and how to determine the most
> > > efficient method for the task. Instructor: TBA
> > >
> > > First Steps
> > > Exploration and independent movement and travel in early childhood.
> > > Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
> > >
> > > Accessible Technology
> > > Using accessible technology for meaningful participation in school, at
> > > home, and in the community. Instructor: Eric Guillory, Director, Youth
> > > Services, LA Center for the Blind
> > >
> > > Independence Skills at Home & in the Community
> > > Teaching and supporting the development of independence skills for full
> > > participation in home and community life. Instructor: Mary Jo Hartle,
> > NOMC,
> > > TBS
> > >
> > > 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
> > >
> > > Independent Movement & Travel for the School-Age Student
> > > High expectations, real-life goals, and how to achieve them in the area
> > of
> > > independent movement and travel. Instructor: TBA
> > >
> > > Tactile Graphics?The Good, the Bad, & the Ugly
> > > The basics of creating a good tactile graphic that will really work for
> > the
> > > blind child. Instructor: Carol Castellano, Director of Programs, NOPBC
> > >
> > > I Get Around
> > > Getting around independently when you do not drive. Instructors: Pam
> > Allen,
> > > Director, LA Center for the Blind; Roland Allen, NOMC
> > >
> > > Low Vision Technology
> > >  From low tech to high tech, learn about the many options for the low
> > vision
> > > student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
> > >
> > > Saying It My Way
> > > Encouraging communication, learning, and play in children with
> > > communication needs. Instructor: Natalie Shaheen, Director of
> Education,
> > > NFB Jernigan Institute
> > >
> > > Social Skills for the School-Age Child
> > > Encouraging appropriate social interaction and play. Instructor: Sheena
> > > Manuel, Outreach Specialist, Professional Development and Research
> > > Institute on Blindness
> > >
> > > How to Set Up a Saturday School
> > > Empowering families to learn and teach the skills of independence.
> > > Instructor: Jackie Anderson, Teacher of Blind Students
> > >
> > > College Checklist: Is Your Blind Child Ready? Are YOU Ready?
> > > Preparing for heading off to college?what parents and students need to
> > > know, with a special visit from one of "the roommates from hell."
> > > Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh
> > Joiner,
> > > Student; Arielle Silverman, Fellow, University of WA; Debbie Kent
> Stein,
> > > Editor, Future Reflections
> > >
> > > Unified English Braille (UEB)
> > > It's new. It's coming. What is it, how will the transition be made, and
> > > what will it mean to your child? Instructor: Casey Robertson, Teacher
> of
> > > Blind Students
> > >
> > > IEP Basics for Parents of Blind/VI Students
> > > The sections of the IEP, essential assessments, how assessment
> > information
> > > is used, how to be an active and effective participant. Instructor:
> > Carlton
> > > Walker, Attorney, Teacher of Blind Students
> > >
> > > IEP Development and Legal Process Overview
> > > Do's & Don'ts for the IEP meeting; preparing for possible mediation,
> due
> > > process, appeal, etc; overview of the legal process; how to prepare for
> > > a
> > > due process hearing so you don't have to have one! Instructor: Carlton
> > > Walker, Attorney, Teacher of Blind Students
> > >
> > >
> > > Spanish Language Session
> > > This session will cover a range of subjects of interest to parents of
> > blind
> > > children. Instructor: Conchita Hernandez, Special Educator
> > >
> > >
> > > On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
> > > blindkid at nfbnet.org> 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?
> > >> _______________________________________________
> > >> blindkid mailing list
> > >> blindkid at nfbnet.org
> > >> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > >> To unsubscribe, change your list options or get your account info for
> > >> blindkid:
> > >>
> > >>
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> > >>
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> >
> >
> >
> >
> > ------------------------------
> >
> > Message: 6
> > Date: Wed, 9 Jul 2014 18:53:55 -0500
> > From: Barbara HAMMEL <poetlori8 at msn.com>
> > To: Bernadette Jacobs <bernienfb75 at gmail.com>, "Blind Kid Mailing
> >         List, (for      parents of blind children)" <blindkid at nfbnet.org
> >
> > Subject: Re: [blindkid] More than just blindness
> > Message-ID: <SNT407-EAS162535AB58E67A24690ABECEB0F0 at phx.gbl>
> > Content-Type: text/plain; charset="utf-8"
> >
> > I have a thought and wonder who to present it to. I'd even be willing to
> > be a worker full-time. My thought is, could we have a room in child-care
> > just for the Pauls, Jesses and Davids of the world? A room where the
> > parents don't have to worry about how many toys will be eaten or chairs
> > tipped over. A room where spinning in circles or rocking on your head all
> > day is okay. Aroom where a tantrum isn't going to clear the room and
> leave
> > the rest of the kids crying. A room where no activities really need to be
> > planned because the kids won't want to do them any way.
> > Barbara
> >
> > Sent from my iPhone
> >
> > > On Jul 9, 2014, at 6:40 PM, "Bernadette Jacobs via blindkid" <
> > blindkid at nfbnet.org> wrote:
> > >
> > > God Bless you Penny.  Ya just don't get it do ya Darling?  All the
> books
> > in the world and all the human instruction can be a wonderful thing?  But
> > Honey, I ask you.  What about these kids who actually exist?  When we
> > bring
> > our children with these multiple handicaps/issues along with us because
> > they're actually part of our families, The activities and childcare that
> > are provided for the families is Okay for the typical children.  But what
> > about these children with other issues are left to fall through the
> > cracks?
> > But, that's Okay?  Hmmm.
> > >
> > > As for Natalie, I can't think of a dearer lady.  I have the utmost
> > respect for her experteese and advice.  I feel it such an honor and
> > privilege to know her and call her a very dear friend to me and my
> > husband.
> >  She's spent time with David and has struck up a nice little friendship
> > with David.  She is one very caring lady and she's one of the hardest,
> > profficient people I know.  As for Carlton Walker, she's another very
> > bright, dear lady.  Her daughter and our daughter have also struck up a
> > good friendship.  But, as Barbara has said, where David is concerned,
> > David
> > appears to scare the tar out of the rest of the world.  That's putting it
> > nicely.  But this, does at times, forces me to consider when and where we
> > go as a family and sometimes, I do stay back and let Bill take Virginia.
> >  For, sometimes, I just don't think my heart can stand anymore hurt.
>  Some
> > days I can let it roll off.  But there are others, I simply can't. After
> > all, I might actually be human and have feelings too?  And they're not in
> > a
> > book or in some training???
> > >
> > > Bernie
> > >> On 7/9/2014 2:48 PM, Penny Duffy via blindkid wrote:
> > >> Lelena,
> > >>
> > >> I read through what you said. If i missed anything please let me know.
> > >>  Many of the parents i assist in my state experiance more than one
> > >> disability not just blindness.  I believe strongly that these children
> > >> heavily discriminated against in educational settings.  Very few
> > educators
> > >> feel a child with more than one disability including blindness should
> > >> be
> > >> taught braille at all which is extremely wrong considering they would
> > never
> > >> say the same thing about  a child with non blindness related
> > disabilities.
> > >>  Its an understanding that literacy is important to all.
> > >>
> > >> The NOPBC always works hard at trying to build program that will
> > >> benefit
> > >> all kinds of different kids and different learners. I hope you never
> > feel
> > >> we are are not trying to serve your needs.
> > >>
> > >> Below is the NOPBC works shops from this years conference.  there was
> > two
> > >> workshops which were geared directly for parents of children with
> > multiple
> > >> disabilities.   I would challenge that ALL the rest of the workshops
> > would
> > >> benefit parents with children with multiple disabilities. also.
> > including
> > >> the college one.  The NOPBC programming is primarily our parent
> > conference
> > >> and we sponsor Future Reflections which regularly  feature stores
> about
> > all
> > >> kids of different kids.
> > >>
> > >>  Also if you are talking about NFB direct programming like the great
> > STEM
> > >> programs I am sure Natalie Shaheen, Director of Education at the NFB
> > >> Jernigan Institute would love to hear some ideas.  I happen to know
> > >> this
> > >> area is VERY important to her.
> > >> Let me know if I can be have anymore help.  I am very passionate in
> > >> this
> > >> area.
> > >> -Penny Duffy
> > >>
> > >> --
> > >>
> > >> Independence in the Classroom
> > >> Tools, tips, and techniques for setting up the classroom and training
> > the
> > >> student for independent functioning. Instructor: Jackie Anderson,
> > Teacher
> > >> of Blind Students
> > >>
> > >> Independent Movement & Travel for Children with Additional
> Disabilities
> > >> Working toward maximum independence and self-determination for the
> > >> child
> > >> with additional disabilities. Instructor: Denise Mackenstadt, NOMC
> > >>
> > >> Low Vision Toolbox
> > >> Useful items for low vision students and how to determine the most
> > >> efficient method for the task. Instructor: TBA
> > >>
> > >> First Steps
> > >> Exploration and independent movement and travel in early childhood.
> > >> Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
> > >>
> > >> Accessible Technology
> > >> Using accessible technology for meaningful participation in school, at
> > >> home, and in the community. Instructor: Eric Guillory, Director, Youth
> > >> Services, LA Center for the Blind
> > >>
> > >> Independence Skills at Home & in the Community
> > >> Teaching and supporting the development of independence skills for
> full
> > >> participation in home and community life. Instructor: Mary Jo Hartle,
> > NOMC,
> > >> TBS
> > >>
> > >> 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
> > >>
> > >> Independent Movement & Travel for the School-Age Student
> > >> High expectations, real-life goals, and how to achieve them in the
> area
> > of
> > >> independent movement and travel. Instructor: TBA
> > >>
> > >> Tactile Graphics?The Good, the Bad, & the Ugly
> > >> The basics of creating a good tactile graphic that will really work
> for
> > the
> > >> blind child. Instructor: Carol Castellano, Director of Programs, NOPBC
> > >>
> > >> I Get Around
> > >> Getting around independently when you do not drive. Instructors: Pam
> > Allen,
> > >> Director, LA Center for the Blind; Roland Allen, NOMC
> > >>
> > >> Low Vision Technology
> > >> From low tech to high tech, learn about the many options for the low
> > vision
> > >> student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
> > >>
> > >> Saying It My Way
> > >> Encouraging communication, learning, and play in children with
> > >> communication needs. Instructor: Natalie Shaheen, Director of
> > >> Education,
> > >> NFB Jernigan Institute
> > >>
> > >> Social Skills for the School-Age Child
> > >> Encouraging appropriate social interaction and play. Instructor:
> Sheena
> > >> Manuel, Outreach Specialist, Professional Development and Research
> > >> Institute on Blindness
> > >>
> > >> How to Set Up a Saturday School
> > >> Empowering families to learn and teach the skills of independence.
> > >> Instructor: Jackie Anderson, Teacher of Blind Students
> > >>
> > >> College Checklist: Is Your Blind Child Ready? Are YOU Ready?
> > >> Preparing for heading off to college?what parents and students need to
> > >> know, with a special visit from one of "the roommates from hell."
> > >> Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh
> > Joiner,
> > >> Student; Arielle Silverman, Fellow, University of WA; Debbie Kent
> > >> Stein,
> > >> Editor, Future Reflections
> > >>
> > >> Unified English Braille (UEB)
> > >> It's new. It's coming. What is it, how will the transition be made,
> and
> > >> what will it mean to your child? Instructor: Casey Robertson, Teacher
> > >> of
> > >> Blind Students
> > >>
> > >> IEP Basics for Parents of Blind/VI Students
> > >> The sections of the IEP, essential assessments, how assessment
> > information
> > >> is used, how to be an active and effective participant. Instructor:
> > Carlton
> > >> Walker, Attorney, Teacher of Blind Students
> > >>
> > >> IEP Development and Legal Process Overview
> > >> Do's & Don'ts for the IEP meeting; preparing for possible mediation,
> > >> due
> > >> process, appeal, etc; overview of the legal process; how to prepare
> for
> > a
> > >> due process hearing so you don't have to have one! Instructor: Carlton
> > >> Walker, Attorney, Teacher of Blind Students
> > >>
> > >>
> > >> Spanish Language Session
> > >> This session will cover a range of subjects of interest to parents of
> > blind
> > >> children. Instructor: Conchita Hernandez, Special Educator
> > >>
> > >>
> > >> On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
> > >> blindkid at nfbnet.org> 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?
> > >>> _______________________________________________
> > >>> blindkid mailing list
> > >>> blindkid at nfbnet.org
> > >>> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > >>> To unsubscribe, change your list options or get your account info for
> > >>> blindkid:
> > >>>
> > >>>
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> > >> _______________________________________________
> > >> blindkid mailing list
> > >> blindkid at nfbnet.org
> > >> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > >> To unsubscribe, change your list options or get your account info for
> > blindkid:
> > >>
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> > >
> > >
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/poetlori8%40msn.com
> >
> > ------------------------------
> >
> > Subject: Digest Footer
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >
> >
> > ------------------------------
> >
> > End of blindkid Digest, Vol 123, Issue 9
> > ****************************************
> >
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> blindkid:
>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bookwormahb%40earthlink.net
>
>
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> blindkid:
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/lissa1531%40gmail.com
>
>
>
>
> ------------------------------
>
> Message: 6
> Date: Mon, 14 Jul 2014 10:19:35 +0800
> From: Sarah Thomas <seacknit at gmail.com>
> To: Lalena Fayre <lalenas at gmail.com>, NFBnet Blind
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> Message-ID: <8D4B442E-7BEC-412A-9573-2C0628B8FF65 at gmail.com>
> Content-Type: text/plain; charset=us-ascii
>
> 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.
> >>
> >>
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/seacknit%40gmail.com
>
>
>
>
> ------------------------------
>
> Message: 7
> Date: Sun, 13 Jul 2014 23:29:00 -0400
> From: "Ashley Bramlett" <bookwormahb at earthlink.net>
> To: <blindkid at nfbnet.org>
> Subject: Re: [blindkid] more than just blindness blindkid Digest, Vol
>         123,    Issue 9
> Message-ID: <31348E5BBDBC4EE2A1A365A2C6C82507 at OwnerPC>
> Content-Type: text/plain;       charset="utf-8"
>
> Hi Lalena,
> I hope the subject line will make this more clear, the subject line you
> used originally.
>
> I?m not sure what to say. Just be aware that you are not the only parent
> feeling alone.
> NFB?s focus is on just blindness and I suspect this may slowly change as
> more and more people come into the organization with multiple disabilities.
> Did you know that some blind students on nabs lists are expressing
> frustration as well that their other disabilities
> are hindering their pursuits of college and/or other life goals?
> There is talk of forming an interest group of multiple disabled
> individuals.
> Several students expressed concerns over their mental health challenges
> and someone said it would be good for a crisis line to be set up for
> discussing such issues.
> So, coincidently, there has been this talk amongsts some nabsters as well.
>
> So, I think both blind students and parents are beginning to recognize
> this issue. We have a new nfb president, so who knows what the future holds
> for the organization?
>
> Now a days its more common where as in the 1950s you had just blind babies.
>
> Therapeutic rec programs don?t know how to work with blind kids, true. I?m
> helping at a tr camp
> now and there?s one blind kid with multiple disabilities; he is in a wheel
> chair among other things. You do the best you can to educate.
> I don?t know of any therapeutics rec program run by a blind organization
> in the SF Bay area.
> I assume you mean SF Bay CA.
>
> There are a number of agencies in Ca if that?s where you live, but I don?t
> know to what extent they accommodate someone in his situation.
> Try camp bloomfield or enchanted hills camp. Also the Hatlen Center for
> the blind which is a living skills program may have some resources.
> Their site is www.hcblind.org.
>
> As for the attitude of super independence, I feel that and that?s what dad
> felt; you don?t have to be a parent of a multiple disabled kid to see that.
> All I?ll say is that I doubt its intensional; they just want to project a
> positive can do attitude so we can change society.
> Out of the ordinary people get the public?s attention, I suppose, so they
> look for that type to do
> outreach and convention speeches.
>
> For instance, I want to go into a field in the office that?s non
> technical, communications area probably or maybe even outreach but that may
> involve grad school.
> All we run into is technical employed adults like IT and computer
> programmers.
> Additionally, the other common occupation is lawyers. The other common one
> around here, due to our proximity to the capitol, is
> government employees such as contract specialists and Section 508
> coordinators or testers, and program analysts.
>
> All to say is you don?t always find your help so easily.
>
> Just know that you will have a happy and growing kid with a parent like
> you. Independence can mean various things to different people.
> Don?t try to apply the same standard to him and feel bad. Instead, compare
> him to himself to ensure he makes progress; you could also see other kids
> without blindness that have his disability. See how they are progressing
> and functioning.
>
> Finally, you had a few concerns. communication and long term support.
> For communication, use objects he can hand to you. If he is able to type,
> he could type out messages later on.
> I?m wondering if he can reach for things. Maybe pointing to what he
> wants/needs might work. I think there?s a communication device out there
> for nonvisual use. I?ll look around if you want.
> As you know pictures are most often used for communication. he can use
> objects and tactile pictures.
>
> For long term support and care, a group home may be your best option. I
> know of a few blind people in group homes who used to play beep ball with
> me. If he grows and develops enough to perform basic things like walking,
> toileting, and dressing, he might be okay with a personal care attendant
> and could live with roommates or other family members.
>
> You might also look into setting up a special needs trust if your finances
> allow this.
> You could also have a brother, sister, or relative be in charge of giving
> him monthly money once you?re not around.
> The special needs trust allows you to set aside money and still let your
> adult child have SSI.
> You appoint a trustee for the account. No money in this trust goes
> directly to the disabled child. Instead, it is used to
> buy goods and services the child needs. This can include Personal care
> attendant, PCA services; as well as  vehicles, recreation, education, and
> medical equipment.
> Another option is a pooled trust. Consult your attorney for leaving assets
> and money for him.
> There?s probably other long term care ideas I don?t know of. Talk with
> other parents of developmental disabilities.
> See this for information on trusts.
> http://www.nolo.com/legal-encyclopedia/special-needs-trusts-30315.html
> http://www.nsnn.com/frequently.htm
>
> I hope you find a good fit for your son. Check out best buddies.
> I suspect no blindness organization accomodates severe disabilities
> because there?s so few; as you say they will
> accommodate mild disabilities. Maybe inviting a few other developmental
> disabled kids to your home to play would be good. It would be a small group
> in a familiar setting.
> I?m also thinking that something like music therapy may be helpful.
> Also activities for movement; I think lilly neilson?s ideas are great. not
> sure the spelling exactly though.
> See http://www.pathstoliteracy.org/lilli-nielsen-and-active-learning to
> see her ideas and explanation of the ?little room?.
>
> HTH,
> Ashley
>
> From: Lalena Fayre
> Sent: Sunday, July 13, 2014 6:51 PM
> To: Ashley Bramlett
> Cc: Blind Kid Mailing List,(for parents of blind children)
> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
>
>
> 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.
>
>
>
> ------------------------------
>
> Message: 8
> Date: Mon, 14 Jul 2014 00:09:54 -0400
> From: Marianne Denning <marianne at denningweb.com>
> To: Ashley Bramlett <bookwormahb at earthlink.net>, "Blind Kid Mailing
>         List,   (for parents of blind children)" <blindkid at nfbnet.org>
> Subject: Re: [blindkid] more than just blindness blindkid Digest, Vol
>         123, Issue 9
> Message-ID:
>         <
> CANZu-Jgitvh8tV47n2sZ1f7mKOMc-R5mB5TNforLDuOpKoL7og at mail.gmail.com>
> Content-Type: text/plain; charset=UTF-8
>
> Ashley, this is very well stated.  I believe things will change.  I
> believe there were probably as many babies born with additional
> disabilities in the 50's but they were hidden.  Now we include many
> more people in life than ever and that is great.  Unfortunately, it
> can take organizations time to catch up. We need to continue to push.
> Many of those children with additional disabilities will grow up and
> become involved in NFB to whatever level they are capable of or choose
> to.  Our BELL program this summer has children with additional
> disabilities and I believe this is true in many BELL programs.
>
> On 7/13/14, Ashley Bramlett via blindkid <blindkid at nfbnet.org> wrote:
> > Hi Lalena,
> > I hope the subject line will make this more clear, the subject line you
> used
> > originally.
> >
> > I?m not sure what to say. Just be aware that you are not the only parent
> > feeling alone.
> > NFB?s focus is on just blindness and I suspect this may slowly change as
> > more and more people come into the organization with multiple
> disabilities.
> > Did you know that some blind students on nabs lists are expressing
> > frustration as well that their other disabilities
> > are hindering their pursuits of college and/or other life goals?
> > There is talk of forming an interest group of multiple disabled
> individuals.
> > Several students expressed concerns over their mental health challenges
> and
> > someone said it would be good for a crisis line to be set up for
> discussing
> > such issues.
> > So, coincidently, there has been this talk amongsts some nabsters as
> well.
> >
> > So, I think both blind students and parents are beginning to recognize
> this
> > issue. We have a new nfb president, so who knows what the future holds
> for
> > the organization?
> >
> > Now a days its more common where as in the 1950s you had just blind
> babies.
> >
> > Therapeutic rec programs don?t know how to work with blind kids, true.
> I?m
> > helping at a tr camp
> > now and there?s one blind kid with multiple disabilities; he is in a
> wheel
> > chair among other things. You do the best you can to educate.
> > I don?t know of any therapeutics rec program run by a blind organization
> in
> > the SF Bay area.
> > I assume you mean SF Bay CA.
> >
> > There are a number of agencies in Ca if that?s where you live, but I
> don?t
> > know to what extent they accommodate someone in his situation.
> > Try camp bloomfield or enchanted hills camp. Also the Hatlen Center for
> the
> > blind which is a living skills program may have some resources.
> > Their site is www.hcblind.org.
> >
> > As for the attitude of super independence, I feel that and that?s what
> dad
> > felt; you don?t have to be a parent of a multiple disabled kid to see
> that.
> > All I?ll say is that I doubt its intensional; they just want to project a
> > positive can do attitude so we can change society.
> > Out of the ordinary people get the public?s attention, I suppose, so they
> > look for that type to do
> > outreach and convention speeches.
> >
> > For instance, I want to go into a field in the office that?s non
> technical,
> > communications area probably or maybe even outreach but that may involve
> > grad school.
> > All we run into is technical employed adults like IT and computer
> > programmers.
> > Additionally, the other common occupation is lawyers. The other common
> one
> > around here, due to our proximity to the capitol, is
> > government employees such as contract specialists and Section 508
> > coordinators or testers, and program analysts.
> >
> > All to say is you don?t always find your help so easily.
> >
> > Just know that you will have a happy and growing kid with a parent like
> you.
> > Independence can mean various things to different people.
> > Don?t try to apply the same standard to him and feel bad. Instead,
> compare
> > him to himself to ensure he makes progress; you could also see other kids
> > without blindness that have his disability. See how they are progressing
> and
> > functioning.
> >
> > Finally, you had a few concerns. communication and long term support.
> > For communication, use objects he can hand to you. If he is able to
> type, he
> > could type out messages later on.
> > I?m wondering if he can reach for things. Maybe pointing to what he
> > wants/needs might work. I think there?s a communication device out there
> for
> > nonvisual use. I?ll look around if you want.
> > As you know pictures are most often used for communication. he can use
> > objects and tactile pictures.
> >
> > For long term support and care, a group home may be your best option. I
> know
> > of a few blind people in group homes who used to play beep ball with me.
> If
> > he grows and develops enough to perform basic things like walking,
> > toileting, and dressing, he might be okay with a personal care attendant
> and
> > could live with roommates or other family members.
> >
> > You might also look into setting up a special needs trust if your
> finances
> > allow this.
> > You could also have a brother, sister, or relative be in charge of giving
> > him monthly money once you?re not around.
> > The special needs trust allows you to set aside money and still let your
> > adult child have SSI.
> > You appoint a trustee for the account. No money in this trust goes
> directly
> > to the disabled child. Instead, it is used to
> > buy goods and services the child needs. This can include Personal care
> > attendant, PCA services; as well as  vehicles, recreation, education, and
> > medical equipment.
> > Another option is a pooled trust. Consult your attorney for leaving
> assets
> > and money for him.
> > There?s probably other long term care ideas I don?t know of. Talk with
> other
> > parents of developmental disabilities.
> > See this for information on trusts.
> > http://www.nolo.com/legal-encyclopedia/special-needs-trusts-30315.html
> > http://www.nsnn.com/frequently.htm
> >
> > I hope you find a good fit for your son. Check out best buddies.
> > I suspect no blindness organization accomodates severe disabilities
> because
> > there?s so few; as you say they will
> > accommodate mild disabilities. Maybe inviting a few other developmental
> > disabled kids to your home to play would be good. It would be a small
> group
> > in a familiar setting.
> > I?m also thinking that something like music therapy may be helpful.
> > Also activities for movement; I think lilly neilson?s ideas are great.
> not
> > sure the spelling exactly though.
> > See http://www.pathstoliteracy.org/lilli-nielsen-and-active-learning to
> see
> > her ideas and explanation of the ?little room?.
> >
> > HTH,
> > Ashley
> >
> > From: Lalena Fayre
> > Sent: Sunday, July 13, 2014 6:51 PM
> > To: Ashley Bramlett
> > Cc: Blind Kid Mailing List,(for parents of blind children)
> > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> >
> >
> > 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.
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/marianne%40denningweb.com
> >
>
>
> --
> Marianne Denning, TVI, MA
> Teacher of students who are blind or visually impaired
> (513) 607-6053
>
>
>
> ------------------------------
>
> Subject: Digest Footer
>
> _______________________________________________
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>
>
> ------------------------------
>
> End of blindkid Digest, Vol 123, Issue 13
> *****************************************
>
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