[blindkid] blindkid Digest, Vol 123, Issue 13

[Dani Baisden]

I think this is a wonderful idea, Laura!

I would be glad to be a part of this work group as well. We don't have our
daughter home, yet, so I wouldn't be looking at the issues from a parent's
perspective as much as from a professional one.

 I work in the Vocational Rehabilitation field at a Personal Adjustment
Training center for people who are blind and visually impaired as an
instructor. I am also the statewide Deaf-Blind Specialist for my agency and
work with all of our clients who have both vision and hearing loss. This
often includes individuals with multiple disabilities. I serve the adult
population and work a lot with transition age students. I also have
experience working in the school system as an Intervener (1:1
bridge/supporter) with a young lady who is deaf-blind with multiple
disabilities.

Please, count me in and let me know how I can serve.

Thanks,
Dani Baisden


On Mon, Jul 14, 2014 at 8:29 AM, Laura Bostick via blindkid <
blindkid at nfbnet.org> wrote:

> 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
> >         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. 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:
> > >> >
> > >>
> >
> 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/arielle71%40gmail.com
> > >
> >
> >
> >
> > ------------------------------
> >
> > 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
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >
> >
> > ------------------------------
> >
> > End of blindkid Digest, Vol 123, Issue 13
> > *****************************************
> >
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