[blindkid] blindkid Digest, Vol 123, Issue 16

[Deborah Kent Stein]

Please do send me whatever you'd like to share with others.  Thanks in 
advance!

dkent5817 at att.net

-----Original Message----- 
From: m-masek at hotmail.comvia blindkid
Sent: Monday, July 14, 2014 11:56 AM
To: Risa Shariff via blindkid
Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 16

I am willing to share as well !

>From my Android phone on T-Mobile. The first nationwide 4G network.

----- Reply message -----
From: "Risa Shariff via blindkid" <blindkid at nfbnet.org>
To: "Jessica Kovacs" <jessica.kovacs979 at gmail.com>, "Blind Kid Mailing List, 
(for parents of blind children)" <blindkid at nfbnet.org>
Subject: [blindkid] blindkid Digest, Vol 123, Issue 16
Date: Mon, Jul 14, 2014 1:53 pm


I'm willing to share our story.

Risa Shariff


On Mon, Jul 14, 2014 at 1:19 PM, Jessica Kovacs via blindkid <
blindkid at nfbnet.org> wrote:

> Hi,
> My son was born blind and has some developmental delays. I would love to
> see a more inclusive focus from the NFB. When it comes to parents
> advocating for (and with, when possible) their children, we need to 
> include
> all children and help them reach their potential. I haven't made it to a
> convention yet so I can't speak to that.
>
> I do enjoy getting my issues of Future Reflections every month, but I also
> don't often find stories that I can identify with. Maybe us parents of
> children with delays or multiple issues need to step up and share our
> stories. I'm going to try to write something for Future Reflections. 
> Anyone
> else willing to share their story?
>
> Jessica
> http://www.thomasmarshalldoesitall.com
>
>
>
> On Mon, Jul 14, 2014 at 11:34 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: blindkid Digest, Vol 123, Issue 15 (Teresa Armstrong)
> >
> >
> > ---------- Forwarded message ----------
> > From: Teresa Armstrong <terarm at msn.com>
> > To: "blindkid at nfbnet.org" <blindkid at nfbnet.org>
> > Cc:
> > Date: Mon, 14 Jul 2014 10:34:06 -0500
> > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 15
> >
> >
> > > From: blindkid-request at nfbnet.org
> > > Subject: blindkid Digest, Vol 123, Issue 15
> > > To: blindkid at nfbnet.org
> > > Date: Mon, 14 Jul 2014 14:23:42 +0000
> > >
> > > 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: blindkid Digest, Vol 123, Issue 13 (Dani Baisden)
> > >    2. Re: blindkid Digest, Vol 123, Issue 13 (Anjelina)
> > >
> > >
> > > ----------------------------------------------------------------------
> > >
> > > Message: 1
> > > Date: Mon, 14 Jul 2014 08:55:34 -0500
> > > From: Dani Baisden <dani.baisden at gmail.com>
> > > To: Laura Bostick <laura.l.bostick at gmail.com>, "Blind Kid Mailing
> > >       List,   (for parents of blind children)" <blindkid at nfbnet.org>
> > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 13
> > > Message-ID:
> > >       <CAFi=
> > zHLJ5YHtS1ijO2nEc1TLD8fV0VBvUQqJwvaqVHAWgsKNDw at mail.gmail.com>
> > > Content-Type: text/plain; charset=UTF-8
> > >
> > > 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
> > > > > >> ****************************************
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> > > > >
> > > > >
> > > > > ------------------------------
> > > > >
> > > > > Message: 3
> > > > > Date: Sun, 13 Jul 2014 15:51:11 -0700
> > > > > From: Lalena Fayre <lalenas at gmail.com>
> > > > > To: Ashley Bramlett <bookwormahb at earthlink.net>
> > > > > Cc: "Blind Kid Mailing List,    \(for parents of blind children\)"
> > > > >         <blindkid at nfbnet.org>
> > > > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > > Message-ID:
> > > > >         <CAH4h=
> > > > > tY3n9te8qcmbMhT32K0s--iAOXag6iyuS3wwXyoWTNMpg at mail.gmail.com>
> > > > > Content-Type: text/plain; charset=UTF-8
> > > > >
> > > > > Ashley -
> > > > > I couldn't agree more with your day. The workshops and focus of 
> > > > > the
> > NFB
> > > > is
> > > > > on the bright stars who go on to university and graduate school. I
> > know
> > > > > some of that is necessary because some blind people would never
> see a
> > > > > highly educated, professionally successful blind person in their
> > life.
> > > > But
> > > > > I think they go over board and that attitude is spilling over to
> the
> > > > NOPBC.
> > > > >
> > > > > I'm all for self-advocacy as well as demanding accessibility and
> > > > > accommodations, BUT too often the attitude is that this
> > accessibility and
> > > > > accommodations MUST result in total independent access. If things
> > like a
> > > > > visual guide or visual assistance is provided then it's a failure.
> > Worse
> > > > > the person who lacks the skills is seen as less successful as 
> > > > > well.
> > It's
> > > > > like if you can't walk through the airport without visual
> assistance
> > you
> > > > > aren't a fully independent blind person. This attitude drives me
> > nuts.
> > > > >
> > > > > When this attitude is applied to a parent/child situation it's so
> > > > painful.
> > > > > I'm all for children being age appropriately independent but if a
> > child
> > > > > can't be then visual guide and/or assistance should be provided 
> > > > > and
> > the
> > > > > child and parent shouldn't be looked down upon if they need this.
> > Full
> > > > > integration isn't always possible for some mild to severe
> disability
> > > > > children who happen to be blind.
> > > > >
> > > > > My son does have severe disabilities for sure. I often say if he
> was
> > just
> > > > > blind this would be a cake walk. LOL He is biologically now 11 and
> is
> > > > > developing at his own pace which is currently about 3 (but will
> > change as
> > > > > he grows). The city I live has a specialized recreation program 
> > > > > for
> > > > > developmentally delayed individuals. He does go to this in the
> > summer but
> > > > > the challenge there is the counselors don't know how to work with 
> > > > > a
> > blind
> > > > > child. The good news is they are willing to be educated and 
> > > > > quickly
> > learn
> > > > > that blindness doesn't hold him back.
> > > > >
> > > > > I would like to find a therapeutic rec program run by one of the
> > blind
> > > > > organizations around here. (I live in the SF Bay Area). They are
> > great
> > > > for
> > > > > blind and mild developmental disabilities. But can't accommodate
> more
> > > > > modertate to severe disabilities. As other parents have said, I
> have
> > to
> > > > > pick and choose where my son can participate. I really do wish
> there
> > were
> > > > > more opportunities for him to be involved in programming for Blind
> > kids.
> > > > > But as you've said, that's for the superstars.
> > > > > Lalena
> > > > >
> > > > > On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett <
> > > > > bookwormahb at earthlink.net
> > > > > > wrote:
> > > > >
> > > > > > Lalena,
> > > > > > I'm sorry to hear you feel so isolated. As I said, I do agree 
> > > > > > nfb
> > needs
> > > > > to
> > > > > > address multiple disabilities more. I agree all the focus is on
> > normal
> > > > > > developing kids.
> > > > > > I'm actually the child and my parents are the parents, btw.
> > > > > > My dad also felt not all needs were addressed. And, no I have no
> > other
> > > > > > diagnosis, but we feel I'm LD in some respects and spatial
> > deficits are
> > > > > > here too.
> > > > > >
> > > > > > I've been lucky to graduate college given the rampant
> > inaccessibility
> > > > of
> > > > > > software these days.
> > > > > >
> > > > > > My dad felt and still feels that NFb only has workshops for the
> > bright
> > > > > > stars who go to college and often grad school.
> > > > > > Its as if blind kids have to do all this stuff and make straight
> > A's to
> > > > > be
> > > > > > normal.
> > > > > > What about the kids who are lucky to make it through community
> > college?
> > > > > > NFb has no place for them, but some cannot, due to a variety of
> > reasons
> > > > > > ranging from academic deficits to advocacy skills to blindness
> > deficits
> > > > > to
> > > > > > simply failure to be accomodated.
> > > > > > I know some kids who only got through community college, and no
> > they're
> > > > > > not nfb.
> > > > > >
> > > > > > Where will these kids, now adults, find jobs? its as if the
> > > > organization
> > > > > > does not care.
> > > > > >
> > > > > > Not everyone can get a grad degree and be a professional. Not
> > everyone
> > > > is
> > > > > > cut to be a lawyer, teacher, It professional, or counselor.
> > > > > > And I could rant about the inaccessibility of entry level
> > employment
> > > > but
> > > > > I
> > > > > > won't. If you even get that BA degree, you will find most entry
> > level
> > > > > jobs
> > > > > > are too visual like scheduling appointments is often not doable
> do
> > to
> > > > the
> > > > > > software issues.
> > > > > >
> > > > > > Those kids who are the bright students tend to stay in NFB and 
> > > > > > be
> > > > leaders
> > > > > > in nabs.
> > > > > > But, if you are below average, the organization does not have a
> > place;
> > > > > not
> > > > > > as a kid or adult.
> > > > > >
> > > > > > Laleana as for your specific situation, it sounds like a severe
> > case.
> > > > He
> > > > > > acts 3 and he is 11 you say.
> > > > > > Is there any recreation for kids with disabilities in your area?
> > its
> > > > > > called therapeutic recreation. we have a TR division where I
> live.
> > > > > > They should have some activities he can do. You also might find 
> > > > > > a
> > > > mentor
> > > > > > for him through Best Buddies.
> > > > > > In terms of socializing, I'm not sure as most kids will not play
> > with a
> > > > > > child who acts much younger.
> > > > > > My only thought is to get him to play with other kids with
> > disabilities
> > > > > if
> > > > > > possible. For instance high functioning autistic kids might be a
> >  good
> > > > > fit.
> > > > > > I know some of them. they tend to do things a little slower and
> > may be
> > > > > > receptive to playing with him.
> > > > > >
> > > > > > All blind and low vision kids struggle with socialization; I had
> > few
> > > > > > friends growing up.
> > > > > > I certainly cannot imagine  what its like for you and your son.
> > > > > >
> > > > > > HTH,
> > > > > >
> > > > > > Ashley
> > > > > > -----Original Message----- From: Lalena Fayre via blindkid
> > > > > > Sent: Saturday, July 12, 2014 7:01 PM
> > > > > > To: Blind Kid Mailing List,(for parents of blind children)
> > > > > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > > >
> > > > > >
> > > > > > First I have to admit, I'm struggling with how to reply to
> > individual
> > > > > > messages that posted on this list. So any tips on how to do that
> is
> > > > > great!
> > > > > >
> > > > > > At first I was going to let most of the well-intended messages
> > slide
> > > > by.
> > > > > I
> > > > > > didn't want to explain in detail why many of the suggestions and
> > > > thoughts
> > > > > > are just wrong. Worse some of the responses were just so
> inaccurate
> > > > about
> > > > > > how the national organization responds. But with Barbara's
> > response in
> > > > > > particular (and many of you who sent me private messages) I just
> > have
> > > > to
> > > > > > respond more.
> > > > > >
> > > > > > So my son has no visual acuity. He is totally blind. He was
> > adopted at
> > > > > the
> > > > > > age of 5. At that time he had a development level of a 3-6 month
> > old
> > > > > > children. We knew of his blindness and due to my ex being blind,
> > our
> > > > > > experience in NFB, my ex working at CCB, attending multiple
> > > > conventions,
> > > > > > etc, I had few fears of his blindness and didn't have the
> > misconception
> > > > > > that blindness would hold him back in any way.
> > > > > >
> > > > > > I agree that for some families it is very possible for a school
> > > > district
> > > > > to
> > > > > > discriminate against blind children and even more so against
> > multiple
> > > > > > handicap children who are also blind. This hasn't been the case
> > with my
> > > > > > son. He is in a Braille enriched environment. I wouldn't allow
> him
> > to
> > > > be
> > > > > > otherwise.  I wanted my son to "play" with the Perkins brailler.
> I
> > > > wanted
> > > > > > him to use the old Library of Congress tape recorders. I wanted
> > him to
> > > > > have
> > > > > > a cane. So I am not going to jump on the NFB bandwagon that of
> > course
> > > > the
> > > > > > educational system is against blind children and keeping them
> > > > illiterate.
> > > > > > And honestly that has nothing at all to do with my original 
> > > > > > post.
> > > > > >
> > > > > > My post is about the programs of the NOPBC and the NFB. My post
> is
> > > > about
> > > > > > the shadow the MAJORITY of multiple handicap blind children are
> > kept in
> > > > > by
> > > > > > the very advocacy group that should be shining a light on them.
> As
> > > > > multiple
> > > > > > people have stated, the MAJORITY of blind children now have
> > multiple
> > > > > > handicaps yet as I said the majority of programs, conference
> > seminars,
> > > > > > conference child care, etc. is geared toward fully functioning
> > blind
> > > > > > children. I'm not saying that there is no benefit to the general
> > > > > seminars.
> > > > > > But I can't tell you how frustrating it is to sit in a seminar
> > about
> > > > your
> > > > > > child going to college, or increasing age appropriate 
> > > > > > independent
> > > > travel,
> > > > > > etc.. I might as well sit there and cry feeling as if no one
> > > > understands
> > > > > > what it's like to have an 11 year old who is developmentally 3.
> > Where
> > > > are
> > > > > > seminars on long-term care for your child? Finding places where
> > your
> > > > > > heavily disabled child can have independence? Things along those
> > lines.
> > > > > >
> > > > > > And I hear the response - the NOPBC is a volunteer group, start
> > your
> > > > own
> > > > > > group, start your own activities, etc. But talk about victim
> > blaming. I
> > > > > > throw my hands up in exasperation because how in the world can I
> > find
> > > > > time
> > > > > > to do that when I need to provide 24-hour care for my child? How
> > can I
> > > > > > start another branch of NOPBC when I'm dealing with life as a
> > parent
> > > > to a
> > > > > > 11 year old who is developmentally 3?
> > > > > >
> > > > > > I love my son and I advocate for my son like no one's business. 
> > > > > > I
> > have
> > > > > > barked up many trees and been the squeakiest wheel possible, and
> > it's
> > > > > > worked. There are strides that have been made but the social
> > isolation
> > > > is
> > > > > > what kills me the most. It is that need to belong and feel as if
> I
> > have
> > > > > > people in my corner who understand what it's like on a daily
> basis.
> > > > > >
> > > > > > I don't want the stares or the "tsk tsk" response when I ask for
> > 1:1
> > > > > > assistance for my son to participate in activities to the best 
> > > > > > of
> > his
> > > > > > ability. I don't want someone to tell me that I should have my
> son
> > in a
> > > > > > quiet corner when he needs it but basically be ignored the rest
> of
> > the
> > > > > > time. I don't want the stares when I go to a NFB or NOPBC
> > convention. I
> > > > > > don't want my son to be looked down upon because he isn't a 
> > > > > > fully
> > > > > > independent blind child. I don't want to hear the gasps when I
> ask
> > if
> > > > he
> > > > > > can have 1:1 supervision and hand-over-hand assistance. I don't
> > want to
> > > > > be
> > > > > > lectured as if it's my attitude or lack of Foundation philosophy
> > that
> > > > is
> > > > > > the problem. I don't want to be treated as if I'm just another
> > "sighty"
> > > > > > parent who doesn't understand blindness and thinks that blind
> > people
> > > > > should
> > > > > > be coddled.
> > > > > >
> > > > > > All of these things are wrong. Totally wrong. But based upon 
> > > > > > past
> > > > > > experience and reading the organization's materials, the problem
> > isn't
> > > > > that
> > > > > > there is a blind spot (forgive the pun) in the organization, 
> > > > > > it's
> > that
> > > > > > there is a problem with me.
> > > > > >
> > > > > > I feel empowered that I'm not alone. That I'm not the only 
> > > > > > parent
> > of a
> > > > > > multi-disable blind child who has felt this scorn. And I don't
> > think
> > > > the
> > > > > > solution is to just leave and make your own organization, I 
> > > > > > think
> > the
> > > > > > solution is for the national office to focus on issues of
> multiple
> > > > > > disabilities and blindness.
> > > > > >
> > > > > > I'm sure I've angered some of you. Seemed like a ranting lunatic
> > but
> > > > > well,
> > > > > > I'm human and I hope that my rant might just dislodge this 
> > > > > > notion
> > that
> > > > > I'm
> > > > > > not educated on philosophy, unaware that this is a volunteer
> > > > > organization,
> > > > > > or haven't read enough books yet.
> > > > > >
> > > > > > Peace and love.
> > > > > >
> > > > > >
> > > > >
> > > > >
> > > > > ------------------------------
> > > > >
> > > > > Message: 4
> > > > > Date: Sun, 13 Jul 2014 20:08:16 -0400
> > > > > From: Marianne Denning <marianne at denningweb.com>
> > > > > To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,
>  (for
> > > > >         parents of blind children)" <blindkid at nfbnet.org>
> > > > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > > Message-ID:
> > > > >         <CANZu-JguTg_+uy0-KCPPwJhUTVO2UT=
> > > > > v3t2PhrYuPw1+3trD4Q at mail.gmail.com>
> > > > > Content-Type: text/plain; charset=UTF-8
> > > > >
> > > > > I agree with this statement.  Organizations that work with people
> who
> > > > > are blind don't understand people with other disabilities and
> > > > > organizations that work with people with another disability don't
> > > > > understand people who are blind.  It is a real struggle.  In
> > > > > Cincinnati we had an organization called Clovernook that said 
> > > > > their
> > > > > mission was to work with people who are blind with additional
> > > > > disabilities but a few years ago they changed their mission.  It
> was
> > > > > very sad to me because people who are deaf or blind are treated
> very
> > > > > differently than those who are not.  It is like people can't think
> > how
> > > > > to teach something in a different way.
> > > > >
> > > > > On 7/13/14, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:
> > > > > > Ashley -
> > > > > > I couldn't agree more with your day. The workshops and focus of
> > the NFB
> > > > > is
> > > > > > on the bright stars who go on to university and graduate school.
> I
> > know
> > > > > > some of that is necessary because some blind people would never
> > see a
> > > > > > highly educated, professionally successful blind person in their
> > life.
> > > > > But
> > > > > > I think they go over board and that attitude is spilling over to
> > the
> > > > > NOPBC.
> > > > > >
> > > > > > I'm all for self-advocacy as well as demanding accessibility and
> > > > > > accommodations, BUT too often the attitude is that this
> > accessibility
> > > > and
> > > > > > accommodations MUST result in total independent access. If 
> > > > > > things
> > like
> > > > a
> > > > > > visual guide or visual assistance is provided then it's a
> failure.
> > > > Worse
> > > > > > the person who lacks the skills is seen as less successful as
> well.
> > > > It's
> > > > > > like if you can't walk through the airport without visual
> > assistance
> > > > you
> > > > > > aren't a fully independent blind person. This attitude drives me
> > nuts.
> > > > > >
> > > > > > When this attitude is applied to a parent/child situation it's 
> > > > > > so
> > > > > painful.
> > > > > > I'm all for children being age appropriately independent but if 
> > > > > > a
> > child
> > > > > > can't be then visual guide and/or assistance should be provided
> > and the
> > > > > > child and parent shouldn't be looked down upon if they need 
> > > > > > this.
> > Full
> > > > > > integration isn't always possible for some mild to severe
> > disability
> > > > > > children who happen to be blind.
> > > > > >
> > > > > > My son does have severe disabilities for sure. I often say if he
> > was
> > > > just
> > > > > > blind this would be a cake walk. LOL He is biologically now 11
> and
> > is
> > > > > > developing at his own pace which is currently about 3 (but will
> > change
> > > > as
> > > > > > he grows). The city I live has a specialized recreation program
> for
> > > > > > developmentally delayed individuals. He does go to this in the
> > summer
> > > > but
> > > > > > the challenge there is the counselors don't know how to work
> with a
> > > > blind
> > > > > > child. The good news is they are willing to be educated and
> quickly
> > > > learn
> > > > > > that blindness doesn't hold him back.
> > > > > >
> > > > > > I would like to find a therapeutic rec program run by one of the
> > blind
> > > > > > organizations around here. (I live in the SF Bay Area). They are
> > great
> > > > > for
> > > > > > blind and mild developmental disabilities. But can't accommodate
> > more
> > > > > > modertate to severe disabilities. As other parents have said, I
> > have to
> > > > > > pick and choose where my son can participate. I really do wish
> > there
> > > > were
> > > > > > more opportunities for him to be involved in programming for
> Blind
> > > > kids.
> > > > > > But as you've said, that's for the superstars.
> > > > > > Lalena
> > > > > >
> > > > > > On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett
> > > > > > <bookwormahb at earthlink.net
> > > > > >> wrote:
> > > > > >
> > > > > >> Lalena,
> > > > > >> I'm sorry to hear you feel so isolated. As I said, I do agree
> nfb
> > > > needs
> > > > > >> to
> > > > > >> address multiple disabilities more. I agree all the focus is on
> > normal
> > > > > >> developing kids.
> > > > > >> I'm actually the child and my parents are the parents, btw.
> > > > > >> My dad also felt not all needs were addressed. And, no I have 
> > > > > >> no
> > other
> > > > > >> diagnosis, but we feel I'm LD in some respects and spatial
> > deficits
> > > > are
> > > > > >> here too.
> > > > > >>
> > > > > >> I've been lucky to graduate college given the rampant
> > inaccessibility
> > > > of
> > > > > >> software these days.
> > > > > >>
> > > > > >> My dad felt and still feels that NFb only has workshops for the
> > bright
> > > > > >> stars who go to college and often grad school.
> > > > > >> Its as if blind kids have to do all this stuff and make 
> > > > > >> straight
> > A's
> > > > to
> > > > > >> be
> > > > > >> normal.
> > > > > >> What about the kids who are lucky to make it through community
> > > > college?
> > > > > >> NFb has no place for them, but some cannot, due to a variety of
> > > > reasons
> > > > > >> ranging from academic deficits to advocacy skills to blindness
> > > > deficits
> > > > > >> to
> > > > > >> simply failure to be accomodated.
> > > > > >> I know some kids who only got through community college, and no
> > > > they're
> > > > > >> not nfb.
> > > > > >>
> > > > > >> Where will these kids, now adults, find jobs? its as if the
> > > > organization
> > > > > >> does not care.
> > > > > >>
> > > > > >> Not everyone can get a grad degree and be a professional. Not
> > everyone
> > > > > is
> > > > > >> cut to be a lawyer, teacher, It professional, or counselor.
> > > > > >> And I could rant about the inaccessibility of entry level
> > employment
> > > > but
> > > > > >> I
> > > > > >> won't. If you even get that BA degree, you will find most entry
> > level
> > > > > >> jobs
> > > > > >> are too visual like scheduling appointments is often not doable
> > do to
> > > > > the
> > > > > >> software issues.
> > > > > >>
> > > > > >> Those kids who are the bright students tend to stay in NFB and
> be
> > > > > leaders
> > > > > >> in nabs.
> > > > > >> But, if you are below average, the organization does not have a
> > place;
> > > > > >> not
> > > > > >> as a kid or adult.
> > > > > >>
> > > > > >> Laleana as for your specific situation, it sounds like a severe
> > case.
> > > > He
> > > > > >> acts 3 and he is 11 you say.
> > > > > >> Is there any recreation for kids with disabilities in your 
> > > > > >> area?
> > its
> > > > > >> called therapeutic recreation. we have a TR division where I
> live.
> > > > > >> They should have some activities he can do. You also might find
> a
> > > > mentor
> > > > > >> for him through Best Buddies.
> > > > > >> In terms of socializing, I'm not sure as most kids will not 
> > > > > >> play
> > with
> > > > a
> > > > > >> child who acts much younger.
> > > > > >> My only thought is to get him to play with other kids with
> > > > disabilities
> > > > > >> if
> > > > > >> possible. For instance high functioning autistic kids might be 
> > > > > >> a
> >  good
> > > > > >> fit.
> > > > > >> I know some of them. they tend to do things a little slower and
> > may be
> > > > > >> receptive to playing with him.
> > > > > >>
> > > > > >> All blind and low vision kids struggle with socialization; I 
> > > > > >> had
> > few
> > > > > >> friends growing up.
> > > > > >> I certainly cannot imagine  what its like for you and your son.
> > > > > >>
> > > > > >> HTH,
> > > > > >>
> > > > > >> Ashley
> > > > > >> -----Original Message----- From: Lalena Fayre via blindkid
> > > > > >> Sent: Saturday, July 12, 2014 7:01 PM
> > > > > >> To: Blind Kid Mailing List,(for parents of blind children)
> > > > > >> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > > >>
> > > > > >>
> > > > > >> First I have to admit, I'm struggling with how to reply to
> > individual
> > > > > >> messages that posted on this list. So any tips on how to do 
> > > > > >> that
> > is
> > > > > >> great!
> > > > > >>
> > > > > >> At first I was going to let most of the well-intended messages
> > slide
> > > > by.
> > > > > >> I
> > > > > >> didn't want to explain in detail why many of the suggestions 
> > > > > >> and
> > > > > thoughts
> > > > > >> are just wrong. Worse some of the responses were just so
> > inaccurate
> > > > > about
> > > > > >> how the national organization responds. But with Barbara's
> > response in
> > > > > >> particular (and many of you who sent me private messages) I 
> > > > > >> just
> > have
> > > > to
> > > > > >> respond more.
> > > > > >>
> > > > > >> So my son has no visual acuity. He is totally blind. He was
> > adopted at
> > > > > >> the
> > > > > >> age of 5. At that time he had a development level of a 3-6 
> > > > > >> month
> > old
> > > > > >> children. We knew of his blindness and due to my ex being 
> > > > > >> blind,
> > our
> > > > > >> experience in NFB, my ex working at CCB, attending multiple
> > > > conventions,
> > > > > >> etc, I had few fears of his blindness and didn't have the
> > > > misconception
> > > > > >> that blindness would hold him back in any way.
> > > > > >>
> > > > > >> I agree that for some families it is very possible for a school
> > > > district
> > > > > >> to
> > > > > >> discriminate against blind children and even more so against
> > multiple
> > > > > >> handicap children who are also blind. This hasn't been the case
> > with
> > > > my
> > > > > >> son. He is in a Braille enriched environment. I wouldn't allow
> > him to
> > > > be
> > > > > >> otherwise.  I wanted my son to "play" with the Perkins
> brailler. I
> > > > > wanted
> > > > > >> him to use the old Library of Congress tape recorders. I wanted
> > him to
> > > > > >> have
> > > > > >> a cane. So I am not going to jump on the NFB bandwagon that of
> > course
> > > > > the
> > > > > >> educational system is against blind children and keeping them
> > > > > illiterate.
> > > > > >> And honestly that has nothing at all to do with my original
> post.
> > > > > >>
> > > > > >> My post is about the programs of the NOPBC and the NFB. My post
> is
> > > > about
> > > > > >> the shadow the MAJORITY of multiple handicap blind children are
> > kept
> > > > in
> > > > > >> by
> > > > > >> the very advocacy group that should be shining a light on them.
> As
> > > > > >> multiple
> > > > > >> people have stated, the MAJORITY of blind children now have
> > multiple
> > > > > >> handicaps yet as I said the majority of programs, conference
> > seminars,
> > > > > >> conference child care, etc. is geared toward fully functioning
> > blind
> > > > > >> children. I'm not saying that there is no benefit to the 
> > > > > >> general
> > > > > >> seminars.
> > > > > >> But I can't tell yo
> > ...
> >
> > [Message clipped]
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