[blindkid] blindkid Digest, Vol 123, Issue 16

[Jessica Kovacs]

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:

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> 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
> > > > >> ****************************************
> > > > >>
> > > > > _______________________________________________
> > > > > blindkid mailing list
> > > > > blindkid at nfbnet.org
> > > > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > > > To unsubscribe, change your list options or get your account info
> for
> > > > > blindkid:
> > > > >
> > > >
> > >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bookwormahb%40earthlink.net
> > > > >
> > > > >
> > > > >
> > > > > _______________________________________________
> > > > > blindkid mailing list
> > > > > blindkid at nfbnet.org
> > > > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > > > To unsubscribe, change your list options or get your account info
> for
> > > > > blindkid:
> > > > >
> > > >
> > >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/arielle71%40gmail.com
> > > > >
> > > >
> > > >
> > > >
> > > > ------------------------------
> > > >
> > > > Message: 3
> > > > Date: Sun, 13 Jul 2014 15:51:11 -0700
> > > > From: Lalena Fayre <lalenas at gmail.com>
> > > > To: Ashley Bramlett <bookwormahb at earthlink.net>
> > > > Cc: "Blind Kid Mailing List,    \(for parents of blind children\)"
> > > >         <blindkid at nfbnet.org>
> > > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > Message-ID:
> > > >         <CAH4h=
> > > > tY3n9te8qcmbMhT32K0s--iAOXag6iyuS3wwXyoWTNMpg at mail.gmail.com>
> > > > Content-Type: text/plain; charset=UTF-8
> > > >
> > > > Ashley -
> > > > I couldn't agree more with your day. The workshops and focus of the
> NFB
> > > is
> > > > on the bright stars who go on to university and graduate school. I
> know
> > > > some of that is necessary because some blind people would never see a
> > > > highly educated, professionally successful blind person in their
> life.
> > > But
> > > > I think they go over board and that attitude is spilling over to the
> > > NOPBC.
> > > >
> > > > I'm all for self-advocacy as well as demanding accessibility and
> > > > accommodations, BUT too often the attitude is that this
> accessibility and
> > > > accommodations MUST result in total independent access. If things
> like a
> > > > visual guide or visual assistance is provided then it's a failure.
> Worse
> > > > the person who lacks the skills is seen as less successful as well.
> It's
> > > > like if you can't walk through the airport without visual assistance
> you
> > > > aren't a fully independent blind person. This attitude drives me
> nuts.
> > > >
> > > > When this attitude is applied to a parent/child situation it's so
> > > painful.
> > > > I'm all for children being age appropriately independent but if a
> child
> > > > can't be then visual guide and/or assistance should be provided and
> the
> > > > child and parent shouldn't be looked down upon if they need this.
> Full
> > > > integration isn't always possible for some mild to severe disability
> > > > children who happen to be blind.
> > > >
> > > > My son does have severe disabilities for sure. I often say if he was
> just
> > > > blind this would be a cake walk. LOL He is biologically now 11 and is
> > > > developing at his own pace which is currently about 3 (but will
> change as
> > > > he grows). The city I live has a specialized recreation program for
> > > > developmentally delayed individuals. He does go to this in the
> summer but
> > > > the challenge there is the counselors don't know how to work with a
> blind
> > > > child. The good news is they are willing to be educated and quickly
> learn
> > > > that blindness doesn't hold him back.
> > > >
> > > > I would like to find a therapeutic rec program run by one of the
> blind
> > > > organizations around here. (I live in the SF Bay Area). They are
> great
> > > for
> > > > blind and mild developmental disabilities. But can't accommodate more
> > > > modertate to severe disabilities. As other parents have said, I have
> to
> > > > pick and choose where my son can participate. I really do wish there
> were
> > > > more opportunities for him to be involved in programming for Blind
> kids.
> > > > But as you've said, that's for the superstars.
> > > > Lalena
> > > >
> > > > On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett <
> > > > bookwormahb at earthlink.net
> > > > > wrote:
> > > >
> > > > > Lalena,
> > > > > I'm sorry to hear you feel so isolated. As I said, I do agree nfb
> needs
> > > > to
> > > > > address multiple disabilities more. I agree all the focus is on
> normal
> > > > > developing kids.
> > > > > I'm actually the child and my parents are the parents, btw.
> > > > > My dad also felt not all needs were addressed. And, no I have no
> other
> > > > > diagnosis, but we feel I'm LD in some respects and spatial
> deficits are
> > > > > here too.
> > > > >
> > > > > I've been lucky to graduate college given the rampant
> inaccessibility
> > > of
> > > > > software these days.
> > > > >
> > > > > My dad felt and still feels that NFb only has workshops for the
> bright
> > > > > stars who go to college and often grad school.
> > > > > Its as if blind kids have to do all this stuff and make straight
> A's to
> > > > be
> > > > > normal.
> > > > > What about the kids who are lucky to make it through community
> college?
> > > > > NFb has no place for them, but some cannot, due to a variety of
> reasons
> > > > > ranging from academic deficits to advocacy skills to blindness
> deficits
> > > > to
> > > > > simply failure to be accomodated.
> > > > > I know some kids who only got through community college, and no
> they're
> > > > > not nfb.
> > > > >
> > > > > Where will these kids, now adults, find jobs? its as if the
> > > organization
> > > > > does not care.
> > > > >
> > > > > Not everyone can get a grad degree and be a professional. Not
> everyone
> > > is
> > > > > cut to be a lawyer, teacher, It professional, or counselor.
> > > > > And I could rant about the inaccessibility of entry level
> employment
> > > but
> > > > I
> > > > > won't. If you even get that BA degree, you will find most entry
> level
> > > > jobs
> > > > > are too visual like scheduling appointments is often not doable do
> to
> > > the
> > > > > software issues.
> > > > >
> > > > > Those kids who are the bright students tend to stay in NFB and be
> > > leaders
> > > > > in nabs.
> > > > > But, if you are below average, the organization does not have a
> place;
> > > > not
> > > > > as a kid or adult.
> > > > >
> > > > > Laleana as for your specific situation, it sounds like a severe
> case.
> > > He
> > > > > acts 3 and he is 11 you say.
> > > > > Is there any recreation for kids with disabilities in your area?
> its
> > > > > called therapeutic recreation. we have a TR division where I live.
> > > > > They should have some activities he can do. You also might find a
> > > mentor
> > > > > for him through Best Buddies.
> > > > > In terms of socializing, I'm not sure as most kids will not play
> with a
> > > > > child who acts much younger.
> > > > > My only thought is to get him to play with other kids with
> disabilities
> > > > if
> > > > > possible. For instance high functioning autistic kids might be a
>  good
> > > > fit.
> > > > > I know some of them. they tend to do things a little slower and
> may be
> > > > > receptive to playing with him.
> > > > >
> > > > > All blind and low vision kids struggle with socialization; I had
> few
> > > > > friends growing up.
> > > > > I certainly cannot imagine  what its like for you and your son.
> > > > >
> > > > > HTH,
> > > > >
> > > > > Ashley
> > > > > -----Original Message----- From: Lalena Fayre via blindkid
> > > > > Sent: Saturday, July 12, 2014 7:01 PM
> > > > > To: Blind Kid Mailing List,(for parents of blind children)
> > > > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > >
> > > > >
> > > > > First I have to admit, I'm struggling with how to reply to
> individual
> > > > > messages that posted on this list. So any tips on how to do that is
> > > > great!
> > > > >
> > > > > At first I was going to let most of the well-intended messages
> slide
> > > by.
> > > > I
> > > > > didn't want to explain in detail why many of the suggestions and
> > > thoughts
> > > > > are just wrong. Worse some of the responses were just so inaccurate
> > > about
> > > > > how the national organization responds. But with Barbara's
> response in
> > > > > particular (and many of you who sent me private messages) I just
> have
> > > to
> > > > > respond more.
> > > > >
> > > > > So my son has no visual acuity. He is totally blind. He was
> adopted at
> > > > the
> > > > > age of 5. At that time he had a development level of a 3-6 month
> old
> > > > > children. We knew of his blindness and due to my ex being blind,
> our
> > > > > experience in NFB, my ex working at CCB, attending multiple
> > > conventions,
> > > > > etc, I had few fears of his blindness and didn't have the
> misconception
> > > > > that blindness would hold him back in any way.
> > > > >
> > > > > I agree that for some families it is very possible for a school
> > > district
> > > > to
> > > > > discriminate against blind children and even more so against
> multiple
> > > > > handicap children who are also blind. This hasn't been the case
> with my
> > > > > son. He is in a Braille enriched environment. I wouldn't allow him
> to
> > > be
> > > > > otherwise.  I wanted my son to "play" with the Perkins brailler. I
> > > wanted
> > > > > him to use the old Library of Congress tape recorders. I wanted
> him to
> > > > have
> > > > > a cane. So I am not going to jump on the NFB bandwagon that of
> course
> > > the
> > > > > educational system is against blind children and keeping them
> > > illiterate.
> > > > > And honestly that has nothing at all to do with my original post.
> > > > >
> > > > > My post is about the programs of the NOPBC and the NFB. My post is
> > > about
> > > > > the shadow the MAJORITY of multiple handicap blind children are
> kept in
> > > > by
> > > > > the very advocacy group that should be shining a light on them. As
> > > > multiple
> > > > > people have stated, the MAJORITY of blind children now have
> multiple
> > > > > handicaps yet as I said the majority of programs, conference
> seminars,
> > > > > conference child care, etc. is geared toward fully functioning
> blind
> > > > > children. I'm not saying that there is no benefit to the general
> > > > seminars.
> > > > > But I can't tell you how frustrating it is to sit in a seminar
> about
> > > your
> > > > > child going to college, or increasing age appropriate independent
> > > travel,
> > > > > etc.. I might as well sit there and cry feeling as if no one
> > > understands
> > > > > what it's like to have an 11 year old who is developmentally 3.
> Where
> > > are
> > > > > seminars on long-term care for your child? Finding places where
> your
> > > > > heavily disabled child can have independence? Things along those
> lines.
> > > > >
> > > > > And I hear the response - the NOPBC is a volunteer group, start
> your
> > > own
> > > > > group, start your own activities, etc. But talk about victim
> blaming. I
> > > > > throw my hands up in exasperation because how in the world can I
> find
> > > > time
> > > > > to do that when I need to provide 24-hour care for my child? How
> can I
> > > > > start another branch of NOPBC when I'm dealing with life as a
> parent
> > > to a
> > > > > 11 year old who is developmentally 3?
> > > > >
> > > > > I love my son and I advocate for my son like no one's business. I
> have
> > > > > barked up many trees and been the squeakiest wheel possible, and
> it's
> > > > > worked. There are strides that have been made but the social
> isolation
> > > is
> > > > > what kills me the most. It is that need to belong and feel as if I
> have
> > > > > people in my corner who understand what it's like on a daily basis.
> > > > >
> > > > > I don't want the stares or the "tsk tsk" response when I ask for
> 1:1
> > > > > assistance for my son to participate in activities to the best of
> his
> > > > > ability. I don't want someone to tell me that I should have my son
> in a
> > > > > quiet corner when he needs it but basically be ignored the rest of
> the
> > > > > time. I don't want the stares when I go to a NFB or NOPBC
> convention. I
> > > > > don't want my son to be looked down upon because he isn't a fully
> > > > > independent blind child. I don't want to hear the gasps when I ask
> if
> > > he
> > > > > can have 1:1 supervision and hand-over-hand assistance. I don't
> want to
> > > > be
> > > > > lectured as if it's my attitude or lack of Foundation philosophy
> that
> > > is
> > > > > the problem. I don't want to be treated as if I'm just another
> "sighty"
> > > > > parent who doesn't understand blindness and thinks that blind
> people
> > > > should
> > > > > be coddled.
> > > > >
> > > > > All of these things are wrong. Totally wrong. But based upon past
> > > > > experience and reading the organization's materials, the problem
> isn't
> > > > that
> > > > > there is a blind spot (forgive the pun) in the organization, it's
> that
> > > > > there is a problem with me.
> > > > >
> > > > > I feel empowered that I'm not alone. That I'm not the only parent
> of a
> > > > > multi-disable blind child who has felt this scorn. And I don't
> think
> > > the
> > > > > solution is to just leave and make your own organization, I think
> the
> > > > > solution is for the national office to focus on issues of multiple
> > > > > disabilities and blindness.
> > > > >
> > > > > I'm sure I've angered some of you. Seemed like a ranting lunatic
> but
> > > > well,
> > > > > I'm human and I hope that my rant might just dislodge this notion
> that
> > > > I'm
> > > > > not educated on philosophy, unaware that this is a volunteer
> > > > organization,
> > > > > or haven't read enough books yet.
> > > > >
> > > > > Peace and love.
> > > > >
> > > > >
> > > >
> > > >
> > > > ------------------------------
> > > >
> > > > Message: 4
> > > > Date: Sun, 13 Jul 2014 20:08:16 -0400
> > > > From: Marianne Denning <marianne at denningweb.com>
> > > > To: Lalena Fayre <lalenas at gmail.com>, "Blind Kid Mailing List,  (for
> > > >         parents of blind children)" <blindkid at nfbnet.org>
> > > > Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > Message-ID:
> > > >         <CANZu-JguTg_+uy0-KCPPwJhUTVO2UT=
> > > > v3t2PhrYuPw1+3trD4Q at mail.gmail.com>
> > > > Content-Type: text/plain; charset=UTF-8
> > > >
> > > > I agree with this statement.  Organizations that work with people who
> > > > are blind don't understand people with other disabilities and
> > > > organizations that work with people with another disability don't
> > > > understand people who are blind.  It is a real struggle.  In
> > > > Cincinnati we had an organization called Clovernook that said their
> > > > mission was to work with people who are blind with additional
> > > > disabilities but a few years ago they changed their mission.  It was
> > > > very sad to me because people who are deaf or blind are treated very
> > > > differently than those who are not.  It is like people can't think
> how
> > > > to teach something in a different way.
> > > >
> > > > On 7/13/14, Lalena Fayre via blindkid <blindkid at nfbnet.org> wrote:
> > > > > Ashley -
> > > > > I couldn't agree more with your day. The workshops and focus of
> the NFB
> > > > is
> > > > > on the bright stars who go on to university and graduate school. I
> know
> > > > > some of that is necessary because some blind people would never
> see a
> > > > > highly educated, professionally successful blind person in their
> life.
> > > > But
> > > > > I think they go over board and that attitude is spilling over to
> the
> > > > NOPBC.
> > > > >
> > > > > I'm all for self-advocacy as well as demanding accessibility and
> > > > > accommodations, BUT too often the attitude is that this
> accessibility
> > > and
> > > > > accommodations MUST result in total independent access. If things
> like
> > > a
> > > > > visual guide or visual assistance is provided then it's a failure.
> > > Worse
> > > > > the person who lacks the skills is seen as less successful as well.
> > > It's
> > > > > like if you can't walk through the airport without visual
> assistance
> > > you
> > > > > aren't a fully independent blind person. This attitude drives me
> nuts.
> > > > >
> > > > > When this attitude is applied to a parent/child situation it's so
> > > > painful.
> > > > > I'm all for children being age appropriately independent but if a
> child
> > > > > can't be then visual guide and/or assistance should be provided
> and the
> > > > > child and parent shouldn't be looked down upon if they need this.
> Full
> > > > > integration isn't always possible for some mild to severe
> disability
> > > > > children who happen to be blind.
> > > > >
> > > > > My son does have severe disabilities for sure. I often say if he
> was
> > > just
> > > > > blind this would be a cake walk. LOL He is biologically now 11 and
> is
> > > > > developing at his own pace which is currently about 3 (but will
> change
> > > as
> > > > > he grows). The city I live has a specialized recreation program for
> > > > > developmentally delayed individuals. He does go to this in the
> summer
> > > but
> > > > > the challenge there is the counselors don't know how to work with a
> > > blind
> > > > > child. The good news is they are willing to be educated and quickly
> > > learn
> > > > > that blindness doesn't hold him back.
> > > > >
> > > > > I would like to find a therapeutic rec program run by one of the
> blind
> > > > > organizations around here. (I live in the SF Bay Area). They are
> great
> > > > for
> > > > > blind and mild developmental disabilities. But can't accommodate
> more
> > > > > modertate to severe disabilities. As other parents have said, I
> have to
> > > > > pick and choose where my son can participate. I really do wish
> there
> > > were
> > > > > more opportunities for him to be involved in programming for Blind
> > > kids.
> > > > > But as you've said, that's for the superstars.
> > > > > Lalena
> > > > >
> > > > > On Sat, Jul 12, 2014 at 10:44 PM, Ashley Bramlett
> > > > > <bookwormahb at earthlink.net
> > > > >> wrote:
> > > > >
> > > > >> Lalena,
> > > > >> I'm sorry to hear you feel so isolated. As I said, I do agree nfb
> > > needs
> > > > >> to
> > > > >> address multiple disabilities more. I agree all the focus is on
> normal
> > > > >> developing kids.
> > > > >> I'm actually the child and my parents are the parents, btw.
> > > > >> My dad also felt not all needs were addressed. And, no I have no
> other
> > > > >> diagnosis, but we feel I'm LD in some respects and spatial
> deficits
> > > are
> > > > >> here too.
> > > > >>
> > > > >> I've been lucky to graduate college given the rampant
> inaccessibility
> > > of
> > > > >> software these days.
> > > > >>
> > > > >> My dad felt and still feels that NFb only has workshops for the
> bright
> > > > >> stars who go to college and often grad school.
> > > > >> Its as if blind kids have to do all this stuff and make straight
> A's
> > > to
> > > > >> be
> > > > >> normal.
> > > > >> What about the kids who are lucky to make it through community
> > > college?
> > > > >> NFb has no place for them, but some cannot, due to a variety of
> > > reasons
> > > > >> ranging from academic deficits to advocacy skills to blindness
> > > deficits
> > > > >> to
> > > > >> simply failure to be accomodated.
> > > > >> I know some kids who only got through community college, and no
> > > they're
> > > > >> not nfb.
> > > > >>
> > > > >> Where will these kids, now adults, find jobs? its as if the
> > > organization
> > > > >> does not care.
> > > > >>
> > > > >> Not everyone can get a grad degree and be a professional. Not
> everyone
> > > > is
> > > > >> cut to be a lawyer, teacher, It professional, or counselor.
> > > > >> And I could rant about the inaccessibility of entry level
> employment
> > > but
> > > > >> I
> > > > >> won't. If you even get that BA degree, you will find most entry
> level
> > > > >> jobs
> > > > >> are too visual like scheduling appointments is often not doable
> do to
> > > > the
> > > > >> software issues.
> > > > >>
> > > > >> Those kids who are the bright students tend to stay in NFB and be
> > > > leaders
> > > > >> in nabs.
> > > > >> But, if you are below average, the organization does not have a
> place;
> > > > >> not
> > > > >> as a kid or adult.
> > > > >>
> > > > >> Laleana as for your specific situation, it sounds like a severe
> case.
> > > He
> > > > >> acts 3 and he is 11 you say.
> > > > >> Is there any recreation for kids with disabilities in your area?
> its
> > > > >> called therapeutic recreation. we have a TR division where I live.
> > > > >> They should have some activities he can do. You also might find a
> > > mentor
> > > > >> for him through Best Buddies.
> > > > >> In terms of socializing, I'm not sure as most kids will not play
> with
> > > a
> > > > >> child who acts much younger.
> > > > >> My only thought is to get him to play with other kids with
> > > disabilities
> > > > >> if
> > > > >> possible. For instance high functioning autistic kids might be a
>  good
> > > > >> fit.
> > > > >> I know some of them. they tend to do things a little slower and
> may be
> > > > >> receptive to playing with him.
> > > > >>
> > > > >> All blind and low vision kids struggle with socialization; I had
> few
> > > > >> friends growing up.
> > > > >> I certainly cannot imagine  what its like for you and your son.
> > > > >>
> > > > >> HTH,
> > > > >>
> > > > >> Ashley
> > > > >> -----Original Message----- From: Lalena Fayre via blindkid
> > > > >> Sent: Saturday, July 12, 2014 7:01 PM
> > > > >> To: Blind Kid Mailing List,(for parents of blind children)
> > > > >> Subject: Re: [blindkid] blindkid Digest, Vol 123, Issue 9
> > > > >>
> > > > >>
> > > > >> First I have to admit, I'm struggling with how to reply to
> individual
> > > > >> messages that posted on this list. So any tips on how to do that
> is
> > > > >> great!
> > > > >>
> > > > >> At first I was going to let most of the well-intended messages
> slide
> > > by.
> > > > >> I
> > > > >> didn't want to explain in detail why many of the suggestions and
> > > > thoughts
> > > > >> are just wrong. Worse some of the responses were just so
> inaccurate
> > > > about
> > > > >> how the national organization responds. But with Barbara's
> response in
> > > > >> particular (and many of you who sent me private messages) I just
> have
> > > to
> > > > >> respond more.
> > > > >>
> > > > >> So my son has no visual acuity. He is totally blind. He was
> adopted at
> > > > >> the
> > > > >> age of 5. At that time he had a development level of a 3-6 month
> old
> > > > >> children. We knew of his blindness and due to my ex being blind,
> our
> > > > >> experience in NFB, my ex working at CCB, attending multiple
> > > conventions,
> > > > >> etc, I had few fears of his blindness and didn't have the
> > > misconception
> > > > >> that blindness would hold him back in any way.
> > > > >>
> > > > >> I agree that for some families it is very possible for a school
> > > district
> > > > >> to
> > > > >> discriminate against blind children and even more so against
> multiple
> > > > >> handicap children who are also blind. This hasn't been the case
> with
> > > my
> > > > >> son. He is in a Braille enriched environment. I wouldn't allow
> him to
> > > be
> > > > >> otherwise.  I wanted my son to "play" with the Perkins brailler. I
> > > > wanted
> > > > >> him to use the old Library of Congress tape recorders. I wanted
> him to
> > > > >> have
> > > > >> a cane. So I am not going to jump on the NFB bandwagon that of
> course
> > > > the
> > > > >> educational system is against blind children and keeping them
> > > > illiterate.
> > > > >> And honestly that has nothing at all to do with my original post.
> > > > >>
> > > > >> My post is about the programs of the NOPBC and the NFB. My post is
> > > about
> > > > >> the shadow the MAJORITY of multiple handicap blind children are
> kept
> > > in
> > > > >> by
> > > > >> the very advocacy group that should be shining a light on them. As
> > > > >> multiple
> > > > >> people have stated, the MAJORITY of blind children now have
> multiple
> > > > >> handicaps yet as I said the majority of programs, conference
> seminars,
> > > > >> conference child care, etc. is geared toward fully functioning
> blind
> > > > >> children. I'm not saying that there is no benefit to the general
> > > > >> seminars.
> > > > >> But I can't tell yo
> ...
>
> [Message clipped]