[Nfbc-info] Mentor for the parent of a blind student with ONH in Southern CA?

Sun Sep 30 19:17:57 UTC 2018

Hi Chris,

Sorry for the sporadic responses, but its my turn to take hospital call
24/7 this week & the week & weekend has been busy.

I admire you taking a personal interest & reaching out to help this parent.
As a parent who too has struggled I appreciate so much the help, guidance,
& insights we have gotten through the years.

My last 2 cents.

I can totally understand being overwhelmed. Hopefully this mother gets the
short-term help she needs. In the short run, the school district situation
needs to be dealt with – based on the picture you have painted, the
situation is of a nature that it sounds like at this point she needs more
of an advocate or lawyer, than just a parent mentor. In the bigger picture,
I hope she can be encouraged to get involved with the NFB resources. Based
on the personal experiences of myself & other parents, that ultimately
however, no one will look out for a child’s best interests as well as the
parent.

I’ll also state the obvious. Though at this time it may be too much to deal
with, at some point, it will be in the child’s best interest for the mother
to learn at least some basic braille. Our first few VI teachers where not
that good. That shocking realization is what prompted my wife learned
braille early on – English & Lithuanian, as we use both a home. My wife was
much more instrumental in teaching my kids braille than our VI program. Our
past president Nancy Burns was instrumental in drawing me into the NFB. She
invited me to our State Convention where I took an ~4-hour parent workshop
run by her & other NFB members at a NFB of CA State Convention many many
years ago. A room full of sighted parents - by the end of class the parents
were able to slate & stylus out grade 1 braille messages on index cards for
their kids. I can’t tell you how empowering that was. That 4 hours had such
an impact for those lucky parents. My wife is sighted & fluent in English &
Lithuanian braille. I however am still not fluent in grade 2, but
throughout my children’s PreK-12 schooling, I knew enough to find page
numbers & identify headings in books to help my kids find the information
they needed in books we read together, in textbooks, on worksheets &
graphs. Even learning the basics is hugely helpful.

I’m in favor of pursuing ALL available options & leads fully. I would
humbly suggest you reconsider & reach out to Carlton. She is an amazing
individual – not just a mom, but also a lawyer who became a VI teacher –
when it comes to IEPs – that is a triple threat & then some. Carlton really
knows her stuff. I have heard her speak many times at National Convention &
also at programs at the Jernigan Institute. She gives amongst the best IEP
talks I have heard; the info is very practical & understandable. Despite
the distance, she has advised & helped so many parents across the country
with their situations. Her perspective is not just that of a parent who has
been through IEPs, but she has the VI program/educator background & legal
expertize to back her thoughts up.

Her convention speech this summer was moving & inspiring & just came out in
the October 2108 Braille Monitor. Gary Wunder’s article intro says it all:
“From the Editor: Carlton Walker is one of the most interesting people you
are likely to meet. When it comes to brains, she has an abundance of them.
When it comes to motivation, she has more than her share. When it comes to
education, she absorbs knowledge like a sponge, and she is not intimidated
by the need to get more of it. When it comes to passion and love for her
blind child, there is no calibrated scale that can measure that which is
infinite. We work hard to get our children the education they deserve, and
we know that environmental integration is not the same as educational
integration. When Carlton learned this, she threw herself into doing
something about it. Here is the speech she gave at the 2018 NFB National
Convention on Sunday, July 8:” From My Blind Child to Our Blind
Children—Why the National Federation of the Blind Is the Answer (
https://nfb.org/images/nfb/publications/bm/bm18/bm1809/bm180904.htm)

Wishing you & this mother & her child all the very best,

Respectfully,

Eric
-------
On Sat, Sep 29, 2018 at 6:40 PM Christopher Sabine, ONH Consulting <
info at onhconsulting.com> wrote:

> Hi Erica. Thanks again for your reply. Carlton is fairly active on the ONH
> / SOD lists on Facebook. I believe her daughter has ONH but isn’t
> significantly impacted as this child in CA is. If NOPBC isn’t active in CA,
> then unfortunately, I don’t see how Carlton could be of very much
> assistance. I did urge Mom to reach out to Ever Lee Hairston directly, so
> we’ll see how that goes.
>
>
>
> Very Best,
>
>
>
> Chris
>
>
>
> *From:* DrV [mailto:icdx1111 at gmail.com]
> *Sent:* Saturday, September 29, 2018 8:46 PM
> *To:* NFB of California List
> *Cc:* info at onhconsulting.com
> *Subject:* Re: [Nfbc-info] Mentor for the parent of a blind student with
> ONH in Southern CA?
>
>
>
> My understanding is that unfortunately the NOPBC in CA is not particularly
> active.
>
> I suggest you contact:
>
> Carlton Cook Walker , President
> National Organization of Parents of Blind Children
> NOPBCpres at gmail.com  -  (717) 658-9894
>
> -----
>
>
>
> On Sat, Sep 29, 2018 at 5:17 PM Christopher Sabine, ONH Consulting via
> NFBC-Info <nfbc-info at nfbnet.org> wrote:
>
> Erica.
>
> Thanks so much for your very thorough and comprehensive email.
>
> Unfortunately, the mother cannot attend state convention and has myriad
> other personal issues that she is dealing with. I am familiar with NOBPC
> and plan to write an article in "future Reflections" in the coming months
> on my own experience learning to read Braille. The child has other mental
> and physical health conditions and the mother has a pending application for
> Regional Center Services in Orange County, among everything else that she
> is dealing with.
>
> Do you know if the NOPBC Chapter in CA is active? Ohio had a chapter for
> some time but it folded due to lack of support.
>
>
> Very Best,
>
> Chris
> -----Original Message-----
> From: NFBC-Info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of DrV
> via NFBC-Info
> Sent: Saturday, September 29, 2018 6:04 PM
> To: NFB of California List
> Cc: DrV
> Subject: Re: [Nfbc-info] Mentor for the parent of a blind student with ONH
> in Southern CA?
>
> Hi Christopher,
>
> I suggest she connect with NOPBC directly. Everyone’s situation is so very
> different.
>
> Below are a couple direct NOPBC links for her to explore.
>
> I think the best forum for her to start reaching out to connect with
> parents & caring VI professionals with a broad spectrum of situations &
> experiences is the NOPBC Facebook group. The group is very active with
> daily posts & is incredibly supportive & helpful. I think that using that
> venue she will find the most helpful & functional advice that she can apply
> to her specific situation. There are quite a few parents/families in the
> group who live in California, but may not be that well connected with the
> local NFB – I met one such family at an out of state beach this summer!
>
> I also strongly recommend that she sign up to received Future Reflections
> which is has many inspiring stories, articles, & perspectives.
>
> I can’t over-recommend that she be encouraged to attend next year’s NFB
> Convention in Vegas – not that far away from Orange County – LOTS of
> parents & great talks & seminars & experiences for parents & kids of all
> ages (if finances are an impeding issue, perhaps she could apply for a
> scholarship/sponsorship).
>
> In the spring there is the CTEBVI Conference for TVIs, transcribers, &
> parents with a wide variety of great workshop topics & tons of
> braille-focused resources & one of the best exhibit halls. The whole
> conference has great stuff for parents, but they have parent strand & in
> recent years there has been a whole day parent workshop. It flips between
> Northern & Southern CA every other year.
>
> I’ll echo Tim’s invitation & suggestion she attend the California State
> Convention in a few weeks – it’s pretty local for her. I have to work
> Friday morning, but will be there for the rest of the convention & am
> certainly happy to talk to any parent who attends.
>
>
>
> NOPBC Facebook Page: www.facebook.com/groups/331066810353777/
>
> NOPBC Webpage: https://nopbc.org
>
> NOPBC Listserv: www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>
> NOPBC Future Reflection Magazine:https://nfb.org/future-reflections
>
> NFB of California State Convention: www.nfbcal.org/convention
>
> CTEBVI Conference www.ctebvi.org/workshops.html
>
>
>
> All the best,
>
> Eric Vasiliauskas
>
>
>
> On Fri, Sep 28, 2018 at 12:10 PM Tim Elder via NFBC-Info <
> nfbc-info at nfbnet.org> wrote:
>
> > Chris,
> >
> > She should come to our convention on October 25-28 in Los Angeles.
> > http://www.nfbcal.org/convention/
> >
> > ON Saturday, October 27, at 12:30 PM, we have an expert panel of IDEA and
> > special dedication topics that are specifically targeted at parents.  It
> > would be a great opportunity for her to meet other parents and learn
> about
> > the basic concepts and legal rights.  We could better assess her
> situation
> > and connect her with a mentor if she comes to the convention.
> >
> > Regards,
> >
> > Tim
> >
> > -----Original Message-----
> > From: NFBC-Info <nfbc-info-bounces at nfbnet.org> On Behalf Of Christopher
> > Sabine, ONH Consulting via NFBC-Info
> > Sent: Wednesday, September 26, 2018 5:28 PM
> > To: 'NFB of California List' <nfbc-info at nfbnet.org>
> > Cc: Christopher Sabine, ONH Consulting <info at onhconsulting.com>
> > Subject: [Nfbc-info] Mentor for the parent of a blind student with ONH in
> > Southern CA?
> >
> > Hello.
> >
> >
> >
> > My name is Christopher Sabine, and I am Secretary of the Federation
> Chapter
> > in Cincinnati, Ohio. I've joined the California list for employment
> related
> > reasons in the past and have posted here previously.
> >
> >
> >
> > I am a consultant for families of children with Optic Nerve Hypoplasia. I
> > am
> > writing because I am potentially about to start working with the mother
> of
> > a
> > child with ONH and total Blindness in Orange County, CA (Huntington
> Beach).
> > The parent is dealing with a lot of personal issues and having difficulty
> > with the TVI at the child's local school formulating an IEP. Do you know
> > where I can determine if NOBPC has a Chapter there and if there is a
> parent
> > who is in a position (personally / professionally) to work with this
> > family?
> > Specifically, I am looking for a parent mentor / advocate who can
> > facilitate
> > IEP meetings for this family and physically attend IEP meetings / serve
> as
> > a
> > coach / voice of reason for this parent as needed. The real issue is that
> > the child needs access to braille instruction. I suspect there may also
> be
> > developmental differences involved that the local educational agency /
> > school district is not in a position to recognize.
> >
> >
> >
> > Any information or referrals would be greatly appreciated.
> >
> >
> >
> > Thanks Much,
> >
> >
> >
> > Chris
> >
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> > <
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> >
> >
> >
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