[blindkid] More than just blindness

Wed Jul 9 14:01:48 UTC 2014

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?
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