[blindkid] More than just blindness

Wed Jul 9 13:46:04 UTC 2014

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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