[blindkid] an update on Joey

Arielle Silverman arielle71 at gmail.com
Fri Feb 22 03:45:42 UTC 2013


Hi Tuesday,
I will continue to keep your family in my thoughts and prayers, and
pray that you will get answers soon and will have the strength to
handle whatever neurological issues may be discovered to be happening
with Joey.
This may not sound like much of a comfort, but I really think that in
some ways it is better for Joey to have lost all of his vision rather
than just part of it. Because he is totally blind, it will be easier
for you to get the educational services he needs in order to get back
on track with reading and with getting around, using Braille and a
cane. It shouldn't be this way, but often parents of kids with partial
vision find themselves needing to prove that their kids are "blind
enough" to get educational support and services.
I do hope you can get Braille and cane instruction lined up for him if
you haven't already, and I also hope that Joey can start participating
in camps and other activities with blind kids. He might not be
eligible for the Buddy program until next summer when he is nine, but
there are probably blind children's programs in Cincinnati that he can
attend. Does Ohio have a POBC?
I know several individuals who went from being completely sighted to
completely blind between the ages of 7 and 12, who are now happy and
successful adults. Joey's blindness will be an adjustment for him but
it will not prevent him from eventually achieving his dreams.
Arielle

On 2/21/13, lindashalm at aol.com <lindashalm at aol.com> wrote:
>
> good response
>
> Linda
>
>
> -----Original Message-----
> From: Carol Castellano <carol_castellano at verizon.net>
> To: *2sday* <tuesday0728 at yahoo.com>; Blind Kid Mailing List, (for parents of
> blind children) <blindkid at nfbnet.org>
> Sent: Thu, Feb 21, 2013 11:02 am
> Subject: Re: [blindkid] an update on Joey
>
>
> Hi Tuesday,
>
> So sorry your family is going through so much upheaval.
>
> There is something you can do that might begin the process of feeling
> like you are at least a little in control of the situation.  As you
> continue to seek medical information and answers, you can also help
> Joey begin to learn the skills and techniques that will enable him to
> continue to live a normal life.  All the blind kids in our families
> and the blind adults on this list use these techniques every day and
> manage their lives just fine.
>
> There are inconveniences that come with being blind, such as not
> being able to drive--YET--but for the most part, there are tools and
> techniques that make just about everything else possible and
> doable.  Please take a look at www.blindchildren.org and read the
> "Good Stories" section.  There is also lots of info on development
> and education.  Our national website,
> www.nfb.org/parents-and-teachers, is a treasure trove of fine information.
>
> We are all with you as your family makes this huge adjustment.  And
> virtually everybody on this list would talk to you on the phone or
> email off-list if you would like.  Lean on us, we're here for you.
>
> I hope you can think about coming to our national convention in the
> summer in Orlando.  It can be a life-changing (and life-saving)
> experience for families.  More information about it will be posted
> over the next months.
>
> Warmest wishes,
> Carol
>
> Carol Castellano
> President, Parents of Blind Children-NJ
> Director of Programs
> National Organization of Parents of Blind Children
> 973-377-0976
> carol_castellano at verizon.net
> www.blindchildren.org
> www.nfb.org/parents-and-teachers
>
> At 10:34 AM 2/21/2013, you wrote:
>>Hi everyone. A while back I posted an introduction and received
>>quite a few responses. I just wanted to thank everyone for their
>>words and thoughts and also apologize for anyone I didn't respond
>>back to. Since October I hate to say that my son (now 8) has lost
>>all vision. We are still sitting here with no answers. It's been 8
>>months since we found out that Joey was legally blind and that he
>>would eventually loose all vision. Never did I think this would
>>happen so soon. I'm still searching to find cases like ours and
>>answers to what this might be. Our Dr. is still sure that's it's LCA
>>but we will be going to Cleveland Clinic next month for a 2nd
>>opinion. I'm very anxious to find out what their Dr.s there see.
>>
>>Many of you did say that the best thing was to see neurology and
>>genetics. We have been working with neurology and genetics since
>>Joey started having seizures. He is now on seizure medicine for a
>>couple months and have been seizure free since November. Genetics
>>though Cincinnati Childrens have been amazing. We have done many
>>test but haven't gotten many answers. We are currently waiting on
>>some more blood test and skin biopsy results which I hope we will be
>>getting back this week. At this point they are just searching for anything
>> ...
>>
>>I don't know which direction to go. Watching my son go through this
>>is absolutely heart breaking and the fact that I don't know what is
>>going on with his kills me. I have requested another MRI and another
>>eye exam seeing how he's seemed to have lost all vision just over
>>the last month. I just wish there was someone out there that could
>>tell me what we are dealing with! I need some kind of answers.
>>
>>Thank you to everyone on here that has taken time to read my stories
>>and taken the time to respond.
>>
>>
>>Tuesday Harrison
>>Mommy to Joey, Carson, Landon, & Summer  <3
>>_______________________________________________
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>
>
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