[blindkid] New member

Thu Oct 22 19:45:52 UTC 2009

Carol,
 I will be checking out the stories!
Thank you
Lesley

On Thu, Oct 22, 2009 at 1:20 PM, Carol Castellano <
carol_castellano at verizon.net> wrote:

> Ah, Lesley, you said some magic words in your message below.  Believe it or
> not, one of our slogans in the National Federation of the Blind is "It's
> okay to be blind."  Most of us did not know that and certainly did not feel
> that way in the beginning, but I would venture to say that most of us do
> now.  My daughter is grown now, a college graduate.  She's worked in a very
> professional job and is now thinking about grad school.  I have to say I
> very rarely think about the fact that she's blind.  It truly is okay.
>
> It's not that it made no difference in our lives--it did.  For example, we
> had to do extra planning to make sure she got a good education.  But we
> learned somewhere along the line that there's a way to handle just about
> every blindness-related situation that comes along and that there's a way
> that a blind person can do pretty much everything he or she wants to do.
>  Once you learn that, life becomes much easier, as all you have to do is
> find out the methods and techniques.
>
> How do you learn the techniques?  Well, you're in the right place for that!
>  As others have said, meeting blind people who can be mentors and role
> models and FRIENDS is really key.  And now that you've met up with us, you
> will be able to call upon a network of 50,000 blind people across the nation
> who will be happy to help and inform you and give you love and support.
>
> You can also start learning about the accomplishments possible for blind
> people by reading stories that will amaze and inspire you.  We have several
> posted at www.blindchildren.org.  Click on Information about Blindness and
> then Good Stories.
>
> Carol
>
>
> At 10:36 AM 10/22/2009, you wrote:
>
>> Carol,
>>  I did cancel the appointment this morning. I dont know if it was the
>> right
>> thing to do but right now its just to much. I am glad that I found the
>> group. I tend to search the Internet hoping to find something that would
>> help her or myself.  Sometimes I dont know how to cope with her not only
>> going blind but all her complex medical issues. How do you ever except or
>> deal with or even become ok with your child going blind? I am looking
>> forward to being in this group.
>> Thank you
>> Lesley
>> On Thu, Oct 22, 2009 at 9:08 AM, Carol Castellano <
>> carol_castellano at verizon.net> wrote:
>>
>> > Dear Lesley,
>> >
>> > It sounds as if you have been through a lot, especially with the
>> negative
>> > attitudes on the part of some family members.  No wonder you have not
>> "gone
>> > public."
>> >
>> > I hope that we can offer you a new path to walk along with your child.
>> >  Since there is no cure and you do not want Kristy to undergo
>> experimental
>> > treatment, it sounds as if it is time to put the medical route on the
>> back
>> > burner.  You can keep an eye on it, but not have it be the first line of
>> > action.
>> >
>> > Instead, you can start moving toward Kristy's learning the various
>> skills
>> > and tools that will enable her to have a full and independent life.
>>  These
>> > skills and tools will EMPOWER her--not to mention free you up!--and she
>> will
>> > begin to learn that she is a full human being, not a freak, with the
>> > potential to get a good education, have a career of her choice, and have
>> > normal relationships with others.
>> >
>> > I am sorry to hear that you have such little family support, but I KNOW
>> > that we in this organization are like family to one another because we
>> > support each other and UNDERSTAND.  I am glad you found us and hope you
>> will
>> > take advantage of the ideas and experience you will find here.  I'm
>> looking
>> > forward to hearing how Kristy is progressing on the road to
>> independence!
>> >
>> > Warm wishes,
>> >
>> > Carol
>> >
>> > Carol Castellano, President
>> > National Organization of Parents of Blind Children
>> > 973-377-0976
>> > carol_castellano at verizon.net
>> > www.nfb.org/nopbc
>> >
>> >
>> >  At 08:20 AM 10/22/2009, you wrote:
>> >
>> >>  Hello Linda,
>> >>  The RP doctor at mayo stated avoid any bright light shined into her
>> eyes.
>> >> I
>> >> would have to look at that eye report to remember who the specialist
>> was.
>> >> Her first eye doctor- Dr. Hoberger at mayo had retired & now she has
>> Dr.
>> >> Mohony & Dr. Izzy. There is 2 other specialist she had seen but I
>> forgot
>> >> their names-sorry.She sees to many doctors its so hard to keep them all
>> >> straight. Dr. Hoberger in the beginning told us to always get
>> transition
>> >> lenses in her glasses to protect her eyes from the light. Now the one
>> >> specialist told us to avoid shining any lights into her eyes. She has a
>> >> electroretinogram Nov. 5th at mayo. I dont know if I want to have to
>> put
>> >> through that. My thinking is we already know she has BBS & have known
>> >> since
>> >> she was 3 years old. There is no cure for her eye disease as of right
>> now
>> >> anyway & this test will be another terrible experience for her. I have
>> >> been
>> >> thinking of canceling. What good will it do to get it done? One of her
>> >> Doctors said that there is a experimental treatment that Dr. Izzy is
>> doing
>> >> with people at Mayo that has a good chance of at least slowing down the
>> >> RP.
>> >> I dont want her to be a guinea pig. She has been put through enough
>> >> already.
>> >> What would you do? Get the test or not? I dont know what to do.....She
>> has
>> >> been so traumatized from all her doctor visits she will not allow any
>> >> doctor
>> >> to even look at her private area & she has to be put under just like
>> for
>> >> surgery in order for them to look. I was in contact with Dr. Lewis when
>> >> Kristy was younger & I also went to NIH & spent a week there with
>> Leslie
>> >> Biesecker & did testing when Kristy was 3. I have been on my own with
>> all
>> >> of
>> >> this & sometimes I feel like my world is consumed with Kristy. She is
>> my
>> >> world & when there are very few times she is not with me I feel like I
>> am
>> >> missing something. I worry all the time what kind of life she will have
>> >> when
>> >> she is older & it scares the hell out of me what would happen to her if
>> I
>> >> would die. She has always been my responsibility & I have always
>> handled
>> >> everything that involves her. I know for a fact her dad would be so
>> lost
>> >> if
>> >> he had to take care of her without me. If  for some odd reason we would
>> >> both
>> >> die somehow & she would be left behind we dont have anyone who would be
>> >> able
>> >> to take her & handle everything that goes along with her. What do you
>> do
>> >> with a child like her? My family has never been involved much & his
>> family
>> >> told me from the day she was born how she belongs in the national
>> enquirer
>> >> magazine because she is a freak & what is wrong with her does not run
>> on
>> >> "their side" of the family & what is wrong with her is my fault. What a
>> >> bunch of BS. His mom & dad have never been involved with Kristy & they
>> >> have
>> >> not seen her for over 6+ years. So I sit here wondering if I should put
>> >> her
>> >> through any more testing if its not going to help her....
>> >> Thanks
>> >> Lesley
>> >>
>> >> On Wed, Oct 21, 2009 at 10:34 PM, <lindashalm at aol.com> wrote:
>> >>
>> >> >
>> >> > Hello Lesley, I also have a child with LMBBS.  He had the ERG done at
>> >> age
>> >> > 8, when we were searching for a diagnosis.  that test was pretty
>> awful.
>> >>  I
>> >> > would question the point of any more tests.  You have your diagnosis.
>> >>  We
>> >> > still have eye exams about every 18 months to check for other
>> problems.
>> >>  I
>> >> > don't know if that checking is considered a "bright light test", but
>> we
>> >> have
>> >> > done what the doctors feel they need to do.
>> >> >
>> >> > I know in traditional RP, the loss of vision is very individual.
>>  With
>> >> > LMBBS diagnosis seems to come at an earlier age.    I can tell you
>> that
>> >> in
>> >> > our case there was substantial loss between age 8 and 13.   My son
>> also
>> >> has
>> >> > a heart condition and has to wear a holter monitor on occasion.  when
>> he
>> >> was
>> >> > 7 he could read the LCD time on the monitor strapped to his waist.
>>  When
>> >> he
>> >> > was 13 he held it up to his eyes and still couldn't read it.  That
>> >> measured
>> >> > the loss to me like a slap in the face, but to him it was "oh,
>> well...."
>> >> >
>> >> > Are you familiar with the listserve for LMBBS?  There is a doctor
>> >> Richard
>> >> > Lewis of Baylor University, who has been working for nearly 20 years
>> on
>> >> > LMBBS.  He probably can advise you as to this question about the
>> >> testing.
>> >> >  If you aren't familiar with the LMBBS listserve you can reach me off
>> >> line
>> >> > at  lindashalm at aol.com  and I'll try to connect you.
>> >> >
>> >> > by the way, my son is now 26 and in Minneapolis for training with
>> BLIND,
>> >> > INC.
>> >> >
>> >> > Linda, NJ
>> >> >
>> >> >
>> >> > -----Original Message-----
>> >> > From: Nancy Eldomiatti <nancyteld at msn.com>
>> >> > Sent: Wed, Oct 21, 2009 4:44 pm
>> >> > Subject: Re: [blindkid] New member
>> >> >
>> >> >
>> >> >
>> >> > Hello Lesley,
>> >> > What bright light test are you referring to, exactly?
>> >> > our comment about the bright light testing is news to me and frankly,
>> >> quite
>> >> > isturbing.  I say that because my two oldest children, ages 16 and 13
>> >> also
>> >> > have
>> >> > ardet-Biedl and the retinal deterioration that goes with it.  We've
>> >> always
>> >> > aken them to the University of MN to have their eye exams and they've
>> >> > always
>> >> > one some form of bright light tests on them - with great difficulty
>> too,
>> >> > mind
>> >> > ou.
>> >> > There is a special test that they do to "confirm", so to speak,
>> whether
>> >> > they
>> >> > ctually have the retinal degeneration.  For my daughter, who was
>> about 3
>> >> or
>> >> > 4
>> >> > ears old at the time, they used a special appliance to hold open her
>> >> eyes
>> >> > and
>> >> > he was given a mild sedative to allow her to hold still during the
>> >> process.
>> >> >  It
>> >> > as definitely one of the more horrible experiences of my life just to
>> be
>> >> > tanding outside the door and listening to her screams. (Her dad was
>> with
>> >> > her
>> >> > nd I had her baby brother with me at the time.) In the end, they
>> never
>> >> were
>> >> > ble to get any results from the test anyway and we decided no
>> >> information
>> >> > btained from the test was worth going through that experience again.
>> >> > nterestingly, however, over 10 years later she did end up having the
>> >> test
>> >> > done,
>> >> > onfirmed the fact that she was going blind and actually she was
>> legally
>> >> > blind
>> >> > ithin the same year.
>> >> > Do you mind my asking who your doctor was last year? I would like to
>> ask
>> >> > him or
>> >> > er some more questions.
>> >> > orry, Leslie, that I actually don't have any advice to give you
>> though.
>> >> > Nancy
>> >> > From: LESLEY FISCHER<mailto:lesleyfischer at dishmail.net>
>> >> >  To: NFBnet Blind Kid Mailing List,(for parents of blind
>> >> children)<mailto:
>> >> > blindkid at nfbnet.org>
>> >> >  Sent: Wednesday, October 21, 2009 7:31 AM
>> >> >  Subject: [blindkid] New member
>> >> >
>> >> >  Hello,
>> >> >  I am new to the group. I have a 13 year old daughter with
>> Bardet-Biedl
>> >> >  Syndrome. We live in MN. Kristy is legally blind. I have a question
>> >> >  regarding tests that the eye doctor wants to do on her eyes due to
>> her
>> >> > fast
>> >> >  vision loss compared to last year. She has RP from the syndrome & we
>> >> were
>> >> >  told by a different doctor last year not to allow any test to be
>> done
>> >> on
>> >> > her
>> >> >  eyes that a bright light is shined into them because it speeds up
>> the
>> >> RP
>> >> >  leading to faster deterioration of what vision she has left. Can
>> anyone
>> >> > help
>> >> >  with advise regarding this?
>> >> >  Thanks
>> >> >  Lesley
>> >> >  _______________________________________________
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>> >> >
>> >>
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>> >> > <
>> >> >
>> >>
>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/nancyteld%40msn.com
>> >> > >
>> >> > ______________________________________________
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>> >>
>> >>
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>
> Carol Castellano, President
> National Organization of Parents of Blind Children
> 973-377-0976
> carol_castellano at verizon.net
> www.nfb.org/nopbc
>
>
>  _______________________________________________
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