[blindkid] New member
Richard Holloway
rholloway at gopbc.org
Thu Oct 22 20:52:42 UTC 2009
Carol's comments are right on track-- as usual!!
One thing I intended to say before but forgot. I mentioned my "low
point" but not my turning point. When Kendra was about a year-and-a-
half old, we went to the NFB convention in Atlanta. (As you may know,
there is a week long annual convention which moves around the country
each year in July.) Until that point, I think all in our family were
very much in a low place, thinking of all the things that our daughter
was going to miss out on.
At the convention, we saw literally thousands of blind people going
about their business with their white canes and guide dogs. Wow, It
was amazing! Suddenly all our questions about our child seemed to
shift away from what our daughter could do and to move towards finding
out how she would be doing these things.
Now at seven, our daughter loves to swim-- she takes lessons every
week. She has taken music and gymnastics classes and is taking ballet
& tap. She plays the piano and a bunch of other instruments. She reads
and writes constantly (braille of coarse) and remains at or above
grade level in all her schoolwork. She also likes participaring in
Girl Scouts-- she is a Brownie now and was a Daisy Scout last year.
That's not the whole list, but you get the idea and many, many of the
other parents on this list have similar stories. I believe it is DrV's
sons who like to Water Ski for example. I know blind adults who like
to snow ski. Some like to mountain climb too-- you name it.
I'm very proud of my daughter, but she is by no means unique in being
able to do so many things. So long as we the parents don't set limits
on our blind children (just as with sighted ones) they can go forth
and accomplish whatever they want in life!
Richard
On Oct 22, 2009, at 2:20 PM, Carol Castellano 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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>> >> > <
>> >> >
>> >> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/nancyteld%40msn.com
>> >> > >
>> >> > ______________________________________________
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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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