[blindkid] New member

Thu Oct 22 19:44:11 UTC 2009

Richard,
 I can say that I have had to "adapt" my life to Kristy & her needs. There
is no way that we would be able to function if we didn't. Sometimes its hard
& I feel like I miss out on some things in life & then I take another look &
I see that I am not missing out on all things in life, I just had to take a
detour & take a different path. Its hard not to feel that she got cheated &
feel that friends & family will never understand because they don't live it
like I have to. I heard things like how easy I had it because of her
syndrome Kristy qualified for programs that they couldn't get for their
kids. I think that hurt the most because if they had any idea what Kristy &
I went through in her life to get her this far I don't think that they would
say that. I would give up every single thing that I had just so Kristy
wouldn't have her syndrome & go through life like she has to. I tried to
explain how things are & I was told that I just want people to feel sorry
for me because I have a child like I do-BS. How do you explain to a person
who has a "normal" child ( what I mean by this is a child without Kristy's
issues or similar issues) what it feels like to miss out on things because
your child gets overstimulated & will act out. There are so many places that
we don't take her because she is not able to deal with it for long or at
all. So we had to modify our lives to accommodate her needs. The older she
gets the better it has become (sometimes) & then out of the blue, bang zoom
you get a free ride to the moon & you might as well pack your bag & head
home because she had enough. There has been a lot of days she came home from
school & something upset her & she will go on & on for hours screaming &
slamming doors & throwing things etc. I learned to just leave her alone
until she calms down unless her behavior got her or someone else in danger.
She is told to go to her room if she is not already there & she comes out
when she is done- not happy- but done with her fit. I am glad that she does
not do this at school. She just shuts down & sometimes cries at school. Her
shrink told me that she is like that because she feels comfortable at home &
around me so she is able to unload. At school she gets overstimulated & does
not have that same comfortability. I am glad that she has that ability
because thats one less thing we all have to deal with at her school. Thats a
positive!
Lesley

On Thu, Oct 22, 2009 at 1:13 PM, Richard Holloway <rholloway at gopbc.org>wrote:

> Lesley,
>
> When our blind daughter was born we had no idea there was even the
> slightest concern with her vision (or anything else). By the time she was
> six months old, she was entirely without vision. It seemed like the end of
> the world and those were probably the worst, or at least most stressful
> times of my life but slowly things got better. Kendra is Seven now and in in
> most every way, a typical, happy first grader.
>
> The issues which at first seemed overwhelming-- probably even impossible to
> deal with, are now routine and as odd as this will probably sound right now,
> we don't give many of them much thought at all. Im so used to making certain
> Kendra grabs her cane on the way out that sometimes I try and put a cane in
> my sighted three-year-old's hands as we leave the house. Everyone in the
> family is used to telling her who is speaking and what is going on that is
> visual. Her little brother was, by age two, not only telling his sister who
> he was, but even the Cat. ("Hi cat, it's me, R.J.")
>
> Know that you are among friends who understand here and that things really
> will get better over time!
>
> Richard
>
>
>
>
> On Oct 22, 2009, at 10:36 AM, LESLEY FISCHER 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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>>>>> lindkid:
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>>>>>
>>>>>
>>>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/nancyteld%40msn.com
>>>>
>>>>> <
>>>>>
>>>>>
>>>> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/nancyteld%40msn.com
>>>>
>>>>>
>>>>>> ______________________________________________
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>>>>>
>>>>>
>>>>
>>>>
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