[blindkid] unreliability of low vision

Tue Dec 9 15:52:59 UTC 2008

Dear TJ,

Here is my idea for some words to try; a suggestion. I do not know your
parents so it is a bit difficult, I think if you speak from your heart you
will come up with the right words. I am thinking of you and wish you the
best. I hope this helps.

Mom And Dad,

You know that I love you both very much and I think you have been the best
parents I could ever want. I know that you love me very much. You have been
my supporters in every way as I was growing up, and I am so thankful for
you. And now I am grown up, I am 24 years old and I want to talk with you as
a grown up adult. There is one thing I think I need that I feel you are
having trouble understanding and I want to help you understand it.

If I needed sound amplified so I could hear better, I am sure you would help
me get a hearing aid. If my legs didn’t work very well and I needed a
wheelchair to get around I am sure you would help me get a chair. Well my
eyes don’t work the best, and I need the space just in front of me
amplified. I am scared of tripping or falling and you know that would be bad
with my shunt. I think a white cane would help me. It would extend what I
could see, and make me less nervous. I am a grown up and I want to try it,
and I need your support. The cane is just a tool, like a hearing aid or a
wheelchair. It doesn’t change who I am or make me less. Maybe it can make me
more independent too, maybe it can make me better and more confident.

You won’t always be around for me. We have to face that. I want us to plan
for it together. I don’t want to be stuck afraid and in grief planning it by
myself when you are gone. If you get old and sick I want to be grown up
enough to help you, the way you have always helped me. I think getting a
cane is a good start to learning to do things on my own. The NFB is giving
free canes to people like me who need them. I want to order one and give it
a try. I want you to support me in this like you have supported me in
everything else. So, what do you think?

TJ-do your parents know any NFB blind people? Have they ever read any Kernel
books? That might help too.

Warm Regards,

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc
-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of T. J.
Sent: Monday, December 08, 2008 6:26 PM
To: NFBnet Blind Kid Mailing List,(for parents of blind children)
Subject: Re: [blindkid] unreliability of low vision

Yes, I think i is time to talk to them again as I have before and failed. 
Any help I can get on how to bring up this subject again to my parents, is
very much apreciated.  I just don't know how to make them understand that I
need the cane to help prevent falls from tripping over things.
Thanks for listening.
T. J.

________________________________
From: Carrie Gilmer <carrie.gilmer at gmail.com>
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)"
<blindkid at nfbnet.org>
Sent: Monday, December 8, 2008 3:17:38 PM
Subject: Re: [blindkid] unreliability of low vision

Dear TJ,

I worked at one of our training centers for five years, and over the course
of time we had a few students there who had shunts. It is a bad thing to
fall and hit your head and especially risky as I recall if you have a shunt.

The depth perception I think would really be helped with a cane and I think
it would be a good idea for your safety. I am sure your parents believe they
are protecting you as things are. Parents are wonderful, but they are human
and can make mistakes. I don't know the whole situation, only what you have
told me, but if you think you need a cane I think there is a good chance you
are right and maybe your parents are making a mistake.

Maybe it is time you had a good heart to heart sit down talk with your
parents. Or maybe time to try it again if you have before and failed. Maybe
you could ask some people here or on the student list for some ideas on how
to say things. 

If there is any way you can think of for me to help you please let me know.

Sincerely, 

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc
-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of T. J.
Sent: Monday, December 08, 2008 3:14 PM
To: NFBnet Blind Kid Mailing List,(for parents of blind children)
Subject: Re: [blindkid] unreliability of low vision

I am  25.  4 years out of high school.  Still live with my parents (for the
most part this situation is ideal).  But my parents just don't see that I
need a cane.  But I do also have a condition called hydrocephalus that I was
born with. It is treated with a shunt. Due to the hydro I have
some developemental disabilities.  It is because of my hydro that my vision
is impaired.  I can see 20/20 if the thing I am looking at is 6 inches from
my nose (as this is the point my 2 eyes start working together).  Other than
that I see 20/200 out of the left eye and 20/120 out of the right (at any
point further than 6 inches from my nose).  Also I have no depth perception
what-so-ever.   

T. J.

________________________________
From: Carrie Gilmer <carrie.gilmer at gmail.com>
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)"
<blindkid at nfbnet.org>
Sent: Monday, December 8, 2008 9:09:42 AM
Subject: Re: [blindkid] unreliability of low vision

Very excellent additions Mindy, thankyou, I am saving for compilation.

And TJ, how old are you? Are you not old enough to decide for yourself to
use a cane? Have you gone on the student list? I have read conversations
there of support for students to use a cane and to deal with it when it is a
against their parents wishes. 

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Mindy Lipsey
Sent: Monday, December 08, 2008 10:38 AM
To: NFBnet Blind Kid Mailing List,(for parents of blind children)
Subject: Re: [blindkid] unreliability of low vision

I personally think that a young child who tries to use his residual vision
is often wrong in his interpretation of what he "thinks" he sees.  And he
usually doesn't know he's wrong.

I have some examples to share:

I was walking my 11 year old into school one day and we were late due to a
doctor appt.  Matthew walked by something in the grass and went to reach
down to touch it.  He thought it was a puddle of water.  It was actually a
broken window pane and the glass looked like water to him.  He could have
seriously cut himself.

I pick Matthew up at a local elementary school where he gets transportation
from the middle school (he's in a magnet school so we don't get front door
pick up service).  I drive a white car.  Sometimes I watch Matthew after he
gets off the bus, while he's "looking" for my car.  I'm not always in the
exact same spot, b/c sometimes there's another car in my spot, so I have to
park a little further down the road.  Matthew is looking for a white car,
but he would honestly get into anyone's white car and he would have no idea
if it wasn't mine.

Children with certain low vision eye diseases (like Matthew, who has
Stargardts) also have "come and go" vision.  If a car starts out in
Matthew's blind spot and he begins to cross the street, he would suddenly
see the car appear but it could be too late and he may be in the middle of
the intersection by that time.

These incidences made me realize that Matthew doesn't know what he doesn't
see, and sometimes he thinks he sees something and it's really not what he
thinks it is at all.  Low vision is a very difficult thing to explain to our
childrens' teachers.  And it doesn't get any easier as they get older.

Just a few more things to ponder.... as if we all don't have enough to worry
about!

Mindy Lipsey
Mediaedge:cia
410-530-5555
9207 Harvest Rush Road
Owings Mills, MD  21117

--- On Mon, 12/8/08, Carrie Gilmer <carrie.gilmer at gmail.com> wrote:

From: Carrie Gilmer <carrie.gilmer at gmail.com>
Subject: Re: [blindkid] unreliability of low vision
To: "'NFBnet Blind Kid Mailing List, (for parents of blind children)'"
<blindkid at nfbnet.org>
Date: Monday, December 8, 2008, 10:20 AM

Dear Leah,
What a wonderful post and testimony, thank you so much for sharing. I look
forward to hearing much more from you!

I would like to comment specifically to one part that you wrote in the end
of your post...

[Two of the helpful things that school district personnel did tell me were
1) that the child will be able to learn to interpret blurs as things come
close and go far away - as in "oh that brown blur is my dog!"]

This idea is very prevalent, and is even sometimes "trained" by
TVI's. It
can however be very misleading and even at times dangerous for the
child/student. My son's teacher's were big on this idea. Interpreting
"blurs" and "lighted rectangles" (for those with LP) while
being somewhat
useful occasionally, is more often than not unreliable and the person can be
wrong, very wrong. It can also give the student the idea that their vision
CAN be relied upon, and they can transfer that idea to other places (being
too young to discriminate). In my son's case he transferred the idea (which
he got from his O and M and Teacher of blind students very strongly) for
awhile (unbeknown to me for awhile) that he could tell soon enough when a
car was coming by vision, or in another case when it was safe to slide down
a busy hill (ended up with two black eyes one swollen shut). It is very
important that the student realize just how wrong and unreliable this
"method" can be for orientation or accurate information.

That brown blur may be A dog, but not HIS dog, is another example of the
kinds of errors I have witnessed low vision children use. That blur may be
my mom--or it may be a stranger. The child usually doesn't KNOW for SURE by
vision--. They are so good already at incorporating their other senses, they
don't realize it is often other things, sound, head knowledge of who to
expect at a certain time, that gives them the definitive answer, but they do
it without much thought, naturally, and no one usually points it out, so
they have some false idea too of how much they are really using their vision
to accurately KNOW something. I probably have a thousand examples of my son
early on learning the unreliability of his vision. One particular I can
recall...

His older sister came home from college fro the weekend. A new friend
dropped her off and came in to the door to meet us. She was tall, like
Jordan's sister, her outline was similar. Jordan did not check, he relied
on
his vision...he ran up and gave the wrong girl a great big hug. He was about
13, he was pretty embarrassed. Although that was essentially harmless it was
a lesson that he will never forget.

Sincerely, 

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Leah
Sent: Tuesday, November 25, 2008 4:05 PM
To: blindkid at nfbnet.org
Subject: Re: [blindkid] help needed with IEP goals

Doreen,

I second what Kim said about learning both Braille and print. In fact,  
I was about to write a post to this list about this (coming soon).

Here are some of the things that have helped me with some of what you  
are going through that came through the NFB:

-reading the Early Years edition of Future Reflections and the extra  
articles provided with it upon request
-reading the "low vision" articles from the NFB on issues and  
decisions faced by people who have some vision
-going on a blindfold cane walk at an NFB state convention
-walking around with people who are confident cane travelers

Another thing that we did that was available here in Texas was meet a  
blind college student who is majoring in education and an NFB member,  
and spend time with her asking lots of questions and her perspective  
on my child's little and big issues. She cared for him part time for  
several months and between her expertise with children, interest in  
special ed, and her experience with the alternative skills of  
blindness, she introduced him to many things that others had been  
unsuccessful with, such as chalk, painting, coloring, certain types of  
toys, and walking with hands held (he also has cp). I want for him to  
have blind role models and she was his first.

I totally understand about vision professionals not always being  
experienced with the very young child.

Do you have anyone you can sit down and talk with about her  
development overall, how you see her strengths and weaknesses, and  
your hopes for her?

It can be hard to know when to push the school district to implement  
things that they are not, or to renegotiate, and when to tackle things  
yourself. It sounds like for now you are going to have her at home. I  
homeschooled one of my children for preschool and first grade and am  
homeschooling my visually impaired son who is preschool aged now. It  
is fun! Each state has different laws - some states allow some  
services to continue through the school district forever or only up to  
a certain age. If you use google you can find homeschool organizations  
in your state and also homeschool listservs in your state or city.  
Also, the organization (your state's name) Parent to Parent may be a  
place to find other homeschooling parents of kids with various things  
like visual impairment or other disabilities.

You can also use a volunteer or paid advocate to help you learn your  
rights and work with the school district. Wrightslaw.com is a good but  
overwhelming resource.

As far as your IEP goals, it is your decision, but I would urge you to  
consider Braille instruction and use of a cane. People working for the  
school district told me that NFB people were so attached to their  
canes and their Braille that they would not even look at something if  
they could see it and they would not allow their children to walk  
somewhere without their cane even if they didn't need it. When I went  
to my first NFB conference I saw that this was not true. Blind adults  
who were using Braille were using their vision if they had some and  
when they chose to use it. People were walking all over with canes,  
but they were also putting down their canes and walking around the  
room if that was right for them. In the short time that I have been  
reading NFB material and exposed to NFB members, I haven't found any  
negatives to using a cane and using Braille. Those things are just  
there to help. And the law states that instruction in Braille shall be  
allowed unless there is an express reason not to use it (others can  
provide the exact text).

When my son was 1 or 2 and I went around asking everyone how to know  
if he should learn Braille, many people told me that they were  
"encouraged" to use only print and that by the time they realized how

slow their reading speed was and how bad their headaches were from  
reading heavy reading assignments in the upper grades, they felt they  
had missed a crucial time when they were young and could have been  
more easily learning Braille.

For pencil grip, I would consult a good private OT, even briefly if  
there are no other needs.

Don't feel that you need an expert before she can have a cane. There  
are some great stories about this in the early years articles in  
Future Reflections. If she is hurting herself, a cane might help, and  
it is okay for you as the parent to give it to her.

I think school district personnel are more likely to feel that  
specific visual training is necessary. We started with trying to learn  
about basic normal development, and finding in what areas our child  
needed help, and finding any way, even creative ways, to help him  
learn and progress. In playing on the playscape he learned to "use  
your fingers" to feel in front of him for steps and changes. I was  
ready to hand him a cane but he has cp and hasn't yet learned to walk.  
Meantime, he has an IEP goal to learn his letters in both Braille and  
print at the same time. He's learning to draw lines and circles which  
are pre-writing goals (in OT) and in time I hope he can play more with  
a slate and stylus and a Brailler. His TVI was nice enough to loan us  
a Perkins Brailler so that he could "scribble" on it last year.
It's  
fine with me if he can see large print, but I'm still going to keep up  
with the Braille until I have a reason not to. I would hate for him to  
have a subject he loves to read about but can't because the print  
becomes too hard.

Two of the helpful things that school district personnel did tell me  
were 1) that the child will be able to learn to interpret blurs as  
things come close and go far away - as in "oh that brown blur is my  
dog!" and 2) make sure that things that are too far away to see are  
directly experienced by the child, such as the print on the food  
boxes, how food is prepared, what is on the high bookshelves, how does  
mom put on her makeup, or whatever is important to you.

Please keep writing and asking. I hope our experiences will be of some  
help!

Leah in TX

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