[blindkid] unreliability of low vision

Tue Dec 9 02:28:32 UTC 2008

I have definitely found the bias towards using *any* vision, useful or
completely useless, before relying on non-visual techniques to be the norm
of expectations. And it is not just by teachers or school personnel, but
really from society at large.

When Clare first came home, we were told she had light perception only in
her one eye, the other eye being completely non-functional. And for the
first year, everyone around her just presumed she couldn't see anything but
light. I started to notice however, that she appeared to be visually looking
at things once in a while. So, I started to narrate what she was
holding/what she was visually seeing. I vividly remember her first Christmas
home. She was glued to blinking Christmas lights on the tree. So, I sat with
her and I showed her "Clare, this is a red light" "This is a blue light" and
so forth through the whole strand of lights. She was *just* emerging
verbally, and I didn't get any response. Until a month later I saw her
sitting in her brother's room looking at the string of Christmas lights in
his room and moving each individually colored light past her eye while
saying "Blue light"......"Green light"......"Yellow light". She got them all
correct. And so, I realized she could recognize colors.

It was through her ability to name colors that we started to get a grasp on
what kind of residual vision she has left. I am forever thankful that at the
time, I had come across an email on the blindkid listserv that had said
something to the effect that when treated without an automatic bias towards
using vision, that kids will use their residual vision naturally when it is
helpful, and they will use non-visual techniques when it is not helpful;
that residual vision should be *a* tool, and not the predominant tool in the
toolbox. So, I was quite content to let Clare visually ascertain things when
she felt like visually looking at things, and using non-visual techniques
when her vision is clearly not up-to-task.

But as soon as anyone around her got wind that she did, in fact, have some
functional vision, the fun began. All the "exercises" and all the explicit
encouragement for her to take things and "LOOK" at them, to "train" her to
understand her remaining vision. They figured out that when a letter is
projected through a projector or done on a light box at a height of 6 inches
she can tell you what they are. Mind you, this is only about 70% of the
time. It is very clear to me, given the things she can sometimes visually
see and sometimes cannot, that her eye fatigues easily, that it takes effort
to visually focus and a lot of times she either can't, or doesn't want, to
visually discern what is in front of her. I got asked, in all seriousness,
if I wanted her to be a print reader. They pulled out all the contrasting
plates and all the contrasting place mats and put bright neon pink markings
on her chair so she could find her chair. And when we go to the park or we
go someplace where she will remark on something she is visually looking at,
I start getting astonished looks by the people around me: "Oh, she CAN see!
I thought you said she was blind?"

The thing that is frustrating to me is that I really don't have an issue
with her visually seeing things. Sometimes people react as if I'm trying to
somehow make her "more" blind than she "really" is, or that I somehow "wish"
she couldn't see as much as she can, which is just silliness. My issue comes
with trying to teach her, both directly and indirectly, that her vision is
the most important thing she has. She clearly does not feel that way right
now, and left completely without pressure to rely on her sight really takes
control of when it is useful to her and when it is not. I don't WANT her
feeling to pressured to have to use her vision when it is not practical for
her, or it hurts to use it. It makes visually seeing the things she can see
a pleasure, not a chore and not an expectation of being "sighted" that she
can never possibly live up to. I don't need her feeling as if her vision is
the most important asset she has, when reality is that the vision she has is
simply nowhere near adequate for a life as a sighted individual.

But people in general have a really hard time with that. It's almost as if
some times some people feel you are "frauding" them by using the word
"blind" if you have *any* vision whatsoever.

Rene in Colorado Springs

On Mon, Dec 8, 2008 at 8:20 AM, Carrie Gilmer <carrie.gilmer at gmail.com>wrote:

> 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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