[blindkid] unreliability of low vision

Kasondra Payne kassyp36 at msn.com
Mon Dec 8 22:39:23 UTC 2008


Mindy, 

I am a blind adult with some remaining vision.  I can absolutely agree with the examples you cited.  I used my "vision" a lot more than I should have when I was a kid, and sometimes I still do.  I have the skills now to realize that I know when I should and when I shouldn't use it.  I have the other skills so that I don't have to use my faulty vision all the time.  I am sure glad Shawn will honk when he sees me coming.  There are too many minivans in Utah.  Yes, Carrie, you should compile all this into an article or something.  

Kasondra Payne  

-----Original Message-----
From: Carrie Gilmer <carrie.gilmer at gmail.com>
Sent: Monday, December 08, 2008 11:35 AM
To: blindkid at nfbnet.org
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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