[blindkid] Which Direction Should I Go?

Tue Jan 20 02:34:54 UTC 2015

Shellie, thank you so much for sharing your story.  It certainly encouraged me to have Aron learn the nonvisual skills early!  h 

     On Monday, January 19, 2015 6:06 PM, Shellie Kalinsky <shellie.kalinsky at yahoo.com> wrote:

 Hi Haley-
Welcome to the group.  My daughter's situation is different from your son's, but I think hearing my daughter's situation may help you decide which direction to go next.  I think all of the actions you are considering will be helpful for your son.  Has your son ever had a formal visual field test? I think one test is called a "Goldman Humphrey" test, but if you ask his ophthalmologist he can tell you which test is most appropriate for your son.  If your son is considered legally blind because of a narrow visual field, then that may make it a little less challenging to find services for him.  

 My daughter lost almost all of her vision at age 17 because of brain tumors.  She was a senior in public high school and had never encountered blindness before.  She is 19 years old now.  School was very hard after she lost most of her vision because she could not see well enough to navigate independently, she could not read independently, and her school was not prepared to immediately provide intense support because most children do not suddenly lose their sight during high school years.  She did not know braille, jaws, zoom text, voice over, or other adaptive technology.   She was miserable. Eventually she had an IEP with TVI instruction & O&M instruction, but as you can imagine, it was a lot to try to learn during her senior year while she was recovering from brain surgery, undergoing chemo and trying to keep up with her studies at school.  It was just awful.  

 She still learning how to use technology and O&M Her visual field is a tiny island of sight with a blank spot in the middle; accuity is 20/400 in bad eye, and maybe 20/85 in good eye on a good day.  Her eyes are perfectly healthy but her optic nerves are permanently damaged from the tumors and surgery.  She has enrolled in community college and is receiving accommodations. She has connected with our state's Dept of Blind & Vision Impaired and receives O&M instruction and technology instruction from a private instructor.  She is planning to learn braille after she finishes chemo (she gets so tired that it's hard right now).   

All of these things you are thinking about for your son will bring him more independence with school work, with social life, with everything.  It is much easier to learn these skills gradually rather than waiting.  Even if you add 1 or 2 new skills each year (cane travel, braille, audio use on the computer) they will all add up to making your son confident with independence.  Also, my daughter now has a very good low vision optometrist who has been very helpful in suggesting things for her.  So get an appointment with a low vision optometrist for your son, too.  It will help.  

Good luck & please keep us posted on how it goes!Shellie   

      From: Haley Dare via blindkid <blindkid at nfbnet.org>
 To: "blindkid at nfbnet.org" <blindkid at nfbnet.org> 
 Sent: Monday, January 19, 2015 4:38 PM
 Subject: [blindkid] Which Direction Should I Go?

 Good afternoon,
I haven't posted to this listserve before, but I am seeking some direction...hopefully, someone out there has a child who is experiencing the same type of problems as my son and can give me some advice.  Okay, here goes...
My 8 year old has been dx with amblyopia, huge refractive error, strabismus, accommodative esotropia, and a problematic visual processing disorder.  He wears very strong glasses with a bifocal/magnifier in the bottom.  We don't know how well he sees peripherally, but we know that his acuity is 20/400 in his bad eye, and 20/35 in his good eye with correction.  Our ophthalmologist says his eyes are structurally healthy and that none of these problems cause "blindness", but my son's behavior suggests otherwise.
He walkes into the sides of the wall, misses changes in the terrain, panics about leaving the house, and won't go out in the dark (or a cloudy day), falls over toys or items that are right in front of him and acts very clingy and nervous in large groups of people or in unfamiliar environments.  He can read, but not for any length of time, and the light must be bright.  He struggles with glare (especially on a bright, snowy day), print size, reading and math in school; I currently k12 him at home.  He carries a white cane for identification purposes, but I've noticed that his posture has improved.
Here's my question...and it probably seems pretty stupid, but I'm going to ask it anyway.  Is my son blind?  Should I be trying to get him some nonvisual services (like braille, O&M, etc), maybe under sleepshades?  I sometimes wonder if I should just "lose" his glasses so he isn't so overstimulated (crazy thought, I know, but he does seem calmer w/o them).  Right now, he has no professional supports, just me trying to teach him a few things.  Perhaps permaturely, but I worry about his future...he's a guy and needs to be able to read, work and take care of himself and a family.
I've been in touch with so many organizations and people that have provided wonderful advice, but I have yet to come across another parent who is living with this confusing visual conundrum.  Can anybody out there suggest to me which direction to go?  Thanks so much.
hdare
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