They don't seem to understand
Posted by Wingman on 1/14/2011 at 3:23 AM
Hi all this is primarily an update.
During winter break i went to Duke and they did a vision field test. By their expressions when they did it i don't think i did too well on it. Anyways the 30th of Dec. i went to Duke a second time this time for a second MRI and i got the results from it and what they found was... a Adenoid cystic. Big word right when i first heard it aloud the first part sounded like they were naming a spider. we're still joking about that one.
Anyways we don't know much about it except where its located it can play around with my vision and a few other things. Right now they are just watching it and i have to go in every 4 months or so unless certain symptoms arise.
I won't lie this whole experience not just finding out but not knowing too its been kinda scary.
At this point I think I've lost most of my ability to see print, at first when the print started to seem too small i thought the school was playing a cruel game with me but now i'm not so sure. I'm mainly seeing light and a few colors and i primarily only have my central field. My own hand writing is getting difficult to make out. I'm thankful i always have bared down real hard on the page so at least i can get an idea of what i wrote by touch.
the other week we had an IEP meeting, the county VI and social worker came. I felt more positive when i entered than i left. They don't seem to understand as hard as i try to get them to. I tried to explain to them what i can and can't see when i could get a word in. Towards the end of the meeting when almost everyone had left someone brought up my sunglasses which we had done explained to them 1000 times before and then i may of just took this the wrong way but what it sounded like they tried to say i was causing my vision loss and trying to psycho analyze me also something about the fish at Lenville caverns came in to the discussion. My eye doc told me that its cause they are teachers and its like a mechanic trying to explain to him how his car works.
After the meet i got worked up which triggered a migraine and had to sleep it off the rest of the night in the dark.
I'm getting fed up with school. Everything about it. Since they are sort of forcing me to deal with the large print that can't go any bigger that is too small and the paper is too big for a book bag i absolutely despise it now.The way they keep trying this stuff with me i feel like i'm hitting my breaking point.
The whole thing is making me depressed in addition to the cabin fever i have from being home on snow days that are primarily ice. Bad sledding weather you can get down hill but you can't get back up. I walked out side in that mess the other day just stepping out on our drive way i felt like i was in one of those scenes in the movies where the ice is about to crack and the character was going to fall under water, but the first Christmas snow we'd had in 40 years was great.
The only thing i find good that came out of that meet is that they are going to evaluate me for services as well as send an O&M teacher to evaluate me skills at getting around. I'm thinking they will want me to navigate with out my cane but i'm not sure.
Any ideas on what they might do?
They finally finished the new building that they made all of those craters for that i'd fall into on my way to Civics. The bad news about it is i have to go through that mess for at least two more buildings.
But the thing i despise most about the building is that everything i memorized in 9th and first semester is completely useless to me and i may not get my walk around other than the one at the open house to get familiar with it any ideas on how i could memorize a route quickly?
i don't think i'll be so lucky as to get a sighted guide either if i don't get my route down by the beginning of the semester.
This is a very long response
Has anyone taken a writing test in 10th grade before i'd like some insight. On how you did it.
My main worry about it is they told me i can't use my computer and i use my screen reader to tell me what i wrote when i write on it cause i can't see the print too well. The major issue is i won't know what i wrote the way they want me to write and they told us that neatness counts and i can barely stay in the lines let alone write neatly any tips?
Wow this response is longer than planned sorry.
My eyes hurt i think i'll quit for now and talk to you all later
There are currently 7 replies
Re:They don't seem to understandPosted by Joe S on 1/14/2011 at 9:42 AM
That is a lot to deal with, that had to be hard to sit through and I am sure they were mentioning things that you understood, some you didn't, and some things you wished they had not said. I can remember my IEP meetings, always interesting to be part of something where they are all speaking about you, your skills, and needs for the future.
I think you are making some great points about the large print and such. Have they started working with you on braille? If not, you can check out the The Hadley School for the Blind at www.hadley.edu. They will send you work through the mail, it is free as well. Or, you can talk to your TVI or parents about it. It might help with the strain that you are under visually. Just a thought after reading your comments, read your post over again. See what you think.
Duke is well known to be in the top four or five places for vision specialists, so I am sure you have some great doctors there. Typically they have some rehab/counselor type person there. Never hurts to speak to them. Your school probably has one as well. Or, talk to your parents about your feeling.
You could also think about running your own IEP meeting next time, talk to your TVI and parents about this. You can learn the process and actually run the meeting. Take ownership and don't be afraid to speak up. But, you also have to be willing to listen to them. I think you made some great points, and these are things you should express.
I not only was a participant in my IEPs,I also was a teacher in IEPs, I have also been a state representative asked to be in IEPs, so just saying I have been in a few IEPs.
It is tough dealing with the changes and persons not understanding or not being totally sensitive to your coping with this change. Plus, they may not grasp that your vision is changing so dramatically. Maybe you could visully show them through simulation, or through covering up pictures to simulate what you see. Just some thoughts.
No matter what, we all will be here for you!
Keep your head up!
Re:They don't seem to understandPosted by Wingman on 1/15/2011 at 6:14 PM
Thanks Joe S.
i'll try some of those ideas
Re:They don't seem to understandPosted by Thrill Monster on 1/15/2011 at 8:47 PM
Re:They don't seem to understandPosted by zumer7 on 1/25/2011 at 1:36 AM
Joe, could you send me information about Hadley via E-Mail? I'm curious about what exactly it is that they can provide. Is it only braille, do they provide all courses, and what does it entail.
Re:They don't seem to understandPosted by Joe S on 1/25/2011 at 8:43 AM
They provide a variety of formats including braille, online (via the web), large print, and some in audio format. They offer even classes for school credit, so schools can utilize Hadley to provide some instruction. They offer all kinds of courses. I will paste in some information here and send you it as well.
They offer other types of courses as well aimed blindness skills and a lot more.
You are eligible to enroll in the HS Program if you are age 14 or older, you are blind or meet vision eligibility requirements, you are a U.S. resident and you can understand courses written in high school level English
Transfer high school credits to a local school
Earn a high school diploma
Take blindness-specific courses that may not be available locally
Take courses in accessible media
Discover the joys of lifelong learning
High school students may take Carnegie Units that can be transferred to their local high schools. Specific Hadley courses taken in combination will provide high school credit. Contact Student Services for more information.
If you are currently enrolled in your local high school program and wish to supplement your coursework with Hadley studies, complete the enrollment process for the High School Program. Prior to enrolling in a course for credit, verify that your local school officials will accept the credits you wish to transfer.
While the transfer of Hadley's Carnegie Unit Credit to a high school program is at the discretion of the local school officials, Hadley's accredited program has been widely accepted. Students are required to obtain approval of the courses of interest by the school administrators prior to requesting official enrollment in a Hadley course. Please send written verification of course approval to Hadley’s Student Services Department.
Earning a Hadley High School Diploma is an option for those students who
Do not have a high school diploma
Are age 14 or older
Are U.S. residents
To earn a diploma from The Hadley School for the Blind, you are required to complete 16 Carnegie Units:
English 3 units
Science 2½ units
Math 2 units
Social Studies 2 units
Vocational ½ unit
Foreign Language/Art/Music ½ unit
Electives 5½ units
If you are preparing for post-secondary education, additional coursework from sources other than Hadley may be required.
Previous High School Credit
Hadley gives credit for most high school units previously completed in the U.S. Please send a copy of your transcript(s) with your application so that your previous earned credits may be validated. Adjustments to the above requirements will be made based on accepted prior credit. If you are interested in the High School Program and would like more information before you apply, please contact Student Services.
Not sure if you are eligible to enroll?
Contact Student Services so that we can evaluate your eligibility.
View HS Program Courses
You can view or search our course listing online or download the course listing as a PDF file or an RTF file. You can also request a catalog by mail by accessing the links below.
View the HS course listing online.
Interested in our online course offerings? View our HS online courses.
Search the HS Program course listing by subject area or keyword.
Download the HS Program catalog as a PDF file.
Download the HS Program catalog as an RTF file.
Request a HS Program catalog by mail in your preferred medium (braille, cassette, large print or CD) by submitting an online Catalog Request form or by calling 800-323-4238.
You can call them and talk about it as well. They have adult classes to for once you have graduated high school. It is all worth checking out.
Re: They don't seem to understandPosted by Thrill Monster on 11/21/2012 at 4:25 PM
Wow that is interesting.
Re: They don't seem to understandPosted by country girl101 on 3/21/2013 at 3:10 PM
I've taken a few hadley classes and I've liked them. I think they helped me very much.
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