Blind and Visually Impaired Community
↑
8
↓
So my vision is failing at an alarming rate. Nobody can figure out why or how to stop it. Any tips for someone who has had vision issues all their life, but are suddenly being tossed into the world of the blind. (self.Blind)
submitted by DarthCyrina
So the title pretty much explains it all. When I say has had vision issues all my life, I was hovering around the 20/50 mark. Excluding the cataract 13 year old me had 2 years ago, (now removed) nothing really changed. I was still blind in my left eye (is a prosthetic) and 20/50 in the right.
Until a month ago. I went to get my eyes checked and walked out to 20/80
And it's getting worse fast
I can no longer read my piano books, can barely see my phone with bold and the size up as far as it would go. I can kinda read print books with my dome, but not well.
I have an IEP already, as I have glaucoma, and at high risk for retinal detachment. I was learning Braille, but I have had a crap VI teacher for 2 years and I've forgotten everything but maybe the alphabet.
I use an iPad in school to see the board via Join.Me but the darn thing is so old it's dying as I type. And my VI lady is in no mood to get me a new one as she HATES technology and me in general.
Oh and I'm nearly deaf, but as long as I wear my hearing aids I'm fine. Most of the time
Any tips for me? What can I expect? Is there a way to buy my own Braille books and teach myself because at this point I am so done with my VI teacher. Heck she's not even a VI teacher. She's a hearing teacher who knows a bit of VI and was willing to do it for the least amount of money.
Sorry. Went on a tangent there.
Anyway, any tips for a 13 year old kid and her mom who are getting a tad bit overwhelmed by all this?
Until a month ago. I went to get my eyes checked and walked out to 20/80
And it's getting worse fast
I can no longer read my piano books, can barely see my phone with bold and the size up as far as it would go. I can kinda read print books with my dome, but not well.
I have an IEP already, as I have glaucoma, and at high risk for retinal detachment. I was learning Braille, but I have had a crap VI teacher for 2 years and I've forgotten everything but maybe the alphabet.
I use an iPad in school to see the board via Join.Me but the darn thing is so old it's dying as I type. And my VI lady is in no mood to get me a new one as she HATES technology and me in general.
Oh and I'm nearly deaf, but as long as I wear my hearing aids I'm fine. Most of the time
Any tips for me? What can I expect? Is there a way to buy my own Braille books and teach myself because at this point I am so done with my VI teacher. Heck she's not even a VI teacher. She's a hearing teacher who knows a bit of VI and was willing to do it for the least amount of money.
Sorry. Went on a tangent there.
Anyway, any tips for a 13 year old kid and her mom who are getting a tad bit overwhelmed by all this?
Nighthawk321 3 points 6y ago
I don't know what your school system is like, but I would try to request a different TVI. If it's a public school, they should be required to provide you with one. Maybe others can chime in on this.
DarthCyrina [OP] 2 points 6y ago
We have tried and tried but she is the only VI teacher in the county
Our only option is to try and get her fired, but my county may not hire a new one.
Our only option is to try and get her fired, but my county may not hire a new one.
Nighthawk321 5 points 6y ago
I know it sounds rather dramatic, but threaten to sue them. My mom and I had to do the same thing with my school district when I was in elementary school. It's a long annoying battle, but it insures that they won't get away with it.
AlliTurna 1 points 6y ago
Oh, you sound like me. My vision just kept weakening each day and I lost all of my vision just in a week when I was 5.. Or 6, I don't remember.
[deleted] 1 points 6y ago
[deleted]
hope-opotamus 1 points 6y ago
Do you have an ipad at home? My 9yo son has been using the Braille Tutor app to learn his alphabet and contractions. You can also get up to 4 free braille books from National Braille Institute a couple times a year. The catalog isn't amazing and your older but some of the books might help you to start reading braille after you learn some contractions. This seasons catalog has one of the Harry Potter books if your into that. I started doing these two things (app and books) with him after his VI teacher was lacking, but then again she only has 45 mins with him twice a week so I guess I don't expect much.
Question: Are your eye drops failing? My son is on 3 for his glaucoma and I always fear that one day they will stop working.
Question: Are your eye drops failing? My son is on 3 for his glaucoma and I always fear that one day they will stop working.
DarthCyrina [OP] 3 points 6y ago
We don't think it's the drops as my pressure is normal, I'm in the 10-15 range
And no on the iPad. Asking for one for Christmas tho
Edit: got back from emergency eye doctor appointment after severe floaters showed up and wouldn't leave. Pressure was 18. Definitely higher than normal but I was on the verge of of a panic attack so that might be the reason why.
I really freaking hope it's not glaucoma. I'll take permanent unstoppable vision loss over my glaucoma drops failing.
Last time that happened as a baby my left eye literally swelled up to the point it had be removed or it was going to explode. Dead serious.
IDK if that can still happen now that my right eye is more developed.
Hopefully not. I have a few dim memories of that time and all I can truly remember is PAIN. Unimaginable pain.
Really don't want that to happen again
Also: don't panic about your son. I have SEVERE glaucoma. Like incredibly severe glaucoma. Most people with it never even have to change their eye drops. The odds of them failing are a thousand to one.
I tend to beat the odds in all the wrong ways tho
And no on the iPad. Asking for one for Christmas tho
Edit: got back from emergency eye doctor appointment after severe floaters showed up and wouldn't leave. Pressure was 18. Definitely higher than normal but I was on the verge of of a panic attack so that might be the reason why.
I really freaking hope it's not glaucoma. I'll take permanent unstoppable vision loss over my glaucoma drops failing.
Last time that happened as a baby my left eye literally swelled up to the point it had be removed or it was going to explode. Dead serious.
IDK if that can still happen now that my right eye is more developed.
Hopefully not. I have a few dim memories of that time and all I can truly remember is PAIN. Unimaginable pain.
Really don't want that to happen again
Also: don't panic about your son. I have SEVERE glaucoma. Like incredibly severe glaucoma. Most people with it never even have to change their eye drops. The odds of them failing are a thousand to one.
I tend to beat the odds in all the wrong ways tho
iltry 1 points 6y ago
Have you had your thyroid checked? When I had problems similar to your several doctors couldn't figure out what was going on. It turned out to be Graves disease, a thyroid problem. I wish you the best. That was a very scary time for me.
DarthCyrina [OP] 3 points 6y ago
Ok. Will mention that. Is Graves permanent loss? Can it be stopped? Just asking cause I think Marshall-Stickler syndrome (my underlying genetic disorder that is the reason for everything from my glaucoma to what we think may be juvenile arthritis) has thyroid issues in it. Could be getting my syndromes confused though . Hard to keep them all separated. Issues tend to blend together.
iltry 1 points 6y ago
The thyroid is an odd thing. It can affect many thing in your body. A simple blood test will tell if your thyroid is functioning properly.
Best of luck to you.
Best of luck to you.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.