Bring your karma
Join the waitlist today
HUMBLECAT.ORG

Blind and Visually Impaired Community

Full History - 2018 - 04 - 05 - ID#8a41l3
19
My 14 year old suddenly lost most of his vision - looking for tips (self.Blind)
submitted 5.344656217849794y ago by CinnamonDonkey
Long story short - my son has optic neuritis and all attempts to bring his vision back have had little to no result. We don't know if it ever will.

Looking for any tips to help him adjust to his new life.
changeneverhappens 17 points 5y ago
TVI in training here!
First step, get him set up for VI services at his school ASAP as well as a low vision appt with an opthalmologist, if you haven't already. He'll need to get a functional vision evaluation and a learning media assessmentfrom a TVI. The FVE and the LMA will determine what his functional/useable vision is (not just in a perfect environment like the drs) and what media he will use to read and write in (print, large print, Braille, etc)
He'll also be evaluated by an orientation and mobilty specialist and this is who will teach him how to get around school, the house, the community (if he's at that level- OM can be exploring the space in front of your face). The OM specialist will also determine if a white cane is needed and fit one for him if determined necessary/teach him how to use it.
Reach out to your state resources. I live in Texas and we have some amazing programs. TSBVI aka Texas school for the blind and visually impaired has summer programs and workshops. There may be some resources near you.

Ultimately, listen to your son. Take into account what he's feeling and what he needs.
This is a huge adjustment and he's not going to adapt over night.

Xoxoxo
CinnamonDonkey [OP] 7 points 5y ago
Thank you so much for the reply. New to all of this of course, so unsure of a lot of terms. I am in Canada. We have had been seeing an ophthalmologist since October. Spent a few weeks at the closest children's hospital for treatments. It was a gradual decrease in vision over a few months. Seems to be a stand still now. His school is helping, it's been a slow process, but he is OK with how it is going for the most part. Marks are good. Evaluations have been done. They called to say he was lovely lol. Getting resources is a bit slow, high resolution monitor, new keyboard, lock etc.

He has handled himself amazingly well with all he's been through. I just want to learn anything I can to help him along. I still hope his vision will return to be honest but know it may not happen. Xo
Drop9Reddit 5 points 5y ago
Going through the school system in Ontario A vision teacher and O and M instructor were beyond helpful. Theae were put togwther by the school board. I would also reach out to CNIB to see what resources they have. They did a lot for me and my parents when i was a kid.
CinnamonDonkey [OP] 3 points 5y ago
Thanks. We haven't reached out to CNIB yet but it is definitely next. We are also in Ontario. Hope you are doing well now.
Drop9Reddit 4 points 5y ago
Oh i have lived with it for aome 25+ years i am fine :)
pokersnek 12 points 5y ago
Most importantly, be there for him. Do normal family activities. Go on vacations. See movies. Anything he enjoyed before.

Ask the Mobility instructor if you can observe a lesson so you can know what his skills are. Ask for some training on how to guide him.
CinnamonDonkey [OP] 5 points 5y ago
Thanks. We are pretty close and this experience has definitely brought us even closer. He has some good friends who have been helping him as well. We are all pitching in for him.
saharacanuck 9 points 5y ago
I have a congenital vision problem. So I don’t know what it’s like to lose vision since I have nothing to compare it to. But I will say this. If your kid is into sports, don’t let sight stop him. Get into VI sports (if there are any in your city). I find that as an adult, it’s harder to integrate fully sighted sports (particularly anything with a ball). But VI sports are fun and are challenging and a good way to meet people.

I know I’m not really answering the question. Best of luck.
CinnamonDonkey [OP] 5 points 5y ago
All replies are helpful! And very much appreciated. Funny enough he was never into sports at all....until last summer. Got into a lot of just games with friends for fun but really picked up skateboarding. Has a new board he hasn't even tried. Worried about how he is going to do with that once it gets warmer here.
saharacanuck 3 points 5y ago
Maybe he can adapt that. I’m assuming he has some vision left? He’ll probably need to readjust. Figure out how to measure depth etc. Wear a helmet and protection and try it again.
Blackphidora 5 points 5y ago
Not mentioned yet and I may be biased, But computer literacy is important if not required in today's world and mainstream screen reader software for desktop is terribly expensive($400+ every year or two for an updated version of JAWS). If you run Windows, Look into installing $1, for linux, use fedora or talking arch, If they own a smartphone, Talkback for android and the build in equivalent for Iphone. If your son is able to learn these tools early, he will be able to function online like a sighted person and can function independently in most cases.
CinnamonDonkey [OP] 2 points 5y ago
Thank you! I will certainly look into this.
meeow_me 3 points 5y ago
As other people have mentioned, there are training programs for people with sight loss. That helped my boyfriend tremendously when he lost his sight at 18. Not only did he learn skills as a blind person, like cooking, computer, cane travel, and wood working, but it also gave him so much confidence back! It is also helpful for him to be around other blind people every once in a while. He went to the Louisiana Center for the Blind and has nothing but good things to say about it. The National Federation of the Blind is also a great organization to become involved in.
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.
©2023 HumbleCat Inc   •   HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.