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Ask HN: My son might be blind – how to best support

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Re: Ask HN: My son might be blind – how to best support

#131

Post by jesterswilde »

DanielleMolloy wrote: post #79
jesterswilde wrote: post #27

I am blind, it was degenerative so it sounds different than what your kid has. I have a few pieces of advice. This is more about my own upbringing, so don't take any of it as an accusation towards you. 1) Don't hide things about their condition or prospects. I grew up in a very loving home. However, my parents found out I was going blind when I was ~8, I didn't find out until I was 13. My mother wanted to protect me…

Thank you for sharing. I'm in research that is somewhat attached to the technology side and find 2) particularly interesting. Did you ever look into electrotactile tongue display units? What is your opinion? I'm curious about what neuralink will present soon. Musk mentioned "atari graphics" recently, so they probably will for now only focus on generating phosphene-based crude bitmaps in the primary visual cortex (whi…

I haven't ever even heard of electrotactile tongue display units. Got a link?

I am generally more optimistic about technology if it's generally beneficial and not targeted at blind folks. If we just happen to ambiently benefit. Self driving cars and things like Neuralink fall into these categories.

Blind folks are a small percentage of the population and we don't have a lot of money. So the incentives aren't usually there to help us.

Re: Ask HN: My son might be blind – how to best support

#132

Post by jesterswilde »

matsemann wrote: post #70
jesterswilde wrote: post #27

I am blind, it was degenerative so it sounds different than what your kid has. I have a few pieces of advice. This is more about my own upbringing, so don't take any of it as an accusation towards you. 1) Don't hide things about their condition or prospects. I grew up in a very loving home. However, my parents found out I was going blind when I was ~8, I didn't find out until I was 13. My mother wanted to protect me…

Ref point 3 about high speed metal, moving to a place where things are in walking distance / less car centric could perhaps be a way to better enable independence?

Public transit is fantastic for my independence. Most other countries I've been to grant me a greater degree of freedom than I have here in the US. NYC is decent for this. Stop lights and subways help me a lot.

Of all the cities I've been to, Shanghai is where I've had the most independence (Tokyo and Osaka are tied for second.) I could often travel fully underground or using skyways. Subways everywhere that were easy to navigate. They had the blind lines on the ground, though they did sometimes run me into trees and parked bikes.

Re: Ask HN: My son might be blind – how to best support

#133

Post by squigz »

swader999 wrote: post #106

I love how blind people are replying here. Had the privilege to interview a programmer who was blind once. It floored me how well this guy could work. The speed, the ability to hold code in his mind that had only been read once to him was astounding. He got bested by someone with more specific domain experience and I still regret not being able to work with him.

Programming/IT work is one of the only professional areas in which we can really shine, so it's not surprising there's a lot of us :)

Re: Ask HN: My son might be blind – how to best support

#134

Post by squigz »

throwaway2037 wrote: post #102
miki123211 wrote: post #74

Congenitally blind person here, here are a few pieces of advice that I think are the most important. 1. Be the polar opposite of a helicopter parent. A lot of blind people end up extremely incapable as adults, because their parents were too afraid to let them learn anything that might have possibly been somewhat dangerous. Sighted kids can recover from this by watching how others do things, or, in the worst case, wat…

This is a great post. Thank you to share. First hand experiences like this are one of the best parts of HN. This part: > If you can find a way to teach your kid good white-cane skills without making them miserable, they'll be grateful to you forever. Can you go a little deeper on this one? What are some good ways vs bad ways to teach white-cane skills? Last: A question for myself. Sometimes, when I ride the subway, I…

Seconding the other commenter: if you think we need help, just come up and simply ask if we need some help. We'll appreciate the offer, even if we don't really need help.

Maybe a couple of other pieces of advice might be: 1) don't touch them without saying something first (this can be very startling) and 2) don't be patronizing about it

Re: Ask HN: My son might be blind – how to best support

#135

Post by squigz »

lynx23 wrote: post #46

blind man in his 40s here. Reduced contact to his overprotective mother. My most important advice: Support your child, but don't forget to let him make his own experiences at some point. Don't overprotect, which is the worst for blind people. Coping mechanisms are very individual, but one pattern is clear: Those overprotected that don't flee from their parents end up being even more disabled. Why? Because you need ti…

This is good advice, but very tricky for parents. How do you know what is too much? How do you reconcile this advice with the innate desire to protect your child, which is turned up to 11 for a disabled child?

Not easily, I imagine is the answer. Still important stuff to keep in mind.

I think what's most important is that you love and your respect your child, even while protecting him. That means listening to him when he expresses his feelings about how you do what you do. If you do that, and are able to back off when necessary, they'll probably be okay.

(My mother was on the low end of the "overprotective spectrum." As a kid this bugged me, especially with interactions with other people. As an adult, I appreciate what she was trying to do, even if she was a bit overzealous at times.)

Re: Ask HN: My son might be blind – how to best support

#136

Post by miki123211 »

throwaway2037 wrote: post #102
miki123211 wrote: post #74

Congenitally blind person here, here are a few pieces of advice that I think are the most important. 1. Be the polar opposite of a helicopter parent. A lot of blind people end up extremely incapable as adults, because their parents were too afraid to let them learn anything that might have possibly been somewhat dangerous. Sighted kids can recover from this by watching how others do things, or, in the worst case, wat…

This is a great post. Thank you to share. First hand experiences like this are one of the best parts of HN. This part: > If you can find a way to teach your kid good white-cane skills without making them miserable, they'll be grateful to you forever. Can you go a little deeper on this one? What are some good ways vs bad ways to teach white-cane skills? Last: A question for myself. Sometimes, when I ride the subway, I…

re: mobility skills, basically what I wanted to say was "try making them want to learn instead of forcing them to learn."

re: subway, ask whether they need any help, don't be offended if they say no. Don't grab them. Even if you think they're doing something wrong, they may have a very good reason for doing things the way they're doing them.

Re: Ask HN: My son might be blind – how to best support

#137

Post by DanielleMolloy »

jesterswilde wrote: post #131
DanielleMolloy wrote: post #79

Earlier quoted context omitted.

Thank you for sharing. I'm in research that is somewhat attached to the technology side and find 2) particularly interesting. Did you ever look into electrotactile tongue display units? What is your opinion? I'm curious about what neuralink will present soon. Musk mentioned "atari graphics" recently, so they probably will for now only focus on generating phosphene-based crude bitmaps in the primary visual cortex (whi…

I haven't ever even heard of electrotactile tongue display units. Got a link? I am generally more optimistic about technology if it's generally beneficial and not targeted at blind folks. If we just happen to ambiently benefit. Self driving cars and things like Neuralink fall into these categories. Blind folks are a small percentage of the population and we don't have a lot of money. So the incentives aren't usually…

The brand name I know is BrainPort, which gives you a 20x20 matrix with three intensity values (on, mid, off) on your tongue:

https://www.wicab.com/brainport-vision-pro

I found a few others while digging to find this again.

I can't say how well the translation of the picture into these matrices works, but expect these devices will also benefit from the research into the phosphene stimulation matrices, which (to the best of my current knowledge) have the same pixel matrix resolutions and thus the same problems to solve. A substantial part of the research aims at extracting meaningful pixel matrices from regular cluttered visual scenes through deep learning.

Re: Ask HN: My son might be blind – how to best support

#138

Post by coolspot »

gwbas1c wrote: post #96
ClawsOnPaws wrote: post #57

Earlier quoted context omitted.

Fellow blind person here, adding my own anecdote. I click and echolocate. I have two different kinds of clicks. A soft click for very immediate surrounding which I can do rapidly if I need to, and a loud click for figuring out large spaces which I don't use very often for relatively obvious reasons. They're quite helpful for me and especially in new unfamiliar spaces it's almost a reflex that happens on its own unles…

> rode a bike Wow, any chance you feel like explaining how you did it? Do you a small amount of vision or are you completely blind?

I guess you can ride a bike blindly on a large empty lot with some assistance from friends to keep you within.

Re: Ask HN: My son might be blind – how to best support

#140

Post by frogulis »

iteria wrote: post #56

I just want to second the person who said to reach out to your 0 to 3 program. It's extremely important because your child's blindness might be fixable. I was born blind. But it was because of nerve damage. I don't really understand what all the doctors did, but they managed to restore some sight in one eye by the time I was in 3rd grade or so. Enough to read if the book was close and the text large. By the time I wa…

That's a pretty incredible improvement. Was that from ongoing therapy over years, or did it gradually improve by itself after your childhood treatment?
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