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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

#141

Post by lynx23 »

squigz wrote: post #135
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 whe…

Whenever you think "not easy" remember that whatever it is, its far easier then what your disabled child has to manage. Whenever you, as a parent of a disabled child, think you have it hard, rememeber that that is just not true and you are exaggregating. YOU have it pretty easy, compared to your child. So please, dont pity yourself, its laughable and sad at the same time.

How do you know? If you ask yourself, is this perhaps too much? The answer is almost always "yes".

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

#142

Post by squigz »

lynx23 wrote: post #141
squigz wrote: post #135

Earlier quoted context omitted.

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 whe…

Whenever you think "not easy" remember that whatever it is, its far easier then what your disabled child has to manage. Whenever you, as a parent of a disabled child, think you have it hard, rememeber that that is just not true and you are exaggregating. YOU have it pretty easy, compared to your child. So please, dont pity yourself, its laughable and sad at the same time. How do you know? If you ask yourself, is this…

A blind child probably has it easy compared to some other children. Does that make their concerns or feelings less valid?

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

#143

Post by majewsky »

icepat wrote: post #87
Disruptive_Dave wrote: post #77

Earlier quoted context omitted.

> Reading the rest of the thread, you HN'ers are very blessed to be ignorant that such a program exists. By this logic pretty much every single person in existence is "blessed to be ignorant" of the thousands (more?) of potential ailments they aren't facing right now. Seems like a silly POV.

Yes? I don't see a problem with this line of reasoning.

"Ignorant" implies that they are actively avoiding this information. A less inflammatory choice of words would be "unaware".

For instance, it is extremely silly to consider non-Americans "ignorant" if they don't know US-only programs.

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

#144

Post by abridges6523 »

pvaldes wrote: post #119
navigate8310 wrote: post #61

Earlier quoted context omitted.

Instead of the sound clues triggering every minute, it may trigger on arrival of the person wearing RF ID or phone.

Unless there is a lot of blind workers in the room, much better, yep. Blind people at least should have a way to be able to evacuate a building with sound clues instead the traditional lights that turn up if there is a fire and are useless for them. The emergency lights are mandatory by law, but including emergency blips could be also useful for everybody in some areas where a lot of blind people are expected (or liv…

Where do you live that the fire alarm doesn’t have any sound?

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

#145

Post by fwip »

pvaldes wrote: post #115
fwip wrote: post #69

Earlier quoted context omitted.

Blind people don't have a big problem with bumping into furniture in their own home, much the same way you don't wipe out when walking from your bed to the bathroom in the dark. And instead of you getting 30 seconds of practice every other night, they navigate that way all the time. Also, a bunch of noise playing whenever you walk through your house sounds like a huge bother.

Is the refrigerator door open or closed? What about the drawers? Is the vacuum in the middle of the path? Blind people don't need to know this things, of course. Don't need anybody, and can navigate everything like champs. On the other way, would really do harm to be able to know this on advance?.

The reason this isn't a product that people use is because it sucks. Not because you were the first guy to think about the poor blind people.

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

#146

Post by steve_adams_86 »

Der_Einzige wrote: post #99
steve_adams_86 wrote: post #91

Earlier quoted context omitted.

Coping is quite literally necessary. It’s the same for people with cognitive or psychological disabilities. The world isn’t organized or structured with you in mind… You need to cope with the immediate challenges and find solutions, and often you need to cope with the psycho-emotional aspect of living in a world that often works against rather than with you. It’s difficult. Not coping is a recipe for a really bad tim…

I’m comfortable with it but most members of the various disability communities would not like me since, among other things, I strongly advocate for pre natal testing and elective abortion of people with serious issues like blindness. I think that being blind makes life not worth living. I’m extremely supportive of MAID and physician assisted suicidal for these exact reasons. “Coping” by telling those who don’t want t…

If I was blind I’d have a multitude of things worth living for. All of my senses have the potential of lifetimes of experiences, and so much is missed out on because I prioritize my sight so much.

I’m pretty sure I’d adjust quite quickly. Start playing music again, pay closer attention to my surroundings not directly in front of me, learn new ways to relate with my family and deepen our relationships, you name it.

It’s a loss, but it’s also an opportunity. Do I want to go blind? No, I’d rather not. Would I want to die? Not at all. I got almost 40 years in with sight already. Many don’t even make it this far with their lives in tact. I’m incredibly fortunate as it is.

I could die tomorrow entirely accidentally. I’d rather go blind instead. Absolutely.

Of course you’re welcome to your own perception and opinions on the matter. I just couldn’t disagree much more. I’m a little surprised I guess; I’m diagnosed with untreatable depression and I fully support assisted death for the right circumstances. Going blind has never struck me as one of those, though. Or having a disability, generally speaking. I am diagnosed as disabled. I’m pretty glad I was born this way rather than, say, not at all.

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

#147

Post by icepat »

majewsky wrote: post #143
icepat wrote: post #87

Earlier quoted context omitted.

Yes? I don't see a problem with this line of reasoning.

"Ignorant" implies that they are actively avoiding this information. A less inflammatory choice of words would be "unaware". For instance, it is extremely silly to consider non-Americans "ignorant" if they don't know US-only programs.

No, it does not imply that. Ignorant simply means "lacking knowledge". You're implying the separate term "willfully ignorant" means the same thing as ignorant. If it did, then willfully ignorant would be redundant, which it is not.

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

#148

Post by webspinner »

Well there are some things I would not prefer to say to you publicly. I'm also blind, I do agree with the things the other person said. I did not have a good experience in school growing up, and I do not want to put that on a public forum. If you want to provide a way I can get in contact with you, so that we can exchange messages, I can explain things about that. If not that's cool. Also, I'm just leavin it at I did not have a good experience here for multiple reasons, not the least of which my story is way, way too long to tell!

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

#149

Post by webspinner »

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'm so not curious about neuralink! Probably because in the past my parents have literally wanted something like this for me. I do not live with them now, but i have a feeling if they hear about it, it's something they're going to really, really push me to try!

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

#150

Post by webspinner »

tway_GdBRwW wrote: post #108
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 guess that might depend on how much you trust Musk.

About as far as I can throw anything, which isn't far.
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