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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

#41

Post by tomcam »

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…

I have a couple of handicapped kids and definitely vouch for #1. When the first one was born, my wife agonized about whether we should spoil that child because of the handicap. My answer was resounding no. We would simply deal with it, and the kid would have to understand that there were certain limitations. This was tough for my wife, but she acceded. It worked out well.

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

#42

Post by widforss »

xkzx wrote: post #39

I used to volunteer in a youth camp where some of the participants were blind. As a challenge, everyone spent at least a day blindfolded. Me as well, and to be honest, I got the hang of it relatively quickly. Within 4-5hours I could navigate the building, eat, go to the toilet etc. and my other senses got more keen. It was truly an interesting experience. Not all is bad. You might not know what it is like, so I sugge…

Cool. How do blind people navigate while riding bikes?

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

#43

Post by samarthr1 »

ultrasounder wrote: post #10

https://www.sankaranethralaya.org/ The one in Chennai is roughly 40 years old. They should have a "appointment booking" available right there on the landing page. They perform full-on keratoplasty a.k.a Corneal Transplant. But like the other poster said, please consult your pediatrician about other options as You are dealing with a toddler. Best wishes and hugs. wishing you and your wife all the very best.

Can second these guys. They helped my sister get better vision (she had nerve damage as a infant)

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

#44

Post by pvaldes »

bnjemian wrote: post #28

I once read that some people who are blind from an early age, as they get older, start to click their tongue, but often those around them (parents, siblings, etc.) will discourage them. Thing is, that clicking can actually be used to develop a type of vision that operates similarly to echo location in cetaceans (whales, dolphins, etc.) – it comes about because the child realizes that if they make a sharp sound, they…

Blind people could benefit of carrying one or several ultrasonic sensor like those used on cars to park. That would emit soft bleeps, faster when something is on the way or closer to an obstacle.

Can be built easily with an Arduino

I think that another possibility could be to fill your home or workplace with those devices put on walls or furniture. The idea would be that your table could say to you "lookout, I'm here" when you are about to crash against it. Use it first in the areas that were more problematic. The volume of the bleeps should be reduced to a low comfortable whispering level so they don't annoy the user. I wonder why nobody has created still a kitt providing a soundscape for blind people. That product should have a different click sound for each object marked in the soundscape.

Another possibility would be a snapshot soundscape, where a remote control could turn on/off the system only when necessary providing the blind people with a mental picture hearing all the blips at the same time and its position respect to the other blips. Like a cane, but covering much more distance

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

#46

Post by lynx23 »

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 time and space to figure out what you can do and what you can't do. But parents have this tendency to protect so much that the child can never find out what they are good at. PLEASE, let him grow and and take risks. He will grow by being allowed to take risks. If your wife has over-protective tendencies, speak to her, make her understand. I can not emphasis enough how important that is. In fact, we have a saying in the blind community: "Parents exacerbating the disability" (Zusatzbehinderung Eltern).

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

#47

Post by fb03 »

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 advice is generally helpful - overprotective parents or caretakers will always stunt a kids growth. Have personal experience in distancing myself from a parent and it greatly improved my wellbeing and my ability to learn/grow/take risks

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

#48

Post by red_admiral »

I don't have any resources specific for blindness, though I know a few people who are blind and still have a great quality of life. I have my thoughts on the "disability is not a disadvantage, just another way of being" crowd because that doesn't work for my own situation, but for blindness, I can see the point they're making.

There's that old study that looked at what kind of parents give their children the best start and success in life, and after some factor analysis, the single most important attribute was "loving". Disability doesn't change that.

You might find Matt Might (of "illustrated guide to a PhD" fame) comforting on the topic of having a disabled child in general: https://matt.might.net/articles/tenure (despite the title this post is not primarily about tenure).

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

#49

Post by pvaldes »

pvaldes wrote: post #44
bnjemian wrote: post #28

I once read that some people who are blind from an early age, as they get older, start to click their tongue, but often those around them (parents, siblings, etc.) will discourage them. Thing is, that clicking can actually be used to develop a type of vision that operates similarly to echo location in cetaceans (whales, dolphins, etc.) – it comes about because the child realizes that if they make a sharp sound, they…

Blind people could benefit of carrying one or several ultrasonic sensor like those used on cars to park. That would emit soft bleeps, faster when something is on the way or closer to an obstacle. Can be built easily with an Arduino I think that another possibility could be to fill your home or workplace with those devices put on walls or furniture. The idea would be that your table could say to you "lookout, I'm here…

Hum, that last idea deserve more time

I want to propose this system. Imagine that you are on a workplace where blind people came often to work or as clients. There is a soft, low, slow and sparse music that is pleasing to hear as a background for anybody and is always changing.

Now lets imagine that this music is codified and played on a 3D system.

Every time we hear a piano note it means "door here", all bass notes mean "danger/stairs" and a flute means for example "WC". That would be awesome for blind people navigating new places without interrupting other workers asking for directions. Each one of this signals would be played on intervals of one minute or more, never less, so most of the time you have either silence or pleasant sounds that don't bother other people and the notes played by a particular instrument are changed each time for the same reason.

If we need more information, we could add short cords from popular music to convey additional words. For example a could play on piano the four note sequence "here on my car" from Gary Numan, or iterate over a list of similar parts of very popular songs with the word "car" on it to not be too repetitive.

Of course it just could also just say "garage door" when a modified white cane approach like on elevators, but that could be distracting for non blind workers.

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

#50

Post by PaulRobinson »

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…

Without wishing to minimise the very real, very serious consequences of your blindness, your points sound familiar to somebody who suffers from severe anxiety.

People being overly protective makes things more confusing. Technology (including many medications), often don't really deal with the root cause, but some things do help (like talking therapy and some meds). Independence can be challenging, going outside can be challenging, going outside can be a deeply uncomfortable endeavour, and yet getting on with life is important and so we keep moving.

I'm sure blindness sucks in ways I can't easily empathise with as a sighted person, and so it's not anything close to a reasonable metaphor, but I feel I empathise with a sense of discomfort, anxiety and confusion. I never thought it would be the same. Thank you for sharing, and keep moving.

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