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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

#161
post #67

There are whole communities with lots of great info. Two that I know of personally (for older kids): Perkins School for the Blind https://www.perkins.org/ Texas School for the Blind and Visually Impared https://www.tsbvi.edu/ There might be a school closer to you. I would not hesitate to reach out to them… They’ll point you to other groups in your community.

I would also suggest not institutionalizaing someone, unless it's really necessary when the kid is older.

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

#162
post #63

Normal schools are not appropriately prepared for blind people. They're bullying hells for blind kids (from social exclusion to assault) and the lectures heavily rely on vision, so a blind kid will be left behind even when he makes audio recordings (can't write braille fast enough for useful notes), which some teachers may even take issue with, for extra drama.

Well, I was in public school from 6-18, and loved it!

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

#163

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…

Yes this is also what happened to me. My mother was a perfectionist! Also, bad TVI who was a perfectionist. On top of chronic migraines that presented in adult hood. So yay for me!

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

#164
Two good support resources are insurance and investment. You may not be around to help your son grow up and at some point he'll have lived longer than you. Insurance, both medical and life insurance as well as long term care, could help a lot when/if you're not around. A source of income is needed to pay for the insurance and the necessities of life, so starting a trust with some investments to help fund your sons later life could give him a great advantage.

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

#165

Earlier quoted context omitted.

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?

Could you find the exit currently following that sound?

Can those alarms redirect you on real time to a secondary route to escape if the main is burning or blocked?

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

#166
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?

Once I got any vision, it was just gradual improvement. The issue is that I missed the critical period for vision so my brain was just spectacularly bad at understanding the world and very slow about learning how to get better. Every year my brain figures out how to process the world a little more. I've always had 20/20 vision technically. There's nothing wrong with my eyes except that my optical nerves are scarred.

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

#167

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…

Thanks for sharing this perspective, it was very interesting.

Seconded. I read everyone’s comments here and found them all very informative.

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

#168

Earlier quoted context omitted.

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

Could you find the exit currently following that sound? Can those alarms redirect you on real time to a secondary route to escape if the main is burning or blocked?

Oh I see what you are saying. My bad
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