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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

#91

Post by steve_adams_86 »

squigz wrote: post #85
Der_Einzige wrote: post #82

Earlier quoted context omitted.

I’m not blind or deaf, but the deaf community in particular has… a reputation… I worry that so much of these “communities” exist as a cope for a shitty lot in life. Deaf community in particular has elements which are very hostile to correcting deafness. And frankly, if I ended up going blind, don’t be surprised to find me lose the will to keep living if it’s uncorrectable. I wouldn’t blame anyone in this world who’d…

> I worry that so much of these “communities” exist as a cope for a shitty lot in life I mean... that's what they are, in some ways? I don't see how coping is a bad thing?

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 time. I think people without disabilities are uncomfortable with acknowledging the innate struggles.

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

#92

Post by tkuraku »

Thanks for everyone's input. I probably can't reply to everyone, but I'm going to read everyone's comments and take notes.

I'm in the U.S. and am in a birth to three program. We are seeing a neurologist, optometrist, etc. medically we are trying to do everything that makes sense. I'm just trying to figure out how to navigate this as a parent for my son to ensure he gets what he needs medically and otherwise.

Thanks again for all the input!

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

#93

Post by tkuraku »

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…

Thanks for your comment. That is a helpful perspective.

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

#94

Post by tkuraku »

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 encouraging. We are in the 0-3 program and will do whatever we can.

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

#95

Post by tkuraku »

ClawsOnPaws wrote: post #57
jesterswilde wrote: post #31

Earlier quoted context omitted.

Learning to understand the world around you via clicking isn't a natural or easy thing to do. I can't do it personally but have looked into it. For me the benefits didn't seem worth the time investment (plus I was older when I looked into it.) Learning to click to understand what is around you is, IMO, a viable thing to look into for your kid and decide if you want to undertake that training. Daniel Kish is the name…

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…

Very interesting. I'll keep that in mind going forward. Seems like it could be a valuable skill!

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

#96

Post by gwbas1c »

ClawsOnPaws wrote: post #57
jesterswilde wrote: post #31

Earlier quoted context omitted.

Learning to understand the world around you via clicking isn't a natural or easy thing to do. I can't do it personally but have looked into it. For me the benefits didn't seem worth the time investment (plus I was older when I looked into it.) Learning to click to understand what is around you is, IMO, a viable thing to look into for your kid and decide if you want to undertake that training. Daniel Kish is the name…

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?

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

#97

Post by tkuraku »

NotYourLawyer wrote: post #4

What does your pediatrician think?

This is a fair question. We are working with the pediatrician, neurologist, optician, etc. we are ina birth to 3 program. Definitely not just me worrying. There hasn't been aconclusive diagnosis yet, but like I said things are concerning.

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

#98

Post by jchallis »

Education for kids with special needs is one place where the best schools can be 100x a median school - it’s worth contacting the Perkins School for the Blind in Massachusetts to understand what resources you should be using now.

Speaking as a dad of kids with special needs, the goal is independent living with accommodations. What are the accommodations you can provide (cane, dog, Braille mastery) that maximizes the chance of long term independence.

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

#99

Post by Der_Einzige »

steve_adams_86 wrote: post #91
squigz wrote: post #85

Earlier quoted context omitted.

> I worry that so much of these “communities” exist as a cope for a shitty lot in life I mean... that's what they are, in some ways? I don't see how coping is a bad thing?

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 to be forced into insular communities that they’re betraying their only “family” is disgusting.

It’s the same thinking within aspie communities who like to pretend that Asperger’s isn’t actually debilitating or harmful. It is, and the world would be better off with a cure, not senseless separatism.

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

#100

Post by lhamil64 »

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've also been legally blind since birth, although I have a decent amount of usable vision. I'm not sure I 100% agree with your #2 statement.
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