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tkuraku | 45 comments

isoprophlex|next|

I have, I think, no real expert advice to offer you. Except this small anecdote.

One of the kids in my 4-year old son's class is blind. I went along for a day to help out on a school trip to some massive playground, which involved loading 60 kids into a bus (they usually walk/bike to school, so not everyone was used to the idea of large buses); keeping track of them in the playground, feeding them, etc etc. Lots of potential for disaster, haha.

Throughout the day, it struck me that for the most part this blind kid was just another kid amongst peers. It was very wholesome to see the kids understand his limits instinctively, help him out whenever needed but mostly just bantering and playing alongside him.

I never gave these things much thought before, but observing this I saw the importance of having quality, supportive peers to interact with. I hope you can find a supportive, nurturing environment for your boy: one that highlights and reinforces his strengths, not his weaknesses.


jesterswilde|prev|next|

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 from 'being the blind kid'. But I was. Not knowing made everything so much harder and more confusing.

2) Don't rely too much on technology. Stick and dog are the best tools blind people have. Everything else, in my opinion, is a flash in the pan and won't have long term support. Not made by blind people and with minimal consulting for them. Like what a sighted person thinks a blind person needs after closing their eyes and walking around their house for a few minutes. (Screen readers are useful, I'm not talking about those.)

For a piece of tech I was excited for and is now dystopian: https://spectrum.ieee.org/bionic-eye-obsolete

3) Foster independence. The world is not made for us. It's also full of high speed metal deathtraps. The easiest thing to do is stay inside where I know where everything is. Even walking to the grocery store is a deeply uncomfortable endeavor. But I need to do it. I need to be able to live with that discomfort and not let it dissuade me from living the most human life I can.

The blind cane is very valuable. It took me too long to accept blindness as an identity, get over the shame, and start using it. I lost a lot of time to that.

Blindness sucks in every conceivable way. It affects every part of ones life. But I had a good childhood and I have a good life. All things considered, I'm extremely lucky for the circumstances of my birth because of the family I was born into. You can't take away the blindness but you can still give them a wonderful life.


tomcam|parent|next|

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.

gautamcgoel|parent|prev|next|

Thanks for sharing this perspective, it was very interesting.

vismit2000|prev|next|

Somewhat related or some ideas could be useful - https://news.ycombinator.com/item?id=22918980

squigz|prev|next|

I won't speak to functional support - there's plenty of responses here and even more resources easily available for that sort of advice.

But I would like to talk on how you (and others) approach this disability. There's a lot of commenters saying things akin to "blind people can lead a perfectly normal life, especially with all this tech!" - and I'm not saying a blind person can't lead a relatively normal life - but that sort of rhetoric can easily be misused to dismiss very real concerns we have, usually by able-bodied people. And it hurts. It makes you feel like you're the one in the wrong for complaining about being blind.

Being disabled in this way is *hard*. Do not pretend otherwise. Do not act like he's being unreasonable or ungrateful if he complains about his lot. Let him vent about it.

(I am not saying every disabled person should feel sorry for themselves all the time at the expense of personal responsibility. Nor am I saying every disabled person always feels this way. Just my own experience and that of many other disabled people I know.)

(I will mirror one piece of advice another commenter gave: make sure he gets involved with the blind community, at least at a young age, so he knows that's an option)


bnjemian|prev|next|

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 can begin to orient themselves with the reflections of the sound waves. After all, vision is in the brain; the eyes are just the sensors. Point being, if your son starts making clicking sounds with his tongue, you likely won't want to discourage that. And on the flip, teaching him to click may provide a means of developing his vision in an alternative way.

Edit: Here's a Pubmed article on a study where blind and sighted people were trained to echolocate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8171922/


pvaldes|parent|next|

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.


jesterswilde|parent|prev|next|

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 of the guy most famous for it and would be a decent place to start looking.

An amusing anecdote and a bit of blind throwing shade a blind: https://youtu.be/u-7w3m7fhl4?t=326


upwardbound|parent|prev|next|

Yeah! Some reference info about this amazing approach:

Human click-based echolocation: Effects of blindness and age, and real-life implications in a 10-week training program https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8171922/

Human echolocation lets blind man 'see' (CNN video) https://www.youtube.com/watch?v=WHYCs8xtzUI

Human echolocation - Wikipedia https://en.wikipedia.org/wiki/Human_echolocation


bnjemian|root|parent|next|

Hah! Looks like we found the same article. Interesting other links too!

burningChrome|prev|next|

Hopefully this will get you started in the right direction:

Braille Institute of America: Understanding vision loss can be challenging — and scary. It doesn’t have to be. Explore resources about symptoms & conditions, and get connected to ways we can help. https://www.brailleinstitute.org/

American Foundation for The Blind: Since its inception, the American Foundation for the Blind (AFB) has served as the leading source of information and research encompassing blindness and low vision in the United States. https://www.afb.org/blindness-and-low-vision

Technology Tools for Children with Low Vision: For children who are visually impaired, technology can play a big role in reaching developmental milestones and closing learning gaps. https://www.aao.org/eye-health/tips-prevention/technology-ap...

I work as an accessibility engineer so I work with and help people with disabilities every day. Let me know if you need any more resources and I'd be happy to send more.


xkzx|prev|next|

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 suggest you try it yourself. Of course, you will need other people that see around you that day, but it will sure give a closer perspective to what your kids life might be.

Once in a while I still meet one of the blind kids from the camp (he is 22 now, he was 14 then) and I have to say that he is truly amazing. He echolocates, rides a bike, finished University studying law. went to US, learned English there. Now he wants to know Russia better, so he is going solo on the Transsiberian express. Just to see what it is like.

Best of luck!


widforss|parent|next|

Cool. How do blind people navigate while riding bikes?

TriNetra|prev|next|

treat him normally and let him explore the world with other senses. Such senses (especially hearing) in us develop with greater capability than others. Blindness isn't a difficult thing to live with in this age of high-tech, specially when one is blind from childhood, as one doesn't need to carry a baggage of emotions of suffering and has enough time to learn and build one's own path.

Make him also meet with fellow blind children and be part of the community once he's grown to a few years old. With them he'll experience the greatest ease.

Give him toys and tech with audio/haptic feedback and not necessarily ones which look extravagant in appearance.

Best of luck


ultrasounder|prev|next|

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.


samarthr1|parent|next|

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

magnetowasright|prev|next|

Disclaimer: I am not blind, but I am disabled.

Does your region have any Blind-run blindness or vision impairment advocacy organisations, big or small? Local groups? Groups/organisations by the blind will be able to recommend all sorts of resources for your family. Online communities for the blind can help suss out which resources or groups are helpful (or harmful!), too.


moi2388|prev|next|

Sorry to hear this. I have no experience with blind people, but if I had a blind child I think I would at least during certain interactions keep my eyes closed or covered, to at least better understand his/hers perspective, and have a shared context.

Having said that, we live in a time where there are lots of treatment options and aids, so I’m sure he’ll be able to have all the experiences non-visually impaired children might have :)


hsbauauvhabzb|prev|next|

You may be interested to search historic HN threads. Iirc, there are at least a few posters who are (substantially) visually impaired on here who share incredibly insightful information.

jacobgorm|prev|next|

We were in a similar situation, but it turned out he just needed glasses. What do the eye doctors say?

ajb|prev|next|

Hmm I'm far from an expert but no-one else had commented on this aspect: it's not just about how they take in information, it's about how the lack of sight will affect their development. So worth thinking about what the different things your son needs to learn developmentally at each point and whether you can support that with sound, smell and touch. There are some academic articles on this that can be found on Google scholar.

If he is only partly blind there may also be ways to make sure that visual brain development is supported


upwardbound|prev|next|

There's a Google Glass reseller + app maker called Envision, which lets you use Google Glass's camera and speaker to have the computer explain what you're looking at.

https://shop.letsenvision.com/products/glasses-home

    features: Instant Text, Scan Text, Batch Scan, Call an Ally, Call Aira, Describe Scene, Detect Light, Recognise Cash, Detect Colors, Find People, Find Objects, Teach a Face, Ask Envision, Explore and more
https://www.businessinsider.com/envision-glasses-chatgpt-goo...

upwardbound|parent|next|

Not sure why this is downvoted. I know your son is just a baby but my whole point in posting this is to illustrate that with today's tech, he won't have to grow up being less independent than other people.

One of my friends even came up with a UX that could, if built into smartglasses, someday allow blind people to drive:

https://www.cs.columbia.edu/~brian/projects/rad.html

I feel like it's nice to give people hope


novia|prev|next|

I worked with a blind programmer one time, and I saw firsthand that there is lots of room for improvement in the technology available for blind people. Since you seem to be a programmer yourself, maybe you could contribute to making these tools better so your son can grow up into a better world?

benmaraschino|prev|next|

This book isn’t specifically about how to best support a blind child, but it might still be of interest.

https://en.wikipedia.org/wiki/Far_from_the_Tree

Either way, I hope for nothing but the best for you, your son, and your family. It’ll be tough, but you’ve got this and your son is lucky to have you as a parent.


hilux|prev|next|

It's a whole world. There are online communities of blind people who will give you excellent guidance.

One person to follow online may be: Josh Miele

You sound like a supportive parent, and I'm sure your son is lucky to have you in his camp. Good luck.


raylad|prev|next|

Have you had his vision checked? It could be treatable. Don't just let it go.

squigz|parent|next|

Do you honestly think OP didn't?

madaxe_again|prev|next|

A whole bunch of folks here talking about your son, which is fine, because that’s what you asked about - but from experience with friends and family members with disabilities, and friends with kids with additional needs, the people who will need the most help are you and your partner, if you have one.

As I’m sure you’ve gathered by this point, a kid is a lot of work. A kid with additional support needs is a lot of work. I’m not just talking about physical labour, but emotional labour. It is hard to watch other kids develop “normally” and see your own struggling, through no fault of their or your own.

I strongly, strongly recommend that you seek therapy to talk this through with someone who knows the territory.

Help yourselves, it will help him more than you can know. You will also find that a good therapist with the right specialisation will be able to give you much, much better advice than us internet hobos.

Good luck.


jay-barronville|prev|next|

As a dad of a toddler myself, my heart goes out to you. I can only imagine the range of emotions you must be experiencing, and I can see your love and concern for your son shine through your post.

My only advice to you would be to make sure you take him to multiple ophthalmologists before accepting such a diagnosis—get at least a second and third opinion. Actually, I’m begging you to do that, because even if there’s a problem, it could be treatable.

Other than that, I have no specific advice I can offer here, but my wife and I are going to pray for your family. We wish you strength!


NotYourLawyer|prev|next|

What does your pediatrician think?

khazhoux|parent|next|

Because we respect our fellow HNers, there should be no doubt that OP did (or is about to do) the literal most obvious thing of consulting with a pediatrician.

They're asking for support and advice from their community.


glitchc|root|parent|next|

I don't think it's impolite to ask a clarification question. Parents with their first child often have unrealistic expectations of development milestones. We want to get that out of the way first. Crucially, the OP has not provided a diagnosis (source of blindness), which one would get after soliciting medical advice and conducting tests.

khazhoux|root|parent|next|

The comment read to me as disrespectfully implying to check with a pediatrician as if OP hadn't already. But ironically... perhaps that was my own disrespectful reading of the comment.

smugma|root|parent|prev|next|

I have a friend who got his first daughter a hearing test. The audiologist delayed the test twice until he finally gave up.

His daughter was able to hear instructions like “go get your socks” but since she was two and not talking, they leapt to the conclusion that it was probably hearing related.

Three years later, I still make fun of him for it but at the time I tried to keep a straight face.

Ironically, he’s a medical doctor himself.


avh02|root|parent|next|

In some places babies get a hearing test by default, definitely took one thing off our list of worries.

jay-barronville|root|parent|prev|next|

> Parents with their first child often have unrealistic expectations of development milestones.

This is a great point. There were several instances when either me or my wife (or both of us) thought something was wrong with our baby, until we consulted with our pediatrician, who would laugh and then calmly explain why we were jumping the gun. Haha.


strken|root|parent|prev|next|

It's important to know what the level of impairment is in order to give advice. As an example, I used to play PlanetSide 2 with two legally blind people who could still get more kills than me and with one other who could sit in a tank turret and shoot at the coloured blobs, so "blind" could mean a broad range of ability.

glitchc|parent|prev|next|

Concur. It's not clear how you reached this conclusion, definitely talk to your pediatrician. It can take a baby anywhere from 4-10 months to be able to focus their eyes on any object more than 6-8 inches from their face. Most kids start to focus around 6 months, but a delay in and of itself does not indicate an abnormality. If the pediatrician sees a cause for concern, they will refer to a specialist who can conduct tests.

blackeyeblitzar|prev|

I hope there are future technologies that can help. For example:

https://x.com/elonmusk/status/1836120537883644049

> The Blindsight device from Neuralink will enable even those who have lost both eyes and their optic nerve to see.

> Provided the visual cortex is intact, it will even enable those who have been blind from birth to see for the first time.

> To set expectations correctly, the vision will be at first be low resolution, like Atari graphics, but eventually it has the potential be better than natural vision and enable you to see in infrared, ultraviolet or even radar wavelengths, like Geordi La Forge.

> Much appreciated, @US_FDA!