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.
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.
No worries, I get where you're comin from. Nobody can truly understand what anyone else is goin through and we all have to use ourselves as proxies.
My daughter had a few disabled children in the same group during her kindergarden/school years. No more than one or two at the same time. It was always started with a proper explanation of the handicap and the problems and how to handle the situations. And after that there was just natural playing with eachother in the group. Children are wonderful at learning, accepting and adapting. It just takes a good teacher to lead them on the right path from the start.
I see the necessity good intentions behind it, but also believe this singling out can lead to developing this sense of shame the user mentioned.
The shame was my own issue of going from sighted to blind. A disabled person is singularly different than most other folks (although people with major disabilities are ~16% of the population.) The momentary discomfort of being singled out is just the price of admission and better than the alternative of people not understanding out how interacting with us or choosing not to.
Everything has failure modes. The idea, I think, is to get it out in the open up front, after which it is just the new normal that everyone accepts, rather than drag out discovering implications of the difference again and again as they uncover them.
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.
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 (which has been demonstrated to work years ago). I can't know what they are up to and believe / expect they are internally more ambitious about stimulating the higher visual system. But if it boils down to the phosphene bitmaps I expect TDUs (which have FDA approval, already seem to work well and don't require invasive surgery...) to become part of the discussion.
I haven't ever even heard of electrotactile tongue display units. Got a link?
I am generally more optimistic about technology if it's generally beneficial and not targeted at blind folks. If we just happen to ambiently benefit. Self driving cars and things like Neuralink fall into these categories.
Blind folks are a small percentage of the population and we don't have a lot of money. So the incentives aren't usually there to help us.
The brand name I know is BrainPort, which gives you a 20x20 matrix with three intensity values (on, mid, off) on your tongue:
https://www.wicab.com/brainport-vision-pro
I found a few others while digging to find this again.
I can't say how well the translation of the picture into these matrices works, but expect these devices will also benefit from the research into the phosphene stimulation matrices, which (to the best of my current knowledge) have the same pixel matrix resolutions and thus the same problems to solve. A substantial part of the research aims at extracting meaningful pixel matrices from regular cluttered visual scenes through deep learning.
I guess that might depend on how much you trust Musk.
I trust Musks ability to attract stupid money and hype towards highly beneficial technology and research goals.
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.
That's completely fair. Hopefully you've had technology help you. If so, more power to you.
The main crux of #2, for me, is that there is many technologies people push or suggest to me. They are often short lived, or buggy, or help in a handful of cases but not enough for me to rely on it and make it part of my patterns.
What tech have you found reliable and beneficial? Specifically I'm interested in new tech that has actually panned out in your estimation.
Thanks for sharing this perspective, it was very interesting.
Thanks for your comment. That is a helpful perspective.
Ref point 3 about high speed metal, moving to a place where things are in walking distance / less car centric could perhaps be a way to better enable independence?
Public transit is fantastic for my independence. Most other countries I've been to grant me a greater degree of freedom than I have here in the US. NYC is decent for this. Stop lights and subways help me a lot.
Of all the cities I've been to, Shanghai is where I've had the most independence (Tokyo and Osaka are tied for second.) I could often travel fully underground or using skyways. Subways everywhere that were easy to navigate. They had the blind lines on the ground, though they did sometimes run me into trees and parked bikes.
Yes, if you can afford it. Bussing is feasible, and some communities (not nearly enough) are good about providing or have non-profits that operate shuttles for those in need as well.
A typical suburb will often have apartments near retail areas, but residential districts without alternate transit options may as well be deep rural if your only option is walking through intersections without traffic lights.
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 was in late high school, I was able to get vision that was functionally enough that I didn't need any kind of accommodation. By late 20s, I had 20/20 vision (I mean in one eye, but that's all you need!)
It can be a long road, but the body is very use it or lose it, so starting early is so important. I still have some visual processing issues, but I need no support and I can even drive during the day. Technically at night too, but it's too iffy for me, so I avoid it at all costs. Not saying this is your boy, but I am saying that consulting with a professional is a good idea in case there's something that can be done even if it takes years to see the results.
That is incredible to read. It's one of the things which makes you stop thinking about all the awful things in the world and realise just how incredible modern science and medicine is.
That's encouraging. We are in the 0-3 program and will do whatever we can.
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.
Hijacking this to give advice critical for a baby who is only a few months old.
OP, are you in the US? Contact your states "Birth To 3" program immediately. You can get a Vision Specialist to come to your house. I imagine other countries have similar programs.
---------
Reading the rest of the thread, you HN'ers are very blessed to be ignorant that such a program exists.
> 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.
It's interesting how kids can adapt so naturally. We've got so many preconceived ideas about difficulties.
When I was young there was a deaf kid in our school. We just figured out communication as needed. Kids don't overthink things like adults do. The environment matters, but sometimes we should just let kids figure it out.
>We've got so many preconceived ideas
they're not preconceived, you didn't have them when you were a child. I think this points to the benefits to their own development (and then to the rest of us) that abled children get from disabilities being mainstreamed as much as is practical.
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/
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
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 unless I consciously try to stop it for social reasons. Just to add another datapoint. What works for one might not work for another, so there's a lot of trial and error involved in figuring out what works and what doesn't. This can be very frustrating sometimes but sympathy will go a long way.
Something I wanted to add, maybe this thread in particular isn't the best place for this but in general, I'm very lucky that my parents did not prevent me from doing things that others may have. For example, I climbed trees, rode a bike, and generally tried to do all of the things my sighted peers were doing. Naturally there were accidents, but not preventing me from doing those things, not preventing me from learning my limits, learning my balance and physical control, getting hurt and getting back up, I believe were absolutely vital to making me the person I am today. I imagine as a parent this can be very stressful or worrying, but I honestly do not believe I would be as independent now if I wasn't allowed to do those things back then. So unless it is absolutely certain that this is something that they will not be able to do at all, maybe consider letting them try it. It will absolutely help confidence, self worth and skills for later independence that are very, very, very badly needed and very easily missed. I'm not a parent however, so of course take this with a grain of salt. My experience may be slightly biased here.
What age did you start learning to echolocate and how long did it take?
I alluded to it in my other post, but I fully agree with your sentiment around independence and figuring out your own boundaries. Even if I'm all but guaranteed a bit of pain along the way.
> 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?
Very interesting. I'll keep that in mind going forward. Seems like it could be a valuable skill!
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
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 <garage door> 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.
Systems like that have existed for decades in various versions. The only blind people who use them are people who went blind as an adult - and then often only the investor. People who went blind young have learned to deal with the world and discover technology like that is more annoying than helpful.
Dogs and canes work very well and solve most of the problem. It doesn't really matter if they are walking into a wall, piano or door - they need to know to avoid it. If you want useful sounds require every traffic light to have beeps when it is safe to cross loud enough to be heard across the street - because that is a real problem blind people have in navigating. Most of the rest of the world is forgiving to the types of mistakes blind people make and so they don't really need help.
The other way you can help the blind is just be willing to give directions from the sidewalk in front of a building to the front door.
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 live).
Blind people should be given the opportunity to evacuate a building or a school just by their own means, even if is alone or left behind in a emergency. You can't always rely on touching to orientate yourself if there is a fire. Specially metallic things.
Muzak but specifically for blind people!
Such an engineer's solution. :P
The glaring issue here would be standardization. Either every place uses the same sounds, or you have to learn a new system for each place you visit using this sort of thing. This is also why you couldn't change notes regularly, which would be boring and repetitive for everyone else.
The same instruments should be used for the same things everywhere. Yep. This is the idea.
Or at least to navigate a complex multistore building with a lot of repeated elements. I wonder if a videogame could be designed as a soundgame for blind people replacing images by sounds.
I'd be curious to hear why you and GP think technical solutions like this don't currently exist. Nobody thought of it? Cost? Effectiveness?
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?.
These products exists since the 80s. I have never seen one that is actually practical in real life. The elevator-pitch always sounds nice, to sighted people at least..
Please don't fall for this patronising attitude that just because you are a tech person, you can invent all sorts of helpful gadgets.
Educate yourself about the disability before giving advice or your great $0.02 ideas. They are always ment in a good way, but tiring for those who are in the know.
Ok
This episode of the podcast Invisibilia covers a man who teaches blind children the skill of echolocation: https://www.npr.org/programs/invisibilia/378577902/how-to-be...
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
Hah! Looks like we found the same article. Interesting other links too!
INdeed, I remember seeing a video of a guy that did exactly this. Impressive. https://www.youtube.com/watch?v=lAtVOK04XvA
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)
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 make that choice.
> 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.
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.
> 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 they're right to not want you around them, you sound odious to them and your ideas are very questionable. Where do you draw the line as there are various degrees of disability. What if you discover that you yourself already have a disability such as lacking empathy for example and while you adapted to your life well someone comes along advocating to terminate pregnancies with your condition?
The idea that people who advocate for harm reduction lack empathy itself lacks empathy.
I would 100% support a mothers right to choose, and if that meant that any one of us did not exist because of it, so much the better. A life not lived is guaranteed harm/suffering that didn't happen. This is consistent with negative utilitarianism, which is a better moral or ethical framework than any other. Also consistent with Jainism, which is the only religion in the world that means it when it preaches non violence (but is down with suicide)
A whole lot of the world believes in reincarnation (~1 billion people), and have advocated for positions similar to this in their extensive bodies of philosophies for millennia. The idea that we are not to help someone on their way to the next, hopefully better life is just as silly sounding to them as it is for me to go to the 1 billion+ abrahamites around the world and tell them that heaven/hell isn't real.
Simply admitting that some conditions make life not really worth living for a lot of people is not worth getting worked up over, especially when it bears out in data that blindness definitely does make people want to choose that option. I can't always blame them: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4624868/
Quoting the abstract
"Mortality was significantly increased in the visually impaired (SMR = 1.3; 95% CI 1.07–1.61), but in gender-stratified analyses the increase only affected males (1.34; 95% CI = 1.06–1.70) and not females (1.24; 95% CI 0.82–1.88)"
Most of the lack of increase in Mortality is explained by women trying and failing to commit suicide far more than men. I'm sure they tried more often too, but this was not explored in the paper.
From https://jamanetwork.com/journals/jamanetworkopen/fullarticle... (2024, systemic review/meta analysis):
"The findings of this systematic review and meta-analysis support the association between visual impairment and increased risk of suicidal tendencies. The risk differed by age group, with a pronounced risk observed among adolescents."
It is unpalatable to talk in such a direct way about these things, but like a lawyer who has the benefit of distance away from the problem of a client, I, fortunately am not blind, and this is sometimes a good thing. Insular communities can and often do have bad takes and need the rest of the world to hold them accountable.
> I think that being blind makes life not worth living.
Good thing you have no idea what you're talking about.
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.
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!
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)
I love how blind people are replying here. Had the privilege to interview a programmer who was blind once. It floored me how well this guy could work. The speed, the ability to hold code in his mind that had only been read once to him was astounding. He got bested by someone with more specific domain experience and I still regret not being able to work with him.
Programming/IT work is one of the only professional areas in which we can really shine, so it's not surprising there's a lot of us :)
If this is your first kid, keep in mind that the negative emotions you may be feeling are amplified a lot by all the exhaustion - physical and mental - a new baby brings.
FWIW, in one of my previous jobs, in a company with 1.5K employees, there was this engineering architect with great insights, deep understanding of the overall architecture, and true impact across the board. I would always follow the slack threads he was contributing to as there was always something to learn in there. It took me by extreme surprise when I learned he was completely blind.
I wish the best to you, your kid, and your family.
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.
Contact (and, if you can, visit) one of the top ophthalmologists in the world, as soon as possible. You cannot take a risk that your local doctor is good enough.
Starting point: https://www.willseye.org
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
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 :)
> I'm looking for resources, books, websites, etc
Have you tried looking for a blind community or support group in your area? By asking people physically near you who have experience with the matter you should be able to react and understand better than from a static resource and may develop a direct network you can rely on for support and questions.
But to answer your question more directly, “Far From the Tree: Parents, Children and the Search for Identity” by Andrew Solomon is fantastic and has a section on blindness.
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.
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.
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.
North Carolina has a school for the blind that was established back in mid 1800's. I believe they support all ages - https://www.governormorehead.net/
> … they support all ages…
I was unclear: The OP mentions an infant, and schools are for older-than-an-infant aged children. Schools will still be able to direct the OP to other groups and resources though.
Are they fully blind or can they see some things? There is a new line of thought called Cortical Visual Impairment. Its important to know the difference. Regardless, I find that holding my Childs hand is without a doubt the most reassuring thing I can give her in an unknown place. Your son will find his way, with love. Praying for your family.
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.
And yet, blind kids must learn to integrate into the mainstream world. And schools for the blind are few and far between; at least in the US, they're typically residential (boarding) schools. One option, if it happens to be feasible in the OP's area, might be for the kid to attend a school for the blind early on, then move to a mainstream school later.
Achieving integration & inclusion by putting severely disabled kids in normal schools is a fairy tale. Integrating into the world at large is a separate issue - you're not stuck with the same class throughout, you're not dependent on the same teachers. Arguably, you face some of those issues when you get a job but there's a much larger choice and the people around you are at least adults, in a hopefully professional environment. I just don't see the case for having to go through school as a definitive outsider and endure guaranteed bullying to somehow prepare you for the world better. Trauma doesn't prepare, it disables further. No idea where OP lives, alternatives will obviously depend on that and/or OP's ability move accordingly.
Are you a blind person or a parent of a blind person? I'm inclined to give your position more weight if so. I'm legally blind (with some usable vision).
If we want disabled people to not be treated as outsiders, then it seems to me that disabled people need to be integrated into as many aspects of society as possible, including school, so that kids have disabled people as peers from as early an age as is practical. If some of us have to suffer the consequences of bullying or unfair treatment, then hopefully that's a temporary state, and the fact that more people have interacted with us from a young age is a step on the road to equality. Of course, the reason I can say that is that my experiences in mainstream schools were mild, in retrospect.
If blind communities are like some deaf communities, they may have a strong separatist bent which does indeed allow their child to avoid integrating with the rest of the world if they so choose. This is an option.
The blind communities I'm involved in don't have any such separatist bent that I'm aware of. If anything, perhaps we go too far in insisting on assimilating into the mainstream.
John Hughes deserves to be a pauper for what his films have done to American society. The way that American children have systemized and perfected bullying culture is disgusting and needs to have been shattered two generations ago.
Bullying to anywhere near the same extent as you see in America is so alien to most of the rest of the world. Do you know that nerds have the total opposite reputation in most of the third world compared to America?
Kids in school who are bullying blind kids are sick and deserve the full wrath of their superiors who ought to be catching this.
We should not just accept the idea of our youth being little shits. This is not a clockwork orange, and they are subordinate to us, not the other way around.
What a ridiculous take. Kids or adults don't bully because they saw it in the movies.
We live in the literal era of life imitating art and you think I'm off base?
You're off base. Sure there is a sort of "natural" instinct to play hierachy games and even for some to bully within all humans, but to imply that this isn't wildly skewed from country to country or culture to culture indicates that you simply haven't been exposed to one of the situations where bullying is cracked down upon.
It's quite rare to see "bullying" in the traditional sense within a lot of south east asia since the teachers are so shitty and strict, often there's an "us vs them" mentality that develops unique amount of camaraderie between students and teachers.
Bullying reasons are also totally different. "Four Eyes" and other stuff against glasses is super duper uncommon, again in Asia since almost literally everyone there now wears glasses. Go to South Korea and you won't be bullied for sitting in front of a computer all the time, but you certainly will for being fat.
But nerds getting shoved in lockers? The entirety of the "Krelboynes" in malcom in the middle? In poor countries, smart kids are seen as a one way ticket out of the hell-hole known as poverty and are often the most popular in their schools.
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).
I remember when my son was 3 months old. We had many concerns - he did not track objects as they moved across the room, he did not recognize me or my spouse whenever we had gotten a haircut or put our long hair up in a ponytail. Our pediatrician was dismissive because our son was sensitive to light. We pushed and pushed and got an appointment with a pediatric ophthalmologist. They were able to diagnose him pretty quickly with Oculocutaneous albinism because on top of everything, he was very sensitive to light.
The doctors we worked with have been amazing — he was fitted with glasses (he can see 20/200 with them on!). He had surgery for strabismus and for nystagmus when he was 3.
For whatever specific diagnosis you receive (if you receive one!), there are already a lot of resources for you. Occupational therapists are helpful to help meet milestones and adjust. When our kid got closer to school age, the school helped with therapists to take him on walks with a cane and even did pre-braille. Everything we've done is to foster independence in everything he's capable of doing. They took him to the grocery store with a monocular to help him identify things to buy. They helped find specific sunglasses that blocked out light. They helped with countless other things in his movement and activity that have allowed him to really excel in life.
For broader learning, one good starter resource is the National Federation for the Blind (NFB). They have regular publications that explore different scenarios of what it is like to live every day. Depending on your son's diagnosis this may be helpful, or there may be one more specific for your situation. For albinism there is the National Organization for Albinism and Hypopigmentism (NOAH), which is large and even has a yearly conference!
There are also countless Facebook groups and Reddit, which can be helpful to remediate daily issues, but also to get a really comfortable feeling for people who have grown up with blindness and what their lives are like.
My son is now 10 and for the most part, he's not really defined by his disability. He knows it's a key part of who he is, but he has figured out what works for him. He has to wear tons of sunscreen outside and cannot remove his sunglasses on a sunny day. He uses his cane sometimes, and decided not to learn braille. He sits at the front of his classes and sometimes needs something in larger print. He reads a ton, excels in school, and makes friends just like any other kid. He's really a joy to be around, and all the work that he put in when he was younger was absolutely worth it.
Look into the history of blind clicking/echo location, there are many reports on it like this:
The gist seems to be that mainstream culture discouraged blind children from interacting this way and contributed to their disability, the ability of the human mind to figure things out is incredible and I would consider this a compelling approach if it looks feasible.
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!
Cool. How do blind people navigate while riding bikes?
I hope things work out as well as they can for you. I don't have experience with your situation but wanted to offer one suggestion of a resource for help if you are in the US. Before getting connected with them, I was completely unaware of what early intervention services were provided by our county. They have been an enormous help but most importantly, they are a great set of professionals who do everything possible to help the children in their care.
We were in a similar situation, but it turned out he just needed glasses. What do the eye doctors say?
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
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
I cant and wont talk about blindness. I'll say a thing or two about living with disabilities though. My friend's kid and my own kid's.
My best friend's kid has some neurological thing that stumped his ability to control his left half of his body. Without therapy, this results in muscle atrophy from lack of use.
My friend very bummed out about it. But I told him not to worry [1]. Specifically, with the right therapy and proper attention from the parents, the kid was going to end up being the toughest of the three boys.
Long and behold that kid is eight, trying out for soccer for the nine year olds and my buddy told me that the kid is the toughest of three.
Lesson: you cant make the disability go away, but if you have the right support they can help mold you into someone better.
My kid is allergic to everything (including contact anaphalaxis). His diet is very specific.
I wield the threat of the ADA as a bludgeon against anyone who tries to exclude him by not being reasonably accommodating. Out if fear, my wife considered pulling him out of day care [1], but I refused. First we couldn't afford being on one income, second he needed peers and was turning two.
He's doing very well in day care. He's a social and charming little bugger. We worked out that he cannot have lunch with the other kids and he is aware.
Once a month my wife makes lunch for the whole class. Then he can sit w/ everyone and he comes back with a big smile ranting about how he sat next to his buddy or girlfriend.
He's only three but he's starting to understand that he has a personal challenge he has to manage and start taking responsibly (i.e. the day he stole a cheese puff he ended up vomiting and in the ER)
Lesson: always go for bat for the kid. Never accept that he's unreasonably excluded or accommodated. Don't be afraid. we've probably put in 100 hours of time just on accommodation for him thus far (last year and a half).
Lastly, we know a family that has twin, teenaged, severely autistic, boys. No matter how bad it gets, I always remember that I have it easy.
[1] Both my wife and friend are the real stoics roll with life's blows types. Im not at all stoic, but I learned a bit from them. I was only reminding them what they already knew. Difficulties can be opportunities to grow.
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
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, watching some tutorials on Youtube, we don't have that luxury. Beware of the sighted specialists that encourage these protectionist attitudes, which we unfortunately have plenty of.
This stuff is genuinely hard, my parents actually tried pushing me to learn, but I never really had a motivation to do so, so I mostly didn't, and then had to deal with the consequences later. I figured it out and basically ended up fine, but many in my situation would probably have been stuck at home forever.
If you can find a way to teach your kid good white-cane skills without making them miserable, they'll be grateful to you forever.
2. Most blind people eventually end up unemployed, because there aren't that many blind-friendly jobs to go around. The best chance of getting a well-paying job is being somewhat good at tech, and trust me, blind people need to be a lot better at tech than the sighted to use it effectively. You can't just pick up a smartphone or computer and "wing it", you need to actually learn how a screen reader works. Then there's the inaccessible software to deal with, and to do that, you need to understand all the weird features that your screen reader can offer. It's a good idea for parents to encourage tech use. Mine were extremely hands-off about the internet and what I did on it, and I genuinely believe that it's the single best decision affecting my life that they've ever made.
Keep in mind that, to a blind person, a smartphone is not "just" a smartphone, it's also a way to communicate with other blind people around the country / world (and there are few enough of us that just meeting your friends in-person isn't often an option). Not to mention the apps for reading books (which are important because many books never get released in Braille), detecting colors, describing things, reading text on paper documents / labels, interacting with kitchen appliances that otherwise wouldn't be accessible, checking train/bus schedules that you wouldn't otherwise be able to see and so on. With that said, a phone definitely does not replace a white cane, and probably never will.
3. Avoid blind schools for as long as you possibly can, preferably forever. Go mainstream if you have the option. No idea what country you live in, but the idea applies in most places.
4. Encourage forming friendships with sighted people. Make them aware of the blind community, definitely, but don't let them get stuck there. This is hard, far, far harder than it would be with a sighted kid, but it should be a priority, and you should do everything within your power to make this possible.
This is a great post. Thank you to share. First hand experiences like this are one of the best parts of HN.
This part:
> If you can find a way to teach your kid good white-cane skills without making them miserable, they'll be grateful to you forever.
Last: A question for myself. Sometimes, when I ride the subway, I see a blind person trying to navigate the station, platform, and train doors. Usually, I hang back a few meters to make sure they are OK. If something goes wrong -- they are a bit misoriented, what is an polite way to break the ice and offer help? (Ignore any language barriers.) I would like to hear what works well for you.
re: mobility skills, basically what I wanted to say was "try making them want to learn instead of forcing them to learn."
re: subway, ask whether they need any help, don't be offended if they say no. Don't grab them. Even if you think they're doing something wrong, they may have a very good reason for doing things the way they're doing them.
Seconding the other commenter: if you think we need help, just come up and simply ask if we need some help. We'll appreciate the offer, even if we don't really need help.
Maybe a couple of other pieces of advice might be: 1) don't touch them without saying something first (this can be very startling) and 2) don't be patronizing about it
Blind people aren't as thin skinned as you imagine. Simply asking them if they need assistance is okay. They'll tell you if they do.
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.
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.
I am sure that you have already discovered this resource but just in case...
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?
Somewhat related or some ideas could be useful - https://news.ycombinator.com/item?id=22918980
Have you had his vision checked? It could be treatable. Don't just let it go.
Do you honestly think OP didn't?
What does your pediatrician think?
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.
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.
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.
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.
In some places babies get a hearing test by default, definitely took one thing off our list of worries.
> 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.
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.
Guessing you guys played Vannu cus there is no way that legally blind people were seeing their shadowy asses in night battles!
"might" in OPs case suggest otherwise.
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.
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.
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).
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 when he expresses his feelings about how you do what you do. If you do that, and are able to back off when necessary, they'll probably be okay.
(My mother was on the low end of the "overprotective spectrum." As a kid this bugged me, especially with interactions with other people. As an adult, I appreciate what she was trying to do, even if she was a bit overzealous at times.)
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
I have a child that's very disabled in a different way. Take what victories you can and try to practice detachment, because you're not in control and deluding yourself into thinking you are is a road to a whole lot of pain.
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!
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.