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.
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.
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.
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 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.
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.
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.
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.
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.
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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.
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.
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.
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.
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 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
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.
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
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.
Also, a bunch of noise playing whenever you walk through your house sounds like a huge bother.
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.
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
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.
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 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 mean... that's what they are, in some ways? I don't see how coping is a bad thing?
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!
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.
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.
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.
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
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 :)
Starting point: https://www.willseye.org
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.)
How do you know? If you ask yourself, is this perhaps too much? The answer is almost always "yes".
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.
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!
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 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.
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.
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.
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!
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).
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
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
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.
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.
If he is only partly blind there may also be ways to make sure that visual brain development is supported
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.
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.
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.
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.
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 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.
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
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.
They're asking for support and advice from their community.