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.
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.
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)
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/
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.
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
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.
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!
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
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.
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 :)
If he is only partly blind there may also be ways to make sure that visual brain development is supported
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...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
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.
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.
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.
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!
They're asking for support and advice from their community.
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.
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.
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!