My son might be blind. He is only a few months old but things are concerning. I'm looking for resources, books, websites, etc to learn how to best support a blind baby, toddler, and beyond. Any help would be appreciated.
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.)
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.
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.
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.
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.
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?
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.
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Reading the rest of the thread, you HN'ers are very blessed to be ignorant that such a program exists.
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.
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 a pretty incredible improvement. Was that from ongoing therapy over years, or did it gradually improve by itself after your childhood treatment?
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.
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.
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
Well I didn't do this automatically, that's for sure. It was something my mother saw on TV and said you should start doing that, I was like uh no that's weird.
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
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.
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.
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.
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.
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.
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.
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.
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 :)
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.
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.
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
You said part of what I wanted to say, thanks! TO try and make a long story very short, I too have a very overprotevtive mother. I'm in the process of trying to deal with that through therapy, but in the end, I think I'm just going to have to break off contact, which is what I did in 2015 for a bit.
Well there are some things I would not prefer to say to you publicly. I'm also blind, I do agree with the things the other person said. I did not have a good experience in school growing up, and I do not want to put that on a public forum. If you want to provide a way I can get in contact with you, so that we can exchange messages, I can explain things about that. If not that's cool. Also, I'm just leavin it at I did not have a good experience here for multiple reasons, not the least of which my story is way, way too long to tell!
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.
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!
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.
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.
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.
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.
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).
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.
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:
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.
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.
Two good support resources are insurance and investment. You may not be around to help your son grow up and at some point he'll have lived longer than you. Insurance, both medical and life insurance as well as long term care, could help a lot when/if you're not around. A source of income is needed to pay for the insurance and the necessities of life, so starting a trust with some investments to help fund your sons later life could give him a great advantage.
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
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.
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.
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 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.
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.
Just fyi, I would recommend posting in r/blind, for a better community, and not here, since there's already so much death crap in the comments, not what a parent looking for advice came to see! Oh, sorry mods if this isn't allowed.
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?
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.
Can you go a little deeper on this one? What are some good ways vs bad ways to teach white-cane skills?
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.
Yes this is also what happened to me. My mother was a perfectionist! Also, bad TVI who was a perfectionist. On top of chronic migraines that presented in adult hood. So yay for me!
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.
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.
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.
jesterswilde|1 year ago
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.
PaulRobinson|1 year ago
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.
tomcam|1 year ago
Moru|1 year ago
lhamil64|1 year ago
DanielleMolloy|1 year ago
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.
matsemann|1 year ago
gautamcgoel|1 year ago
tkuraku|1 year ago
isoprophlex|1 year ago
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.
YinglingHeavy|1 year ago
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.
dunghill|1 year ago
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.
iteria|1 year ago
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.
jackdh|1 year ago
tkuraku|1 year ago
frogulis|1 year ago
bnjemian|1 year ago
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/
jesterswilde|1 year ago
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
pvaldes|1 year ago
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
upwardbound|1 year ago
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
sn9|1 year ago
highhedgehog|1 year ago
webspinner|1 year ago
burningChrome|1 year ago
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.
squigz|1 year ago
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)
Der_Einzige|1 year ago
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.
tkuraku|1 year ago
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!
ultrasounder|1 year ago
The one in Chennai is roughly 40 years old. They should have a "appointment booking" available right there on the landing page. They perform full-on keratoplasty a.k.a Corneal Transplant. But like the other poster said, please consult your pediatrician about other options as You are dealing with a toddler. Best wishes and hugs. wishing you and your wife all the very best.
samarthr1|1 year ago
magnetowasright|1 year ago
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.
sideway|1 year ago
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.
swader999|1 year ago
squigz|1 year ago
TriNetra|1 year ago
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
moi2388|1 year ago
Having said that, we live in a time where there are lots of treatment options and aids, so I’m sure he’ll be able to have all the experiences non-visually impaired children might have :)
hsbauauvhabzb|1 year ago
lokl|1 year ago
Starting point: https://www.willseye.org
lynx23|1 year ago
squigz|1 year ago
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.)
fb03|1 year ago
webspinner|1 year ago
webspinner|1 year ago
latexr|1 year ago
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.
https://en.wikipedia.org/wiki/Far_from_the_Tree
jay-barronville|1 year ago
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!
jt2190|1 year ago
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.
gallamine|1 year ago
webspinner|1 year ago
jchallis|1 year ago
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.
ndarray|1 year ago
webspinner|1 year ago
mwcampbell|1 year ago
Der_Einzige|1 year 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.
xkzx|1 year ago
Once in a while I still meet one of the blind kids from the camp (he is 22 now, he was 14 then) and I have to say that he is truly amazing. He echolocates, rides a bike, finished University studying law. went to US, learned English there. Now he wants to know Russia better, so he is going solo on the Transsiberian express. Just to see what it is like.
Best of luck!
widforss|1 year ago
red_admiral|1 year ago
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).
upwardbound|1 year ago
https://shop.letsenvision.com/products/glasses-home
https://www.businessinsider.com/envision-glasses-chatgpt-goo...upwardbound|1 year ago
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
jacobgorm|1 year ago
madaxe_again|1 year ago
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.
jylertones|1 year ago
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.
rapjr9|1 year ago
ajb|1 year ago
If he is only partly blind there may also be ways to make sure that visual brain development is supported
hilux|1 year ago
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.
zerkten|1 year ago
mensetmanusman|1 year ago
https://youtu.be/WHYCs8xtzUI
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.
benmaraschino|1 year ago
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.
lrkrsBlurkn|1 year ago
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.
tmnstr85|1 year ago
unknown|1 year ago
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novia|1 year ago
miki123211|1 year ago
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.
throwaway2037|1 year ago
This part:
Can you go a little deeper on this one? What are some good ways vs bad ways to teach white-cane skills?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.
webspinner|1 year ago
NotYourLawyer|1 year ago
khazhoux|1 year ago
They're asking for support and advice from their community.
glitchc|1 year ago
tkuraku|1 year ago
unknown|1 year ago
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Daub|1 year ago
https://www.acb.org/are-you-parents-blind-child
unknown|1 year ago
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