by tkuraku on 9/19/24, 3:27 AM with 160 comments
by jesterswilde on 9/19/24, 7:08 AM
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.
by isoprophlex on 9/19/24, 6:16 AM
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.
by iteria on 9/19/24, 10:20 AM
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.
by bnjemian on 9/19/24, 7:12 AM
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/
by burningChrome on 9/19/24, 6:09 AM
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.
by squigz on 9/19/24, 8:06 AM
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)
by tkuraku on 9/19/24, 1:52 PM
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!
by ultrasounder on 9/19/24, 5:01 AM
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.
by magnetowasright on 9/19/24, 4:28 AM
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.
by sideway on 9/19/24, 10:32 AM
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.
by swader999 on 9/19/24, 2:39 PM
by TriNetra on 9/19/24, 6:42 AM
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
by moi2388 on 9/19/24, 5:53 AM
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 :)
by hsbauauvhabzb on 9/19/24, 4:45 AM
by lokl on 9/19/24, 12:27 PM
Starting point: https://www.willseye.org
by lynx23 on 9/19/24, 9:16 AM
by webspinner on 9/21/24, 9:34 AM
by latexr on 9/19/24, 12:41 PM
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.
by jay-barronville on 9/19/24, 8:02 AM
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!
by jt2190 on 9/19/24, 12:02 PM
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.
by jchallis on 9/19/24, 2:07 PM
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.
by ndarray on 9/19/24, 11:33 AM
by xkzx on 9/19/24, 8:20 AM
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!
by red_admiral on 9/19/24, 9:28 AM
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).
by upwardbound on 9/19/24, 6:44 AM
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
by jacobgorm on 9/19/24, 8:05 AM
by madaxe_again on 9/19/24, 8:22 AM
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.
by jylertones on 9/19/24, 11:28 AM
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.
by rapjr9 on 9/21/24, 12:35 PM
by ajb on 9/19/24, 7:31 AM
If he is only partly blind there may also be ways to make sure that visual brain development is supported
by hilux on 9/19/24, 3:45 AM
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.
by zerkten on 9/19/24, 1:08 PM
by mensetmanusman on 9/19/24, 1:33 PM
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.
by benmaraschino on 9/19/24, 5:26 AM
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.
by lrkrsBlurkn on 9/19/24, 11:49 AM
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.
by tmnstr85 on 9/19/24, 5:00 PM
by webspinner on 9/21/24, 10:03 AM
by novia on 9/19/24, 6:46 AM
by miki123211 on 9/19/24, 12:44 PM
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.
by NotYourLawyer on 9/19/24, 4:35 AM
by Daub on 9/19/24, 10:17 AM
by wandermatt on 9/19/24, 5:16 AM
by vismit2000 on 9/19/24, 9:00 AM
by eqkRZX_wmv0jqp7 on 9/19/24, 10:58 PM
by raylad on 9/19/24, 7:04 AM
by CuriouslyC on 9/19/24, 12:58 PM