Ask HN: My son might be blind – how to best support

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.

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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.

Contact (and, if you can, visit) one of the top ophthalmologists in the world, as soon as possible. You cannot take a risk that your local doctor is good enough.

Starting point: https://www.willseye.org

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?