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

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

#31

Post by jesterswilde »

bnjemian wrote: post #28

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…

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.

An amusing anecdote and a bit of blind throwing shade a blind: https://youtu.be/u-7w3m7fhl4?t=326

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

#32

Post by ajb »

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

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

#33

Post by jay-barronville »

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!

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

#35

Post by squigz »

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)

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

#37

Post by gautamcgoel »

jesterswilde wrote: post #27

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…

Thanks for sharing this perspective, it was very interesting.

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

#38

Post by jay-barronville »

glitchc wrote: post #9
khazhoux wrote: post #7

Earlier quoted context omitted.

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.

I don't think it's impolite to ask a clarification question. Parents with their first child often have unrealistic expectations of development milestones. We want to get that out of the way first. Crucially, the OP has not provided a diagnosis (source of blindness), which one would get after soliciting medical advice and conducting tests.

> Parents with their first child often have unrealistic expectations of development milestones.

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.

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

#39

Post by xkzx »

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.

Best of luck!

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

#40

Post by madaxe_again »

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.

Good luck.

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