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Blind and Visually Impaired Community

Full History - 2021 - 01 - 13 - ID#kwc6ra
2
Another question (self.Blind)
submitted by [deleted]
[deleted]
DrillInstructorJan 5 points 2y ago
Not seeing his surroundings won't make him uneasy. Not seeing my surroundings very occasionally makes me uneasy, but then I had 19 years of totally normal sight to compare to. You'll get some responses from people who've never seen and don't really get that uneasiness, so I wouldn't be too concerned.

Chemotherapy is rough on anyone. I was around my dad when he did it (he's fine). All you can do is take medical advice and act accordingly. Chemo is a blunt instrument and it makes people feel rough. It'll be over at some point.

I guess what you're asking is whether you should be kind or pushy. I have a normal career that is nothing to do with being blind and my experience is helping out unofficially talking to people who have recently lost sight. The youngest was 14, so it may not be directly relevant but I'll tell you what I can. I alter my approach depending on the person but there is a reason they call me the drill instructor (mwahahah!)

Yes, I have been accused of having an uncompromising attitude but to speak plainly, your son is likely going to have a life in which he has to deal with a bunch of shit that most people don't. That is totally manageable, but your instinct that he will need some toughness is pretty accurate. There are certain things you will naturally do like making sure there's proper education stuff in place, mobility training and so on but at some point he has to survive in the real world, have a career, have a decent life. Special facilities are great but the world is not a special facility.

You walk the line between standing up for yourself, and being an abrasive activist. That can alienate otherwise helpful people and I am very cautious about it. The online echo chamber is really good at turning people into shouty disability politicians. It feels great in the short term, hey, I'm helping, I'm being an activist, listen to how loud I can shout, I don't think it leads to good long term outcomes.

In my view what you're trying for is friendly assertiveness, insisting with a smile on your face and in a way that's compatible with the real world. The other harsh reality is that people who have never seen (or not since they were very young) don't learn certain aspects of body language, fashion, turnout, etc. Some disabled people get fat and live in stained sweatpants which is obviously not going to contribute to glittering career opportunities regardless how well you can see or not. It's harder for those of us who have to wear makeup and heels, but shaving, shoe polish and spending a few hours a week in the gym matters. Fitness helps everything.

So yeah, kind but firm and definitely no coddling. The only person who will be available one hundred per cent of the time to help out your son is himself. We'll all keep trying to make the real world friendlier, and that's great, but... the real world doesn't care what we think!
siriuslylupin6 2 points 2y ago
I think that you should absolutely treat him the same way. As a sighted child. The only allowance is for different interest and different personality but not disability.
Only1lunatica 2 points 2y ago
I think pushing him a little is fine, you can a 100% tell when someone whose visually impaired or blind have been kept in a bubble, it makes them more out of place than being disabled.
buy toys with different surface textures and play with him a bit with those, make it fun and then it could progress to "this is how the floor feels, this is a tree, grass, fur, rock," and so on it might make the outside world something fun to explore?
CloudyBeep 1 points 2y ago
Does he respond to stimulation? Your 2-year-old is active because he can interact with the myriad of things that he sees. If you were to dangle a noisy toy just out of your younger son's reach, he should become interested in it. He has not developed the skill of thinking to look around for stimulation—if he can't perceive it, it doesn't exist.

You should make him have a variety of experiences.

Are you receiving early intervention services? Those professionals will have much better advice than we can give.
[deleted] [OP] 2 points 2y ago
I take into consideration his lack of sight and try very often to stimulate him with sounds and touch. For example If I'm pointing out a tree to my older son I make sure I pick up my younger son and have him feel the tree, the same thing with flowers, grass, things at the park, my face. I try to get him to explore my face with his hands so he can learn we're the same. I'll have him touch my nose and than touch his nose and so on. All these experiences I try to create for him always end with him pulling his hands away, clasping them together and crying. He doesn't like to be pushed to explore new things. I make funny noises to him and he laughs, but there is no toys with sound that he's interested in. I shake things around him, put them in his hand and shake them with my hand around his and he acts irritated and will pull his hands away, clasp them and cry if I continue. I try to dance with him like I did with my older son and he reacts negetivily to being overstimulated with too much motion.

We have four different theapists from early intervention starting next week. I believe its one hour of video conference each per week.

One of them is supposed to drop off a exploratory vest, don't quote me on the name, it's supposed to be full of stimulating things for him to interact with.

Even among professionals opinions may differ, but one person who commented on my question before this made it clear that they think it was a mistake for their parents not to raise them to be as independent as they would of liked and I need to prepare him for the real world, I was just wondering if that was a universal theme among people raised blind. I push my sighted son though tears to do things that I believe are good learning experiences for him, for example touching Halloween decorations to show him they're harmless. I know my younger son's cancer adds an extra layer but on the positive side we tried a new chemo, the tumor seems to have stopped growing, and he's started eating again and has become a chubby boy. I just want some confirmation that I should push him the same as my older son. I'm worried it may seem excessively cruel because at his age he can't speak ontop of not seeing, so I can't communicate what's going on to him to reassure him, he can't see my facial expressions trying to convey what's cool or safe or funny. For example with my older son one of the ways I show him not to be afraid is I'll make a mischievous grin and poke at the Halloween monster like it's a game, he picks up on that and imitates me. I don't know how to communicate to my younger son the same thing when I'm showing him something new and before I figure out how he cries and I feel I have to stop when maybe I should push forward.
CloudyBeep 2 points 2y ago
It sounds like you're trying your hardest and definitely not neglecting him, so I recommend explaining what you've tried to these therapist

I'm not trying to diagnose your son over the internet, but it is possible that he may have an additional disability like autism that makes him more sensitive to external stimuli. It is equally possible that with enough encouragement, he will eventually want to be an active participant in the real world, and that right now he is just very nervous.
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