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Blind and Visually Impaired Community

Full History - 2020 - 06 - 08 - ID#gz03hz
26
Advice for a child going blind? (self.Blind)
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DrillInstructorJan 13 points 3y ago
OK so to skim over the background to this quickly, I'm in the UK, I went blind very suddenly when I was 19 and since then I have mentored several people in similar situations to your sister. Usually they're a little older, more mid to late teens, but maybe some of it will be the same.

The first thing I would love to know is how she feels about it. You say you're scared and that's understandable but is she just as scared as you, not scared at all, really up for it? It sounds silly but it gets to people in different ways and people have different ways of dealing with it, depending on what they're like as people. I don't know your sister so it's really hard to make suggestions, so maybe fill us in a bit.

My experience is that nobody likes being blind, especially if you weren't always in that situation and you know what you are missing. I've been in this situation a long time and I'm never going to like it. I don't know how an 11 year old will deal with it, but probably your sis will have moments where that reality is very very tough. I know I did, and if that happens there's no point in trying to sugar coat it or make it sound okay, so don't. You can sympathise but you can't make it okay.

As to school, the person I am mentoring was 15 at the time. She went back to school in the middle of January. She wasn't nervous about doing it from a safety perspective as they had some help available, but she was terrified about everyone refusing to have anything to do with her, which did happen a bit but we managed to solve it just by talking about things to do and say. Again this comes down to what sort of a person we're talking about. I am loud and like cracking jokes which helped me, but she is a quiet studious sort of person and she had to find something more outgoing inside herself.

The point is that you problem solve. Most things you can find ways around, especially with things like schoolwork. There's so much to say about schools; finding a place that was right for the person I am mentoring was hard and she ended up needing to take a taxi ride to a place that was further away than her dad or I would have wanted, but they were the most helpful. Yes you can force people to find a place, under the law, but you have to ask the question whether it's a great idea to make people do something they don't want to and have it affect your sister's education. We looked around a lot and you should anticipate a bit of a fight to get things to be right.

You will be shocked at how okay it is in the end. There's so many things I could say about practical stuff, getting paperwork (EHCPs etc) sorted out but I've gone on enough. Please though, whatever you do keep posting here and private message me if you want to, any time.
coldheartsthru 5 points 3y ago
Thanks for this answer. My mum hasn’t actually told her about it yet. She has hydrocephalus and actually hasn’t been able to see for a month but the doctor phone earlier on today and said the operation was successful in draining the fluid from her brain but her (I believe) her optic nerve was too damaged so the chances she will regain her sight are very, very small. She’s actually handled not being able to see this past month quite well (joking around, playing games etc) but my mum is trying to figure out how to tell her. She’s seeing the doctor again on Monday and will be referred to some psychiatrist to help her transition but it’s all so new, that’s why my original post seemed so rushed and worried

You’re right about the problem solving thing. And you’re right that she’s going to have a tougher time with this than we do. I’m just so worried for her but the comments in this thread are giving me hope and I’ve realised it’s more manageable than I thought. Thanks so much for the offer to ask you questions, I probably will be taking you up on that within the week
DrillInstructorJan 3 points 3y ago
I don't want to get in the way of whatever the mental health system has maybe planned here, but my instinct is that nobody can start getting over a situation like this until they know it exists. I was (just barely) an adult so I was dealing with things myself, but I went through quite a long time (months) of not being able to see where it wasn't clear what the outcome was going to be. There were a lot of ups and downs and false hope is horrendous. Again this will depend on the person. I don't know your sister, how mature she is (11 is a tricky age) and you may have been advised by someone professional what to do.

Also don't downplay the issue for yourself. When I went blind my then boyfriend (now partner of 18 years) almost drove himself crazy trying to be the best guy he could and to do everything. I was being selfish and never thought of him, and he wasn't thinking of himself, and he burned out really badly. One of the things we do when I'm mentoring my current learner, if we don't need him along, is he takes her dad out to the pub for a pint so that he can have a break and do something normal and vent. It's great. Don't burn yourself out trying to make her life perfect, it never will be and she needs to learn to deal with it.
r_e_n_1_1_ 6 points 3y ago
I’m not sure what country you’re from, but you need to contact your local CNIB (Canadian) or National Federation of the Blind (American). They most likely will have resources for orientation and mobility, life skills, and learning braille, as well as screen readers for computers, phones and tablets. If she doesn’t already, an iPhone is recommend because it truly opens up a whole world of access. Please please please consult your CNIB or NFB.
coldheartsthru 6 points 3y ago
Thanks for this. Should have included I’m in the UK. sorry for this mess of a post, it was quite rushed because it’s just really stressful for us all at the moment and I don’t know of anyone irl who has gone through this. But I’ll look into the UK equivalent of this. thank you
r_e_n_1_1_ 7 points 3y ago
So you guys have the RNIB, here’s the link:


https://www.rnib.org.uk/

They have a sight loss advice service on their page, I think that should help.
r_e_n_1_1_ 4 points 3y ago
Also, I’d suggest audiobooks, which can be accessed on most phones/computers using audible, as well as the audio descriptions with streaming services like Netflix or Hulu, even on cable television. It can be accessed in settings under accessibility.
coldheartsthru 1 points 3y ago
Thanks so much. I really appreciate this. Will be looking into everything you’ve suggested
DefiantDecay 2 points 3y ago
Consider getting a soundbar for the audio book and STRICTLY teach her to protect her hearing, i would honestly ban headphones because hearing will be modt of her world
Ant5477 5 points 3y ago
I’ve been blind for some time, the only advice that I can give her, the world is not over, there are a lot of technology out there for individuals who are totally blind, I promise you, after excepting it, she will do all right, I also talk about this in my talk show where she can learn a great deal from that as well if you are interested
coldheartsthru 1 points 3y ago
Thank you for this. This is very recent news to us that’s why my post seemed so scattered/rushed. I would absolutely be interested in this, do you have a link?
Ant5477 1 points 3y ago
Hi are you still interested in the link to the show?
gaeboi555 4 points 3y ago
White cane as soon as you can. RNIB too.
IronDominion 4 points 3y ago
In America, you should also contact her school. Many school distracts and states have their own resources for training and getting her help and assistive technology. A special needs coordinator at her school would probably be the best point of contact.
AmAsabat 3 points 3y ago
Hi. I went blind at the age of 12. Traumatic accident with no time to prepare. There is no advice you can give to her other than we are here for you and will always be.

There’s an amazing support network in the UK organised by RNIB who have everything you need and people to talk too.

There is lots of practical things you can do, first learn how to be a sibling of a blind person from a good support group. This means she needs to learn how to be an adult without help as much as you want to help her. Everything is scary to start with but it gets better.

At the grand old age of 30 I live on my own, have a great job, relationship, and have travelled the world on my own. I’m about to move back to UK after being in US for 10 years, COVID dependent, and can recommend some people to talk to depending where in the uk you are.
coldheartsthru 2 points 3y ago
That’s absolutely wonderful. Reading this made me feel very at ease. Thank you for sharing this.

I’ll definitely look into this. I will probably have a billion questions in this coming week so I just want to take this second to thank you and everyone else commenting here for all the advice and support. It means the absolute world and more!!
DrillInstructorJan 1 points 3y ago
Not to hijack amasabat's response, but if it helps yes, there are absolutely careers available. I'm a session guitarist by trade and I am a co-director of a musicians agency. Problem I have with the mentoring is finding time to do it!

It always feels a bit obvious, okay, you're blind be a musician, but there are lots of people in other fields who do really well. Law, software engineering, fine you're not going to be a pilot but there's plenty of stuff going on. I am self employed which I like as it means I can deal with stuff on my own terms and argue my own case for things. What I think is important is that people maintain a degree of normality in the way they move around and talk to people. I am regularly told "you don't look blind" which is something I treasure as I think it makes me more employable. It shouldn't but it does. So that's something to think about.
AmAsabat 2 points 3y ago
I teach english at a university, and write books on odd subjects like "the use of colloquial language and local idioms in sitcoms to establish place", so yea you can do most anything.
retrolental_morose 3 points 3y ago
your local authority will have a duty to ensure she's given training in all the things she needs to learn. it's hugely traumatic, losing it at any age is painful, but being 11, she's young enough to adapt, with help.

Life as a blind adult in England is better now than at any time in history. throw questions on here, this sub is great.

and if you or she or family need someone to talk to, I've never had sight but have work retraining those who have lost it, and would be happy to chat over anything.
Aida_Hwedo 2 points 3y ago
Does she have a smartphone or tablet? If not, and if you can afford it, I suggest getting her one or the other. Partly because the distraction of a new tech toy is awesome, but also because it’ll be super useful in multiple ways—voice commands are awesome.

Also, check out YouTube! Molly Burke‘s $1 is just one awesome resource; her videos are about everything from life as a blind person to her favorite makeup brands.
Ant5477 2 points 3y ago
And actually if you would like for me to talk with her on my show or she’ll come on the show, via Skype or stream yard I would be honored to have her on
Ant5477 2 points 3y ago
Sure, are we allowed to post links first of all
WalksLikeAFrog 2 points 3y ago
Please contact www.look-uk.org they are a UK based charity they have mentoring for blind young people and support for families they’ve helped my family a lot I definitely recommend them
thatblindgirl 2 points 3y ago
I agree with all of this! I was basically born blind, so I haven’t had the difficulty with transition. That being said, I think one of the most important things is to let her know that she’s not alone. Have her join a Facebook group or email listserv. I know in the US the national Federation of the blind has a teams list serve where students can ask each other social and educational questions and bond. It might also help her to watch Molly Burke on YouTube as she has videos about transitioning to blindness, bullying, make up, fashion and it really helps to see how someone has successfully managed despite being blind. Like everyone else, feel free to message me if you have any specific questions.
AndAdapt 1 points 3y ago
I live in England (north east) and lost my sight in my teens. That was 20 years ago now.

I have done work with the LA here about making schools accessible for blind students and i will be teaching computer science in mainstream schools from september. So i can certainly offer any pointers on making the school experience as accessible as possible. So please feel free to message me with specific questions.
[deleted] [OP] 1 points 3y ago
[deleted]
CouldBeKel 1 points 3y ago
I really just want to say that everything will Turn out alright — I promise. I’m totally blind, 18 from the UK, and am preparing for uni in the autumn. I have an active social life and am happy. Having a supportive family is key: sometimes that may seem like being cruel to be kind, but supporting her in her independence, in her self-confidence, and insuring that you expect from her what you would expect from other members of your family (given time, of course), with things like doing the washing up, tidying up, and so forth.
I lost my sight as a kid and have helped to speak to families with blind children, admittedly usually younger than your sister, to help show that things will be okay. I’m happy to talk whenever you want/need, just pop up in messages on here or reply to this or whatever you are most comfortable with 😄
gnl221 1 points 3y ago
Sorry if this was already covered. There are some phone apps that help quite a bit. Seeing Ai is free for iPhone and does a great job to help with identifying things and reading text. It wasn’t very good with iPhone 6 but works great with XR.

Be my eyes is free and uses volunteers to help over video.

There are some apps that make navigating easier for use with screen readers. Dystopia is a good one for reddit.
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