Blind and Visually Impaired Community
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The weight of going blind hit me today. Hard. (self.Blind)
submitted by Ancient_Ad_5809
My wife and I have four children, three are autistic. So spring, summer, and fall we are out and about doing all kinds of things. Today was no different. There was an event in a city close to us so we went. It was extremely bright today (not so much according to my wife) and even with my dark wraparound sunglasses it was too bright. For a brief second I took them off to readjust and everything is just bright, bright white. It's hard to make out anything. And it's extremely painful.
I literally was having so much issues keeping an eye on the kids, and I just couldn't do it. I couldn't make out which kids were mine, even though I knew what they were wearing. Colors just don't seem the way they used to, and contrast is extremely difficult for me. So the whole event was me being on the edge of a panic attack, not being able to keep up with my kids and feeling like a burden to my wife. A chunk of the time I actually just closed my eyes, there didn't seem to be much of a point in having them open in that scenario.
This whole thing really just enforced the idea that I really need to start using a cane and practicing with it. Because I would have used it today, for sure.
This whole process has just been very humbling. I feel like a burden to my wife who has to hold my hand like a child to lead me where I need to go. I know it's going to be rough until I get adjusted to this, but... I don't know. A fun family day has me feeling a bit disappointed and down. I know I'm not alone, far from it, but it feels that way sometimes.
I literally was having so much issues keeping an eye on the kids, and I just couldn't do it. I couldn't make out which kids were mine, even though I knew what they were wearing. Colors just don't seem the way they used to, and contrast is extremely difficult for me. So the whole event was me being on the edge of a panic attack, not being able to keep up with my kids and feeling like a burden to my wife. A chunk of the time I actually just closed my eyes, there didn't seem to be much of a point in having them open in that scenario.
This whole thing really just enforced the idea that I really need to start using a cane and practicing with it. Because I would have used it today, for sure.
This whole process has just been very humbling. I feel like a burden to my wife who has to hold my hand like a child to lead me where I need to go. I know it's going to be rough until I get adjusted to this, but... I don't know. A fun family day has me feeling a bit disappointed and down. I know I'm not alone, far from it, but it feels that way sometimes.
xmachinaxxx 17 points 1y ago
I hear you. I just got extremely frustrated myself while cooking my family dinner. Frustrated because sometimes wish I didn’t need their help. I didn’t use to need it. I just wanted to throw everything and scream.
In regards to using a cane, get on it! It may really help your sense of independence.
In regards to using a cane, get on it! It may really help your sense of independence.
Ancient_Ad_5809 [OP] 5 points 1y ago
I can only imagine. I don't cook very often, but that alone would frustrate me. There's so much that goes into it, and being able to make sure measurements and such are correct, temps, etc... I'm learning alot about some modern assistance devices that help maintain more independence, but still. An accident in the kitchen can end up burning your house down lol.
Thameus 9 points 1y ago
I get it, only way forward is to embrace the suck. The folks I know that are fully blind seem pretty well adjusted, but the journeys weren't that fun.
Ancient_Ad_5809 [OP] 9 points 1y ago
Yea, you can expect it and prepare for it all the time but it's nothing like the reality of it. My wife saying "take my hand" was like a reality slap lol. I'm going to keep pushing forward, there's obviously no going back, I've been lucky to have vision for as long as I have. Just keep on keeping on.
Simply_Limeade 8 points 1y ago
You definitely are not alone. As a blind parent I know a lot of us have these moments and feels. Wish you the best mate.
Ancient_Ad_5809 [OP] 2 points 1y ago
How do you keep up with your kids?? Lol it seems like a silly question, I feel like they basically need to be tied to me. If it wasn't for my wife I'd be screwed. Thank you for commenting. It really does mean alot.
Simply_Limeade 4 points 1y ago
We don't get out much so it's at least easier that way. When we do. We avoid crowded places. Not just for my sake. But because we don't like having that kind of anxiety in our life. So it's usually just our kids. It's not always a luxury we can get though. I usually can orientate where the kids are in a park that's not busy. Kids are loud, and exhausting. I can be mostly self reliant with them. But definitely prefer my other half helping. Because humans and the world are scary. I wasn't legally blind when my kids were really little like toddlers. So I can't imagine what hell that would have been. If you have any questions or anything, am here. I don't know if I'm helpful. Mostly just kind of ramble. But am here.
TechnicalPragmatist 5 points 1y ago
If you keep talking to them or being pretty hands on, it helps. Keep checking in, in a sense
Ancient_Ad_5809 [OP] 4 points 1y ago
Our kids tend to spread out and RUN, my god they can run lol. We actually used to have issues with eloping, but thankfully we haven't in a bit. I feel so bad for my wife, because she's having to pick up the slack that I've created.
TechnicalPragmatist 1 points 1y ago
Sorry to hear this, that sounds tough.
dfendt 4 points 1y ago
My dad is completely blind, lost his vision before he met my mom. And while it sucks that you can't do everything, or other things as easily, you can still be an amazing parent and partner. You can still be present, active, participate, help out as much as you can, and by letting your family be there for you and help you with the things you now struggle with, you can create an amazing bond with everyone.
I've never blamed my dad for not being better due to blindness, because both my parents were always open about it so for me and my sister, it was just a normal life. Not lacking, normal. Yes, it meant that mom had to do a lot of work (she is amazing and super strong), and yes, your struggles are 100% real. But like my dad said: you can either become your illness, become own and your families problem, or you can do the best you can and keep growing. Or my own simplified version: you're a normal parent with incredibly poor eyesight.
There are plenty of parents with excellent vision that never should've gotten kids because they are terrible people. Your eyesight doesn't make that decision for you.
Don't dig a ditch filled with all the bad.
Focus on, and keep track of, the good things.
Edit: Regarding your kids' ND, I have ADHD and a splash of autism, and my sister has severe dyslexia. We required a lot of help in completely different ways, and today I have my childhood dream job, so, my parents made it work.
I've never blamed my dad for not being better due to blindness, because both my parents were always open about it so for me and my sister, it was just a normal life. Not lacking, normal. Yes, it meant that mom had to do a lot of work (she is amazing and super strong), and yes, your struggles are 100% real. But like my dad said: you can either become your illness, become own and your families problem, or you can do the best you can and keep growing. Or my own simplified version: you're a normal parent with incredibly poor eyesight.
There are plenty of parents with excellent vision that never should've gotten kids because they are terrible people. Your eyesight doesn't make that decision for you.
Don't dig a ditch filled with all the bad.
Focus on, and keep track of, the good things.
Edit: Regarding your kids' ND, I have ADHD and a splash of autism, and my sister has severe dyslexia. We required a lot of help in completely different ways, and today I have my childhood dream job, so, my parents made it work.
pisces0387 3 points 1y ago
hi OP
as someone who's been blind from birth, I have bad days yes, but not many very bad ones anymore, granted I have had some help over the years, therapy, meds, etc.... I can't recommend highly enough that you learn how to use a white cane. It will give you some independence, therefore, a feeling of even a little control about what you do, when, how, etc. I can't imagine what it's like to have to do this if you didn't learn when you were very small as I did, but you will feel amazing when you do it. try to think of it as something that helps, and gives independence, rather than something that makes you stick out like a sore thumb or toe. Wishing you the very best. And, I'm open to chatting if you ever want, just as someone who's done the blind thing for 30 some years.... Take it easy
as someone who's been blind from birth, I have bad days yes, but not many very bad ones anymore, granted I have had some help over the years, therapy, meds, etc.... I can't recommend highly enough that you learn how to use a white cane. It will give you some independence, therefore, a feeling of even a little control about what you do, when, how, etc. I can't imagine what it's like to have to do this if you didn't learn when you were very small as I did, but you will feel amazing when you do it. try to think of it as something that helps, and gives independence, rather than something that makes you stick out like a sore thumb or toe. Wishing you the very best. And, I'm open to chatting if you ever want, just as someone who's done the blind thing for 30 some years.... Take it easy
King_of_the_Dot 3 points 1y ago
Fortunately, you have a beautiful family to help you along the way. It's a learning process for everyone. Good luck to you, friend.
Ancient_Ad_5809 [OP] 2 points 1y ago
This is very true, thank you. One day at a time. Thank you.
Rhymershouse 2 points 1y ago
Hey OP.
I’m a totally blind parent of a toddler. Depending on how old your kids are, squeaky shoes and bells csn help. Also, if they’re older, can you have a talk about staying close?
Yes. Start using a cane. It’ll help. I’ve been blind since birth but the panic attack because you can’t find your kids is a feeling I know well.
I’m a totally blind parent of a toddler. Depending on how old your kids are, squeaky shoes and bells csn help. Also, if they’re older, can you have a talk about staying close?
Yes. Start using a cane. It’ll help. I’ve been blind since birth but the panic attack because you can’t find your kids is a feeling I know well.
vbtodenver 2 points 1y ago
My ex-husband went blind while we were married. It’s painful for everyone. Your self awareness will go a long way. Also, the more you to do help yourself, the easier it will be on your wife and kids. You are very lucky to have them!!
I agree with previous poster that you should look into one of the NFB training centers. I live in Denver and my ex went to the center here. I think you start with your state vocational rehab.
I agree with previous poster that you should look into one of the NFB training centers. I live in Denver and my ex went to the center here. I think you start with your state vocational rehab.
[deleted] 1 points 1y ago
[removed]
vbtodenver 1 points 1y ago
It was not related to his condition. We were unhappy before.
blackberrybunny 2 points 1y ago
Learning how to use a white cane will boost your confidence and provide you with a lot of reassurance. But you must learn to use one properly. There's a lot more to it than you swinging a cane back and forth in front of you. Your cane will literally start to feel like a part of your body and you will be amazed at how well you can navigate and travel around when you are using a white cane. Please seek out an orientation and mobility instructor. There are a lot of different types of cane tips, and I prefer a metal one. It lets me hear what kind of surface my cane is tapping upon, and metal tips last a long time. You will not regret learning how to use one. I went to the Louisiana Center for the Blind, for their 6 month program, and I learned how to use a cane and read Braille and they really taught me how to live my life in a whole new way. It was the best months of my life. Please look into them. They also have a sister center in Denver, and I believe one is in Baltimore, or that area. Good luck to you. You'll be ok!
pisces0387 2 points 1y ago
agree with this. Cane = independence. Well said 👍
BlueIr1ses 1 points 1y ago
Just wanted to let you know that I can relate... I have had eye issues from childhood, but I've been losing quite a bit of vision in the last few years. I have two kids, both autistic, and I get how hard it can be to navigate public places when you're trying to parent. I try to keep my expectations low, haha. I've been very repetitive with my going out rules for them since they've been little (e.g. - If you can't see Mommy, I can't see you. Hold hands in a parking lot/street. etc) I have done some O&M training, but I still find it awkward to take out my cane sometimes - it's something I'm working on, but I know it will be a big help to me. I also had done some therapy, which I found incredibly helpful and I highly recommend.
PrettyBlind1983 1 points 1y ago
hello, good day, I've been blind for three years and I still don't know how to use a cane very well. I have been researching other assistive mobility devices that can be very well accompanied by the cane and I found this page. It sounds very interesting because it is used with straps and it allows you to recognize obstacles above your head. I hope you find the best solution so that you can continue living with your children and your family without feeling sad. Blessings.
https://strap.tech/
https://strap.tech/
WEugeneSmith 1 points 1y ago
I can so relate to that overwhelming, crashing feeling.
There are so many situations (I am fairly new to the VI world) where I feel the crushing weight of how hard simple situations and tasks have become.
I wish I had a magic formula for you, but the the best I can do is to assure you that you are not alone in feelng the way you do and to offer hope for those days when life seems normal.
There are so many situations (I am fairly new to the VI world) where I feel the crushing weight of how hard simple situations and tasks have become.
I wish I had a magic formula for you, but the the best I can do is to assure you that you are not alone in feelng the way you do and to offer hope for those days when life seems normal.
honestduane 0 points 1y ago
One of the hardest thing for me to accept when I got my cane was that using it was not just to protect me, it was also to let everybody else around me know that the social rules that applied for the blind applied around me, because that under the laws this triggered and enabled these protections for others.
I hate my cane. Its a symbol of my injury, its weakness, and everything I have lost. But I still use it, because no matter how much I hate it, love it, or fear it, etc, I still need to do the right thing for others.
You have others, You are so lucky and you don't even know how lucky you are. Remember, most of us end up alone in our place by ourselves. I only get to use my cane when I leave my home. You are not alone, and that puts you steps ahead of many of us.
I hate my cane. Its a symbol of my injury, its weakness, and everything I have lost. But I still use it, because no matter how much I hate it, love it, or fear it, etc, I still need to do the right thing for others.
You have others, You are so lucky and you don't even know how lucky you are. Remember, most of us end up alone in our place by ourselves. I only get to use my cane when I leave my home. You are not alone, and that puts you steps ahead of many of us.
pisces0387 2 points 1y ago
Am very sorry to know this is how you feel about your blindness. I am here to chat if you ever want.
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