Blind and Visually Impaired Community
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Little kiddo w/ optic nerve damage (self.Blind)
submitted by lzilulu
Hi all! I’m a parent of a child with progressive vision loss & I’m hoping that someone on this sub can help me understand what my daughter is experiencing.
My 4 year old daughter has an glioma in the optic chasm which is causing damage to the optic nerve & rapid vision loss in both eyes. She’s getting chemo in hopes of stopping the tumor and preserving her sight as much as possible, but it’s unlikely she’ll regain any.
She’s doing well with treatment, and we’re at the stage of trying to figure out how best to help with her vision loss. Being so young, she doesn’t have any way to articulate what it looks like for her or what we could do to help. She’s got 70-80% loss in one eye & 30-40% loss in the other.
I’m curious if anyone can help me get a feel for what it‘s like to have vision loss due to a glioma/nerve damage?
What suggestions do you have for helping her understand her vision changes?
Thanks!
My 4 year old daughter has an glioma in the optic chasm which is causing damage to the optic nerve & rapid vision loss in both eyes. She’s getting chemo in hopes of stopping the tumor and preserving her sight as much as possible, but it’s unlikely she’ll regain any.
She’s doing well with treatment, and we’re at the stage of trying to figure out how best to help with her vision loss. Being so young, she doesn’t have any way to articulate what it looks like for her or what we could do to help. She’s got 70-80% loss in one eye & 30-40% loss in the other.
I’m curious if anyone can help me get a feel for what it‘s like to have vision loss due to a glioma/nerve damage?
What suggestions do you have for helping her understand her vision changes?
Thanks!
PseudoscientificFox 6 points 5y ago
I have vision loss from optic neuritis. (Retrobulbar) I would never be able to explain what your daughter sees, it gets very subjective, only share what I've experienced.
In my bad eye, I can only see a small spot in the upper left side of that eye's vision. It's blurry, very blurry. It's like looking through frosted glass. I can see shapes and some colors (mostly blues but only on the outside. The middle sees no color).The rest of my vision in that eye is just grey. (Like really thick frosted glass.) I also have a couple black spots that scare the crap out of me every now and then because I think it's a spider lol.
I have terrible vision in the other eye due to astigmatism. It's blurry but glasses help on that side. Glasses do not help the other eye and I can't wear them due to trigeminal nerve pain.
I can see better in the dark since light just makes everything washed out, and it's also pretty painful.
Shes young and growing up with this so it's normal in a way for her. Help her adapt to new problems as they come.
Things that help me.
Painters tape- since I can see blue it's on every corner and on things I lose a lot. I also use neon puffy paint for things I lose a lot. They make so many colors now. Have her pick out her favorite. That way you know she'll see it. I have 0-10% depth perception so it helps me a lot. I ran into a lot of walls before this.
High contrast everything and huge- it's the only way I can see text.
While she's young you might want to think about having her learn brallie now. I do not use it, but to me that seems like a good idea if you like to plan ahead like me. But again I know 0% about it.
I would also suggest occupational therapy. It helped me out so much.
I was sent this a while ago. It's a simulation, maybe it will help you understand a lil better. It's not what I see but does give a good idea.
https://simulator.seenow.org/webgl.html
I feel like I'm rambling, if you have any questions, I'm new to vision loss but I'd be more than happy to help you brainstorm. You sound like a very loving and caring mother. She's lucky to have you.
In my bad eye, I can only see a small spot in the upper left side of that eye's vision. It's blurry, very blurry. It's like looking through frosted glass. I can see shapes and some colors (mostly blues but only on the outside. The middle sees no color).The rest of my vision in that eye is just grey. (Like really thick frosted glass.) I also have a couple black spots that scare the crap out of me every now and then because I think it's a spider lol.
I have terrible vision in the other eye due to astigmatism. It's blurry but glasses help on that side. Glasses do not help the other eye and I can't wear them due to trigeminal nerve pain.
I can see better in the dark since light just makes everything washed out, and it's also pretty painful.
Shes young and growing up with this so it's normal in a way for her. Help her adapt to new problems as they come.
Things that help me.
Painters tape- since I can see blue it's on every corner and on things I lose a lot. I also use neon puffy paint for things I lose a lot. They make so many colors now. Have her pick out her favorite. That way you know she'll see it. I have 0-10% depth perception so it helps me a lot. I ran into a lot of walls before this.
High contrast everything and huge- it's the only way I can see text.
While she's young you might want to think about having her learn brallie now. I do not use it, but to me that seems like a good idea if you like to plan ahead like me. But again I know 0% about it.
I would also suggest occupational therapy. It helped me out so much.
I was sent this a while ago. It's a simulation, maybe it will help you understand a lil better. It's not what I see but does give a good idea.
https://simulator.seenow.org/webgl.html
I feel like I'm rambling, if you have any questions, I'm new to vision loss but I'd be more than happy to help you brainstorm. You sound like a very loving and caring mother. She's lucky to have you.
lzilulu [OP] 2 points 4y ago
Oh my goodness, you are so sweet! Thank you so much for taking the time to give such a detailed explanation.
I totally understand that everyone’s experience is different, but a lot of what you describe sounds really familiar for her experience. She always likes rooms to be dark & we’ve chalked it up to light sensitivity due to her pupils aren’t functioning correctly. your explanation makes so much sense that it’s easier to see that way.
I really like the idea of the painters tape - she knows her colors, but they seem to be really washed out, but she seems to see blue & green really well. We’ll have to give this a try since she’s always winging off of stuff :)
Thanks again!
I totally understand that everyone’s experience is different, but a lot of what you describe sounds really familiar for her experience. She always likes rooms to be dark & we’ve chalked it up to light sensitivity due to her pupils aren’t functioning correctly. your explanation makes so much sense that it’s easier to see that way.
I really like the idea of the painters tape - she knows her colors, but they seem to be really washed out, but she seems to see blue & green really well. We’ll have to give this a try since she’s always winging off of stuff :)
Thanks again!
ENTJ351 3 points 4y ago
So, I can't tell you how it felt, because I don't remember things like that. I remember over all though.
What I suggest is to have her learn adapting strategies and be quick on her feet to change. Have her brainstorm creative and interest adaptations with you will be helpful. Something I've always been able to do. Let her try different experiences without holding back, even things you think a blind person couldn't do. If it directly requires vision, maybe not, but we can do most anything. Be positive and don't give up. Have her be able to be open and verbally able to share her perspectives on things, and be open to questions about her blindness. Do not be sensitive about this. The more open the better. As a blind person you are always the teacher about what blindness is. Teach her to be open to asking for help and there is nothing wrong with it if appropriate. The most useful thing my father ever did for me was to imply, "so, what? You're blind, yeah? oh well, do it anyway!" He ignored the blindness and raised me just like everyone else. I was a kid no different then any other in his eye. You sink or swim, you fail, we'll teach you how to cope, but "george can do it, so can you!"
What I suggest is to have her learn adapting strategies and be quick on her feet to change. Have her brainstorm creative and interest adaptations with you will be helpful. Something I've always been able to do. Let her try different experiences without holding back, even things you think a blind person couldn't do. If it directly requires vision, maybe not, but we can do most anything. Be positive and don't give up. Have her be able to be open and verbally able to share her perspectives on things, and be open to questions about her blindness. Do not be sensitive about this. The more open the better. As a blind person you are always the teacher about what blindness is. Teach her to be open to asking for help and there is nothing wrong with it if appropriate. The most useful thing my father ever did for me was to imply, "so, what? You're blind, yeah? oh well, do it anyway!" He ignored the blindness and raised me just like everyone else. I was a kid no different then any other in his eye. You sink or swim, you fail, we'll teach you how to cope, but "george can do it, so can you!"
lzilulu [OP] 2 points 4y ago
Thank you so much. I appreciate you being so candid in how we should approach this. We had a little while of “poor us”, but we’ve put all of that into raising a kick ass little kiddo ;). She’s taking dance and learning piano & she’s absolutely fearless - it’s hard for me to not wrap her in cotton and keep her in the house all of the time.
We’re just getting started and learning more about the blind community. Everyone has been so understanding when I put my foot in my mouth lol
Thanks for helping me to understand visual impairment better as a sighted person
We’re just getting started and learning more about the blind community. Everyone has been so understanding when I put my foot in my mouth lol
Thanks for helping me to understand visual impairment better as a sighted person
ENTJ351 2 points 4y ago
Not a problem. "the poor her, she's blind!!!!!!" is the worst attitude you can take. The real problem is that I think too many parents coddle their little precious blind kiddos, who can break, because extra fragile. And then later those adults come out and have absolutely no idea what to do with themselves. They don't try, feel that they lack skill or can be or worse should be coddled for the rest of their lives. I absolutely think blind schools are the worse ideas. I favor integration, because we live in the real world where unfortunately you have to adapt to learn, and you will never be able have a blind only world or society. nor will you be able to be coddled all your life. Learning welp, some people maybe mean about my disability and I have to learn to speak up about it and say it's wrong, is paramount. As parents have to fight the school for materials, and keep on top of them, but it's doable and I think it's important. You can not ignore reality and hide amongst the blind. Kids can be mean, they don't understand, but adults don't either. By shunning the issue it's not going to help. You have to be assertive (not aggressive) as a a blind person if you want to get anywhere. Help her understand advocating for herself. Regular school is absolutely possible, there is so much tech. Everything from audio equipment to braille screens to braille materials. I whent through public school, and am studying for a political science degree some say it's one of the hardest. I am doing fine. I've done a lot of school and it's absolutely possible. Yes, have her learn braille and a screen reader.
Fearless is good. So was I, I was featureed in the blind organization magazine because I was unafraid to go surf. They asked to wanted to go surf. None of us had, everyone took two steps back and didn't go. I said that I would. I've done many things that people are shocked by. I've been called brave and courageous. I travel around the two counties where I live los angeles and orange county and have crafted a foursquare page of good places. I know los angeles and orange county well.
I am blind and have done everything from living alone, to that surfing trip, to water skiing, to running and winnning student body president, to getting a aa degree in creative writing, !running around as a student journalist interviewing people and then to passing out the papers it was my idea to the site students just put it on the racks and gave it to their friends, to traveling around many counties and cities, to many many other interesting things including getting on the computer and leading and forming a writing workshop and running it. Yeah, you try telling me to stop. I'll sho you by the grace of God I can achieve and do anything. I may be blind but I don't act disabled. I absolutely dislike acting that way.
Fearless is good. So was I, I was featureed in the blind organization magazine because I was unafraid to go surf. They asked to wanted to go surf. None of us had, everyone took two steps back and didn't go. I said that I would. I've done many things that people are shocked by. I've been called brave and courageous. I travel around the two counties where I live los angeles and orange county and have crafted a foursquare page of good places. I know los angeles and orange county well.
I am blind and have done everything from living alone, to that surfing trip, to water skiing, to running and winnning student body president, to getting a aa degree in creative writing, !running around as a student journalist interviewing people and then to passing out the papers it was my idea to the site students just put it on the racks and gave it to their friends, to traveling around many counties and cities, to many many other interesting things including getting on the computer and leading and forming a writing workshop and running it. Yeah, you try telling me to stop. I'll sho you by the grace of God I can achieve and do anything. I may be blind but I don't act disabled. I absolutely dislike acting that way.
BrailleNomad 3 points 5y ago
If you are in the US, you will qualify for early intervention services. That would put you in touch with a teacher of the blind/visually impaired. That person would be a great resource for you and could get your family on a great plan to start addressing some of these questions and concerns. I definitely agree with pseudoscientificfox about starting braille! Your TVI may also have a set of simulation goggles that could give you a rough idea of what your daughter is seeing. Sometimes larger eye clinics at childrens hospitals will have them as well. PM me with any questions!
lzilulu [OP] 2 points 4y ago
Thank you! We’re in Atlanta & really lucky to have a lot of resources & just figuring out what’s available. She’s going to get evaluated by our county school system & we’ve got an appointment at the Atl School for the Blind coming up.
I like the idea of learning Braille now - she’s just starting to learn the alphabet & it will probably come relatively naturally, I’d imagine. Do you think this is something that I could help her learn, or would we need a specialist?
I like the idea of learning Braille now - she’s just starting to learn the alphabet & it will probably come relatively naturally, I’d imagine. Do you think this is something that I could help her learn, or would we need a specialist?
JackEsq 2 points 4y ago
Fellow parent here, my daughter is 3.
You can absolutely learn Braille yourself and that way you can teach her. I recommend taking online courses with Hadley School for the blind. The courses not only teach you Braille but also techniques to help your child learn. There are also places to get free Braille books like Seedlings.
You can absolutely learn Braille yourself and that way you can teach her. I recommend taking online courses with Hadley School for the blind. The courses not only teach you Braille but also techniques to help your child learn. There are also places to get free Braille books like Seedlings.
BrailleNomad 1 points 4y ago
Hadley courses are great for those of us who are sighted! I would absolutely recommend them for you. It’s nice for you to have that skill to be able to help her and communicate better with her.
As far as braille for her, she will most likely get it when she starts school, so you wouldn’t need to teach her or worry about a specialist- the special education team will have a TVI for her. I start braille with my students at around age 4, and our academic kids are fully fluent by third grade.
As far as braille for her, she will most likely get it when she starts school, so you wouldn’t need to teach her or worry about a specialist- the special education team will have a TVI for her. I start braille with my students at around age 4, and our academic kids are fully fluent by third grade.
jelly_bean_twist 1 points 4y ago
I would recommend consulting a vision rehabilitation therapist is possible. They will help you mark appliances, stairs and other things in the house to generally make it easier to navigate for her and ultimately make the most use out of her residual vision. Finding and O&M instructor would be very helpful as well. I assume that a TVI would be able to set that up for you if not do it themselves.
MostlyBlindGamer 1 points 4y ago
I have congenital glaucoma, myopia and astigmatism doing with photophobia.
I had a very hard time learning to walk, as a child, only managed to walk up and down stairs without stopping at every step when I was 8 or so. Definitely make sure her vision is not affecting her basic mobility. You'll want to at least consider orientation and mobility training.
Is her vision otherwise corrected? Consider getting her glasses so she can learn to read and write in print as well as in Braille.
Sunglasses and hats are good for photophobia. You can even prescription glasses that darken on their own when exposed to bright sunlight. Just because lights bother her, it doesn't mean your little girl can't enjoy the outdoors.
One thing you'll need to remember, particularly if she just end up with low vision, is that you should use concrete words to describe things instead of pointing and directions. Don't say "look at the doggie over there,* say "look at the white doggie across the street, to your right, walking past the red fence." Don't say "the cookies are on the table," say "the cookies are in the glass jar on the kitchen table, close to the fridge." I hope that makes sense.
As far as what she sees, nobody can tell you. I lost the use of my left eye when I was 9 through optic nerve damage. I don't see hey, I don't see black, I just don't see. My brain adapted to the situation and just won't even bother processing the lost signal. It's like if I asked what you see inside a locked room. You Judy don't see anything.
Anyway, I understand this must be a challenging situation for you and I applaud your dedication to helping and understanding your daughter.
I had a very hard time learning to walk, as a child, only managed to walk up and down stairs without stopping at every step when I was 8 or so. Definitely make sure her vision is not affecting her basic mobility. You'll want to at least consider orientation and mobility training.
Is her vision otherwise corrected? Consider getting her glasses so she can learn to read and write in print as well as in Braille.
Sunglasses and hats are good for photophobia. You can even prescription glasses that darken on their own when exposed to bright sunlight. Just because lights bother her, it doesn't mean your little girl can't enjoy the outdoors.
One thing you'll need to remember, particularly if she just end up with low vision, is that you should use concrete words to describe things instead of pointing and directions. Don't say "look at the doggie over there,* say "look at the white doggie across the street, to your right, walking past the red fence." Don't say "the cookies are on the table," say "the cookies are in the glass jar on the kitchen table, close to the fridge." I hope that makes sense.
As far as what she sees, nobody can tell you. I lost the use of my left eye when I was 9 through optic nerve damage. I don't see hey, I don't see black, I just don't see. My brain adapted to the situation and just won't even bother processing the lost signal. It's like if I asked what you see inside a locked room. You Judy don't see anything.
Anyway, I understand this must be a challenging situation for you and I applaud your dedication to helping and understanding your daughter.
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