Blind and Visually Impaired Community
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People with Cortical vision Impairment, what do you see? (self.Blind)
submitted by catfacedgudgeon
Hi r/Blind,
My 2 1/2 year old son was recently diagnosed with a Cortical Visual Impairment stemming from a stroke he suffered at birth. He has Honomynous Hemianopia and has no left side vision, according to the doctor.
I still don’t know much about Cortical vision impairments as opposed to ocular and as my son is too young to let me know I was wondering if others could share how they experience the world and see. I originally thought his sight loss was the same as being blind in one eye but apparently that’s not the case.
Many thanks!
My 2 1/2 year old son was recently diagnosed with a Cortical Visual Impairment stemming from a stroke he suffered at birth. He has Honomynous Hemianopia and has no left side vision, according to the doctor.
I still don’t know much about Cortical vision impairments as opposed to ocular and as my son is too young to let me know I was wondering if others could share how they experience the world and see. I originally thought his sight loss was the same as being blind in one eye but apparently that’s not the case.
Many thanks!
KillerLag 3 points 5y ago
Because the cause of vision loss is in the processing portion (brain) rather than the sensory portion (eyes), it makes things a bit more complicated. It isn't always just the field loss, there could be other effects. For example, one of my clients had brain surgery and got CVI. He had severe trouble seeing cars.... unless they were red. For some reason, he could easily idenify red cars coming towards him, but not other cars. He may also like flashing lights or similiar effects (imagine sequins in the sunlight).
One common thing with that kind of vision loss (depending on exactly where the damage took place) is hemispatial neglect.
https://en.wikipedia.org/wiki/Hemispatial_neglect
In those cases, the brain itself doesn't percieve one side of things. They may eat only half a pizza, or only dress half of themselves. If you notice anything like that (it is usually quite notiacble), you should talk to your doctor about it.
With his left peripheral field missing, you may notice he bumps a lot into things on his left side (corners of the wall, chairs, coffee tables, etc). Depending on how his vision is, he may also have trouble with glass doors/walls (if the border of the glass is on the side he can't see, he may not even realize that there is a glass door in front of him. It would depend on his residual vision and how transparent the glass is).
Does your health care system have access to a Snoezelen room or Snoezelen pool?
https://en.wikipedia.org/wiki/Snoezelen
They can be helpful, although I don't believe there is currently a lot of research into it. It would be highly dependent on whether there are other factors that are effecting him. Talk to his doctor or therapist to see if they think that may be helpful.
https://hollandbloorview.ca/programsandservices/therapeuticrecreationandlifeskills/snoezelen/communitysnoezelenpool
I've taken some of my children clients to that location a number of times and they found it quite enjoyable, and it was a good method of having them engage new things at their own place. I have not had an opportunity to try a Snoezelen room, but I have heard good things from my coworkers.
One common thing with that kind of vision loss (depending on exactly where the damage took place) is hemispatial neglect.
https://en.wikipedia.org/wiki/Hemispatial_neglect
In those cases, the brain itself doesn't percieve one side of things. They may eat only half a pizza, or only dress half of themselves. If you notice anything like that (it is usually quite notiacble), you should talk to your doctor about it.
With his left peripheral field missing, you may notice he bumps a lot into things on his left side (corners of the wall, chairs, coffee tables, etc). Depending on how his vision is, he may also have trouble with glass doors/walls (if the border of the glass is on the side he can't see, he may not even realize that there is a glass door in front of him. It would depend on his residual vision and how transparent the glass is).
Does your health care system have access to a Snoezelen room or Snoezelen pool?
https://en.wikipedia.org/wiki/Snoezelen
They can be helpful, although I don't believe there is currently a lot of research into it. It would be highly dependent on whether there are other factors that are effecting him. Talk to his doctor or therapist to see if they think that may be helpful.
https://hollandbloorview.ca/programsandservices/therapeuticrecreationandlifeskills/snoezelen/communitysnoezelenpool
I've taken some of my children clients to that location a number of times and they found it quite enjoyable, and it was a good method of having them engage new things at their own place. I have not had an opportunity to try a Snoezelen room, but I have heard good things from my coworkers.
catfacedgudgeon [OP] 1 points 5y ago
Hi, thanks for your reply.
My son does sometimes neglect his left, I have seen him not eat the left half of his dinner, and when I turned the plate around, say ‘oh, I forgot!’, I think this is worse when he is tired.
He also does tend to crash into things a lot. As he is two he is a whirlwind of energy and likes to run full pelt around the house, and I think he relies on his familiarity with the layout to not crash, as if things move he will do.
I have access to a very small ‘sensory room’ at the local children’s centre, which seems very much based on the snoezelen room. I have only used it the once. While my son enjoyed it I was unsure as to how much help it was for him. I may give it another go! I haven’t heard of any snoezelen pools or similar where I am, but his physiotherapist has recommended hydrotherapy before for his physical rehabilitation and so I may ask her if she knows somewhere that takes the more multi sensory approach, thank you.
I don’t know when my son developed the Visual Impairment, it could have been from birth with his stroke, or I wonder if it was a year ago when he developed epilepsy. His first seizure left him with total left sided weakness which he hadn’t experienced before, and he has had to fully relearn the use of his left side to sit, walk etc and now working mostly on the use of his left hand. As all his other left-side problems are slowly improving with therapies, I wonder if it’s possible for his vision to improve in the same way, though I’ve not seen much to support that idea.
My son does sometimes neglect his left, I have seen him not eat the left half of his dinner, and when I turned the plate around, say ‘oh, I forgot!’, I think this is worse when he is tired.
He also does tend to crash into things a lot. As he is two he is a whirlwind of energy and likes to run full pelt around the house, and I think he relies on his familiarity with the layout to not crash, as if things move he will do.
I have access to a very small ‘sensory room’ at the local children’s centre, which seems very much based on the snoezelen room. I have only used it the once. While my son enjoyed it I was unsure as to how much help it was for him. I may give it another go! I haven’t heard of any snoezelen pools or similar where I am, but his physiotherapist has recommended hydrotherapy before for his physical rehabilitation and so I may ask her if she knows somewhere that takes the more multi sensory approach, thank you.
I don’t know when my son developed the Visual Impairment, it could have been from birth with his stroke, or I wonder if it was a year ago when he developed epilepsy. His first seizure left him with total left sided weakness which he hadn’t experienced before, and he has had to fully relearn the use of his left side to sit, walk etc and now working mostly on the use of his left hand. As all his other left-side problems are slowly improving with therapies, I wonder if it’s possible for his vision to improve in the same way, though I’ve not seen much to support that idea.
KillerLag 1 points 5y ago
It is hard to say whether his vision will improve or not.. the brain is surprisingly fluid. Sometimes it heals and there may be more vision, sometimes not.
For the left side neglect, definitely check with an O&M instructor regarding some trianing that may help. A white cane may or may not be of assistance, but sometimes it is useful to introduce it to them at a young age, even if they aren't going to use it when they are younger, because it may make it easier to use in the future (such as later in school and such).
The multisensory approach is often used for children who have multiple issues, but also for children who may have anxiety interacting with the world. For children with severe loss, it can be disturbing for them to have something suddenly thrust into their hands (and even worse if they are tactile defensive and they don't like the feel of the thing). Things like the Snoezelen room try to encourage the children to explore themselves and know it is safe. It isn't always useful for everyone, but it can be relaxing and sometimes that is what the kids need.
There are a type of glasses that may help, but I have never seen them used by children (the youngest person I know to have gotten this type of glasses was over 65 years old).
https://en.wikipedia.org/wiki/Prism_adaptation
https://www.selectspecs.com/blog/hemianopia-what-it-is-how-glasses-can-help-it/
http://www.hemianopia.org/index_files/Prismglasses.htm
They are called prism glasses, and they have prisms in the lenses that basically shift the image onto the side that can see. Many of my clients (as I mentioned, much older) have complained that they are difficult to use, though. Once again, definitely talk to your doctor to see if that option is good.
For the left side neglect, definitely check with an O&M instructor regarding some trianing that may help. A white cane may or may not be of assistance, but sometimes it is useful to introduce it to them at a young age, even if they aren't going to use it when they are younger, because it may make it easier to use in the future (such as later in school and such).
The multisensory approach is often used for children who have multiple issues, but also for children who may have anxiety interacting with the world. For children with severe loss, it can be disturbing for them to have something suddenly thrust into their hands (and even worse if they are tactile defensive and they don't like the feel of the thing). Things like the Snoezelen room try to encourage the children to explore themselves and know it is safe. It isn't always useful for everyone, but it can be relaxing and sometimes that is what the kids need.
There are a type of glasses that may help, but I have never seen them used by children (the youngest person I know to have gotten this type of glasses was over 65 years old).
https://en.wikipedia.org/wiki/Prism_adaptation
https://www.selectspecs.com/blog/hemianopia-what-it-is-how-glasses-can-help-it/
http://www.hemianopia.org/index_files/Prismglasses.htm
They are called prism glasses, and they have prisms in the lenses that basically shift the image onto the side that can see. Many of my clients (as I mentioned, much older) have complained that they are difficult to use, though. Once again, definitely talk to your doctor to see if that option is good.
IHaveAFunnyName 1 points 5y ago
Hey! My 2 year old also has cvi, as well as multiple other diagnoses. Dr. Christine roman-lansky, the foremost expert on cvi in the US, had described it as looking through a Kaleidoscope. You can see but can't make much sense of it. With practice they recognize things better. Little bear sees is a great website to explain and also they have a book. Dr Roman also has a great book. She is in Pittsburgh and does evaluations on children with cvi. There are also some cvi group on Facebook I highly recommend cvi cortical visual impairment awareness.
You will want a tvi or om who knows cvi (there is now a cvi endorsement that some have) to work with your son. Let me know if I can help or if you have any questions, good luck!
You will want a tvi or om who knows cvi (there is now a cvi endorsement that some have) to work with your son. Let me know if I can help or if you have any questions, good luck!
catfacedgudgeon [OP] 2 points 5y ago
Hi, thanks for your reply. I just checked out the little bear website it looks like a good resource so thank you for that, I’ll check it out fully a little later. I’ll also look up the Facebook groups.
I am in the UK; my son currently sees a consultant ophthalmologist regarding his vision but we’re about to start accessing ‘Sensory Support’ who will help support his nursery when he begins and also run groups for visually impaired and blind children. I am hoping they will be helpful for him. He also sees a neurologist but for some reason they only ever want to discuss his epilepsy and nothing else brain-related!
It is strange for me to think he has such a large vision loss, as he actually seems to cope with it very well. We also don’t know if he had this level of vision from birth, or if it arose a year ago when he suddenly developed epilepsy and a focal seizure left him with full left sided weakness. He had to to relearn to sit, smile, stand, walk and run, and he’s still working hard to regain his hand movement. I have been fairly oblivious to the level of his vision until more recently. Now I wonder what he sees, particularly when it comes to colour. He’s a very clever little boy but he still doesn’t know any colours yet, and I wonder if that is because his perception of colour is different or changes.
I am in the UK; my son currently sees a consultant ophthalmologist regarding his vision but we’re about to start accessing ‘Sensory Support’ who will help support his nursery when he begins and also run groups for visually impaired and blind children. I am hoping they will be helpful for him. He also sees a neurologist but for some reason they only ever want to discuss his epilepsy and nothing else brain-related!
It is strange for me to think he has such a large vision loss, as he actually seems to cope with it very well. We also don’t know if he had this level of vision from birth, or if it arose a year ago when he suddenly developed epilepsy and a focal seizure left him with full left sided weakness. He had to to relearn to sit, smile, stand, walk and run, and he’s still working hard to regain his hand movement. I have been fairly oblivious to the level of his vision until more recently. Now I wonder what he sees, particularly when it comes to colour. He’s a very clever little boy but he still doesn’t know any colours yet, and I wonder if that is because his perception of colour is different or changes.
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