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tobebubbas
member
Blind son - ONH
tobebubbas
member
Optic Nerve Hypoplasia
This is our son's diagnosis. We told our pediatrician at his 4 month check-up that he was not meeting our eyes almost at all anymore, and he rarely followed objects the way we expected.
Ten minutes with an opthamologist was enough for the Dr to let us know that his optic nerves were too small, minuscule. Even if his eyes work fine, they simply are not well connected to his brain.
At 19 months now he has three therapists - one for physical movement (he still won't crawl because his hands are his eyes, but he is walking well with his hands held and has several "walkers" to help him get around), another for visual therapy (which for him means learning to scan his surroundings with his hands and find out where specific objects are), and a third who focuses on feeding (because he literally does not understand chewing, so he's still getting puréed foods in a bottle and stage 3 chunky type baby foods, anything mashed and easy to swallow).
We know plenty of people with babies at similar ages, but as much as I know via his therapists that my son is learning well despite the disadvantage, it's still hard for me to see littler babies doing things my son cannot.
There are no charts that accurately reflect a "What to Expect"-type timeline for development in visually impaired children. I'm hoping someone can comment on this feed with personal experience or links to other parenting sites or blogs.
I've just started one to share a lot of the journaling I've done since he was diagnosed. It's barely up yet, but I hope that it will help keep his large family updated, as well as providing us with some helpful contacts who can share their own experiences with us.
From our family to yours, thank you for caring to read our story.
www.optimusprimoblog.tumblr.com
This is our son's diagnosis. We told our pediatrician at his 4 month check-up that he was not meeting our eyes almost at all anymore, and he rarely followed objects the way we expected.
Ten minutes with an opthamologist was enough for the Dr to let us know that his optic nerves were too small, minuscule. Even if his eyes work fine, they simply are not well connected to his brain.
At 19 months now he has three therapists - one for physical movement (he still won't crawl because his hands are his eyes, but he is walking well with his hands held and has several "walkers" to help him get around), another for visual therapy (which for him means learning to scan his surroundings with his hands and find out where specific objects are), and a third who focuses on feeding (because he literally does not understand chewing, so he's still getting puréed foods in a bottle and stage 3 chunky type baby foods, anything mashed and easy to swallow).
We know plenty of people with babies at similar ages, but as much as I know via his therapists that my son is learning well despite the disadvantage, it's still hard for me to see littler babies doing things my son cannot.
There are no charts that accurately reflect a "What to Expect"-type timeline for development in visually impaired children. I'm hoping someone can comment on this feed with personal experience or links to other parenting sites or blogs.
I've just started one to share a lot of the journaling I've done since he was diagnosed. It's barely up yet, but I hope that it will help keep his large family updated, as well as providing us with some helpful contacts who can share their own experiences with us.
From our family to yours, thank you for caring to read our story.
www.optimusprimoblog.tumblr.com
Re: Blind son - ONH
Instead of milestones, you will probably have a list of personal goals to work towards in his therapies. Focus on those goals and don't worry about the milestones.
Ooops didn't realize this was an old post!