Blind and Visually Impaired Community
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First experience with a upside down prosthetic (self.Blind)
submitted by pvols1979
My wife and I adopted our son, Jonah, from China and have only been home for two months. Jonah is 5 years old and had both of his eyes removed around 1 year old due to cancer. He is our second adopted child and our second blind child. Today, we noticed that one of Jonah’s eyes was crooked. Our daughter does not have prosthetics, so we weren’t sure what had happened, but it looked like his eye was facing outward.
We reached out to some friends and discovered that we had some friends who have seen this with their children and they gave us some advice. Ultimately, my wife was able to remove the prosthetic and replace it properly within a few minutes and without causing a traumatic experience for Jonah. It turns out that his prosthetic had somehow turned upside down and that is why it looked wrong.
This was an interesting experience for us and for Jonah who has developed a strong bond with each of us, but still has years of trauma behind him which could have made this more difficult. We are so glad for friends who helped and for a son who was willing to trust his new parents to help him out.
We reached out to some friends and discovered that we had some friends who have seen this with their children and they gave us some advice. Ultimately, my wife was able to remove the prosthetic and replace it properly within a few minutes and without causing a traumatic experience for Jonah. It turns out that his prosthetic had somehow turned upside down and that is why it looked wrong.
This was an interesting experience for us and for Jonah who has developed a strong bond with each of us, but still has years of trauma behind him which could have made this more difficult. We are so glad for friends who helped and for a son who was willing to trust his new parents to help him out.
KillerLag 4 points 3y ago
Is he outgrowing the prosthetic? They don't usually move around that much, but at 5 years old, a kid's head would definitely be growing still.
pvols1979 [OP] 3 points 3y ago
Thanks for the comment. I don’t thinks so. We live in Nashville, TN and have been seeing a doctor at Vanderbilt who is really great. She has looked at them and told us they are good. But we will have to ask some more questions on our next visit. This is the first time we have had this happen. He felt uncomfortable, it seemed, even though it was one eye, I figured out what was going on by noticing he wasn’t keeping his eyes open as much as usual. Thanks for the thought. We will ask again.
KillerLag 6 points 3y ago
It's also possible he just touched it/moved it/rubbed it without realizing. People touch their face a lot more than they realize, and kids especially.
Aida_Hwedo 2 points 3y ago
I used to touch my eyes a lot when I was little, apparently for the fun of fighting my instinct not to.
Told Mom years later; she said that explained why I got so many eye infections...
Told Mom years later; she said that explained why I got so many eye infections...
KillerLag 2 points 3y ago
lol, yup. Eye infections are common, unfortunately
codeplaysleep 1 points 3y ago
You may want to take him to an actual ocularist and have them check the fit. If you're in Nashville, I'd recommend Scott Fiscus. He made my last prosthetic and was just wonderful to work with and, judging from his personality, I bet he's great with kids.
Having your prosthesis turn upside down is fairly uncomfortable to mildly painful. My new prosthesis has stayed put since it was fitted, but my old one turned over fairly frequently and I could just flip it back around without taking it out (not pleasant, but not really painful - and probably a good indicator it needed replaced. :P). He could have done it in his sleep, rubbing his eyes or something.
Having your prosthesis turn upside down is fairly uncomfortable to mildly painful. My new prosthesis has stayed put since it was fitted, but my old one turned over fairly frequently and I could just flip it back around without taking it out (not pleasant, but not really painful - and probably a good indicator it needed replaced. :P). He could have done it in his sleep, rubbing his eyes or something.
blackberrybunny 2 points 3y ago
Wow, that is amazing, because there are not a lot of people who would have first hand knowledge of what happened, and what you could do to remedy the situation. You have some awesome friends! And it sounds like you also have an awesome little son, and daughter. You guys are great parents for wanting to adopt blind children and guide them through life. I applaud you two!! Because there are also NOT a lot of people who would want to adopt a disabled child. And I hate to use the word 'disabled,' but I think you know what I mean. Raising a blind child can be a lot more challenging than a sighted child. But it will also be a lot more fulfilling. Happy Holidays to you guys!!! The world needs more people like you two!
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