Blind and Visually Impaired Community
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Parent of Visually Impaired Newborn (self.Blind)
submitted by asj38
Hello r/blind community. My son was born 4 weeks ago and we got some devastating news this week that he will likely have very little to no vision in both eyes. All hope is not lost and we are fighting to save any possible avenue of long term vision.
I could have posted this once we know for sure if he will or won’t have vision but I’m preparing for the worst and hoping for the best. The possibility of him losing all vision has been playing on my mind and as a first time father, I want to be as prepared as possible to give my son the best shot at great life. And so I am reaching out to this awesome community to see if y’all could direct me to any wikis or support channels for parents of newborns with little to no vision? We live in the San Francisco Bay Area.
PS: we have excellent medical support and will take their advice but want to understand what (if any) are best practices for how we should start to prepare ourselves and our son for this new reality.
I really appreciate any support.
UPDATE: My son was diagnosed with closed funnel retinal detachment in both eyes. Left eye also has considerable pressure and hemorrhage. The reason is not confirmed but likely due to FEVR that runs in my family. I was wondering if anyone has experience with this diagnosis and has any positive stories to share.
EDIT: Thank you so much for the empathy, kindness and extremely helpful advice on this sub. I have connected with the School District and Blind Babies Foundation and spoken with a visual therapist who has been assigned to our case. Really appreciate the support.
I could have posted this once we know for sure if he will or won’t have vision but I’m preparing for the worst and hoping for the best. The possibility of him losing all vision has been playing on my mind and as a first time father, I want to be as prepared as possible to give my son the best shot at great life. And so I am reaching out to this awesome community to see if y’all could direct me to any wikis or support channels for parents of newborns with little to no vision? We live in the San Francisco Bay Area.
PS: we have excellent medical support and will take their advice but want to understand what (if any) are best practices for how we should start to prepare ourselves and our son for this new reality.
I really appreciate any support.
UPDATE: My son was diagnosed with closed funnel retinal detachment in both eyes. Left eye also has considerable pressure and hemorrhage. The reason is not confirmed but likely due to FEVR that runs in my family. I was wondering if anyone has experience with this diagnosis and has any positive stories to share.
EDIT: Thank you so much for the empathy, kindness and extremely helpful advice on this sub. I have connected with the School District and Blind Babies Foundation and spoken with a visual therapist who has been assigned to our case. Really appreciate the support.
[deleted] 17 points 2y ago
[removed]
CloudyBeep 5 points 2y ago
If you're concerned about him getting hurt from playing goalball, there are many other sports that blind people can do, but you're going to need to do the work of finding them because people won't know about you to tell you.
Expect his braille skills to be exemplary. If you have low expectations, he won't read fluently; he will internalize your expectations of him about this and everything else. The employment rate for blind people is very low—around 30% in your area—but being able to read braille well increases your chances of full-time employment by an incredible margin.
Expect his braille skills to be exemplary. If you have low expectations, he won't read fluently; he will internalize your expectations of him about this and everything else. The employment rate for blind people is very low—around 30% in your area—but being able to read braille well increases your chances of full-time employment by an incredible margin.
asj38 [OP] 2 points 2y ago
Thank you for your kindness. My son will get so much love not just from me or his mom but family and friends that it might physically hurt him. I appreciate the guidance and will reach out once we know how much vision he will have long term. Thank you!
BlueZone123 1 points 2y ago
Perhaps not physicaly, but many people get so much love that in a misguided sense of over protection, blind people don't develop essential skills of independence. Love your child, but have high expectations that your baby will grow up to be independent .
Shyanneabriana 9 points 2y ago
The lighthouse for the blind is right in San Francisco. They’re a very good organization. They have groups for parents of blind and visually impaired children as well as classes for when your kid gets older and he wants to learn how to do basic tasks like cooking, cleaning, and working in a professional environment. I have heard nothing but good things about them.
I am so glad you are reaching out and trying to find resources for your child. I know that my parents were very overwhelmed when they learned that I would be blind when I was about six months old. They wondered how I would complete basic tasks and get around as well as work.
It was a lot for them. They were very sad.
But, I am pretty successful at traveling, living on my own, studying in college, and I am eventually going to find my dream career.
Your son is capable of the same.
His vision does not determine his life. There are so many ways for blind people to do everything that they want to do. They just have to find new workarounds and different ways of achieving the same goal.
While it won’t always be easy, there is a lot of professional blind people who have made something of themselves and I’m not just talking about celebrities or singers. Also, if you start finding resources early, you, as the parent, will be absolutely prepared to meet the challenges when they inevitably occur.
It makes me very happy to see that a parent is reaching out so early. The more you know, the better!
I am so glad you are reaching out and trying to find resources for your child. I know that my parents were very overwhelmed when they learned that I would be blind when I was about six months old. They wondered how I would complete basic tasks and get around as well as work.
It was a lot for them. They were very sad.
But, I am pretty successful at traveling, living on my own, studying in college, and I am eventually going to find my dream career.
Your son is capable of the same.
His vision does not determine his life. There are so many ways for blind people to do everything that they want to do. They just have to find new workarounds and different ways of achieving the same goal.
While it won’t always be easy, there is a lot of professional blind people who have made something of themselves and I’m not just talking about celebrities or singers. Also, if you start finding resources early, you, as the parent, will be absolutely prepared to meet the challenges when they inevitably occur.
It makes me very happy to see that a parent is reaching out so early. The more you know, the better!
asj38 [OP] 2 points 2y ago
Thank you. We will reach to Lighthouse for the Blind as soon as we know what level of vision he has. From the little I’ve read so far, early intervention and beginning this journey with the right information makes an outsized impact. Kids are resilient and I want to make sure we inculcate and nurture this strength from an early age. He (and we) will need it.
BlueZone123 2 points 2y ago
I'd recommend you reach out to the programs now, as they could start providing guidance and signing you up to needed resources.
Shyanneabriana 2 points 2y ago
That’s great!
carolineecouture 5 points 2y ago
I was born with congenital Glaucoma. I had my first surgery at three days old. You and your child can get through this. They will have a life even if it isn't the one you fantasized about.
I went to college, went to graduate school, have an MA. I work at a job that pays well and fulfills me. I'm married. We own our house.
I have a good, happy life.
There are things I can't do like drive but that is an inconvenience only.
Take advantage of any assistance available to you and your family.
Please PM me if you'd like to, I'd be happy to tell you more.
Be well!
I went to college, went to graduate school, have an MA. I work at a job that pays well and fulfills me. I'm married. We own our house.
I have a good, happy life.
There are things I can't do like drive but that is an inconvenience only.
Take advantage of any assistance available to you and your family.
Please PM me if you'd like to, I'd be happy to tell you more.
Be well!
asj38 [OP] 3 points 2y ago
Thank you for sharing your inspiring journey. It gives me a lot of hope. I sincerely hope we can motivate and keep him so focused and positive to achieve what you have.
AtriceMC 5 points 2y ago
Make sure he gets into a VI program for O&M, Braille and other classes as he grows. There are VI teachers that help kids of all ages.
JackEsq 4 points 2y ago
My daughter was diagnosed when she was 4 months old and that was 5 years ago. I completely understand the emotions you are going through. There is a grieving process for the life you envisioned for your son. He can still have that life, he will just go about it differently than you imagined.
It would be helpful to know the potential diagnosis to be able to connect with other families similarly situated. Otherwise reach out to your school district who will provide special education services now or in the coming months. There are also online courses you can take through Hadley School for the Blind to prepare you for raising a blind child.
Finally, please feel free to reach out to me directly. This is a very isolating experience and it is important to reach out and connect with other people who know what you are going through.
It would be helpful to know the potential diagnosis to be able to connect with other families similarly situated. Otherwise reach out to your school district who will provide special education services now or in the coming months. There are also online courses you can take through Hadley School for the Blind to prepare you for raising a blind child.
Finally, please feel free to reach out to me directly. This is a very isolating experience and it is important to reach out and connect with other people who know what you are going through.
texanpanda 3 points 2y ago
Reach out to your school system right away. It looks like the early childhood intervention in CA is called Early Start. Talk to them about getting services for your son. It’s never too early to start getting him Orientation and Mobility (O&M) and Teacher of the Visually Impaired (TVI) services. They will help you with pre braille when it’s that time to get him ready for braille. They will help you and your son in so many ways, and the earlier you start that, the better for all involved.
So_Wholesome 2 points 2y ago
Congratulations on your new son! That is so exciting.
I just want to reiterate that your son is only disabled because the world isn't designed with his needs in mind. Advocating for him in daycare and schools and showing him that his experiences are just as important as sighted peers is vital. Part of his life will be pushing back against the idea that he would be more deserving of a full, independent life if he were sighted, and you get to model that for him. Best of luck to you in this journey <3
I just want to reiterate that your son is only disabled because the world isn't designed with his needs in mind. Advocating for him in daycare and schools and showing him that his experiences are just as important as sighted peers is vital. Part of his life will be pushing back against the idea that he would be more deserving of a full, independent life if he were sighted, and you get to model that for him. Best of luck to you in this journey <3
codeplaysleep 2 points 2y ago
Congrats on the new baby! Hang in there, you will all be OK. You've gotten some great advice already. I'll add my 2 cents as someone who's been legally blind since birth.
Don't put off O&M training if he ends up with partial vision. This is the one thing I wish my parents had done for me as a kid that they didn't (not that I blame them, they probably didn't know to). I have enough vision that I did mostly OK without using a cane for a number of years, but now that I've shuffled past 40, I find myself needing it more and more - my eyesight is slightly worse and falls and injuries hurt more and heal slower. If I'd learned to use it when I was younger, I'd be so much better and more confident with it now. Even though I didn't realize it at the time, looking back I can definitely recall a lot of times where I would have benefited from using a white cane in my youth, both from a safety standpoint and also just from a quality of life one.
But the number one thing you can do RIGHT NOW? Snuggle that baby and give him all the love. My son drives me places now. They grow up fast! :)
Don't put off O&M training if he ends up with partial vision. This is the one thing I wish my parents had done for me as a kid that they didn't (not that I blame them, they probably didn't know to). I have enough vision that I did mostly OK without using a cane for a number of years, but now that I've shuffled past 40, I find myself needing it more and more - my eyesight is slightly worse and falls and injuries hurt more and heal slower. If I'd learned to use it when I was younger, I'd be so much better and more confident with it now. Even though I didn't realize it at the time, looking back I can definitely recall a lot of times where I would have benefited from using a white cane in my youth, both from a safety standpoint and also just from a quality of life one.
But the number one thing you can do RIGHT NOW? Snuggle that baby and give him all the love. My son drives me places now. They grow up fast! :)
oncenightvaler 2 points 2y ago
Good luck, glad you found this place, would love to chat to you over skype or have you call my cell and I could give advice and you could ask any questions that come to mind.
29 year old totally blind guy.
29 year old totally blind guy.
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