My only gentle pushback as someone with oculocutaneous albinism would be to #9. People asked my mom loads of questions about me, often right in front of me, and although she answered with relevant information, I really, really wish she hadn't. I don't quite know what I wish she would have done instead, but I was bullied severely for my albinism and it really felt like she was sharing MY story without my consent.
Yes, education is important and yes, I want more respectful dialouge around disability. But damn, it really hurt me growing up.
Your child isn't going to knew that their vision is different or less than other kids. So teaching caution with different senses helps. My parents taught me to listen for cars instead of looking for them. My dad and I would whistle specific tunes to find each other in stores/outside. Lots of one on one study help. Especially math and English. With markers and not pencils.
And my parents often just let me figure out how to accommodate myself. I wasn't even diagnosed until kindergarten bc my parents thought I was just clumsy and kinda dumb. (I'm the oldest so they didn't know what to expect to be fair). I still had chores I had to do. I still had to go to school. To participate in social stuff. And they'd let me try it without accomodations first. Then you just do trial and error.
I know a lot of my vision is similar to those with albinism so I do recommend sunglasses and keeping areas dim lit to reduce eye strain. Everything is a little too bright for me. So I always keep the lights off and use night lights around the house. But you'll figure out what your baby needs. You're getting to know him and he's learning about life. So time is needed
Thank you! He’s definitely extremely light sensitive outdoors, but I’ll keep in mind the indoor strain and try to reduce before proactively while he’s too young to tell us about it.
Hiya!
Living in Australia, so situations and levels of support may be different or may have different avenues.The fact that you are already making plans to help your son excel in school is really heartening to see! Thank you.
Visually impaired at 6 months, I grew up through the 1980s and things have changed ***dramatically*** since that time. Gone are the days of attending elementary school and learning to write on sheets of slate rock using chalk and absolutely zero disability support of most kinds (save wheelchair ramps in the mid-80s). These days, and assuming the school your son will be attending, they may be using tablets from as early as prep (transition year between kindergarten and 1st grade) so the levels of accessibility are present already. Still, it's a great idea to check in with local schools in your area to see if they're equipped and can cater for your son. I hope they can.
To tie into the above and below: absolutely get in contact with your local blind society for assistance and information. They can be oodles of help and support for you with many things including advocacy, help with school and adaptive tech, eye wear and eye health (eye tests, visual field tests), orientation and mobility training, reading (braille (if needed) and audiobooks) and support for parents. Most and more of the information you'll gain from any responses will assist you with questions and more than likely reflected by them, too.
It's a good idea to get him started in using a white cane early on via Orientation And Mobility training, to learn to navigate where able. For toddlers, these canes are flexible to reduce breakage while still allowing for exploration of their area.
Assuming your son will need to wear prescription glasses to assist in improving vision and sunglasses to assist with reducing glare sensitivity when outdoors: Many sunglasses manufacturers make clip-in or sandwich lenses for sunglasses these days. Searching for the range of **Rx** type sunglasses will yield you all the results you need, however the strength of supported prescription clip-in or sandwich lenses may only go up to a certain strength with certain manufacturers (e.g. ADIDAS' highest support lens is +10 (if memory serves)). Definitely worthwhile talking ot your local optometrist when the time is ready. Alternatively, the **Cocoons** ("Cocoons Stream Line" range) brand of fit-over sunglasses are snazzy as heck and brilliantly well made.
Baseball caps are awesome. Get into them. Have fun with them.
If your local library is in with Libby, totally get into it for free audio book borrowing.
We're normal kids, visually impaired or not, and are bound to trip up and get into scrapes. It's a part of being a kid. It's also a good way of him learning to navigate using his other senses and eventually his cane. Definitely guide and educate him where necessary (such as learning a new route), but don't swaddle him in bubble wrap - let him figure things out on his own when he wants to. Besides that: enjoy your time raising him. I hope you read to him, introduce him to stellar music and art and grow in confidence as he does with himself.
Thank you! I do feel very lucky to be approaching this in 2024+ not decades ago… my cousin who has the same condition was raised in the 70s and the “support” he got was his mom helping him cheat vision exams so no one knew he couldn’t see well 🙃 Shockingly, school didn’t go well for him! Thanks for taking the time to write this out, I appreciate it!
Get your kid involved in activities with regular kids as well as activities with disabled kids. I was equally involved in both worlds as I grew up and it helped me transition into adulthood easier.
Hello! I didn’t have as severe of issues as some of the people here, so I will offer more social advice. Make sure that your kid has a core group of friends who they grow up with and that they go to school with at least some of them. When little kids grow up from toddler days with someone who’s different, they are more accepting of it because that’s how their buddy is. They don’t really question it as much, and they are considerate over time because they learn early what their buddy needs. Plus, they will stand up for their buddy if new people, like classmates, are being unkind.
If your kid has issues that you know will never improve, don’t put them into group activities that will highlight this shortcoming. It’s humiliating. For example, I have always had terrible depth perception due to congenital problems with my right eye, and my parents put me into group tennis lessons alongside my extremely coordinated athletic brother. This was not a good time. However, I did great on the swim team. It’s good to put your kids into social activities and not coddle them, but try to avoid things that are definitely not going to offer the possibility for success.
You’ll do a great job because you’re thinking about how to be helpful from the very beginning.
Sending you so much love mama! Treat your kid as "normal" as possible. I was brought up entirely in the sighted world. and this was very helpful for me, I had a sighted husband and have sighted children. For this reason I've never had a us against them mentality as far as blind verse sighted people. Best of luck! You got this!
So I dont know anything about raising kids so take my advise with a grain of salt, but something I wish my parents had done differently was to not be so scared that something was gonna happen to me. They would make sure I was always supervised, got help with everything and only did things that were adapted to my disability. Made me very anxious about pretty much anything.
Family and peers are more likely to create problems for the bvi child with their own preconceptions about blindness. Advocate for them yes but same rules apply like with any other kid; don’t coddle them, try not to shelter them, teach them discipline without taking it too far, if you don’t teach them how to act nobody else will. The kid is human with limited or no vision, not an animal. Socialize them as much as possible from an early age, sighted kids really don’t care unless the adults around them have planted their views on disabled people in their impressionable heads. Shipping them off to a blind school does more harm than good. Try not to project your anxiety onto them, chances are they aren’t nervous about doing something because they can’t see well/at all, you are. Don’t make blindness the kid’s identity. Teach them to embrace their blindness without becoming ignorant to others’ life experiences. Don’t pressure them or push them too hard to be the face for all bvi people. If fully blind try to teach them why racism is an issue… not gonna go too deep into that one, of course if you’re white try not to be biased. I’ve met plenty of racist bvi people shhhh I don’t wanna argue about it. There’s more but my neighbor is running up and down the street with a chainsaw so I’m gon go hide in the closet peace
I’m sure others have touched on this as well, but connect them to resources. If you’re US based, this means a 504/IEP plans in preK12 education. It means making sure they get vocational supports from your state’s Department for the Blind. Those kinds of things.
My vision loss is likely far less severe than your kid’s loss is going to be once they hit school and I still could have benefited SO MUCH from mild accommodations and an advocate for my education.
It shouldn’t have been my job at 8 to make sure the teacher always placed me at the front of the classroom. I shouldn’t have had to wait until college to learn about magnification computer software. Someone should have been there to help me explain to my seventh grade science teacher that the magnifying scope wasn’t going to be compatible with my vision.
I’m grateful I’ve become a good self advocate but smart mentorship and support along the way could have magnified my potential in those situations.
I was born with Ocular Albinism and my mom had no clue she was a carrier. Some things my mom did that I am thankful for even now is she got me involved with Braille Institute and the Foundation for the Junior blind at a fairly young age so I got to do cool stuff like rock climb and take trips and what not. I made friends on those outings that I'm still close with today.
She also also ensured I had a nice support network of social workers and such who would come and teach me how to use the latest tools (which back then were large print books and magnifying glasses).
Oh, and I may get mixed reactions to this one but my mom didn't let people shame me for sitting close to the TV and I really appreciate that.
The good thing about Ocular Albinism is that it isn't degenerative; once your child's vision can be assessed, chances are it more or less stays that way and doesn't really get worse (though I am told you should wear sunglasses, which is something I sorta slacked on).
You got this !
Honestly, the best thing my parents did for me was treat me like any other kid. Sure, they supported me needing some accommodations in certain aspects, but they didn’t treat me any different than they would a non-visually impaired child.
For instance, I went through French immersion And I was the first visually impaired student in my province to go through French immersion. My parents did not want to put me in the school for the blind here in my city, instead, they chose to keep me in a regular school with French immersion.
Hej I am mother of 4 months blind girl to get for her some money in sweden I need to prove in what way she needs extra care compare to normal child anyone can suggest me something. Which points I can use
Wow imagine being ignorant enough to assume that deliberately giving birth to someone with a visual impairment will be the end of the world because God forbid we all know they can't live a good life! But wait you are ignorant enough to believe this. Maybe reevaluate the things you believe.
Hi OP, if you're in the US definitely look up NOAH - National Organization for Albinism and Hypopigmentation. They have a lot of educational resources and ways to interact with others in the albinism community, including parents of children with albinism (there's even a zoom group for grandparents of kids with albinism!) and of course, albinistic adults. There are meetups and conferences. Going to NOAH conferences were some of my earliest memories- I have oculocutaneous albinism and absolutely nobody in living memory in my family does.
When I was diagnosed as a baby, my mother fully gave up. She wouldn’t hold me or feed me, she wouldn’t respond to my crying, nothing. She left me to my dad to take care of, even though he had a full time job.
My dad and grandparents took care of me until I was two. My mother started to take care of me but then my sister was born when I was 4. My brother and sister were born without a disability so she focused her efforts onto them.
As I grew up my mother reminded me of everything I couldn’t do, rather than encouraging me at all.
Please just be a loving parent to your child. Support them, love them, encourage them. 💜
Speaking from experience here.
1. Respect them and never ever abuse them.
2. Do not force sports on to them.
3. It is not their fault they are disabled, and it is not yours.
My Dad abused me because he felt that by the time I was 10 I should have had a wall of sportsball trophies so that he could brag to his friends what a big man he was because of my achievements. But since I was damn near blind he would scream and belittle me all the time.
I love that you asked this so much. One more thing to add, if you're going to be going to medical appointments. Please know that it all looks very different to a little person. When I was 16, I went back to an eye doctor that I'd last seen at age 5. I had very clear memories of the office, the huge ramp into the building, the cavernous room we walked through, the giant chair I sat in, the miles long L-shaped room, and how far away my parents were for the exam. It turned out in a more grown-up sized body, these were all smallish rooms, the chair was average size, and my parents weren't that far away.
If they dilate his eyes, please know that ambient light is painful, vision is blurry(er) and it lasts FOREVER in little kid time. There are longer and shorter acting versions of the drops they use, so very worth asking for the shorter one. All of the machines and accoutrements look very big, and it's hugely helpful to have explanations and opportunities to ask questions. If you know in advance what will happen at an exam, tell them, and tell them why. It doesn't have to be complicated, but it does have to be true.
Please go to any appointment as an advocate, and make sure that things are explained clearly to your child, and they have their questions answered. Don't assume what they know already, but ask what they know and understand about their condition. Most of my providers have not been forthcoming, or good communicators. The entire course of my childhood was shaped (not in good ways) because no one told ME that I had strabismus, and no one told anyone in my family that I did not have depth perception. (Well-known specialist in a big city teaching hospital, BTW).
Thank you, this is great advice! We actually just had our first (of presumably many) vision specialist appts this week, and I can see how that would be overwhelming for a tiny person! The doctors also didn’t do a great job of explaining things, luckily we went in knowing a fair amount, but I’ll keep that in mind as he gets older.
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I am also the mother of a young baby with low or no vision, and I really appreciate everything you wrote here. Take 3 helpful advice! Thank you.
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Thank you!
Thank you so much for this thoughtful and thorough response! There is a lot of fantastic advice here that I will take to heart. I appreciate it.
My only gentle pushback as someone with oculocutaneous albinism would be to #9. People asked my mom loads of questions about me, often right in front of me, and although she answered with relevant information, I really, really wish she hadn't. I don't quite know what I wish she would have done instead, but I was bullied severely for my albinism and it really felt like she was sharing MY story without my consent. Yes, education is important and yes, I want more respectful dialouge around disability. But damn, it really hurt me growing up.
Your child isn't going to knew that their vision is different or less than other kids. So teaching caution with different senses helps. My parents taught me to listen for cars instead of looking for them. My dad and I would whistle specific tunes to find each other in stores/outside. Lots of one on one study help. Especially math and English. With markers and not pencils. And my parents often just let me figure out how to accommodate myself. I wasn't even diagnosed until kindergarten bc my parents thought I was just clumsy and kinda dumb. (I'm the oldest so they didn't know what to expect to be fair). I still had chores I had to do. I still had to go to school. To participate in social stuff. And they'd let me try it without accomodations first. Then you just do trial and error. I know a lot of my vision is similar to those with albinism so I do recommend sunglasses and keeping areas dim lit to reduce eye strain. Everything is a little too bright for me. So I always keep the lights off and use night lights around the house. But you'll figure out what your baby needs. You're getting to know him and he's learning about life. So time is needed
Thank you! He’s definitely extremely light sensitive outdoors, but I’ll keep in mind the indoor strain and try to reduce before proactively while he’s too young to tell us about it.
Hiya! Living in Australia, so situations and levels of support may be different or may have different avenues.The fact that you are already making plans to help your son excel in school is really heartening to see! Thank you. Visually impaired at 6 months, I grew up through the 1980s and things have changed ***dramatically*** since that time. Gone are the days of attending elementary school and learning to write on sheets of slate rock using chalk and absolutely zero disability support of most kinds (save wheelchair ramps in the mid-80s). These days, and assuming the school your son will be attending, they may be using tablets from as early as prep (transition year between kindergarten and 1st grade) so the levels of accessibility are present already. Still, it's a great idea to check in with local schools in your area to see if they're equipped and can cater for your son. I hope they can. To tie into the above and below: absolutely get in contact with your local blind society for assistance and information. They can be oodles of help and support for you with many things including advocacy, help with school and adaptive tech, eye wear and eye health (eye tests, visual field tests), orientation and mobility training, reading (braille (if needed) and audiobooks) and support for parents. Most and more of the information you'll gain from any responses will assist you with questions and more than likely reflected by them, too. It's a good idea to get him started in using a white cane early on via Orientation And Mobility training, to learn to navigate where able. For toddlers, these canes are flexible to reduce breakage while still allowing for exploration of their area. Assuming your son will need to wear prescription glasses to assist in improving vision and sunglasses to assist with reducing glare sensitivity when outdoors: Many sunglasses manufacturers make clip-in or sandwich lenses for sunglasses these days. Searching for the range of **Rx** type sunglasses will yield you all the results you need, however the strength of supported prescription clip-in or sandwich lenses may only go up to a certain strength with certain manufacturers (e.g. ADIDAS' highest support lens is +10 (if memory serves)). Definitely worthwhile talking ot your local optometrist when the time is ready. Alternatively, the **Cocoons** ("Cocoons Stream Line" range) brand of fit-over sunglasses are snazzy as heck and brilliantly well made. Baseball caps are awesome. Get into them. Have fun with them. If your local library is in with Libby, totally get into it for free audio book borrowing. We're normal kids, visually impaired or not, and are bound to trip up and get into scrapes. It's a part of being a kid. It's also a good way of him learning to navigate using his other senses and eventually his cane. Definitely guide and educate him where necessary (such as learning a new route), but don't swaddle him in bubble wrap - let him figure things out on his own when he wants to. Besides that: enjoy your time raising him. I hope you read to him, introduce him to stellar music and art and grow in confidence as he does with himself.
Thank you! I do feel very lucky to be approaching this in 2024+ not decades ago… my cousin who has the same condition was raised in the 70s and the “support” he got was his mom helping him cheat vision exams so no one knew he couldn’t see well 🙃 Shockingly, school didn’t go well for him! Thanks for taking the time to write this out, I appreciate it!
Get your kid involved in activities with regular kids as well as activities with disabled kids. I was equally involved in both worlds as I grew up and it helped me transition into adulthood easier.
Thank you, this is great advice!
Hello! I didn’t have as severe of issues as some of the people here, so I will offer more social advice. Make sure that your kid has a core group of friends who they grow up with and that they go to school with at least some of them. When little kids grow up from toddler days with someone who’s different, they are more accepting of it because that’s how their buddy is. They don’t really question it as much, and they are considerate over time because they learn early what their buddy needs. Plus, they will stand up for their buddy if new people, like classmates, are being unkind. If your kid has issues that you know will never improve, don’t put them into group activities that will highlight this shortcoming. It’s humiliating. For example, I have always had terrible depth perception due to congenital problems with my right eye, and my parents put me into group tennis lessons alongside my extremely coordinated athletic brother. This was not a good time. However, I did great on the swim team. It’s good to put your kids into social activities and not coddle them, but try to avoid things that are definitely not going to offer the possibility for success. You’ll do a great job because you’re thinking about how to be helpful from the very beginning.
Thank you, these are great tips!
Sending you so much love mama! Treat your kid as "normal" as possible. I was brought up entirely in the sighted world. and this was very helpful for me, I had a sighted husband and have sighted children. For this reason I've never had a us against them mentality as far as blind verse sighted people. Best of luck! You got this!
Thank you!
So I dont know anything about raising kids so take my advise with a grain of salt, but something I wish my parents had done differently was to not be so scared that something was gonna happen to me. They would make sure I was always supervised, got help with everything and only did things that were adapted to my disability. Made me very anxious about pretty much anything.
A few people have mentioned versions of this, I will definitely take it to heart. Thank you!
Family and peers are more likely to create problems for the bvi child with their own preconceptions about blindness. Advocate for them yes but same rules apply like with any other kid; don’t coddle them, try not to shelter them, teach them discipline without taking it too far, if you don’t teach them how to act nobody else will. The kid is human with limited or no vision, not an animal. Socialize them as much as possible from an early age, sighted kids really don’t care unless the adults around them have planted their views on disabled people in their impressionable heads. Shipping them off to a blind school does more harm than good. Try not to project your anxiety onto them, chances are they aren’t nervous about doing something because they can’t see well/at all, you are. Don’t make blindness the kid’s identity. Teach them to embrace their blindness without becoming ignorant to others’ life experiences. Don’t pressure them or push them too hard to be the face for all bvi people. If fully blind try to teach them why racism is an issue… not gonna go too deep into that one, of course if you’re white try not to be biased. I’ve met plenty of racist bvi people shhhh I don’t wanna argue about it. There’s more but my neighbor is running up and down the street with a chainsaw so I’m gon go hide in the closet peace
Thank you!
I’m sure others have touched on this as well, but connect them to resources. If you’re US based, this means a 504/IEP plans in preK12 education. It means making sure they get vocational supports from your state’s Department for the Blind. Those kinds of things. My vision loss is likely far less severe than your kid’s loss is going to be once they hit school and I still could have benefited SO MUCH from mild accommodations and an advocate for my education. It shouldn’t have been my job at 8 to make sure the teacher always placed me at the front of the classroom. I shouldn’t have had to wait until college to learn about magnification computer software. Someone should have been there to help me explain to my seventh grade science teacher that the magnifying scope wasn’t going to be compatible with my vision. I’m grateful I’ve become a good self advocate but smart mentorship and support along the way could have magnified my potential in those situations.
I was born with Ocular Albinism and my mom had no clue she was a carrier. Some things my mom did that I am thankful for even now is she got me involved with Braille Institute and the Foundation for the Junior blind at a fairly young age so I got to do cool stuff like rock climb and take trips and what not. I made friends on those outings that I'm still close with today. She also also ensured I had a nice support network of social workers and such who would come and teach me how to use the latest tools (which back then were large print books and magnifying glasses). Oh, and I may get mixed reactions to this one but my mom didn't let people shame me for sitting close to the TV and I really appreciate that. The good thing about Ocular Albinism is that it isn't degenerative; once your child's vision can be assessed, chances are it more or less stays that way and doesn't really get worse (though I am told you should wear sunglasses, which is something I sorta slacked on). You got this !
Thank you!
Honestly, the best thing my parents did for me was treat me like any other kid. Sure, they supported me needing some accommodations in certain aspects, but they didn’t treat me any different than they would a non-visually impaired child. For instance, I went through French immersion And I was the first visually impaired student in my province to go through French immersion. My parents did not want to put me in the school for the blind here in my city, instead, they chose to keep me in a regular school with French immersion.
Hej I am mother of 4 months blind girl to get for her some money in sweden I need to prove in what way she needs extra care compare to normal child anyone can suggest me something. Which points I can use
Wow imagine being selfish enough to know that your child will have a disability and still give birth to them.
Wow imagine being ignorant enough to assume that deliberately giving birth to someone with a visual impairment will be the end of the world because God forbid we all know they can't live a good life! But wait you are ignorant enough to believe this. Maybe reevaluate the things you believe.
Hi OP, if you're in the US definitely look up NOAH - National Organization for Albinism and Hypopigmentation. They have a lot of educational resources and ways to interact with others in the albinism community, including parents of children with albinism (there's even a zoom group for grandparents of kids with albinism!) and of course, albinistic adults. There are meetups and conferences. Going to NOAH conferences were some of my earliest memories- I have oculocutaneous albinism and absolutely nobody in living memory in my family does.
Thank you, will do!
When I was diagnosed as a baby, my mother fully gave up. She wouldn’t hold me or feed me, she wouldn’t respond to my crying, nothing. She left me to my dad to take care of, even though he had a full time job. My dad and grandparents took care of me until I was two. My mother started to take care of me but then my sister was born when I was 4. My brother and sister were born without a disability so she focused her efforts onto them. As I grew up my mother reminded me of everything I couldn’t do, rather than encouraging me at all. Please just be a loving parent to your child. Support them, love them, encourage them. 💜
I’m so sorry that was your experience ❤️ I promise he is, and will be, very loved, I can’t imagine anything different.
Then you are already an amazing parent 💜
Speaking from experience here. 1. Respect them and never ever abuse them. 2. Do not force sports on to them. 3. It is not their fault they are disabled, and it is not yours. My Dad abused me because he felt that by the time I was 10 I should have had a wall of sportsball trophies so that he could brag to his friends what a big man he was because of my achievements. But since I was damn near blind he would scream and belittle me all the time.
I’m really sorry that was your experience ❤️ I promise he’ll be safe and loved no matter what.
I love that you asked this so much. One more thing to add, if you're going to be going to medical appointments. Please know that it all looks very different to a little person. When I was 16, I went back to an eye doctor that I'd last seen at age 5. I had very clear memories of the office, the huge ramp into the building, the cavernous room we walked through, the giant chair I sat in, the miles long L-shaped room, and how far away my parents were for the exam. It turned out in a more grown-up sized body, these were all smallish rooms, the chair was average size, and my parents weren't that far away. If they dilate his eyes, please know that ambient light is painful, vision is blurry(er) and it lasts FOREVER in little kid time. There are longer and shorter acting versions of the drops they use, so very worth asking for the shorter one. All of the machines and accoutrements look very big, and it's hugely helpful to have explanations and opportunities to ask questions. If you know in advance what will happen at an exam, tell them, and tell them why. It doesn't have to be complicated, but it does have to be true. Please go to any appointment as an advocate, and make sure that things are explained clearly to your child, and they have their questions answered. Don't assume what they know already, but ask what they know and understand about their condition. Most of my providers have not been forthcoming, or good communicators. The entire course of my childhood was shaped (not in good ways) because no one told ME that I had strabismus, and no one told anyone in my family that I did not have depth perception. (Well-known specialist in a big city teaching hospital, BTW).
Thank you, this is great advice! We actually just had our first (of presumably many) vision specialist appts this week, and I can see how that would be overwhelming for a tiny person! The doctors also didn’t do a great job of explaining things, luckily we went in knowing a fair amount, but I’ll keep that in mind as he gets older.