You seem to have a very positive outlook on life reguardless of your limitations. That's very important. I am a blind blogger and love to find people like you to blog about. So many sighted as well as blind people pigeon hole the blind community and it's people like you that break through the barriers. I hope you will check it out playingtheblindcard.blogspot.com
Kc, do you have what I'd consider normal depth perception for your vision level (can make out whether a cube is 3d or just a trick) or are you very, very blind?
I commented on your original video about ocular albinism, and in this video you mentioned dizziness spells. I have had those for years and I have ocular albinism as well, and we always wondered if it was related to my vision.... Well, they're not totally sure about what exactly caused it, but I recently found out I'm anemic, and being on iron supplements has helped the dizziness. I think it'd be something to look into if you're still experiencing dizzy spells. Hope things are well! Andrea
Casey... great video. Sounds like we have had similar experience though about 20 years apart. When I started getting involved in sports in 7th grade, I started to really come out of my shy-shell. Getting a cane is a great idea. If you don't think you need it, you can always throw it in your bag or whatever. But, if you find yourself in certain need of quick assistance, it will always be there.
Although I have been diagnosed as legally blind five years ago though not with the same condition as yours; I have never really looked up any videos about others on youtube.
I have to say though that your video’s are great.
I have a question for you though. With school do people seem to treat you differently? Also how do you tell teachers about your problem? I have tried, but they seem to forget constantly and I hate to keep reminding them. So do you have any suggestions on that?
@tealstar01 Thank you so much for the nice comment! I elaberate on all of this in my "being legally blind-school) video. As for telling teachers, they used to foregt with me sometimes too, but you need to get an individual education plan (IEP) to help you. :D
But yes I had an IEP and they still never remembered and every time I would remind them they would get so irritated and the guidance counselor messed up so much and just kept telling me it was my fault. So I had spent my senior year in a homeschool program. But, not that I am starting college they don't follow an IEP anymore and the disability coordinator never really deals with visually impaired students so I was just wondering what you did when teachers forgot. ss
@tealstar01 I'm entering college too, and the disability office has been wonderful. They gave me a sheet of paper with all of my accomidations to give to every teacher. When they forget, I would just kindly remind them, and if they won't do it you may need to get disability services involved becuase it's our right by law to have that service. :D
@KCfan7989 I am not sure what college you are attending, but that sounds alot better than mine.
But, thank you for that info about the disability services because I may have to contact them. The college isn't helping me with the computers in the class room and not allowing me to use my own.
I want to tell you how great I think this vid is because my son does not have the same eye condition as you he does not have albinism. He was born with Colobomas in his optic nerves which is a gap in the optic nerve. so he has nistagmus and is legally blind with 20/300 in right eye and 20/600 i left. I love your vid because as a parent of a legally blind child it nice to hear from and older person about how it was/is dealing with the vision issues. So thank you so much.
Awesome Video. I've known my entire life that I have a nystagmus in my eyes, but I went into the USMC and while in training I was diagnosed with Ocular Albinism, shortly after they dubbed it a liability and medically discharged me. Its weird that Ive Gone 20 years and never been told I have this. Fortunately Ive never been told i was legally blind either. Im game for conversation or to answer questions about OCA, Feel free to get a hold of me via Facebook or KesnerJosh@GMail.com
What a great video. I have OCA and am also registered legally blind.These sorts of videos are truly wonderful, especially for parents :) You should definitely come to the next NOAHconference. They will change your life!
@SolidCodec Please don't take this the wrong way, but I'm almost positive that being legally blind has nothing to do with any of that stuff. Just put yourself out there, TRY to accomplish what you want. Don't give up before you even try.
@KCfan7989 yes it has EVERYTHING to do with it, i try to meet girls on dating sties but have had no luck, and it's not like i can get a job anywhere, and don't say go to college, i had a very hard time in high school
@SolidCodec I Think the only reason you aren't achieving any of these things is a confidence issue. If you think you can't do it, you won't be able to. I am only 18 and have already been in a very committed romantic relationship... I also know many people who are blind, married with kids. It's ALL about the attitude. If you go up to someone and say "WAA, I'm blind. My life sucks." OF COURSE they won't want to date you! You have go say "I'm blind and I'm awesome b/c of it." School was hard? .....
@KCfan7989 relations are easy for you cause you're a girl, it's harder for guys, yep school was hard for me, most of the teachers were lazy assholes and didn't want to help me very much, and all the people i went to school with made fun of me except for the small group of friends i had
@SolidCodec Being a guy is a bad excuse. I know MANY legally blind men who are in relationships. I'm sure that teachers is college would not be lazy if you wanted to try, and EVERYONE gets made fun of. It's it's not about being blind, they are going to find something else to make fun of you for. Again, it's about the attitude. I made jokes about myself before anyone else could, therefore, rarely got made fun of. Anyone would be intimidated to....
Hi KC. Just wanted to say your video is dead on and nice to hear coming from someone with OA. I have 2 children (now 22 and 18) who are both affected with OA. It has definitely been a long road for them. My daughter especially doesn't like others to know about her vision and tries to fake her way through life. I think the thing that bugs her the most is that when she finally does tell someone she is legally blind, they assume she is totally blind and start waving their hands in her face.
Will be sure to forward this to Lila-Dawn's other friends and family to help them better understand what she has coming from yourself that has the same condition as her. :)
You are an inspiration. Oh and Lila-Dawn came in the room again and wanted to watch your video.
Excellent video! Our son, Matthew, is 19 months old now. He has the OA and nystagmus as well. We are actually doing therapy with him to help him gain more confidence in mobility. It is so heart warming to watch you :) As a mother, it makes me so happy to see someone so positive and just thriving despite OA. You look adorable...so grateful for your videos!!!
Nice video. :-) Just one small thing: If I close my eyes and touch my eyelids, I can feel that my eyes move quickly and uncontrollably. However, I don't have nystagmus, so I believe that these two things are not really related and the eyes' involuntary movement when closed is actually a normal condition. :-)
Hi Casey I watched your first video about a year ago. I have 2 daughters with oa2. Hailey is 5, and Julie is almost 2 I am so happy to have seen your video, It makes me feel alot better about my girls. I have to say you are a very talented young lady. Beautiful at that. Can you possibly make a video for younger kids,telling them about what ur childhood was like? or can you send one to my daughter Hailey. I know she gets frustrated alot, and i cant myself give her reasurance maybe u can-ty Thea
This is an excellent video. Our 2 year old daughter was diagnosed with Ocular Albinism when she was 6 months old. It is so nice to watch your videos (all of them) because you really have helped squash many of our relatives fears about how she will do in life. You are a class act Casey, and we wish you all the success you dream of as you deserve to do all you want to in life. Again, we thank you, and we will be anticipating more cool videos that you may offer in the future.
hello Casey...i my self have o.a along with my little brother ..its always nice to meet ppl with o.a ...i would really like to compare stories ...so i hope yo hear from u..katie
@jessigirlie4 lol, I just came to this video and saw you have a question posted here too.
I'll give you my two cents. I was an absolute horrible speller for the first 15 years of my life. I blame a lot of that on the nystagmus and not being able to focus. Eventually pride came into play and I overcame though (waits for applause).
He'll be fine, just be his mentor and don't ever let him use his vision as an excuse for not doing something well that he can!
Yo i saw your other video and im following you all the way on the ocular albinism thing.......if u find any new discoveries on it keep us posted and if me and my mom find anything we'll let you know........in your other vid u explained it so well i used it in my science project on ocular albinism :) thanx for explaining it better than i could :)
Great video. It's kind of neat how a lot of people seem to ask the same few questions. If you want to see your world shake w/o your brain making stabilization adjustments - dark room, one eye closed, and focus on a sharp lit object, digital clock/power led light. It's kind of neat.
You seem to have a very positive outlook on life reguardless of your limitations. That's very important. I am a blind blogger and love to find people like you to blog about. So many sighted as well as blind people pigeon hole the blind community and it's people like you that break through the barriers. I hope you will check it out playingtheblindcard.blogspot.com
nikkirae83 1 month ago
Do you have nystagmus as well?
dunstun365 1 month ago
@dunstun365 Yes, I do.
KCfan7989 1 month ago
Kc, do you have what I'd consider normal depth perception for your vision level (can make out whether a cube is 3d or just a trick) or are you very, very blind?
jjovereats 1 month ago
Im going trew wat u going trew I wish I could meet some one like u ur so strong about it congratulation stay strong
Mundo1987ps3 2 months ago
I commented on your original video about ocular albinism, and in this video you mentioned dizziness spells. I have had those for years and I have ocular albinism as well, and we always wondered if it was related to my vision.... Well, they're not totally sure about what exactly caused it, but I recently found out I'm anemic, and being on iron supplements has helped the dizziness. I think it'd be something to look into if you're still experiencing dizzy spells. Hope things are well! Andrea
andreaxx6 3 months ago
Casey... great video. Sounds like we have had similar experience though about 20 years apart. When I started getting involved in sports in 7th grade, I started to really come out of my shy-shell. Getting a cane is a great idea. If you don't think you need it, you can always throw it in your bag or whatever. But, if you find yourself in certain need of quick assistance, it will always be there.
rboesen1970 4 months ago
Regina Spektor.... YES!!!
black4ever018 5 months ago
Although I have been diagnosed as legally blind five years ago though not with the same condition as yours; I have never really looked up any videos about others on youtube.
I have to say though that your video’s are great.
I have a question for you though. With school do people seem to treat you differently? Also how do you tell teachers about your problem? I have tried, but they seem to forget constantly and I hate to keep reminding them. So do you have any suggestions on that?
tealstar01 6 months ago
@tealstar01 Thank you so much for the nice comment! I elaberate on all of this in my "being legally blind-school) video. As for telling teachers, they used to foregt with me sometimes too, but you need to get an individual education plan (IEP) to help you. :D
KCfan7989 6 months ago
@KCfan7989 Your welcome.
But yes I had an IEP and they still never remembered and every time I would remind them they would get so irritated and the guidance counselor messed up so much and just kept telling me it was my fault. So I had spent my senior year in a homeschool program. But, not that I am starting college they don't follow an IEP anymore and the disability coordinator never really deals with visually impaired students so I was just wondering what you did when teachers forgot. ss
tealstar01 6 months ago
@tealstar01 I'm entering college too, and the disability office has been wonderful. They gave me a sheet of paper with all of my accomidations to give to every teacher. When they forget, I would just kindly remind them, and if they won't do it you may need to get disability services involved becuase it's our right by law to have that service. :D
KCfan7989 6 months ago
@KCfan7989 I am not sure what college you are attending, but that sounds alot better than mine.
But, thank you for that info about the disability services because I may have to contact them. The college isn't helping me with the computers in the class room and not allowing me to use my own.
tealstar01 6 months ago
I want to tell you how great I think this vid is because my son does not have the same eye condition as you he does not have albinism. He was born with Colobomas in his optic nerves which is a gap in the optic nerve. so he has nistagmus and is legally blind with 20/300 in right eye and 20/600 i left. I love your vid because as a parent of a legally blind child it nice to hear from and older person about how it was/is dealing with the vision issues. So thank you so much.
supersillyface82 6 months ago
Awesome Video. I've known my entire life that I have a nystagmus in my eyes, but I went into the USMC and while in training I was diagnosed with Ocular Albinism, shortly after they dubbed it a liability and medically discharged me. Its weird that Ive Gone 20 years and never been told I have this. Fortunately Ive never been told i was legally blind either. Im game for conversation or to answer questions about OCA, Feel free to get a hold of me via Facebook or KesnerJosh@GMail.com
KiloEchoeZulu 6 months ago
What a great video. I have OCA and am also registered legally blind.These sorts of videos are truly wonderful, especially for parents :) You should definitely come to the next NOAHconference. They will change your life!
SnoWhiteSally 7 months ago
ur videos are awsome also u look awsome but why u not uploaded any video recently
mazran01 7 months ago
@mazran01 I just uploaded a new one! yay!
KCfan7989 7 months ago
@KCfan7989 do you need a cane or can you see where to go w/o
jjovereats 3 months ago
i am legally blind and man has it fucked up my life, i am 34, no life at all, no job, no friends, no girlfriend and live at home
SolidCodec 8 months ago
@SolidCodec Please don't take this the wrong way, but I'm almost positive that being legally blind has nothing to do with any of that stuff. Just put yourself out there, TRY to accomplish what you want. Don't give up before you even try.
KCfan7989 8 months ago
@KCfan7989 yes it has EVERYTHING to do with it, i try to meet girls on dating sties but have had no luck, and it's not like i can get a job anywhere, and don't say go to college, i had a very hard time in high school
SolidCodec 8 months ago
@SolidCodec I Think the only reason you aren't achieving any of these things is a confidence issue. If you think you can't do it, you won't be able to. I am only 18 and have already been in a very committed romantic relationship... I also know many people who are blind, married with kids. It's ALL about the attitude. If you go up to someone and say "WAA, I'm blind. My life sucks." OF COURSE they won't want to date you! You have go say "I'm blind and I'm awesome b/c of it." School was hard? .....
KCfan7989 8 months ago
@KCfan7989 relations are easy for you cause you're a girl, it's harder for guys, yep school was hard for me, most of the teachers were lazy assholes and didn't want to help me very much, and all the people i went to school with made fun of me except for the small group of friends i had
SolidCodec 8 months ago
@SolidCodec no need to swear it's no ones fault don't get all wound up about it.
sabi123ist 8 months ago
@SolidCodec Being a guy is a bad excuse. I know MANY legally blind men who are in relationships. I'm sure that teachers is college would not be lazy if you wanted to try, and EVERYONE gets made fun of. It's it's not about being blind, they are going to find something else to make fun of you for. Again, it's about the attitude. I made jokes about myself before anyone else could, therefore, rarely got made fun of. Anyone would be intimidated to....
KCfan7989 8 months ago
@SolidCodec ....make fun of me becuase I am so confortable in my own skin. When they see it's a weakness is when they make fun.
KCfan7989 8 months ago
@SolidCodec ..... It was hard for me too, bur they have technology to help us, I know blind people who went to Ivy League!!!!
KCfan7989 8 months ago
Hi KC. Just wanted to say your video is dead on and nice to hear coming from someone with OA. I have 2 children (now 22 and 18) who are both affected with OA. It has definitely been a long road for them. My daughter especially doesn't like others to know about her vision and tries to fake her way through life. I think the thing that bugs her the most is that when she finally does tell someone she is legally blind, they assume she is totally blind and start waving their hands in her face.
mrscgagne 8 months ago
Awesome Awesome Awesome!!
Thank you for this again.
Will be sure to forward this to Lila-Dawn's other friends and family to help them better understand what she has coming from yourself that has the same condition as her. :)
You are an inspiration. Oh and Lila-Dawn came in the room again and wanted to watch your video.
"Casey!! Daddy, it's Casey!! Can I watch Casey??"
lol you are one of her favorite people, and ours.
Thanks Casey
Travis (from facebook) :)
ravenflight20000 9 months ago
Excellent video! Our son, Matthew, is 19 months old now. He has the OA and nystagmus as well. We are actually doing therapy with him to help him gain more confidence in mobility. It is so heart warming to watch you :) As a mother, it makes me so happy to see someone so positive and just thriving despite OA. You look adorable...so grateful for your videos!!!
illinoismommy 11 months ago
Nice video. :-) Just one small thing: If I close my eyes and touch my eyelids, I can feel that my eyes move quickly and uncontrollably. However, I don't have nystagmus, so I believe that these two things are not really related and the eyes' involuntary movement when closed is actually a normal condition. :-)
majklvp 11 months ago
Hi Casey I watched your first video about a year ago. I have 2 daughters with oa2. Hailey is 5, and Julie is almost 2 I am so happy to have seen your video, It makes me feel alot better about my girls. I have to say you are a very talented young lady. Beautiful at that. Can you possibly make a video for younger kids,telling them about what ur childhood was like? or can you send one to my daughter Hailey. I know she gets frustrated alot, and i cant myself give her reasurance maybe u can-ty Thea
theamia1 11 months ago
what a beautiful soul..I love your energy.
MDkid1 11 months ago
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This is an excellent video. Our 2 year old daughter was diagnosed with Ocular Albinism when she was 6 months old. It is so nice to watch your videos (all of them) because you really have helped squash many of our relatives fears about how she will do in life. You are a class act Casey, and we wish you all the success you dream of as you deserve to do all you want to in life. Again, we thank you, and we will be anticipating more cool videos that you may offer in the future.
Travis & Nicole
ravenflight20000 1 year ago
Comment removed
ravenflight20000 1 year ago
I was born legally blind I have aniridia and nystagmus
softspoken0220 1 year ago
hello Casey...i my self have o.a along with my little brother ..its always nice to meet ppl with o.a ...i would really like to compare stories ...so i hope yo hear from u..katie
ktbuggs7 1 year ago
@ktbuggs7 Hi Katie. Awesome!! Sure, I'd LOVE to talk. You can message me anytime!
KCfan7989 1 year ago
@KCfan7989
awesome...so i know o.a ppl have the chance that they won't be able to drive so can you drive?
ktbuggs7 1 year ago
This has been flagged as spam show
What do you see?
mommamariaoftrevor 1 year ago
I loved this video. So much. Im uploading a video right now about ocular albinism.
FamilyAndLife 1 year ago
Do you have a hard time spelling? My little brother has OA and he is a horrible speller! haha My brother wants to try and learn braille too.
jessigirlie4 1 year ago
@jessigirlie4 lol, I just came to this video and saw you have a question posted here too.
I'll give you my two cents. I was an absolute horrible speller for the first 15 years of my life. I blame a lot of that on the nystagmus and not being able to focus. Eventually pride came into play and I overcame though (waits for applause).
He'll be fine, just be his mentor and don't ever let him use his vision as an excuse for not doing something well that he can!
furtivegain 1 year ago
@jessigirlie4 I have a VERY hard time spelling. haha I love reading, writing, and grammar, but hate spelling. :)
KCfan7989 1 year ago
I saw your other video a while ago too and i was really good! This one is too and i can relate to almost everything! I've got OA too :)
kenzie425 1 year ago
The dizziness is probably vertigo if it's inner ear. I had vertigo but it's better.
SuperHockeygoalie 1 year ago
Your video is great. You stated your answers very nicely. I am 37 and related to the questions and aswers since I too have abinism.
lvkoss 1 year ago
Yo i saw your other video and im following you all the way on the ocular albinism thing.......if u find any new discoveries on it keep us posted and if me and my mom find anything we'll let you know........in your other vid u explained it so well i used it in my science project on ocular albinism :) thanx for explaining it better than i could :)
Blackplague100 1 year ago
yay theatre! :D
spectacularrx52 1 year ago
Great video. It's kind of neat how a lot of people seem to ask the same few questions. If you want to see your world shake w/o your brain making stabilization adjustments - dark room, one eye closed, and focus on a sharp lit object, digital clock/power led light. It's kind of neat.
furtivegain 1 year ago
Nicely done. Takes a lot to disclose one's "differences" one may live with . Bravo. Keep the positive vibes and educational vids coming.
LEXPIX 1 year ago
hi :) i saw your first video some time ago and it was really cool and i could almost relate to everything you said =)
anyways thanks again for making videos like this and btw your singigng is AMAZING!!!!!! ;)
george04b 1 year ago
@george04b AWW! Thank you so much for the sweet comment! I forgot, do you have albinism too? Thanks for watching my other videos!
KCfan7989 1 year ago
@KCfan7989 you're very welcome :D no, i was born with toxoplasmosis and thats what caused my poor vision
george04b 1 year ago