My three month old nephew cant see. He has Ocular Albinism. Is anyone else dealing with this?

Question

This was a shock to all of us. We were told today that whilst he is not 100% blind, he will be partially sighted, probably receive one to one tutoring in school, and read big print.As this is completely new to us, any information from your own experience would be helpful.

Answer 1

My sister has this and has had it since 18 months while she isn't blind she is legally...She went to special schools to help her learn with this when she was a teen..She cannot drive and has poor depth perception..She leads a normal life other than the driving thing..She didn't like for the furniture to be moved as she memorizes where it is so tell mom and dad to not move things frequently..She also did not like to leave my mom very often as i suppose mom was her eyes..She did not like to wear the glasses and would hide them..lol..She also has the eye thing where her eyes twitch constantly..To search for a clearer visual field..She is however very intelligent..The child WILL lead a normal life she is living proof..WE live in WV if you would like I will have her email you if that would help? I am sure she wouldn't mind...Good luck to you hope this helps...

Answer 2

Hello. I'm 24 and have lived with ocular albinism all my life. My parents discovered my condition when I was 18months old. I have had experience with regular public school and also a specialized state run school for blind and visually impared students. When I was growing up my parents treated me the same as my sister. My vision was not a limitation-I did everything all the other kids did. I really didn't even know I was different until I was in school. Large print books, CCTV's, magnifying glasses, thick tipped black markers, and paper with thick black lines were provided free through the state. At first all the other kids were curious about why my book was huge and such but as the years went on I slowly became the outcast. I am a very intelligent person but by 3rd grade my teachers decided the "slow" class would be better for me. DON'T LET YOUR NEPHEW BE DONE THIS WAY!!! Yes, we are different but that doesn't mean stupid. By high school I found out about the state school for the blind and decided to try it. It was a completely different world. Everyone there was blind or low vision so no one was the outcast. The classes were smaller but the curriculum was the same as public school and it's so much easier to learn without the constant stares. Anyway, now I am a happily married woman and my husband has no vision problems. There are a few tips I can give from personal experience: buy sunglasses and lots of them-everyone in the family should wear them so your nephew doesn't feel different. Stock up on the sunscreen and everyone should be wearing it anyway, but your nephew is going to need it everyday-no exceptions. Make it fun and teach him early on to put it on himself and take responsibility for his skin. There are a lot of companies that make sunscreen that goes on blue and dries clear--it makes it more fun to use. Also, don't move furniture!! Visually impaired people like things to be in the same place and we tend to be very organized people. Moving furniture is like throwing us in front of moving traffic..lol. Give him the chance to experience life with others like him--most state schools for the blind have summer camps where kids from all other the state meet and spend a week or two. I would be happy to answer any questions you may have.

Jill