NOAH AOC

Hi, all. My name is Khemarat, My husband and I live in Bangkok, Thailand. Our four-month old son, Tharm, is diagnosed with OCA1, the condition which is considered rare in Thailand. We are now having difficulty finding TVI and low vision specialist who could help Tharm, to prevent delays in his development and to maximize his use of vision. Basically there is no TVI service in Thailand. However, we do have very nice PO and occupational theorapist who are very willing to help. Tharm still can't focus on his mom's face or track objects. He has wandering eyes, a little bit of nystagmus and keeps looking down. However, he loves looking at toys with light. He hasn't yet met some developmental milestone, such as rolling. 

Since we have to perform the role of TVI ourselves, we'd like to hear suggestions and gather information about how to do it. How to stimulate our son to use his vision more.

Your advice would be very helpful. Thank you in advance.

Khemarat

Hello Khemarat, congratulations on your son and welcome! Some suggestions would be put a black or yellow fabric on the ground for your son to play on and put toys on it that would be contrasting. Black, white, and red toys. Highly contrasting toys slowly move them away so that he will reach for them. I used to take my daughter around and let her see and feel the leaves on the trees and the petals on the flowers. His mom can put some bright lipstick on and let him watch her talk or sing. A brightly colored ball, car, or train and roll them in front of him, to help him with tracking. Be aware of how sensitive he is to light so that he can see better. He may keep looking down if it is too bright, the sun or overhead lights. A hat with a brim may help, curtains, tinted windows etc. It may also be a null point but that usually develops later. Glasses may also be helpful. Let me know if you have any other questions!!!

Thank you very much for the tips.  Will definitely follow your suggestions.   One thing we are not sure about at the moment is the lighting in the room.  We have downlight with dimmer and our son seem to enjoy staring at it when we put him on his back.  Would that prevent him from seeing us clearly?

Another question is that when my son gets older, would he be less sensitive to light? 

Cheers,

 Khemarat

Babies with albinism do sometimes enjoy looking at soft lights. Flourescent lights are harsher. Glare off of surface(floors, tables, high chair trays can reflect light) can also be painful. The photophobia (light sensitivity) does reduce their vision due to glare and can give them eye fatigue or headaches. My son says it is all white out without his glasses. Imagine walking from a dark room into a lighted room, it is white with glare and painful until your eyes adjust to the light. When he gets older your son might seem to be more sensitive than he does now only because he will be using his vision more so it will be more obvious. My children wear black polarized sunglasses outside that wrap around and a hat. My son is more light sensitive than my daughter, so I make more light adjustments for him. This site might help. http://www.visionsimulations.com/index.php?option=com_content&task=view&id=55&Itemid=148

Khemarat,

Have you tried contacting the School  for the blind in Bankoky? Because the do have people that  do work with kids. Although it doesn't look like it starts as early as it does here in the United States. In the United States we have something called  Early Intervention services with go from birth to the age of 3 years old when they transition from Early Intervention to Preschool to Elementary to Middle School to High School and High School to adult services provided by a blindness agency.

Thank you very much Roxanne for your suggestions. We have just redecorated our boy's room to take care of the light that could affect him.  He seems to be more comfortable with the softer lights now. We try to stimulate him to use his vision more so really hope that the new lighting will help. By the way, Tharm's eyes always move up and down very rapidly whenever we turn the light on or off, no matter how slow we adjust brightness (we use dimmer), is that normal for infant with photophobia?

 

Hi Jessica,

    Thank you for your suggestion. We contacted the school for the blind, they do not provide service to kids but forward us to EI center which belongs to one university. We have tried to get in touch with this unit, but haven't been successful yet. Will keep trying.  

Khemarat