I have recently been thinking about Will’s awareness of his eye condition, Ocular Albinism. Since he was born with it, it is his normal and he probably isn’t aware that his eyes see differently than other people.
There was a discussion about child awareness in a Facebook Group for parents of OA/OCA children about when you “tell” your children about their condition. The responses got me thinking about what we are doing for Will. Some parents believe in telling their child at a young age that they are different and how. Others believe that you should wait until they have the maturity to handle some of the stigma that may come.
Jim and I have worked very hard to help our boys feel as typical as possible; for Jack with his tube and Will with his eyes. We try to treat them similarly to any other child, just being aware when they might need extra help. Jack’s tube went away when he was three, so he doesn’t remember it other than pictures. Up to this point we haven’t directly told Will that he sees differently, because I don’t think he can understand what it means.
The important thing for Will to understand is to tell adults and teachers when he can’t see something or needs help, basically advocating for himself. His personality is such that he is pretty vocal with his needs, so I am confident he will naturally ask for help. I want to make sure he has a balance with his understanding of being different, but knowing that he is still very typical in most other ways.
Over the next year as he gets ready for Kindergarten we will definitely make sure he understands his condition and when he should ask for help. He will need to know the name and how to explain it to people, but for now he is just too young to understand.
When do you think is the right time to make your children aware of conditions they may have?