How do you tell your child...?

So a parent asked the other day, “How do you tell your child she has ocular albinism?” The question revolves around her five-year-old daughter who is just beginning to notice her, “eyes don’t work so good.”

I feel for this young mother and her struggle. I also am amazed that this has not been a part of their daily life before now.

I do not remember a time when I was not aware that of being “different.” I have worn glasses since I was about 2. I have no real recollection of my parents “breaking the news to me.”

I don’t remember hearing the words albinism or albino until I was about seven. At that time, I was enrolled in the Louisiana State School for the Blind. My first understanding of albinism was my friends with OCA.

I think children generally know they are not all the same. Raising kids in a diverse world makes this all the more obvious. Children, when young, generally don’t care if someone is “different” as long as they can play. I think that is an important lesson for adults to remember. People are people.

Exploring the world with our children reveals numerous opportunities to find “teachable moments.” Moments in which we can notice, together, the variety that exists within nearly all things.

Apples come in different sizes and colors. Some are red but many are green and even yellow. They are still all apples. People are like this too. We come in a variety of sizes and shapes. We all have things we are good at and things with which we struggle. I am good at expressing myself. I have no fear of speaking to groups. I am however not the person you would want flying your plane. ... No really, that's not in my list of strengths.




So how should this mother tell her daughter she has albinism? I don’t think it needs to be some "talk" that is scheduled in Outlook. I think it needs to come in small doses. It needs to be a natural conversation that comes while looking at the way things are different yet the same. At five, her daughter is not going to understand genetics. She will not understand the concept of being "legally blind." She will understand that her friend cannot run as fast as she can. She will understand Green apples still taste good even if they are not red.

Not being afraid to talk about any disability is important to the development of a healthy self image. I learned to deal with classmates picking on me because my family and I had no problem joking about things I didn’t see. I was always proud of my “moon tan.” I liked living in my “cave” because I used dimmer lights within my own room to reduce glare.

My parents never sat me down and said, “Son… you have a genetic condition affecting 1/20000 people globally. Presenting with little or no pigment, reduced visual acuity, and nystagmus.” They didn’t need to. They loved me. They let me explore my world in the best way I could. The supported me and picked me up when I fell. ... And I fell a lot.



I think parents of children with disabilities often have guilt with which they must first cope. They must learn that the randomness of genetic combination is part of the diverse beauty that God has designed. We all understand that God’s fingerprints are on every child. Once parents stop blaming the random combination of DNA, and accept the wonderful gift they have in a child, they can begin to enjoy that gift.



There is no legitimate shame attached to disability. Why people feel shame for something over which they have no control is a mystery to me. Others may belittle us. That is their shame … not ours.

If you have a disability of some sort, how were you "Told?"