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?"

Advice for parents dealing w/ Albinism

So I was reading a post on the NOAH website posted my a young mother who has just heard that her six-week-old son has Ocular Albinism. Confused, scared, and feeling more than a little alone, she was reaching out to the NOAH comunity for answers. Below is a rework of my post to her. I will start with a quote from her initial encounter and diagnosis.

“When we went to the eye Dr. I was told he has OA then he pretty much walked out of the room. We just left with a lot of questions and don’t remember much from that visit"

Geee.... Why would a parent feel like they were left in the dark?

This is unfortunately no as uncommon as it should be. Many of these Doctors have not seen Albinism in person since school. Even fewer have seen Ocular Albinism. (there are only about 200,000 cases of OA in the United States.)

The advice I give to any parent of a child with any vision issue is below. It's not a white-washed, fluffy view. It is the ugly and lovely reality of parenting. Feel free to comment... I always do. :)

While Albinism is not as rare as many believe, there are many Ophthalmologists who have not worked with us regularly. Worldwide, the average occurance of albinism is 1/20,000.

I still have Doctors sometimes say something like, "WOW! I remember seeing retinas like these in school!" Let me tell you first to avoid any Dr. who is like that. They are not qualified to work for you.

I have OA.  (Ocular Albinism) I will be 43 this year. Red Hair, Blue Eyes, Pale skin. I do not drive, but I ride a bike. I read "normal text". I use a computer. (I do modify the contrast settings and use filters for glare.) I don't play ball sports, but I wrestled, did Gymnastics, and ran track. I was even the School Mascott in high school.

My best friend, from school, is a Judo player and has been in Two Olympic Games as a player with Albinism. He took Gold in 2000 and Bronze in 2004. He owns his own Dojo and trains Olympic athletes. He Coached the 2012 Paralympics Judo team. - UPDATE: He is working with the 2016 US team.

The best advice I can give is to love your child and let him be a kid first. Don't ever let the doctors, counselors, or teachers tell you what he can or cannot do. Let  you child discover the limits to his/her ability. (You will be amazed just how far those limits turn out to be from your initial expectations.)

Love him, enjoy him, and keep the insurance premiums up to date. (Grin)
Contact the local services for the Blind and visually impaired. They will know who in your area is best qualified to handle your child's visual needs. Let him have as much exposure to the “real world” as he can handle.

He will fall. He will get hurt. He will deal with teasing. He will learn to handle himself. ... If you let him.

I am a parent. I know we all want to believe we can shield our kids from the pain this world can bring. We want to hear the sweet and rosy side. I believe that does no good.

You deserve the truth.

The truth is that there will be challenges. The truth is that he will sometimes have his feelings hurt, be frustrated, and mourn the vision and pigment he never had.

He will also grow to accept himself for who he is. (If you accept him for who he is.) He will learn that he has more to offer than even he can imagine. He will grow to be a strong, confident young man who takes challenges in stride because he has learned how to deal with challenges every day.

All these can happen if you love, respect, and support him as a person first. I am a man first. I have albinism but that does not define me.So Here's the "elevator speech.…

Keep the sunscreen handy and plant a few Aloe plants for when you forget, or his stubborn pride means he won’t put the sunscreen on.

Hats are cool and unique ones can become a way to identify and define one's character. (I wear a Fedora a lot)

Sunglasses are ALWAYS cool.

Have a sense of humor. Don't be afraid or ashamed of the condition. We are advocates for our kids when they are young. They must learn to be advocates for themselves as they age. Being able to discuss the condition openly, honestly, and with humor makes the advocacy that much easier.

I am excited for you and your new adventure. Hang on. It’s going to be a wild ride. But it’ll be a blast if you let it!