On more than one occasion I have heard other parents of children with albinism ask the following question: At what age should we tell our child he/she has albinism? This question really boggles my mind. It’s a legitimate question, just not one that we ever had to ask. Lyra knows she has albinism, but there was never a specific point in time when we sit her down and hadÂ the talk. Â My opinion on this is that there should never be a time or age where you have to TELL your child that he/she has albinism because it should just always be known. Â I really don’t know how else to explain it. Â Lyra’s albinism has always been a very open discussion topic within our family and with friends. Â I can’t imagine not talking about it.
I think it is important that a child with albinism know and understand his/her condition from the very beginning. Â One reason for this would be so that they can learn to advocate forÂ themselves. Â If a child on the playground asks Lyra why she has white hair, she can respond, “Because I have albinism.” Â If Â a preschool classmate asks her why she has to get so close to the book during storytime, she can reply: “Because my eyes work differently.” Â And believe me…this does happen.
I don’t think albinism should be some sort of secret that nobody ever talks about. Â I believe that would do more harm than good. Â I would never want Lyra to think that were ashamed or trying to hide the fact that she has albinism from her or anyone else.
So I guess my short answer to the question of Â “When to tell?” would be…the sooner the better. 🙂