Posted By admin on March 1, 2011
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 had the talk. 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. I really don’t know how else to explain it. Lyra’s albinism has always been a very open discussion topic within our family and with friends. 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. One reason for this would be so that they can learn to advocate for themselves. If a child on the playground asks Lyra why she has white hair, she can respond, “Because I have albinism.” If 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.” And believe me…this does happen.
I don’t think albinism should be some sort of secret that nobody ever talks about. I believe that would do more harm than good. 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 “When to tell?” would be…the sooner the better.