When to tell?

Posted By 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. :)


Comments

3 Responses to “When to tell?”

  1. Kimberley says:

    I agree. TOnight my 15 yo dd with albinism and I were talking about it and she has always understood that she has it, it means her eyes are different and she has to be protected from the sun. She had skin cancer at 10 yrs and she has always worn hats and sunscreen. Now she is older and takes responsibility for those things herself.

    We found this tonight looking for information on driving with albinism. She failed her eye exam in Drivers Ed so we need to explore further and visit the doc. I remember finding your blog many years ago when you started it, and I love to see little Lyra. In our discussion tonight my daughter said she is actually glad she has it, and that the thing that makes her most angry is when people find out she does and they say, ” You can’t be albino, your eyes aren’t red!” She has a little pigment in her light blue eyes.

    Thanks for sharing about your life. We are so spread out across the country/world, but the internet makes this kind of sharing possible.

    Kimberley

  2. Anna says:

    Just found your site tonight & so thankful for it. I was looking for info & your site is the most Iv found. A close friend who is 48 & has white hair, texted me that he was born with white hair. At first I thought he was kidding! Then I wondered if he was an albino (I didnt know any other term), but I thought he couldnt be because he doesnt have red eyes (theyre blue) & he doesnt have supper white skin (I used to know a woman who was & she did). He has very thick glasses though (like she did), so Iv wondered. I dont know anything about the internet, & Iv never used email, but when I tried to retrive a message tonight I couldnt access it. Id like to communicate with you, but I dont know how. Im concerned about him because he seems sick alot. He’s a Notre Dame graduate, smart, personable, & very successful. So, if he does have albinism, that should be encouraging to others. (I did ask him why he was born with white hair when he told me, because I wondered if he was albino, but he just said he didnt know. Maybe he doesnt know?!)2

  3. Anna says:

    I just read tonight that the gene that affects the eyes in albinism also affects the cells that control the immune system, or something like that. Also, my friend has never dated much or been married, & I wonder if he’s been self concious about his white hair & eyesight. As an adult he dyes his hair & eyebrows off & on. He has said his white hair makes him look 20 yrs older, & it does, but I told him I dont care 1 way or another.

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