NOAH AOC

Is it just me or when someone sees your child you want to instinctively say that they have a form of albinism. I find myself doing it. I am so fascinated with my son because his condition is so rare. The other day we were at the pharmacy (a small family owned) and the pharmacist said  "wow your kids are getting big". And there I was about to say "he's doing so well despite the albinism" when I stopped myself and muttered, "oh, he ahhhh is 8 months old."  I realized he may not want people to know. I would respect that. It is obvious he looks different then me and my husband and his sister. We are dark hair and dark eyes. He does have blond hair and blue eyes. Although, it is not like he has the obvious form of albinism with the white hair and pinkish eyes. (He had the white hair when he was born.)  I am proud of my son and do not want to put him on display. I just feel like I want to tell the world and inform all the ignorant people out there about albinism.  But then, at what expense. When he gets older will he be mad at me?  I don't think I am going to just tell people anymore. (When I say tell people. I mean strangers in passing, obviously I would tell Dr and the school etc.) This has actually kept me up at night for a week thinking about it.  I think I am thinking about this too much. But then again maybe not.  Does anyone else do this????

Jill

 Jill, I have felt THE EXACT SAME WAY!!!  When we're out in public we attract a lot of attention because I have twins, so a lot of people stop and talk to us.  The first question is usually "Are they twins?" and the next comment is "Wow they are so blonde!" or "Where did they get the blonde hair from" as they look at me and my husband with our dark brown hair.  We've begun to just smile and say "Thanks" or "We were blonde as kids" (which is true...) and move along.  I agree with you that I am proud of my children, struck by the uniqueness of their condition, and not ashamed in any way of their diagnosis.  However, how much information does Joe Blow on the street need to know about my kids?  When they are older, how are they going to feel if I go telling every grandma that stops us in the grocery store that they have albinism?  So for now I just don't bring it up with the casual strangers we meet.  I do, however, tell the people that I have regular contact with (i.e. coworkers, friends, family) all I can about albinism to help spread awareness of it.  But i would love to know better ways of spreading the knowledge WHILE respecting my children's feelings.  Great topic to post about! Can't wait to hear what other people have to say!

I get that same feeling when someone goes by and basically "pets" my children.  I just want to say hey they have albinism and are normal human beings so quit petting my kids.  It happens frequent enough that I just want to smack the ignorant ones and give them a lecture on what albinism really is.  I use to tell people about the condition too until one day we were in an elevator and a lady told me she would like to kill my daughter for her hair.  I finaly decided that the ignorant people like that are going to need more information than what I can tell them in the short time I have contact with them.

V interesting topic indeed!  I think we all have to find the position that we are most comfortable with and that level of comfort has to work for the child, his/her siblings and us as parents.  I too found myself telling some people randomly in the early days and then wondered later why i had done that?  And for me I felt that i was being somewhat disloyal to my new born baby girl who had her whole life ahead of her & here I was telling people  about her "genetic condition".  So now 19 months later that she is up and walking and chatting, with fabulous blue eyes  & very blond hai, i don't feel obliged anymore to share her condition with just anyone.  Grace has amazed us and we feel more able to deal with her condition now than in the early days. The fact that my husband and I are pasty Irish people with fair skin & blue eyes & our son is also very fair with light brown hair, we feel that Grace won't stand out all that much as it would seem that she does have some level of pigment and for now  is managing  ok with her vision.

So in summary we now operate on a needs to know basis or if it's a relevant part of a discussion. Don't get  me  wrong it's not  at all something that we hide but it's  more that our hope is that Grace will have a  very normal & full life and that her condition will just be a part of that. For that reason we are now very selective about who we tell. That mightn't work for everyone but we feel that this approach is in her best interest and that of our son!

I can also relate.  Every where we go we attract a lot of attention also, first because we also have twins and then second of all because of Daltons shocking white hair.  I wish I had a dollar for everytime we have been asked "are they twins"  or the comment "Look at his white hair."  If we had we would be rich. 

I dont automatically tell everyone about Dalton and why his hair is so white unless other comments are made.  I find myself also being torn at what I should say.  On one hand I think I should inform people but then on the other hand I think it is none of their business. But I also want to raise my son not to be ashamed of his physical characteristics.  I have also found that when I tell people he has albinism they just look at me like I have two heads.  So, I usually just judge the situation to decide if they truely need to know of his condition and then go from there.

I dont think any of us should be ashamed of wanting to scream to the mountain tops and let everyone else know how special our children are to us.

Cristy 

Personally I don't see the concern with how an current infant would feel when they're older about your telling people now.  I habitually inform people commenting on my son's "light/fair/white" hair that he has albinism - I see it purely as an educational opportunity.  My son obviously couldn't care less now.  If he starts caring, then I'll adjust.

I agree that I also have viewed the opportunity to educate others to a point.  All that I have found out about albinism and especially as it relates to my Andrew I find fascinating but I am now wondering whether I should stop automatically sharing his diagnosis with casual aquaintances and chance meetings with strangers because I know that he is so much more than just a medical condition.

I don't reflexively introduce myself, my husband, or our daughter with our assorted afflictions and am wondering if I should stop doing such with Andrew.  Just because albinism is more visible than excema, diabetes, or cancer doesn't mean that everybody in town needs to know the medical background.

Not that I have a problem with educating others regarding albinism, I just am realizing to this point I have been letting his diagnosis define how I describe him instead of all his other attributes.

Jill,

Interesting topic!  My son is now 4 years old with OCA.  When Zach was a baby (under 1 year old), I too found myself almost out of control with telling everyone.  I remember telling a group of ederly women that he had albinism just b/c they commented on his hair.  They ALL looked at me like "What did she just say"?

After he turned 1, but especially after he turned 2-2.5, I really watch what I say and how I say it--and who I say it to.  He was hearing me and in his own way--understanding the information.  At this time too, my older son (he is 17 months older without OCA) was ALWAYS listening and picking up on what I was telling people.  So instead of Zachary saying "I have albinism, blah, blah, blah"--Andrew was saying TO ZACH "you have low vision, you can't as good as me" etc....

This was an eye-opener for me.  So, I do completely understand you, but they are listening and by 2-3 years old, they know alot more than we think.  Yes, I still tell people about albinism and educate....., but I really do pick and choose my words when I am with Zachary or Andrew.  Lots of time now, I pull someone aside to tell them he is VI and may give them a suggestion (like at the library or some event).  I always make the special arrangements ahead of time and without Zach so he doesn't hear (school, soccer, swimming lessons, staying at a friends house etc..).

With time, it all comes together.

Joanna

 Candi,

In reference to your comment, "...the short time I have contact with them."  I've mentioned these before, but NOAH makes these "business cards" with 4 pictures of people with albinism on one side and a brief description of albinism on the other side.  They're great for those people you just don't have time for.   If you email NOAH, I'm sure Lori could send you some.  

We went a step further and made our own: Lyra's Business Card.     I can educate people AND show off pictures of my cutie.

Mashawna 

I have to go with the majority on this one.  I rarely tell people that my kids have albinism.  Close friends and family know the whole story, but they mostly live in a different town.  My daughter and I went to an amusement park today, and we were literally stopped by at least 25 people who wanted to comment on how pretty her hair was and wanted to know where she got it.  Another 10 commented on her movie star sunglasses.  Only three idiots asked if it was natural (Riley's only three).  If I stopped to try to educate all of these people, I'd never get anything done.

We also live in a small town.  I'm afraid that if I tell everyone on the street that pretty soon they would be known as "those albino kids".  I kind of feel like I am allowing them to have some control over their condition if they can decide who should be told.  Maybe it will backfire on me, but I would like to keep their visual limitations as a secondary influence in their lives.  I've also found that most people are not really interested.  Most people who interact with the kids regularly know that the kids are missing some pigment in their eyes which affects their vision and makes them photophobic.  No one has ever asked what it's called or how they inherited it or where they can get more information.  All they want to know how it will affect their storytime, dance class, etc.  

Like I said, maybe I'll regret it later, but I figure that you can always tell people later, but you can't "untell" it.  I understand advocacy and hope that eventually the kids will be comfortable enough to assume that role, but I can't force it on them, and I don't think that it is something that every elementary school kid can handle. 

Courtney

I dont tell every person I meet.  I feel like his hair, and 'cool daddy' sunglasses give him enough attention... and really, it isnt anyone's business.   I do find myself telling an 'old friend from an old job' or someone that I have known for a long length of time, but as far as complete strangers?   Naaaa.   My oldest stepson is in a wheelchair, but I dont find it neccesary to tell everyone who comments to him, that he has Cerebral Palsy.  When Cash is older, it is his choice if he wants to 'explain' himself to people, or his friends.  I dont want to make him feel like he HAS to.   Most of the time if I DO try to explain, people seem very puzzled and confused, and it ends up being some drawn out conversation... when all they were doing was admiring his pretty hair.  lol   

 I totally understand how you are feeling. I have two with albinism and all I hear is how white they are and how their heads are cotton tops. Sometimes I do explain albinism because I want more people aware of it but sometimes I just smile and nod. Of course my middle daughter has albinism and sensory processing disorder so I have to explain the SPD more than I do the albinism, she can sometimes act out

 I feel the same way also.  I've found myself very torn about who needs to know and who doesn't.  When we get comments on Ryker's hair I usually just say, "Isn't it beautiful, we love it!" unless it is somebody I feel needs to know then I go on and explain.  The average joe doesn't need to know my child's complete medical history and low vision concerns any more than they need to know about my other children.  Don't get me wrong, I do educate the people that are directly involved with Ryker and seem genuinely interested in his condition.  I think all of you are doing whatever you can to help your children grow up in a world that they will always be unique in.  Our children will soon be thankful for all that we have done to help the world learn about albinism in a positive light!

Kelli

Hey everyone thanks for responding. I feel better that most people are or have gone through the same thing. I am going to stop telling people. Of course family and friends are different. And even with them we will most likely have a different approach. I was back and forth with writing this topic. I am so glad I did.

 I have had only one person ask me if my son was an "albino". I was in shock. He was about 5 months old and it was our neighbor.  I came home and cried. Again, I am not ashamed of our son, but the fact that he got called out like that in front of a lot of people. I actually felt bad for Andy.  I told the neighbor he does have a form of albinism. And as someone said earlier, my neighbor looked at me as if I had two heads. 

It is so funny how the word "albino" can so be offending now. I know i have used that word in the past, but not anymore!!!

Thanks again everyone....

Jill

I used to refer to the people who would stare of make comments, the "grocery store people". We often went to the grocery store on outings. My kids have OA, not OCA so the blonde hair wasn't what attracted the comments, it was the nystagmus. I'd get a lot of the "he must be really tired".

Some people I would just smile at and say, 'isn't he adorable' (he was/they were), sometimes I'd say "he has low vision, but is doing great'. Definitely answered in an as needed way. As they got older, I did become aware of how I commented as I wanted my kids to feel confident and not bothered by others comments. Most people just need education. Lots of people have zero tact, which always amazed me.

When my oldest was in 9th grade, he started telling people - "look what I can do"...people thought he could make his eyes move at will.

Thought that was pretty clever.