NOAH AOC

My daughter Alexis is 3 and has become social and when she meets someone she walks right up to the child's face and gets a good look and says hi.   Some children are easy going and other's are put off by this.  I explain that she cannot see very well `to the child and she is trying to see them.  Teacher's, occupational therapist, and others have suggested that this is a learned behavior and she needs to be taught not to do it.  This seems cold and uncompassionate in my view I would appreciate seeing who I was talking too but I have absolutely no experience with this.  I would really love a myriad of views and advice in this area.  I would really appreciate it!!

Hmmm...this is a tough one.  While I agree with you that it really is nice to be able to 'see' who we are talking to, for most of us with albinism, or other visual impairments for that matter, in order to really see all of the details of a persons face, like eye color, we need to infringe upon that persons personal space.  In some other societies, personal space isn't such an issue, but here in the US it is.  Even as a person with albinism who has 20/200 best corrected acuity, I don't like to have my space invaded, and feel put off when people get too close.  As an adult, I can handle it without discomfort if it is someone I know can't see well, but other than that...

I don't know as if it is a learned behavior or not, but for your daughters future social life, it probably would be best to find a way to teach her to stay an appropriate distance from people, particularly those she does not know well.  Perhaps helping her find other cues of figuring out.\/remembering who someone is.  I know she is little now, but this will be easier as she grows alder.  Even now at work, I use cues like the sound of someone's walk (our store manager wears cloppy shoes and drags her heels, we all know when she is coming!), my brother (who also has albinism) always wears a baseball cap, usually a MIlwaukee Brewers one, if someone is close enough I can usually tell if they wear glasses, the sound of voices, hair color and style, height, weight (sorry!!)  All of these and more are useful in helping identify people.  They are learned, usually mostly without realizing it.  Sometimes, though, a little prompting helps.

There is a thread somewhere about a good laugh, which has stories of  those wonderful 'albino' moments.  One is about not recognizing your neighbors when they get a new hairstyle, etc.  Or someone who usually rides a bike skates by.  I call it people out of context.  I see people at my job frequently who it takes me a couple of minutes to plae, because I am used to seeing them in a different context--teachers from my daughter's school, the owner of the gas station.  I know them, but when I see them 'oout of place', I have to figure out who they are in ways other than the norm!  Fortunately, most of them know me well enough to say who they are!

I don't know if this has been any help.  I'm sure Lexie will understand more as she grow up.  It is hard to balance wanting to see, or have your child be able to see, everything, and realizing there are some situations you have to keeep your distance, so to speak, and let your other senses/skills kick in.

Good luck, and hard as it is, it isn't too early to try to change the habit.  The sooner the better, social graces are often difficult for people with low vision to learn, and the better a person's are, the easier their life will be.

Joni 

I've been doing a little thinking about this, and I actually think I can help this time!!

I have noticed that quite a few people that I know ten to introduce themselves when they are a shhort distance from me, or when they are driving by in a car.  Like, Hi Joni, its so-and -so.  I never really asked anyone to do this, other than to comment that I can't see who anyone is in a car.  But they do it when walking, too, like in the bank.  It is very conversational, not a put down to me at all, and helps me to know who has approached me and to start in on conversation right away.

You might try something like that with Lexie's friens, as well as trying to teach her to keep an acceptable distance from people.  When telling her friends, and even adults, that she can't see well, you might add. "Why don't you tell Lexie it is you when you walk up to her.  Like, "Hi Lexie, its Timmy".  That way she will know who it is, and even start learning people's voices and such.  And those people will learn to do this sort of thing automatically with people who can't see well.  A chance to educate, without anyone realizing it!

 Granted, not everyone will do it, or even do it consistently, but when it does happen, it sure helps! It will also take some of the load of Lexie!

Joni

Great idea Joni.  I even notice Ryker at 21 mos. getting really close to kids his own height or smaller, but no one his age really cares yet!  He has gone up to other adults thinking they were mom or dad but many kids his age do that cuz all they see are peoples' legsat their height!  Starting this habit will be very helpful to him later in life.  Thanks for the advice!

Kelli

While I agree with you in that she's obviously doing what she needs to do, maybe someone who's around can help to intervene?  Can you or a teacher step in as you see her getting close and put your arm around her and help her to make the introduction from a "safe" distance?  Some people are really funny about invading personal space, kids included, and you definitely wouldn't want a child pushing her back which would feel awful.  At 3, she should certainly have enough support around her, in the form of adults, to help her out with this until she can learn why some kids don't like it.

Something else I've learned is to give our daughter, now 6,  visual cues about a person so she doesn't have to get so close as to try to examine facial features.  Like, "Oh, here comes Sarah, she's wearing a red shirt today," or "Look, there's Jenny, she has her hair in ponytails!"  I've advised teachers to do this as well since as Joni mentioned, out of context or even just with a different hairstyle, it's sometimes tough for her to recognize people.  She even did this to me once when I showed up at school unexpectedly--she wasn't sure it was me, even when I was talking to her, until I got really close to fix her hair.  Anytime we're with a large group of kids, I'll give her the visual cues--Hayden is wearing a number 11 on his shirt or Josh is wearing a blue hat--to help her find her way.  Or if someone comes up and says hello to her, I'll often tell her quietly who it is so she's clued in without having to study the face so closely.

I am taking notes on all of these great ideas.

The next time Katie sees Lexie, I will make sure she tells her it is Katie. Although Katie will hug her, so there goes the space issue, lol.  A few times a week Katie says she wants to go play with "My Lexie"..

Sometimes it is kinda hearbreaking to hear what is going to happen with Andy, but at least I will know what to expect. I know everyone is different, but it is a nice heads up...

Wow, this is some really practical advice.  Thank you so much, I know this is going to help a lot.  I really appreciate you all taking the time to help me, help her and Joni I do not know what we would do without you!