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The Complete RED Survival Guide

Teasing
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I know that every "craniofacial kid" (I hesitate to use that term since it sounds so...undesirable) already knows a million gazillion times more about how to deal with teasing than any lame video made by PhD-ers can tell them.  Since I've had my share of teasing, staring, running, etc. as a result of my aesthetic presentation, I thought I'd share a few thoughts with y'all.  Mostly, this page is just something for you to relate to, not necessarily learn from (nothing teaches like experience).

I'm sure you've all seen a dreadful movie or two that offers this technique with child-actors with terrible "defects" (things like braces or glasses that everyone has at some point anyway) to demonstrate it's effectiveness and wonders:

TEASER: What are you, a four-eyed alien or somethin'? hehehe (pokes TEASER BUDDY in the ribbs)

KID WITH GLASSES: What did you say?

TEASER: I said: What are you, a four-eyed alien or somethin'? hehehe (pokes TEASER BUDDY in the ribbs)

KID WITH GLASSES: What did you say?

TEASER: I said: What are you, a four-eyed alien or somethin'? hehehe (pokes TEASER BUDDY in the ribbs)

KID WITH GLASSES: What did you say?

And so it goes thanks to copy/paste. After, oh say five more times:

TEASER: I SAID: WHAT ARE YOU, A FOUR-EYED ALIEN OR SOMETHIN'? ARGH ARGH ARGH (jabs TEASER BUDDY in the ribbs)

TEASER BUDDY: Ow!

KID WITH GLASSES: Wow [TEASER]! You just called me a four-eyed alien 8 TIMES! Wanna come over after school and say it to me again 8 MORE TIMES?!

Now the video would have it that our friend, Teaser would bug off, but lets be realistic okay? In real life, Teaser and Buddy would just think the poor kid is a four-eyed alien who is not only odd, but hard of hearing as well.  Needless to say, that method doesn't fend off people very effectively no matter what the child-psychologists say; they don't have Pfieffer's, Apert's, or Crouzon's, so why listen to them?  Here's how I dealt with...

STARING:

Before RED, I couldn't go to the mall without those little kids staring at me! I've always been told "they don't know any better" but that's a hard pill to swallow, and often times it's not even true. It seems that somebody would've fed them some manners by now!  It's tempting to stare them down in revenge, but don't. I've done it before, but now I realize that that was a bad idea. Here's why: If I am the first person that they've ever seen that looks "different" from them and I stare back or scowl at them then they'll think that every "different person" is mean. Remember Romans 12:19-21? It's the passage that talks about not taking revenge, and that the best way to take revenge is by being NICE!

So what do you do? You smile at them, maybe wave if they're not too close to you. Now I know, it's sickening, really, it is.  Hey, it's hard to act friendly to a little annoying kid. I know it and I know you know it, but just think of it as extra acting practice. Maybe you could even add it to your resume.

Wait! I'm not finished yet. We've covered the little kids, now how 'bout the big kids. I know "big" is relative, but I'm talking about the 9+ kids. These guys are the most annoying because they really do know better. What I recommend is to wink and smile at them (DON'T wave if you think they're over the age of 13, please). If they're somewhat nice, maybe they'll smile back. If they're paranoid, they'll run away. Simple and dandy.   

VERBAL TEASING:

First I want to address the fact that curiosity is not the same as verbal teasing. If someone asks you "What's wrong with your face?" yeah, obviously not the most sensitive person, but they probably don't mean to offend you. --But they will. That's why it's important to be patient with them and just reassure yourself that they just want to know more, no matter how much you want to break down and cry/scream. They truly are just curious.

Things NOT to do in this situation:

1+Tell them you're from Jupiter

2+Give them your life story

3+Give a dramatic account of how you became afflicted with your syndrome while doing a heroic act of kindness.

4+Use lots of medical terminology to gross them out

5+Threaten to give 'em the life threatening disease you have.

Why Not:

#1 - I think I've tried #1 before (or maybe I was daydreaming), either way, you'll get mixed reactions amd they'll think your wierd (not to mention rude). They'll know you were being sarcastic, yet it may be taken offensively. #2 would be too long and complicated. #3 is lying. #4 is too much brain food for the average person, not to mention rude and disgusting (I can't tell you how many people I have totally grossed out without even trying to.  I think we, having been in hospitals so often, are jaded and can tolerate an abnormal amount of "gross" medical talk, just remember that). #5 is lying, rude, and gives the impression that your condition is contagious (which too many people already believe without us feeding their thoughts).

What you should do: Just say "Oh I was born like this. Don't worry, I'm not contagious." then smile. Sound stupid and corny? Yeah, but that's also the best way to handle it. It's short, simple and true.

Oh, and one other thing: If and when they ask more questions, answer them! They just want to know. And don't be afraid to say "I don't know" when you really don't. Okay, I know some of you are starting to get mad at me, I think I'd be starting to get mad at me since I HATE answering those questions, but the fact is, as hard as it is to believe some times, most question-askers are simply curious. 

I love you guys and truly wish none of you would have to put up with this garbage on a daily basis, but I know that despite my hopes, many of you do.  I know you know how to deal with it better than anyone around you.  If you ever need to vent over the internet, you're always welcome to email me! :)