FOR MOEBIUS MOMS AND DADS
I came across an interesting blog, and an interesting post in that blog, that I would interest all of you.  The blog is written by a mom somewhat like yourselves--like you in that she has a child with very definite cranio-facial issues, "somewhat" in that her child does not however have Moebius Syndrome.  Still--she knows what it's like to have a child classified by society as "different", and she cares for her child as fiercely and intently as anybody...just like all of you.  And she has an interesting take on the what you've all dealt with--other folks giving "the stare" to your child:
"Let’s be honest, we are programmed has humans to take a peek, have a gawk, sneak a looky-loo even when we probably should just mind our own business. For example, you know when you are driving along and you come upon a car accident? I feel like I should not be looking at the aftermath of what is surely a traumatic event in someone’s life and yet it is as though there is a magnetic pull and I have to be a rubbernecker and have a look (while paying attention to operating the vehicle I am driving!).

We naturally are drawn to things that are different or unfamiliar. Our curiosity is triggered when something out-of-the-ordinary comes into view. Most of us have learned or have been taught that staring is impolite. We might take a casual peak at something and then be as equally casual when we look away. You know what I am talking about….pretending you are looking at something outside when really you are trying to catch a glimpse at that lady’s wild hairdo or that man’s far-too-skimpy cut off shorts! I have done it and I know you have, too. I was in NYC with my father and we were having breakfast at a local greasy spoon (8th and 52nd) and lo and behold, Jennifer Carpenter (actress who plays ‘Debra’ on the show Dexter) strolls in with script in hand and sits at the counter to have her breakfast. My father has his back to her and I am obviously a bit star struck. He proceeds to do the old rubbernecking move when I stop him abruptly and say, “Is that where we saw the play last night?” pointing out a window beyond Ms. Carpenter as though I do not even see her there. My dad turns and looks out the window while staring at her in his peripheral vision. You get the idea. There are discreet ways of having a look at someone or something.

But what if a) you have never been taught that staring uncontrollably is rude or b) you have never learned the art of staring discreetly? What if your desire to have a good gawk surpasses your built-in barometer of politeness and well, you get distracted in your staring and get caught in the act? Naturally, most people will either smile as though they weren’t really staring…….. just maybe glancing around intensely OR you will abruptly look away in embarrassment. Or sometimes what happens is that some of us will just keep on staring even when the subject of our stare makes eye-contact.

I suspect by now you know where this is heading. When I used to see people watching Meredith, I just chalked it up to normal human curiosity. She is different in a lot of ways and she is a prime target for curious onlookers. She is also very cute and so I have to assume that people look at her for this reason as well. My father gets very excited when he sees another child that resembles Meredith. We live in a town of 1100 and the only people here using wheelchairs are over 50 except for Meredith. My dad does not want to appear to be staring but it is wonderful for him to see other children with cp. I have to assume that sometimes those who are watching us are doing so because we remind them of someone they know.

We once had a family relief worker (FRW) who was very protective of Meredith and if anyone as much as glanced at her (even with a smile!), she would give them a glare that said loud and clear (with unspoken words), “QUIT GAWKING, A**&%$!!” Once we were sitting in the waiting room at the ER when a woman was staring at us from across the room over the top of the novel she was reading. I mean really staring. I was busy chatting about a movie I had seen the night before. Meredith was arching away and I was moving right along with her doing our “dance” completely oblivious to this woman’s eyeballing. Suddenly, our FRW raises her voice and shouts across the waiting room, “Why don’t you take a picture?” interrupting me mid-sentence. The woman, caught in the act, sunk into her chair and attempted to hide behind her romance paperback with little success. I think I had more empathy for her and wanted to follow-up the FRW’s question with, “It’s okay, I know she is very interesting to look at.”

For the most part, I have accepted that people are going to stare and for the most part, I am okay with it. I recently dealt with three children who stood on their front lawn and never broke their stare from the time they saw us coming up the street until we passed. This happened each time we were out on our morning walk and finally, I looked at them and said, “Quit staring! It’s rude!” I just got fed up with the fact that even though I smiled each time as we passed and said, “Good morning,” they just stood their looking like creepy zombie children, staring us down as though we were from another planet. My husband suggested I walk over and introduce her and maybe explain some things to them. That morning, I wasn’t in the mood.

I think that sometimes these curious looks are an opportunity to engage with and educate others and sometimes I think people are forgetting their manners and need to be reminded. It depends on the situation as well as how much sleep I have had the night before

How do you Moebius moms and dads handle the gawkers?  Don't be afraid to share...


“No man ever listened himself out of a job.”--Calvin Coolidge (1872-1933