THE FRENCH MOEBIUS SYNDROME ASSOCIATION
Our thanks to the Many Faces of Moebius Syndrome for passing this along:
"The French Moebius Syndrome Association (Association Syndrome de Moebius France) was created in 1997 and has grown considerably since its initial launch, although it still remains a fairly small body, with around 100 members. We meet once a year at our AGM, organised on a rota basis by a volunteer family. Spread over 4 days, the AGM not only provides our members and other supporters with information as to the latest projects, news and so on, but is also an invaluable way for families to get together, share experiences with one another, and generally have a good time. Various of our members also meet in December in Paris to take part in the annual “Rare Disorders March” through the streets of the capital. Although the weather is not always on our side, this is another great way of meeting up and at the same time of showing our support for the sufferers of other rare diseases.

As well as providing support to our members, the Association is involved in a number of different projects. A few years ago, we helped create a centralised consultation clinic at the Trousseau Hospital in Paris, where families and individuals with Moebius can consult a variety of medical experts. The benefits are two-way, as these consultations also help the medical field to better understand the syndrome itself. Other projects have included a mailshot of our brochure to all paediatricians in France and some other French-speaking countries, with the aim of increasing awareness of the syndrome. Two years ago we created an interactive DVD aimed at students and staff in primary and secondary schools (ages 6 to 15). The DVD provides information on the syndrome via interviews and short documentary sequences, plus some fun quizzes and Q&A sessions for kids to use. We really hope this will be a key to making it easier for kids with Moebius syndrome to be fully integrated in school and at the same time spread awareness of the syndrome across the education system. Over the years, we’ve also been involved in trying to establish a census of people who have Moebius Syndrome in France To date, we’ve identified around 90 people, although no doubt there are more that we don’t yet know about.

We hope that in the future we’ll be able to increase our cooperation with other Moebius Syndrome groups across the globe, and in particular in Europe. We’d like to think that one day some sort of centralised, coordinated research programme could be set up, however the hurdles are considerable and progress is slow. We are delighted to work closely with Eurordis (The European Organisation for Rare Diseases) and to be able to converse with other Moebius organisations, a task made much easier via a translation service provided by Eurordis.

We would like to thank The Many Faces of Moebius Syndrome for inviting us to write this article, which is a great way of telling others a little bit about who we are and what we do. For more information, you can visit our website at: http://www.moebius-france.com/

“Never underestimate the power of dreams and the influence of the human spirit. We are all the same in this notion. The potential for greatness lives within each of us. ”Wilma Rudolph (1940-1994)

MESSAGE TO TEENS (OR ANYONE ELSE) WITH MOEBIUS: DON'T BE A BULLY
You would think this would be impossible.  After all, isn't it always those with Moebius or other physical differences who are on the receiving end of bullying?  But--check out what this new study shows:
"Special education students are more likely than their typically developing peers to be bullied. But new evidence indicates they’re also often the ones doing the harassing.
A new study looking at over 800 students ages 9 to 16 from nine different schools finds that bullying experiences vary dramatically between special education and general education students.
And even among students with disabilities, the type of special needs a child has can further separate one student’s experience from the next, according to the study published online in the Journal of School Psychology.
Using school data on student involvement in bullying situations, researchers found that kids enrolled in special education were more likely to both perpetrate and be victims of bullying. They were also more likely to be sent to the school office for disciplinary problems than those in general education.
“These results paint a fairly bleak picture for students with disabilities in terms of bullying, victimization and disciplinary actions,” wrote Susan Swearer, a professor of school psychology at the University of Nebraska-Lincoln who led the study.
Among special education students, those with language, hearing or mental impairments exhibited the highest levels of involvement in bullying, the study found, while those with less visible conditions like learning disabilities were part of fewer incidents.
Typically developing students often experienced the most bullying in fifth grade before the behavior started to subside, but those with disabilities didn’t appear to get the same relief. Their level of bullying involvement remained constant throughout the grade levels studied, the researchers said.
The study adds to a growing body of research and anecdotal evidence surrounding the experiences of students with disabilities and bullying. A study released last year looking at children with disabilities and special health care needs found such students experienced more bullying and felt less safe at school than other kids.
And, a survey released earlier this year found that children with autism are bullied three times more than other kids and are also frequent perpetrators of bullying themselves.
Swearer and her colleagues said that schools need to do more to emphasize positive socialization among students. They also said that increased mainstreamiletng of students with visible disabilities in general education classrooms may help prevent bullying."

Just from my own experience, I can imagine this to be true.  I remember when I was in middle school and then high school.  Yes, I certainly was teased and picked on, due to my Moebius.  But sometimes, I teased and picked on other students--indeed, at times gratefully so. 

Why on earth "gratefully" so?  It is certainly not something I'm proud of.  But the fact is that sometimes, I bullied others simply because I was so glad that I was not the one on the receiving end!  I didn't want the focus to be on me; if someone else was the one being picked on, I think I subconsciously wanted to keep it going and add to it--because hey, that kept the focus off of me for that much longer, and I got to feel a tiny bit of that (admittedly disgusting, when you look back on it) sense of "power" and control that bullies get.

Like I said, it's not something I'm proud of.  Don't let yourself fall into that trap.  Don't do what I did.  We've got to be better than that.


“A man who views the world the same at fifty as he did at twenty has wasted thirty years of his life. ”--Muhammad Ali [Cassius Clay] (born 1942)

FOR MOEBIUS MOMS AND DADS:  NEED A KICKSTART?
So maybe you're a parent of a child with Moebius Syndrome.  And your child has special needs; he or she needs a lot of medical attention.  It costs a lot.  The bills pile up.  What to do?  Read about what one woman did--her child has cerebral palsy, but she raised money in a bit of a different way:
"Looking for a way to pay for treatment for her son with cerebral palsy, one Oregon mom decided to write a book and turned to Kickstarter.com to fund it. Even she was surprised by the result.
Former journalist Shasta Kearns Moore wrote “Dark & Light: A love story for babies,” after noticing that her 2-year-old twin boys loved simple books with little text and silhouettes rather than intricate illustrations.
The Portland-area mom hoped that the board book could help fund costly therapies that are helping one of her twins, Malachi Millard, who has cerebral palsy.
Rather than look for a publisher, Kearns Moore started a Kickstarter campaign asking everyday people to pledge money toward publication of the book. She hoped to raise $5,000, but has far surpassed that initial goal.
The campaign, which ends Wednesday, already has over $9,600 pledged from 244 individuals.
“Just having people stand behind us and say, ‘Life dealt you a rough hand, but we’re going to help you make something awesome out of it,’ means more than I can ever express,” Kearns Moore told the Portland Tribune."

To find out more, just go here.


“The dictionary is the only place that success comes before work. Hard work is the price we must pay for success. I think you can accomplish anything if you're willing to pay the price.”--Vincent "Vince" Lombardi (1913-1970)

FIVE COMMON WORK RULES YOU SHOULD BREAK
So many of us with Moebius have jobs; but it can tough out there in the working world.  Even at your workplace, where people should know you, troubles can arise--supervisors or other employees harboring doubts about you, even after you've shown you can do the job (to a few people, the fact that you look different can spawn a prejudice that is hard to make go away); new employees or new supervisors come on the job, don't know you, and so now they doubt you; and so on.  So we need to be proactive, and figure out the best ways to overcome prejudices, raise awareness, and succeed.  One way to do it?  Don't be conventional; some commonly-held assumptions about work just don't hold water.  Check these out:
"Most people think they know the keys to career success: Keep your head down and nose to the grindstone. Avoid personal, emotional, or awkward subjects (in fact, any elephant in the room) at all costs. Well, guess again. Here, experts reveal five on-the-job maxims that are worth challenging.                       

Stay Away From Emotional Topics
In my opinion, you should always bring a problem out into the open, even if it’s personal, difficult, or awkward. Say you and a colleague have different work styles or have clashed over a project, and as a result there is serious tension between the two of you. Tiptoeing around the issue may cause your productivity to suffer, so it’s crucial that you confront your coworker. You can say, “You seem to dispute every point I make, and I don’t understand. Did I do something to upset you?” If you talk about it, the situation won’t spiral out of control or become a pattern.

Sean O'Neil is a management consultant based in Pelham, New York, and a coauthor of Bare Knuckle People Management

Climb the Career Ladder
There’s pressure in our culture to earn more money and to have important titles. But not everyone wants more responsibility and power. And what we don’t hear often enough is that it’s OK not to want a promotion. So move laterally, or choose self-employment if you think that will make you happy. It won’t hold you back; on the contrary, having a nonlinear career path can make you more intriguing to bosses in the future, not less. They’ll view you as having broader experience.

Michelle Goodman is the author of The Anti 9-to-5 Guide ($15, amazon.com) and a career columnist for ABCnews.com.

Do What You Were Hired to Do
Your boss has to look at the bigger picture all the time—she’ll admire you for doing the same. If you pay attention to your organization as a whole, you’ll better appreciate what other people do—and you might come up with macro ways to help the company. It’s a fine line between offering assistance and stepping on someone’s toes. But if you have the best intentions at heart, you can say, “I see an opportunity here that we’re not taking advantage of.”

Adam Bryant is the deputy national editor of the New York Times and the author of The Corner Office ($25, amazon.com).

Live at the Office
For many of us, our careers are not our life’s passions. So it’s essential to pursue outside interests—both for our happiness and to facilitate our creativity at work. Amazing discoveries and insights are often made when people are tinkering in the garage, gardening, or riding a bike. Plus, hobbies help give us a sense of peace. And once we relax for a moment, the answer to a work problem will often reveal itself.

Karen Burns is the author of The Amazing Adventures of Working Girl

Network 24/7
It’s inefficient to walk into a cocktail party or an industry event and start mingling with random people. My suggestion? Throw away every business card tucked away in your wallet and work social-media connections instead. You can get in touch with important people who interest you, whether they’re in your industry or not. Retweet messages of theirs, ask them questions, and strike up online relationships. From there, it can be easy to get them to meet you for lunch or coffee—where you’ll connect in a real, personal way that will ultimately help your career.

Penelope Trunk is an entrepreneur, a blogger, and the author of Brazen Careerist ($26, amazon.com)."


“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do. ”--Eleanor Roosevelt (1884-1962)

HOW TO DE-STRESS
Because literally anybody--yes, persons with Moebius or moms and dads with Moebius children especially, but still, anybody--needs to de-stress now and then.  Here are some good tips on how to do it:
"I made a resolution this year to de-stress by disconnecting. Let's face it, with the advances in technology that are supposed to make our lives easier -- cell phones, smart phones, iPads, email, social networking -- our lives have also become a lot more hectic. Gone are the days where we can leave the house for a few hours and enjoy some peace and quiet. No matter where we are, we can be reached through our phones via calls, texts, Facebook, Twitter, email, LinkedIn... the list goes on and on. Many of us find ourselves working long after we've left the office -- after all, our bosses can reach us any time they want. And when we do make time to get out and enjoy ourselves, we're busy using our phones to check in. It's no wonder we all struggle to find ways to relax.
For one (waking) hour a day, I am now electronics-free. I turn off my phone (oh the horror!), my laptop and my TV. It doesn't much matter what I do during that hour; just knowing that I have that time just for me, that no one can disturb, is relaxing in itself. To recharge, sometimes we have to unplug.
Here are some other techniques that have worked for me:

• Get lost in order to find your center! With gas prices as high as they are, it may not always be practical anymore, but there are few things that relax me more than turning off my actual GPS and driving aimlessly. I feel like an explorer discovering new and exciting lands. (Of course, I always have my GPS with me to help me find my way home!)


• Indulge in a hobby. Thanks to Santa, I am the proud owner of a Canon Rebel camera. I take it with me almost everywhere, including on my getting-lost road trips. Learning how to use the different functions and being able to fully immerse myself in my surroundings, appreciating the beauty around me every day, is incredibly relaxing. It's also empowering when I get great shots! (See below for some of the photos I've taken while getting lost!)



• Try yoga. Okay, to be fair, I haven't yet mastered the art of sitting still, eyes closed, focusing on my breathing. During the sit-still-and-be-quiet parts, I'm usually checking in on foursquare or reading my Twitter updates. (I'm a work in progress.) Still, yoga has a way of thoroughly relaxing the mind and the body and helping me find my center. Not to mention it's a great workout, especially for getting bathing-suit ready!



• Pamper yourself. I am just not that woman who always has her nails done and the perfect hair. In fact, I haven't had polish on my fingernails in over a decade. It's simply too much maintenance. There is nothing wrong with treating ourselves every now and then, though. Make time for whatever it is that makes you feel good: the gym, a hot bubble bath with a glass of wine and a good book, taking a walk or doing your nails. I do make time once a week to give myself a pedicure and I always feel pretty afterwards!"

"No man ever achieved worth-while success who did not, at one time or other, find himself with at least one foot hanging well over the brink of failure." -Napoleon Hill

WHY DO MIDDLE SCHOOL KIDS GET SO MEAN?
Have you seen the video of what they did to the bus monitor?  Hey, Moebius moms and dads...has your child with Moebius been taunted by middle school kids?  Chances are he or she has...or will be in the future.  I remember that some of the nastiest stuff ever said or done to me, when I was a teen, was said/done to me when I was in middle school.  So why is this?  Why do some middle schoolers become such bullies?  One explanation:
"...When kids reach middle school, bullying becomes more common and more sophisticated, experts say.
“Middle school-age kids are sort of an age group that is notorious for an uptick in the intensity of bullying,” said Dr. Gail Saltz, a psychiatrist in New York and TODAY contributor.
During the middle school years, kids are facing intense peer pressure, the pack mentality is strong and kids feel a growing sense of independence - all while their moral compasses are still developing, she said.
“It’s a time when they’re figuring out who they are by sometimes crossing the line and breaking the rules,” Saltz says. “Their insecurity drives a lot of cliquishness and defining themselves as better by making someone else feel worse.”
Middle school is often the beginning of the “mean age,” and kids don’t always know when to stop themselves. “Their ability to assess going too far is not fully developed, so you do see a lot of potential bad bullying,” Saltz said.
Dr. Robi Ludwig, a psychotherapist and Today contributor, said bad behavior can take place because young adolescents don’t always realize the consequences of their actions.
“Kids can be aggressive and mean at any age or any stage but when kids are younger, they haven’t fully developed perhaps their ability to understand the impact they have on others,” she said. “It’s more of a self-centered existence. It’s a hallmark of adolescence, an over-focus on the self.”
Peer life is essential to kids’ development, Ludwig said. “If kids feel they’re not being successful among their peers, there’s a sense of sadness and isolation, so they could act out or be victimized,” she said.
For some kids, showing power and control makes them feel better, Ludwig says.
“Sometimes when acting out in anger, it’s to offset depression or anxiety and in other cases it’s kids who have been bullied, so it’s ‘go after the person that’s least likely to retaliate - go after the weakest link,’” Ludwig said.
Kids can also be aggressive and bully others to establish their place of power in their group, Ludwig says. “You’re making a name for yourself,” she said. “You’re sending the message, ‘Don’t mess with me.’”

MOEBIUS SYNDROME IN THE NEWS
And on a happier note--guess who will be one of those carrying the torch bearing the Olympic flame, and the London Games approach this summer?  None other than UK Moebius hero Jack Marshall:
"Inspirational Belton teenager Jack Marshall has also been selected to carry the torch as it wends its way around Doncaster.
Jack has Moebius Syndrome, a rare condition which has left him blind in one eye, hearing loss in both ears and severely disabled with problems in his hips, knees and feet and has undergone numerous operations on his legs, eyes, ears and mouth. However, he has raised £20,000 for charity on a number of sponsored runs and amazed doctors with his determination."


“So what will define greatness for your generation? I believe it is to use the knowledge that you have earned here to find ways, not only to connect to computers, but to connect to people; not only to bridge gaps in science, but to bridge gaps between cultures; not only to use numbers and formulas to create, but to use words to lead, and in the process, to close that canyon between ignorance and understanding.”--Carly Fiorina (born 1954)

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

HEALTH NEWS: THE 7 WAYS DOGS CAN IMPROVE YOUR HEALTH
Many of my Moebius friends--so many of them cat, dog, and other pet-lovers--won't be surprised at this:
"Dogs may be good at more than fetching sticks and greeting you after a long day at work. As it turns out, simply having them around may lessen your kids' chances of getting the common cold.
Owning a dog may improve the health of children in that household, according to new research from the University of California, San Francisco. In a study of mice, researchers found that the house dust from homes with dogs worked to protect against a common cold strain, the respiratory syncytial virus.
"Mice aren't identical to humans. There are obvious differences," explains Dr. Susan Lynch, co-investigator of the study and a professor at UCSF. "But we can do things in the animals that we could not possibly do in humans, and we can get samples to examine disease that would be very difficult to assess in humans."
Animals fed house dust from dog-owning homes did not exhibit the usual symptoms of RSV, including mucus production and lung inflammation. In fact, their symptoms were comparable to animals that weren't exposed to the virus in the first place.
So what's the big deal about RSV? It's a virus to which almost everybody has been exposed within the first few years of life. However, it can be severe -- and sometimes fatal -- in premature and chronically ill infants. It is the leading cause of bronchiolitis, which is an inflammation of the small airways in the lung, as well as pneumonia in children under 1 year of age in the United States, and it is associated with increased risk of developing asthma.
What excited researchers is that this work may help explain why pet ownership has been associated with protection against childhood asthma in the past. Their thought process is as follows: exposure to animals early in life helps "train" the immune system, which plays an integral part in asthma development. In short, there is reason to believe that germs, such as those associated with dogs, may be good for children's health under certain circumstances.
"Everybody appreciates the fact that we're all missing something big in asthma," says Dr. Robert Mellins, a pediatric pulmonologist at Columbia University in New York. "People have appreciated that viral infections clearly have an association, and this kind of experiment is interesting because it suggests a mechanism of how that could come about."
The study is far from the first to suggest the health benefits of having a canine in the family. The following are six other ways that owning a dog may improve your health and well-being.

Dogs and Cardiovascular Health

Could owning a dog keep your heart healthy? Research has supported a connection between owning a dog and reduced risk of cardiovascular problems, including high blood pressure and elevated cholesterol levels. In addition, a study published in the American Journal of Cardiology found that male dog owners were less likely to die within one year after a heart attack than those who did not own a dog.

Dogs and Anxiety

For people with all forms of anxiety, having a dog may be an important coping mechanism. This is especially true in times of crisis. A study out of the Medical College of Virginia found that for hospitalized patients with mental health issues, therapy with animals significantly reduced anxiety levels more than conventional recreational therapy sessions.

Dogs and Loneliness

Dogs function as important companions and family members, but certain groups may benefit more than others. The elderly, particularly those in residential care facilities, often become socially isolated once separated from immediate family. Researchers in Australia have found that dogs improved the well-being of residents by promoting their capacity to build relationships.

Dogs and Rehabilitation

In the setting of a severe illness or prolonged hospitalization, therapy dogs can be integral in the process of rehabilitation. A review of the literature looking at the function of service dogs proved that dogs can assist people with various disabilities in performing everyday activities, thereby significantly reducing their dependence on others.

Dogs and Activity

Before a dog is introduced into the home, the most commonly asked question is, "Who is going to walk the dog?" Turns out this responsibility may be important for the health of the family as well as the dog. Studies from the American Journal of Public Health and the American Journal of Preventive Medicine have shown that children with dogs spend more time doing moderate to vigorous activity than those without dogs, and adults with dogs walk on average almost twice as much as adults without dogs."

Dogs and Doctors

With all of these specific health benefits, could dogs keep you away from the doctor altogether? A national survey out of Australia found that dog and cat owners made fewer annual doctor visits and generally had significantly lower use of general practitioner services.

And for those with Moebius, I think it also shakes out this way:  your pet doesn't care that your face, or other parts of your body, look "different"; your pet just doesn't care.  As long as you're loyal to your pet, he or she will be loyal to you.  We can't always say that about our fellow humans...

“The time to repair the roof is when the sun is shining.”--John F. Kennedy (1917-1963

HOW TO DEAL WITH LONELINESS
Hey, let's face it--sometimes persons with Moebius Syndrome are lonely.  We look different.  It can be hard for us to make friends.  We can tend to be shy.  All that can add up, then, to loneliness.  So what can we do about it?  One thing to remember is that many people deal with being lonely--you are not alone.  Young people, older people, persons whom society would regard as beautiful, gorgeous, with their whole lives in front of them--they can be lonely too.  You can suffer from loneliness even if daily you are surrounded by people.  The key, though, as this article explains, is to know yourself:

"After someone read my article on forgiveness, they sent me over a link about this beautiful, amazing young genius Marina Keegan, and told me that they thought I would appreciate the article and her poetic writing. I was at work when I opened the link, not really having any idea what it was, and my heart broke to read of the tragedy of this 22-year-old soon-to-be-writer for The New Yorker and the terrible accident on Route 6 that ended her life after her boyfriend lost control of the car. The last thing I want to do is use Marina's name in vain because I was not lucky enough to have known her, but I was so inspired by her writing and her outlook on life that I cannot help but share this. In one of her last pieces that she wrote for the Yale Daily News, Marina wrote about the "opposite of loneliness."
She said:

We don't have a word for the opposite of loneliness, but if we did, I could say that's what I want in life. What I'm grateful and thankful to have found at Yale, and what I'm scared of losing when we wake up tomorrow and leave this place... Yale is full of tiny circles we pull around ourselves. A cappella groups, sports teams, houses, societies, clubs. These tiny groups that make us feel loved and safe and part of something even on our loneliest nights when we stumble home to our computers -- partnerless, tired, awake. We won't have those next year. We won't live on the same block as all our friends. We won't have a bunch of group-texts. This scares me. More than finding the right job or city or spouse -- I'm scared of losing this web we're in. This elusive, indefinable, opposite of loneliness. This feeling I feel right now.

This brought me back to my years at college, when I would sit at the dining hall for hours, meeting friend after friend, not even thinking about my paper that was due the next day. There was always something to do, always someone to see, and all of my friends were no farther than a hop, skip and a jump across campus. Marina's fear of losing this feeling of solace is so real, so tangible, and repeats itself in our lives time and time again. Every graduation, every time you change jobs, break up with someone, or walk away from someone in your life, you are making decisions to step toward a new beginning, a new path that isn't easy, toward the unknown, which may just bring that roller-coaster-drop, pit-in-your-stomach feeling of loneliness.
College for me was a safe place, a place with two bars to go out to at night, a place where I always knew where my friends were and I knew that I could write my paper 20 minutes before class. Now, almost 10 years after my freshman year, I know this is not enough, that even if I am surrounded by people I love and there's a social web around me, loneliness can still exist. I recently had this epiphany after I was lucky enough to go out to dinner with my wonderful friend Rachel Goldstein, the life-changing, inspiring Mastin Kipp and his effervescent, infectious girlfriend Jenna Hall, who shared their knowledge about life and love with me. Mastin, founder of The Daily Love, said -- this is paraphrased -- that when we are successful, we party; when we are in pain, we ponder. Essentially, I realized that this pit-in-your-stomach feeling can be taken as loneliness only if it is seen as such. If you see it as an opportunity for something bigger and better and room to fill yourself with what makes you stronger and wiser, you will not feel lonely or scared to walk away from what's easy. Sometimes the easy way out is the most dangerous thing you could do.
Marina, at her young and so wise age of 22, ended the article with an anecdote about a time she mistakenly ended up in the farthest end of campus in Yale's administrative building one late, snowy night her freshman year. She sat there alone thinking about all of the previous people that had been there before her and she wrote, "And alone, at night, in the middle of a New Haven storm, I felt so remarkably, unbelievably safe." She did not recognize it, but this feeling of belonging in her was not because of Yale, it was in her all along. She was such a special person that she seemed to introspectively understand what it felt like to feel a part of something bigger than herself even during her first year at college sitting completely alone taking it all in.

Loneliness is a choice. You can be surrounded by a web of people and if you are using those people to complete yourself, you will still feel lonely. You have the choice to alter that terrifying feeling inside of you and turn it into an opportunity -- an opportunity to discover who you are, who you want to be and the choices you can make to become the best version of yourself. Don't be afraid to take risks and take chances on yourself. Now, looking back, I realize that there was a time for easy, there was a time for playing pretend, but now is my time to not be afraid of that pit-in-my-stomach feeling, to move towards a future filled with potential and the unknown. You don't get a second chance and the only way to, as Marina said, "make something happen in this world" is to break free from the web, and to not be afraid of the drop because you never know what or who will be waiting for you at the end of the ride."


“There is not enough darkness in all the world to put out the light of even one small candle.”--Robert Alden

SOME INSPIRATIONAL QUOTES
Because sometimes, everyone needs a little inspiration now and then...

“Most people are like you and me, or the people across the street or around the world from you and me. Just like you and me, their hearts tell them that somewhere, somehow, they can make a positive difference in the world. ”--William Baker

"A man, who realizes the potential of his mind by means of introspection and contemplation, he does not lack self-confidence. He has control over his mind and he is able to realize it’s full potential. -Sam Veda

“So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. ”--Christopher Reeve (1952-2004)

"If we don't change, we don't grow. If we don't grow, we aren't really living." -Anatole France

AUTISM AND SOCIAL TRAINING
Autism is sometimes associated with Moebius Syndrome (though not always).  But the good news is that if your child has both Moebius and autism, intervention--be it early, or even if it comes later, in his or her teens--can help:
"It’s well established that early intervention can reap big rewards for kids with autism, but new research indicates that teens with the disorder are also capable of learning social skills and retaining them long-term.

The findings come from a study published this month in which researchers tracked teens with high-functioning autism who participated in a 14-week social skills program. In a series of 90-minute weekly sessions the students were taught to interact in real-world social situations through role playing and homework assignments like inviting a friend over.

Meanwhile, the teens’ parents also attended sessions to learn how to appropriately coach their kids at home.

Researchers at the University of California, Los Angeles who conducted the program known as PEERS, saw immediate results with the teens’ teachers and parents reporting that that the students exhibited better social functioning and had more get-togethers with friends.

Now, however, the researchers say they have evidence that positive benefits of the program are still present even after the sessions end.

When a follow-up assessment was conducted 14 weeks after the program was over, parents and teachers indicated the participants were having fewer behavior problems. What’s more, researchers report in the June issue of the Journal of Autism and Developmental Disorders that the teens continued to use their new social skills and in some cases showed further improvement.

“This is exciting news,” said Elizabeth Laugeson, an assistant clinical professor of psychiatry at UCLA who led the study. “It shows that teens with autism can learn social skills and that the tools stick even after the program is over, improving their quality of life and helping them to develop meaningful relationships and to feel more comfortable within their social world.”

Moebius moms and dads, take note!

“Each person has an ideal, a hope, a dream which represents the soul. We must give to it the warmth of love, the light of understanding and the essence of encouragement. ”--Colby Dorr Dam

“Getting ahead in a difficult profession requires avid faith in yourself. That is why some people with mediocre talent, but with great inner drive, go much further than people with vastly superior talent. ”--Sophia Loren (born 1934

"WONDER", BY R.J. PALACIO
I have finished reading the book "Wonder"--many of you have probably heard of it by now.  Here's an excellent review of it:
"Don't miss this one.

Halloween is Auggie's favorite holiday, because he can wear a mask. August Pullman, or Auggie to his family and friends, is an ordinary kid in most ways. He was born with facial deformities, and despite countless surgeries, he still looks different on the outside. On the inside, where few people are allowed, he is funny and smart and so so brave. Auggie embarks on a journey much more scary than any surgery - the 5th grade.

You will be hard-pressed to find any character as courageous as Auggie in children's literature this year. RJ Palacio gifts her readers with a fast-paced, heart-wrenching, honest look at a great family who was dealt a great challenge.

Told from different points of view, the reader not only gets to see inside Auggie's mind, but that of his sister, his friends, and even someone who sees his situation from afar. The role of the sister really got to me (those of you who know me understand why this is so) and I applaud RJ Palacio for giving her such an honest voice.

One of the most powerful parts of the book was not how loudly the other kids made fun of Auggie, it was how QUIET they were. It sucks to be called names, but it's even worse to be ignored. The kids at school had a secret game called The Plague, which was compared to the Cheese Touch. No one could touch Auggie without getting The Plague. The thing is, all the kids thought he didn't know...how could he not? This is bullying that no one sees coming. It's hard to identify, and even harder to stop, but it hurts the worst.

WONDER has stuck with me since I read it, and there are so many scenes I could point to and gush all over, but I don't want to give anything away. (The Precepts!!!) Do yourself a favor - read the book, give it to a middle grader to read, and then talk about it."

***************************

Absolutely.  I would only add:  that if you are a young person, or even an adult, who has Moebius, I bet you may have had some of the same thoughts that Auggie had in this book.  Maybe you've been afraid to acknowledge them.  This book reminds you:  you're not alone.  If you're a parent of a person with Moebius, or a sibling or a friend, again--some of what the characters in this book say, will be things you too may have thought.

So yes, read this book.  Think about it.  Discuss it.  It's worth your while.


“When heaven is about to confer a great responsibility on any man, it will exercise his mind with suffering, subject his sinews and bones to hard work, expose his body to hunger, put him to poverty, place obstacles in the paths of his deeds, so as to stimulate his mind, harden his nature, and improve wherever he is incompetent. ”--Meng Tzu (372 -289 BCE)

"When we are motivated by goals that have deep meaning, by dreams that need completion, by pure love that needs expressing, then we truly live life." -Greg Anderson

WHAT TO DO ABOUT BULLYING?
Here's a lady who has dealt with it, and has some excellent ideas.  This is a must-read for any parent--and especially for a parent of a Moebius child, and/or someone who has Moebius.  Read on:
"I was the one who never spoke up in class. I was the girl who clung to the edges of the hallways in high school, never making eye contact. I was the one afraid to say hi to the boy I liked. I was terrified of hearing my own voice. So how is it that I now stand in front of hundreds of students on an ongoing basis, advising them on how to face their own fears and combat bullying?
"SPEAK UP," I say. "Do not remain a silent bystander."
Because, truth is, that's the only way to put an end to bullying.
We know the numbers by now. An estimated thirteen million children are bullied each day. More than 160,000 skip school because of bullying. Every seven minutes, a child is bullied.[1] And the statistics go on and on.
But we have yet to focus on the most important number.
ONE.
In all the speeches I give in schools about bullying, that is the number I focus on. One.
It takes just one person to stand up to a bully, and within a few minutes, the bullying will end. It takes just one person to make someone feel needed, to make a teen feel like he is not utterly alone -- so alone that he wants to take his own life. It takes just one person to talk to a trusted adult in order to intercept a bullying situation, an intended school shooting, a suicide.
When I end each speech, I encourage my audience to do one thing when they leave. I tell them to do one kind thing each day. "Go out of your way," I instruct them, "to make someone feel good about themselves." It doesn't have to be a huge thing. Something small and effortless. A simple compliment. An acknowledgement of a task well done. A smile. I tell them to think about what would cheer them up on their darkest of days and to extend that to someone else.
It seems so incredibly simple and I-can't-believe-I-didn't-think-of-that easy. Something that you would assume people do anyway, without having to be told. But look around. Most of us have our eyes glued to our phones, endlessly checking emails, texts, tweets, Facebook updates. We are losing the social interaction that is so vital to encouraging a climate of compassion. According to some estimates, almost 300 billion emails are sent across the Internet each day, with people checking email up to several times an hour. So much time spent communicating at a distance, yet ignoring those immediately around us.
After one of my speeches at a high school, a teenager told me that she had recently gone out of her way to compliment a boy -- a loner -- about his artwork. She liked it and wanted to let him know. He informed her that she was the first person who had spoken to him at school in three years. What he said next shocked her even more. He had been planning on taking his own life because he didn't have any friends, didn't have anyone to talk to, didn't have anyone who cared about him. She told him that he had her now. He had that one friend that he could live for. One. That's all it takes.
So now, after so many years out of school, so many incidents in my life that have made me stronger -- giving birth to a premature child in my 20s, enduring open-heart surgery in my early 30s and most recently, working with incredibly talented authors to put out a powerful book on bullying -- I still feel that twinge of fear when I stand in front of a crowd. I'm actually quite terrified. Yet I push past that fear with every radio interview, every assembly I stand before, every panel I sit on, every person I meet. I push past the fear because I know that somewhere in the crowd, there is at least one girl who is nearly paralyzed with fear -- just as I once was -- who may be in the position one day to save a life (possibly her own) if she moves beyond the fears that hold her back. If she can let go and be brave, then we will be one step closer to putting an end to bullying. One by one by one, we will stop the bullies and we will save lives."

Have you ever heard someone say "Don't just stand there; do something!"?  That kind of statement seems almost a meaningless cliche.  But here I think such a statement is applicable.  That's what the author is getting at; don't just stand there, take action against bullying.  Do something.

And if we do, everyone will be better off.  Let's keep shining the spotlight on bullying...

"It doesn't matter if you try and try and try again, and fail. It does matter if you try and fail, and fail to try again."-Kettering

"You were born an original. Don't die a copy." -John Mason

DONE WRONG
This is a story about a young man named Michael Green.  He has no hands, due to a fire at his home when he was only 15 months old.  That was years ago; and although there is now very little that he cannot do, if what he is saying is true an amusement park is doing him wrong.  Read on:
"A North Texas man said Six Flags Over Texas staff told him he couldn't ride the park's roller coasters because he does not have hands.

Michael Green said he waited in line for an hour Friday only to be told he could not ride the Texas Giant.

"I'm very furious, sir," he said. "This is the first time this has ever happened to me."

Green, who lost his hands when his home caught fire when he was 15 months old, said he has learned to live without them.

"[I can do] everything except tie my shoes. I can cook. I can drive. I can clean. I can go to school. I can write with my hand. I can type on the computer about 35, 40 words per minute," he said.

After park staff at the Texas Giant would not allow him on the roller coaster, Green went to guest relations, where he was told that he couldn't ride anything.

"I always get stared at a lot, but I never get discriminated -- people telling me that I can't do something when they don't even know what I can do," he said.

Green said he tried to explain to park employees that he had been to Six Flags Over Texas dozens of times as a child and rode everything. He also said he told staff that he even climbs walls and zip-lines at camp.

"I just tried to make my case and explain what the situation was, and they wouldn't have it at all," he said.

A Six Flags Over Texas spokesperson declined speak with NBC 5 on camera. Instead, the representative said in a statement:

"Our disability policies include ride manufacturers' guidelines and the requirements of the federal American Disabilities Act. Our policies are customized by ride and developed for the safety and well-being of our guests. Our policies and procedures are reviewed and adjusted from time to time to ensure we continue to accommodate the needs of our guests while simultaneously maintaining a safe environment. "

Green said all he wants is to ride.

"I thought I was normal, and then I get treated like I am not, like I'm an outsider again -- and that's the worst feeling in the world, to feel like an outsider," he said.

An attorney for a Texas disability rights group said safety can be a reason not to allow someone to participate but that each case must be judged separately.

"State law and federal law require that an individual assessment be done," said Susan Motley, supervising attorney for Disability Rights Texas.

Motley questioned whether hands are necessary to ride a roller coaster.

"There are plenty of kids who wave their arms in the air and they never hold on, so why it's more of a risk for him to ride it with no hands than children who hold their hands up -- even though that's discouraged -- I don't understand that justification," she said."

I don't understand it, either.
Once again we see the need to continue to build awareness in this society.  Because remember, there are some of us in the Moebius community who do not have full use of our hands.  So this kind of discrimination could happen to you, or to your child.

"Progress has little to do with speed, but much to do with direction." -unknown

"Four short words sum up what has lifted most successful individuals above the crowd: a little bit more. They did all that was expected of them and a little bit more."-A. Lou Vickery

THE AWARENESS FRONT
So good news on that front today:
"A series of billboards with some major star-power behind them are popping up across the country in an effort to promote acceptance of people with intellectual disabilities.

The advertisements feature celebrities including actor Rob Lowe, former model Cindy Crawford and Food Network star Guy Fieri. Each is shown paired alongside a friend with special needs who they’ve connected with through Best Buddies, a national nonprofit that promotes one-on-one friendships between those with and without disabilities.

Billboards are currently up in the New York City area, New England and in California. Additional displays are also planned in Florida and Washington, D.C., according to Best Buddies.

Officials with the group say they are hopeful that the advertisements will encourage others to befriend those with disabilities and increase employment opportunities for this population."


“Morale is a state of mind. It is steadfastness and courage and hope. It is confidence and zeal and loyalty. It is elan, ésprit de corps, and determination.”--George C. Marshall (1880-1959)

"The only thing that separates successful people from the nes who aren't is the willingness to work very, very hard."-Helen Gurley Brown

"WONDER"
So I am one of those on the growing list of folks who are reading the book "Wonder", by R.J. Palacio.  It's a book about a 10 year old boy with a very significant facial difference, and how he deals with his peers, adults, society...  Obviously we can all see how this book would be of interest to the Moebius community, and I know of number of people are reading it.  I'm not done with it yet; I'm only about 1/3 of the way through the book.  But here are some early impressions:

1] I do think everyone should read it.  Ms. Palacio does not have a facial difference of her own; but obviously she knows of what she's writing.  Judging by the book's insights and perceptiveness, you'd swear this actually was the voice of a 10 year old with a facial difference.

2] A truth:  August (the boy in the story with the physical difference) often doesn't like to look others in the face; he's so conscious of how different he is.  I think many of us in the Moebius community have that problem, too.

3] Another truth:  August at another point in the story says something like:  the main reason that I know I'm different, that I know I'm not an ordinary kid, is because other people don't consider me to be ordinary.  And that's reall it, isn't it?  What's really crucial in defining what's "normal"?  In the end, it comes down to what most people see as being normal. 

4] So many other kids talk about August behind his back; waiting until he passes them in the hall, whispering about him while trying to hide their mouths behind their hands...  They all think August doesn't see this; but he does.  As do we with Moebius notice it, when people talk about us or look at us funny.

I'll post more about this as I read it; in the meantime, if youi're a parent whose child has Moebius???  You especially will want to read this book.  It'll give you great insight into what you child goes through, or will go through.


“Mistakes are the portals of discovery.”--James  Joyce (1882-1941)

"Let your hopes, not your hurts, shape your future." -Robert Schuller

WHAT A FEW PEOPLE OUT THERE THINK OF US
I guess you could say that the following link might be a bit hard to take; it might even make you somewhat angry.  But still, it's important for us to have all the information that we can; it's important for us to know what some folks think when they see or think about someone with Moebius Syndrome.  And at times it's not something good.  For example, if you go here, to an online magazine put out by an outfit called United Academicis.org, you see this:
"The world is full of of embarrassing conditions you wouldn’t wish on your worst enemy. Every week, Carian discusses one. This week: Moebius Syndrome."

Now, the short article that follows is pretty much fair and accurate, and is certainly not mean or vicious.  But is that really what some people think when they see us?  That our condition is "embarrassing" and something "you wouldn't wish on your worst enemy"?  If so, that's pretty sad.  I don't go out every day feeling embarrassed.  I hope you don't either.  There is prejudice out there.  We have to know that.  But we can't let it stop us.

AND ON THE OTHER HAND...THERE'S GOOD NEWS
Because others out there are much more understanding and accepting.  Another site, humintell.com, tells the story of Moebius hero Matilyn Branch, whom you've all probably heard of by now.  Note especially what Matilyn's first grade teacher had to say:
"Facial expressions are fundamental pieces of communication that we encounter and process, often times, unconsciously everyday.
Many people take them for granted and don’t realize how much facial expressions help us to analyze the situations and people around us.  What if you were unable to express your emotions through your facial expressions? Life would be very different.
Matilyn Branch is a 6-year-old who can’t smile reports Lubbock Online Journal. She and her family have learned to adjust to the very different kind of communication that comes without facial expressions. Matilyn has Moebius Syndrome, a neurological disorder, which afflicts the muscles of the face often times making even blinking difficult.
Moebius Syndrome is a paralysis or extreme weakness of facial muscles. This means that Matilyn cannot smile or even move her eyes from side to side. Her first grade teacher says that does not stop her from excelling in school.
“This school year I have learned as much from Matilyn as she has learned from me,” said Braquet. “Matilyn is a very sweet girl and an amazing student.”
Her parents also comment,
“We want people to know that if they see us in public, or anyone else who is different, to not be scared,” said Harvey. “Be respectful and … come and talk to us.”

Gee...somehow that teacher didn't find Matilyn to be "embarrassing."
We just need to keep raising awareness; there remains a job to do there.  But we make progress every day, as this story shows.


“I think you should take your job seriously, but not yourself- that is the best combination. ”--Dame Judy Dench (born 1934)

"We are all faced with a series of great opportunities brilliantly disguised as unsolvable problems." -John W. Gardner

HEALTH NEWS
Once again, we see today that when it comes to exercising, the watchword is:  moderation...in all things, moderation:
"For people who exercise but fret that they really should be working out more, new studies may be soothing. The amount of exercise needed to improve health and longevity, this new science shows, is modest, and more is not necessarily better.
That is the message of the newest and perhaps most compelling of the studies, which was presented on Saturday at the annual meeting of the American College of Sports Medicine in San Francisco. For it, researchers at the University of South Carolina Arnold School of Public Health and other institutions combed through the health records of 52,656 American adults who’d undergone physicals between 1971 and 2002 as part of the Aerobics Center Longitudinal Study at the Cooper Institute in Dallas. Each participant completed physical testing and activity questionnaires and returned for at least one follow-up visit.
The researchers found that about 27 percent of the participants reported regularly running, although in wildly varying amounts and paces.
The scientists then checked death reports.
Over the course of the study, 2,984 of the participants died. But the incidence was much lower among the group that ran. Those participants had, on average, a 19 percent lower risk of dying from any cause than non-runners.
Notably, in closely parsing the participants’ self-reported activities, the researchers found that running in moderation provided the most benefits. Those who ran 1 to 20 miles per week at an average pace of about 10 or 11 minutes per mile — in other words, jogging — reduced their risk of dying during the study more effectively than those who didn’t run, those (admittedly few) who ran more than 20 miles a week, and those who typically ran at a pace swifter than seven miles an hour."

"PUSH GIRLS"--A REVIEW
So last night I watched an episode of the new reality show "Push Girls"; I'd DVR'd it a night or two earlier.  The show is about 4 young, attractive women who share one big thing in common--they are all confined to wheelchairs.  They are disabled.  One of the women was felled by a very rare disease that struck her when she was a girl.  The other 3 were in very bad car accidents.  One of them is a quadriplegic; she has limited use of her hands and arms, and must live with an in-home caregiver.  The other three are paraplegics; they are paralyzed from the waist down, but have good use of their hands and arms.

So.  What do we have here?  On the whole, I'd urge Moebius adults and parents of children with Moebius to watch this show.  It's interesting.  And you can learn something.  There are some things to keep in mind, of course:  1] The show can be found on the Sundance cable channel.  I don't know how widely available it is; you'll want to check to see if you have it.  The show does however have a website and soon episodes may be available to watch there, too.  2] There's some profanity and some, er, adult themes on the show.  The show isn't for children.  Still, for you adults out there I wouldn't let that distract you from watching it.  3] And I wouldn't claim that this show is about four average women, either.  These are women who were and are very attractive; there are no facial differences here, folks.  One of them was a model before she was had her accident.  They all live in the Los Angeles area.  They all have very strong personalities (but hey, you have to expect that; that's what TV wants).

But it's a good, interesting show.  And we with Moebius Syndrome do have things in common with these women.  For example, just from watching last night:  1] One of the girls remarked that sometimes dealings with other people can be difficult; "They're just not used to seeing someone in a wheelchair," she said.  And for us, people just aren't used to seeing someone with the facial difference produced by Moebius.  2] Yet these women all had relationships going--with non-wheelchair-bound people.  And several times it was said--the significant others of these girls emphasized that the fact that their partner was in a wheelchair simply didn't matter.  And that can very much be the case for those of us with Moebius, too--those without it can relate to you, can want to be with you; it has happened over and over again.  We've all seen it.  3] But it's true--we have to tell it like it is--there are times when a Push Girl, or someone with Moebius, will have big obstacles to overcome.  For example, one of the young women in the show I watched last night was going to try to get back into modeling.  And yet one of those she talked to stated just how difficult it would be for her; he compared someone in a wheelchair trying to be a model to someone without arms trying to pitch in major league baseball.  And yet, though she knew the odds were against her, she was determined to try.  She wasn't going to let anything stop her.  And that's exactly the attitude we wth Moebius have to have, too.

Anyway.  Each episode lasts 30 minutes.  It's interesting; check the show out.


“Every time you are tempted to react in the same old way, ask if you want to be a prisoner of the past or a pioneer of the future. ”--Deepak K. Chopra (born 1946)


“An invincible determination can accomplish almost anything, and in this lies the great distinction between great men and little men.”--Dr. Thomas Fuller (1608-1661)

EVEN KRISTEN STEWART WAS BULLIED
When she was in high school, as she recounted recently:
"It's not easy being Kristen Stewart.
The "Snow White and the Huntsman" actress, 22, opens up to Vanity Fair about how she was bullied as a teenager for not dressing like her peers. "Look at a picture of me before I was 15. I am a boy. I wore my brother's clothes, dude!" she says in the magazine's July issue. "Not like I cared that much, but I remember being made fun of because I wasn't wearing Juicy jeans. I didn't even think about it. I wore my gym clothes."
Stewart continues: "But it's not like I didn't care that they made fun of me. It really bothered me. I remember this girl in sixth grade looked at me in gym and was like, 'Oh my God! That's disgusting -- you don't shave your legs!'"

Now in considering this, several things come to my mind:
1] For one thing, once again we are reminded:  we're not alone.  It's not just persons with Moebius Syndrome or other obvious physical differences who get bullied.  It can happen to anyone. 
2] At the same time, something tells me that the bullying persons like Ms. Stewart received...well, just doesn't quite rise to the level of the bullying someone with Moebius would get.  It's just not the same thing--it's not the same level of staring, or viciousness.  It's important that we not sort of dumb down the definition of bullying, that we not include every kind of small-time pettiness or nastiness and call it all bullying.
3] Still, it's good that this issue is receiving the attention that it is.

LIFE WITH A PHYSICAL DIFFERENCE COMES TO TV
Meanwhile, have you heard about the newest reality show on TV?  It's about 4 women and their lives in wheelchairs:
"Life with a disability will be front and center on television this summer as a new reality show focuses on four women who just happen to be in wheelchairs.
The show, “Push Girls,” follows a group of Los Angeles-area friends through the trials and tribulations of dating, having kids and establishing their careers.
The show’s stars all have paralysis — either as the result of a car accident or an illness — after starting life able to walk.
In keeping with the traditions of reality TV, they each have strong personalities. Auti Angel, for example, is a dancer, rapper and actress who’s trying for a baby while Angela Rockwood is a model who’s dealing with her recent separation from her husband.
Rather than focus on their disabilities, however, the women say they want people to see how typical their lives really are.
“Plenty of people have no idea what it’s like to spend the day in the life of someone with a disability, let alone a spinal cord injury. How do we get in and out of a car? How do we go to the bathroom? How do we go grocery shopping? How do we get in the shower, how do we get dressed?,” said Tiphany Adams, one of the show’s stars. “I thought it was a brilliant idea for the world to see that.”

The show, by the way, is on the Sundance cable channel; I've recorded a couple of episodes and will be reviewing the show soon.


“Morale is a state of mind. It is steadfastness and courage and hope. It is confidence and zeal and loyalty. It is elan, ésprit de corps, and determination. ”--George C. Marshall (1880-1959)

"If it’s not fun, you are not doing it right." -Fran Tarkenton

SPEAKING OF BULLYING...
There are actually some good things happening.  R.J. Palacio's new book, "Wonder", has led to some perhaps unexpected, but very good, developments that concern raising awareness of bullying.  For example, look at what Random House publishers are doing:
" Those of you who were moved by R.J. Palacio's debut novel, Wonder (Knopf, 2012), will be pleased to know that her publisher has launched a campaign called Choose Kind to encourage kids, educators, and readers of all ages to join the fight against bullying.
Inspired by the book, about a fifth grader named Auggie who has a facial deformity and attends a mainstream school for the first time, the website offers a place where readers can share their experiences—either as victim, bully, or bystander—and pledge to combat the nationwide rise in bullying with every day acts of kindness.
"Celebrating those who have made the choice to be kind—not always an easy thing to do when you're a kid!—is the best way to raise awareness to this very simple fact: kindness is a virtue whose ripple effects can literally change the world," says Palacio (pictured below), whose debut novel is now a New York Times bestseller. "One child at a time, one person at a time, there's no greater antidote to bullying than the steadfast refusal of children, teachers, and parents to accept a culture where bullying is tolerated."
Choose Kind was designed for fans and supporters of the novel who've asked for additional resources to use when sharing the book and its message with families, schools, and communities across the country. Each section of the site offers an interactive user experience, where people can share a post, ranging from personal experiences of being bullied to moments where they wished they had stood up for someone else. Librarians can download lesson plans and a digital toolkit that offers printable stickers and web badges, as well as links to other anti-bullying efforts like the National Bullying Prevention Center, the It Gets Better project, and the National Education Association's Bully Free: It Starts with Me. They can also sign an online pledge to Choose Kind as a way to end bullying and print a certificate to display in the classroom. Also available are a video trailer of Wonder, many reviews, and links to the novel's social media channels. Random House UK, which published the book in March, and publishes Wonder for adult readers on June 6th, 2012, has joined the effort as well.
"Wonder has inspired us, and captured our hearts entirely," says Chip Gibson, president and publisher of Random House Children's Books. "The outpouring of enthusiasm from book lovers and educators moved us to share the poignant message of this novel with a wider audience. I am proud to give them-and anyone around the world-the opportunity to discover the story and to pledge with us to Choose Kind."
SLJ's starred review of Wonder describes it as a well-written, thought-provoking, fast read that would be a great "discussion starter about love, support, and judging people on their appearance." And the book has done just that in the few short months since its February release.
News of the novel spread quickly by word-of-mouth through its Twitter hashtag, #thewonderofwonder and its Facebook page, and the buzz grew as it became the topic of blog posts from parents, teachers, and librarians praising its universal message of empathy and kindness. There's even talk about it being a frontrunner for the 2013 Newbery Medal.
"Put this [book] in every school library everywhere, please! Every library anywhere, really," wrote Nicole Johnston on Betsy Bird's SLJ blog, which ranked Wonder #65 of the top 100 Children's Novels. "What I think it does best is create a magnifying glass that shows us how we react to differences through the frank and honest perspective of various kids' voices."
The Associated Press interviewed Clara Beatty, a nine-year-old girl with Treacher-Collins Syndrome, for a story and she already was reading Wonder. Her parents Janet and Eric said they were impressed with Palacio's ability to realistically portray Auggie's experience, noting "As a family with a child of facial difference, Wonder gives an amazingly accurate view of our world from a number of perspectives. We are hopeful that this story raises awareness of how being kind can be powerful."
Be sure to check out our interview with Palacio, who is one of our guest speakers at SLJ's Day of Dialog on Monday, June 4 at New York City's Jacob Javits Convention Center, where she'll talk about the book and its new campaign as part of our "Stellar Debuts" panel discussion focusing on new and noteworthy arrivals to the publishing scene."

“Our lives are defined by opportunities, even the ones we miss.”--F. Scott Fitzgerald (1896-1940)

THE CONTINUING PROBLEM OF BULLYING
Yet another child kills himself because of it.  We must continue to raise awareness of this problem--note by the way that one of the reasons this boy killed himself was because of a physical difference:
"A 12-year-old boy harassed by school bullies about his intelligence, his height and his deceased father killed himself in the New York City apartment he shared with his mother, according to relatives and those who knew him, NBCNewYork.com reported.

"I want to remember him as a happy kid," his anguished sister told NBC 4 New York on Thursday.

Joel Morales, of East Harlem, moved to a different school after enduring incessant taunting for months, but the bullying persisted, the fifth-grader’s family said.

Kids chased Morales, threw sticks and pipes at him and teased him for his smarts and his 4-foot-9 stature, his family said.

Morales’ anguish reached a breaking point when bullies taunted him about his father, who died when he was four years old, according to relatives.

His mother, Lisbeth Babilonia, found him hanging in their apartment at about 11:30 p.m. Tuesday, hours after she had organized a search party when he didn’t return home on time from an after-school club.

An occupational therapist who worked with Morales at one of the schools because of his diminutive size told NBC 4 New York the boy only reluctantly talked about his problems.

"It was very difficult, especially with a child like Joel who wants so badly to please everyone, to see that he was really in pain, that he was struggling," said Maria Ubiles.

Arlene Gago, a youth minister from a church group, said she spoke with Morales regularly at the Jefferson Houses where he lived but never knew of his distress.

"I always asked him, 'How you doing? How's school?'" she said. "We talked but he'd never tell me what was going on."

A classmate told Morales’ family that the boy had said he was tired of the bullying and told them the details of the remark about his father that sent him over the edge.

School officials declined to comment on the alleged bullying, citing privacy issues.

Police said Morales left no suicide note."

“Be practical as well as generous in your ideals. Keep your eyes on the stars, but remember to keep your feet on the ground. ”--Theodore Roosevelt (1858-1919)

“I have found no greater satisfaction than achieving success through honest dealing and strict adherence to the view that, for you to gain, those you deal with should gain as well. ”--Alan Greenspan (born 1926)