SPOTLIGHT ON BULLYING
All of us with Moebius Syndrome or with other physical differences probably know something about "bullying."  Many of us have been victims of it, at least in small ways; and perhaps in serious ways.  I know many of you parents who have children with Moebius worry about your child being bullied.  And so given that, many of us are glad that there is more talk about bullying out there in our society, and attempts to reduce it.  Right now an anti-bullying law in New Jersey is in the news; one can't really say if it is the perfect solution to the problem, but again, more discussion of the issue of bullying has to be good.  Here's more about the New Jersey law:
"Under a new state law in New Jersey, lunch-line bullies in the East Hanover schools can be reported to the police by their classmates this fall through anonymous tips to the Crimestoppers hot line.
In Elizabeth, children, including kindergartners, will spend six class periods learning, among other things, the difference between telling and tattling.
And at North Hunterdon High School, students will be told that there is no such thing as an innocent bystander when it comes to bullying: if they see it, they have a responsibility to try to stop it.
But while many parents and educators welcome the efforts to curb bullying both on campus and online, some superintendents and school board members across New Jersey say the new law, which takes effect Sept. 1, reaches much too far, and complain that they have been given no additional resources to meet its mandates.
The law, known as the Anti-Bullying Bill of Rights, is considered the toughest legislation against bullying in the nation. Propelled by public outcry over the suicide of a Rutgers University freshman, Tyler Clementi, nearly a year ago, it demands that all public schools adopt comprehensive antibullying policies (there are 18 pages of “required components”), increase staff training and adhere to tight deadlines for reporting episodes.
Each school must designate an antibullying specialist to investigate complaints; each district must, in turn, have an antibullying coordinator; and the State Education Department will evaluate every effort, posting grades on its Web site. Superintendents said that educators who failed to comply could lose their licenses."

OTHER TIDBITS
Once again--get some sleep:
"Men who get the least deep sleep each night have a higher risk of hypertension, new research shows.
Earlier studies have tied chronic sleep disorders and low levels of sleep to greater risks of heart disease and obesity, and even reduced life span. But the new study, published in the journal Hypertension, is one of the first to find that it’s not just how much you sleep, but the the quality of your nightly slumber that can affect your risk for high blood pressure."

"Reputation is what men and women think of us; character is what God and angels know of us."--Thomas Paine

SO HOW COME SOME PEOPLE GET THE FLU...WHILE OTHERS DON'T?
Some scientists have studied it:
" Why do some people end up in bed feverish, hacking and sneezing for days from the flu — when others seem to never get sick? To answer that question, University of Michigan researchers did the first study of its kind: They infected 17 healthy people with the flu virus and discovered that everyone who is exposed to the flu actually is affected by it, but their bodies just have a different way of reacting to it. Half of the study participants got sick; the other half didn’t notice a thing.

“Many people might conclude that if you are exposed to a virus and you don’t get sick, it’s because the virus didn’t stick or it was so weak, it just passed right through your system and your system didn’t notice. That’s not a correct notion,” says Alfred Hero, professor at the University of Michigan College of Engineering and author of the study, which was published Thursday in the journal PLoS Genetics.

He continues, “There is an active immune response which accounts for the resistance of certain people getting sick, and that response is just as active as the response we all know and hate, which is being sick with the sniffles, fever, coughing and sneezing. It’s just that the responses are different.”

Hero, along with scientists from Duke University Medical Center and the Duke Institute for Genome Sciences & Policy, studied participants’ gene expression to watch how the immune system reacted to the flu virus. The analysis reviewed 22,000 genes and 267 blood samples, and used a pattern recognition algorithm and several other methods to discover the genomic signatures associated with the immune response in people who get flu symptoms and those who do not.

They found significant and complex immune responses in the people who got sick and the people who didn’t. Scientists noticed changes in their blood 36 hours before some people actually felt sick. Although they understand that some people’s immune systems resist the virus, they still don’t know how or why that happens.

“There is a behind the scene active immune response even when you don’t get sick,” Hero says. “What we found were differences in their biological metabolism and gene expression. These differences had to do with antioxidants.”

So sometimes your body responds to a virus...but you just don't know it.  And it's hard to explain how it did it.  Reminds me a bit of how our bodies respond to having Moebius Syndrome.  Right?  I can only see out of one eye at a time.  But I use both of them, and somehow my body adapted to using both of them and switching back and forth fast enough to see what I needed to see.  I couldn't explain to you, though, how it happened.  Our lips and mouths don't work like other peoples'...yet we learn how to speak.  Though explaining how we did it would be hard.

The body...it's an amazing thing.

"Be your character what it will, it will be known, and nobody will take it upon your word."--Lord Chesterfield

TODAY'S TIDBITS
A few small items that may interest all of you today...

MORE GOOD NEWS--MAYBE--ABOUT CHOCOLATE
"If only everything that looked good, felt good, or tasted good was good for us too. It comes as more welcome news for chocolate lovers, then, that yet another study has linked chocolate consumption with improved heart health. Maybe.
Researchers at the University of Cambridge analyzed the results of seven existing studies and concluded that high levels of chocolate consumption might be associated with a notable reduction in the risk of developing heart disease. Five of the seven studies reported a beneficial link between higher levels of chocolate consumptions and the risk of cardiovascular events. They found that “the highest levels of chocolate consumption were associated with a 37% reduction in cardiovascular disease and a 29% reduction in stroke, compared with the lowest levels [of consumption].”
The studies, notably, did not differentiate between dark or milk chocolate and included consumption of different types of chocolate (bars, shakes, etc.)"

Read the whole thing; we still need to know more about what this all means...

UNCOMFORTABLE JOB INTERVIEWS
We're not alone:
"Keeping one's cool when an interview chair turns into a hot seat can be difficult. Here are some examples of zingers thrown at candidates, and how some of them responded:
"My friends and I have been asked several times what we would do if we got pregnant. Our answer: 'I can't have children. I'm infertile.' It always sets the interviewer on his (never asked this by a woman) heels. We decided that in the event that we did get the job and did get pregnant, we would cast it as a 'miracle' -- and just be joyous with everyone about the heavenly news!"
-- Rebecca Raibley, Massachusetts
"I am a proud American but have a slight accent. When they ask me where I was born and I tell them, they say, 'Oops, we just remembered we have no openings currently.' So I've concluded that answering their illegal question will never get me a job, but if I refuse to answer it or tell them it's illegal, that will not get me the job either. Quite a conundrum."
-- Mo Abraham, St. Louis
"I was asked, 'Isn't [my past boss] a jerk?' Obviously, I wanted to take the high road, and I wasn't sure why the interviewer asked that question. So I responded, 'He certainly makes an impression,' and changed the subject. Since no further questions were asked along those lines, I think it was a test -- maybe of quick thinking under pressure, maybe to see if I would dish dirt. Either way, never say anything negative about a past employer."
-- Marilyn Santiesteban, Boston
"An interviewer once asked me to which charities I donated. I was uncomfortable with this question, as it seems quite personal. Donations are often based on personal criteria: health experience, politics, religion and other individual ideologies. I don't believe people should be 'qualified' by the groups of their choice."
-- Lisa Hanock-Jasie, New York
"I was asked in an interview once, 'How do you get along with your mother?' I responded, 'If you're trying to find out whether I can work well for a female boss, you can just ask me that. If you were my friend, I wouldn't mind answering. But since this is an interview, I find that question inappropriate.'"
-- Dez Stephens, Nashville, Tennessee
Reacting
Coming up with a response isn't always easy when the voice inside you is screaming, "Why the heck is he asking me that?" While panic, anger and confusion are typical responses to uncomfortable questions, checking emotions is crucial to getting the interview back on track. The interviewer may be trying to judge your confidence level and how you handle pressure."

Read the whole thing--there are ways to handle those interview zingers.
And of course, this brings up the question:  if you are interviewing for a job, and you have Moebius Syndrome, should you bring up the subject and discuss it?  My vote on that is yes.  You know your potential employer will notice it.  You know they will wonder about it.  Moebius is not that hard to explain.  The confidence you will show when meeting the topic head-on will really boost your chances for a job, not hurt them.

NATURAL WAYS TO REDUCE STRESS
"Meditation, or mindfulness, only takes 15 to 30 minutes a day, which is possible even in a packed schedule. It’s also incredibly affordable, considering the only tool you need is your own mind. Just give yourself some silent time to let your thoughts run free or just focus on your breathing. That small amount of peace in your day can help you deal with or even release stress.

Whether it’s yoga, Tai Chi or running, exercise works much in the same way as meditation because it gives you the time to be alone with your thoughts (or an opportunity to let them go). However, exercise also has the added benefit of releasing endorphins into the brain, which improves your mood. It also prevents obesity and other health problems, giving you less to be stressed about.

Organization offers a sense of control and peace of mind, and there’s a number of ways you can improve in this regard. If you’re the kind of person who’s always running around, it can help to make lists so that you remember everything. If you’re the kind of person who feels edgy in their own house, tidy up. Studies have shown the mere sight of clutter can put us on edge."

"You cannot dream yourself into a character; you must hammer and forge yourself one."
Henry David Thoreau

MY LIFE WITH MOEBIUS DEPARTMENT
So the other day I went in the morning to get my hair cut.  I went to my usual place; thought this time I got a hair stylist who had not done my hair before.  Anyway, I'm sure she noticed my Moebius differences right away, but at first didn't say anything about it.  She just chatted about the weather, etc.  Until, that is, it was time to trim my mustache. 

She then asked me to move my lips in a way that would make it easier to trim the old 'stache.  I explained to her that I couldn't.  And she didn't mind; she was very good about it.  In fact, instead, it led me to explain exactly what I couldn't move my lips; to explain Moebius, of course.  And it led her to ask some questions about it and to seriously want to know more about it.  All good, in other words.

What was interesting, though, were some of the questions she asked about.  I think the questions she asked probably reflected what many in society think when they encounter Moebius.  First, when I explained what it was, she asked if I had to take a lot of medicines and drugs to combat it.  Well, no, I answered.  Then, since we'd already discussed the fact that I had a wife and son, she asked me if my son had Moebius.  Nope, I answered; and I explained that Moebius doesn't (necessarily) work that way.  So then she said that all this was very interesting and that she was glad to know about it.  "I have to admit, I've never heard of that before," she said concerning Moebius.

And of course most people haven't.  But it's one thing we can do--raising awareness, one person at a time.  It's what I tried to do as my fall semester of teaching began this week, too; on the first day of class, I devote about 5 to 10 minutes to explaining to my students that I have Moebius Syndrome, what it is, and so forth.  I imagaine most of them have not encountered it before, either.  But now they have.  And that's a good thing.

"Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will."--Jawaharal Nehru

WHY GOING TO AN EXTREME WHEN DIETING ISN'T GOOD FOR YOU
I know a lot of you out there, whether you have Moebius Syndrome/a physical difference or not, are worried about dieting, eating right, etc.  And that's good--it's important to eat healthy.  But pushing it to an extreme can harm you.  Read on:
"We hear it again and again: A proper diet is important for good health and to keep our waistlines in check. But can you imagine becoming all-consumed with eating healthy foods?
Orthorexia, though not an official mental disorder, is what some people call an unhealthy obsession with eating healthy food. While healthful foods are good for our bodies, orthorexics take the concern to an extreme by restricting their diets, which can lead to nutritional deficiencies and create mental stress from trying to be a “perfect” eater.
What’s missing from their diets is moderation, Madelyn Fernstrom, TODAY’s diet and nutrition editor, told TODAY’s Savannah Guthrie.
“The way that it’s different from eating disorders like anorexia and bulimia is that an orthorexic focuses on the quality of food,” she told TODAY. “It’s not the calories. It’s not about weight loss. It’s all about how they feel as a virtuous person, as a perfect person. 'I’m a better person if I restrict.'”
An orthorexic may spend three to four hours a day obsessively reading food labels, worrying about everything that’s in food, cutting out lots of foods, including even healthy ones like produce if they're worried about pesticides or cheese because of the fat, Fernstrom said.
To feel clean and pure, orthorexics may avoid food with artificial coloring or flavoring or added salt and sugar, according to the Mayo Clinic. They may require food to be washed several times and cooked to kill bacteria, the clinic says, and some won’t go to restaurants to avoid meals they haven’t prepared themselves.
In addition to potentially causing physical and mental problems, eating this way can be socially isolating. “It can be horrible for your quality of life,” Fernstrom told TODAY.
Orthorexics may be depressed, have low self esteem or they may be trying to be perfectionists, to get some control over their lives, psychotherapist Robi Ludwig told Guthrie.
“It’s very similar to an obsessive-compulsive disorder only the focus is really food,” she said. “It takes over their life where they’re not living life because they’re overly focused on food.”
While everyone has food quirks and there’s so much attention paid to healthy living these days, obsessing over eating healthy becomes a problem when it’s interfering with your daily life, Fernstrom said.
And if parents are eating this way, they should be mindful if their children are too, she said, because it can hurt their growth and development.
Orthorexia does not appear in the American Psychiatric Association’s Diagnostic and Statistical Manual-IV, and there hasn’t been much study on the subject, says association spokeswoman Dr. Evelyn Attia, director of the Center for Eating Disorders at New York-Presbyterian Hospital.
Orthorexia is a label used by the lay public that has gotten more attention in recent years, Attia told TODAY.com. There are no figures on how many people feel they suffer from orthorexia.
“It’s been used to describe folks who feel very committed to healthy eating and that can mean a range of things from a little bit of change ... to sometimes really rigidly applied rules or practices that may bring the behaviors closer to an eating disorder that we do recognize clinically, that being anorexia nervosa.”

"Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude."
--Thomas Jefferson

SOCIAL NETWORKS AND DATING
I know a lot of our Moebius friends and those with other physical differences out there, who are single, very much want to find a relationship.  And social networks--Facebook, Twitter, etc--can help you.  But be careful:
"The game of courtship has changed for singles who are increasingly plugged into several social networking sites, but are the rules different? With hundreds of millions of users using Facebook, Twitter, Tumblr and now Google Plus each month, how do singles navigate dating and meeting potential dates on social networks?
People who have dated someone they met on Twitter or Facebook say the social networks are good ways to get a more complete picture of the object of their affections, for better or worse.
Panama Jackson, who blogs at Very Smart Brothas and recently co-authored the book Your Degrees Won't Keep You Warm at Night, says you get a lot of insight into a person's life when you see the kinds of things they tweet about and if their tweet totals are closer to 40,000 than, say, 5,000.
He said he's found that some of his dating prospects like to vent about life and tweet things that make him second-guess his initial attraction. Jackson also cautions that flirting online can lead to jealousy, too, which is likely to intensify the crazy early on."

Check out the book and the blog that the article mentions...

INSPIRATIONAL STORY OF THE DAY
Check out the story of Dr. Margaret Stineman, who overcame incredible physical differences to become exactly who she wanted to be:

"Margaret Stineman spent many of her formative years in the slow classes that were then the domain of children who were, as she delicately puts it, "not achieving."
Born with a severely deformed spine and shoulders, she endured 15 operations as a child on her eyes, internal organs and misshapen bones. She spent much of her adolescence in a body cast, making her the object of ridicule. Problems with the muscles that control her eyes severely limited her vision. People around her did not think she was capable of much, and she agreed.
How that child -- functionally illiterate when she left high school -- became an artist and then a doctor and then a respected researcher and then a member of the prestigious Institute of Medicine is a remarkable story of serendipity, determination, motherly devotion and well-timed mentoring.
Then there's the emotional alchemy. A set of circumstances that would have made many people angry, bitter or at least deeply insecure seems instead to have forged a woman who is, at 58, confident, profoundly thoughtful, joyful and serene.
Now a professor of both physical medicine and rehabilitation and epidemiology whose work has focused on measuring and compensating for disability, Stineman does not like talking about her physical problems. But she recently gave a rare speech to colleagues at Penn about how she had made it in academia, and now hopes her story will help fellow health workers see the potential in their patients.

Early expression
Stineman's journey to the upper levels of medical research began with art. Bored in school, unable to see well, and plagued by medical problems, she turned inward and expressed her private world by painting and sculpting. In early adaptations for her handicaps, she used templates and mirrors to compensate for a lack of depth perception. Some of her teachers noticed her talent, and it got her into Temple University's Tyler School of Art.
Soon after art school, Stineman won a prestigious scholarship that would have sent her to Rome to paint for two years. She said members of the selection committee rejected her after she had a physical. "They didn't want to send a crippled person to represent the United States," she said.
"I was hurt. I was upset. I was angry," Stineman said. "This transformed into something that was so beautiful: a recognition that I must be smart or I wouldn't have won this thing. I must be smart. Something must have been missed. That's when I had the wake-up of my life."
For a while, she rejected art -- she saw it as too emotional -- and threw herself into the discipline and rules of science. Stineman's dream, and she knew it was probably an impossible one, was to become a doctor. Engineering was her fallback.
Her inventor father worked as a machinist at Drexel University. She enrolled as a special student there, taking one class at a time. "I decided that I would do absolutely anything to learn," Stineman said. "I was so infatuated with the fact that I could go from barely knowing arithmetic to getting an A in calculus just because I had applied myself."

School struggles
After using her art portfolio to talk about visual perception, she got into Hahnemann Medical College. It was a lot harder to keep up there. Because Stineman learns better through hearing information -- and can process it quickly -- than by reading it, her mother read her textbooks into a special tape recorder that Stineman then played back at high speed.
She brought a different perspective to the care of people with disabilities. "I felt as a child they kept trying to fix me," she said, "but nobody was helping me to learn how to live with the way I was."
Her facility with math and computers led to her biggest claim to fame: She helped design the system Medicare began using in 2002 to decide how much to pay for rehabilitation care for individual patients.
Stineman, whose long brown hair is streaked with gray, focuses on research now. Although lung problems reduce her stamina, she is known as a tireless worker. A computer that speed-reads documents out loud makes it possible for her to handle the work.
She relaxes in a Zen garden her mother created at the house where she lives near the university. She said she had dealt with the pain in her life by creating art, writing music and keeping journals."

Note that she had people who told her, basically, that she couldn't do what she wanted to do.  But she persisted, and proved herself.  So can you.


"They can because they think they can."--Virgil

MORE ADVICE FOR PARENTS OF MOEBIUS CHILDREN
Okay, so let's say you have a Moebius child who as of yet doesn't communicate very well.  Those of us involved with Moebius children know this can sometimes be the case; I was just reading what some of my parent friends on Facebook had to say about this and how it affected their children.  So you may be wondering--can my child go to pre-school?  Can my child go to a regular school?  And how can I help him or her succeed?  Well, there are indeed ways to do it:
"Children with language and hearing disorders face many challenges when they enter the classroom. A lack of understanding could lead to poor academic performance and a sense of social isolation. But clinicians at UT Dallas’ Callier Center for Communication Disorders say parents, teachers and other children may minimize difficulties by following these tips:
1. Talk to such children face-to-face and on their level. This not only helps them realize you are talking to them, but it also helps you better understand what they’re saying.
2. Slow your rate of speech, providing them with more time to process what you’re saying.
3. Simplify your language. Use shorter, simpler but grammatically correct phrases to help with comprehension.
4. Give only one or two directions at a time. This helps improve understanding and encourage participation.
5. Use visual information when possible. Pictures, facial expressions, gestures and simple drawings all aid understanding.
6. Sit such children close to the teacher. This helps them pay attention better and also helps ensure they hear what is said.
7. Give children enough time to respond. After you ask a question or give a direction, wait at least five to 10 seconds because they sometimes need more time to process information.
8. Provide structure and routine as much as possible. This allows children to visualize and anticipate what is expected during the day.
9. Provide some forewarning before transitions. Physically approach a child and tell him or her that you are about to transition to another activity.
10. Give the child a job. Giving a child responsibilities helps with attention and compliance because all children thrive when they feel needed."

And if you have a child with Moebius Syndrome, and you notice that he or she is slow to begin talking, remember this:  I believe I was about 4 years old before I said anything.  When I finally did say something (I guess I said, "where's Karen?"--my sister), my mother was so surprised that she looked back at me and said, "WHAT???"   But eventually I was fortunate enough to move along, get a Ph.D. in history, teach history at the college level...and now in class I probably talk so much I'm sure my students wish I would pipe down. :+)  Sometimes it can take a while.  But breakthroughs can happen.  And once they do, your child can take off.  Have patience.  Keep working at it.

"I would just say treat them like a normal kid," she said. "Their smile's on the inside. Their smile's from the heart."--Vicki McCarrell, on how to treat children with Moebius Syndrome.

SOMETHING FOR MOEBIUS MOMS TO REMEMBER
Here's something for all you moms of Moebius children, or of other children with physical differences, or just moms in general:  remember, you don't have to be "supermom."  In fact, maybe nobody can be supermom:
"Working mothers are less likely to be depressed than stay-at-home moms, a new study suggests.
However, working moms who thought women should be able to do it all are at greater risk for depression at age 40 than those who had more realistic expectations before they had kids.
“Holding a job is likely to improve your overall mental health and well-being, which is ultimately a good thing for yourself and your family,” says Katrina Leupp, the University of Washington sociology graduate student who led the research.
But it’s not a bad idea to “accept that balancing work and family is difficult, rather than feeling guilty or unsuccessful if you can’t devote as much time as you would like to your job or your family,” she says.
Leupp analyzed U.S. Department of Labor data, which included 1,600 married women who were approximately age 40 in 2006. The women had been surveyed in 1987, when they were around 20, about their thoughts regarding working moms.
The women who supported combining motherhood with a career had a greater risk of depression later in life than those who thought women should stay at home to raise kids.
In fact, the young women who were the least likely to support the idea of blending home and work life had the fewest depression symptoms when they were actually working moms at age 40.
It’s not clear why, but women who expect to be a supermom may feel bad when they find it harder than they anticipated. And those who don’t may feel less guilty about making sacrifices such as leaving work early to pick up the kids, says Leupp.
“The current generation of employed young women are more likely to have been raised by employed mothers than were past generations,” says Leupp. “Having an employed mother might make one more aware of the difficulties in balancing work and family, but it also provides you with a role model demonstrating that balancing work and family is possible and rewarding.”
Working moms shouldn’t feel guilty if they have to cut corners or take time for themselves. “Be gentle with yourself,” advises Leupp. “Time away from your kids on Friday might make you a happier and better parent on Saturday.”
In general, studies have shown that employment is beneficial for a woman’s mental health. The survey found that stay-at-home moms were more depressed at age 40 than working women, regardless of their viewpoints before they had kids."

"Life is 10% of what happens to me and 90% of how I react to it."--John Maxwell

INSPIRATIONAL STORY OF THE DAY
This couple builds tricycles for children with disabilities:
"Francesca "Frankie" Robertson will tell anyone who asks that she is the fastest girl on a tricycle.
She is certainly the happiest. As she barrels down the sidewalk after her older brothers, her blue eyes sparkle beneath the rabbit ears on her bright-pink bunny bicycle helmet. The 4-year-old's laughter echoes through the neighborhood. She is truly on a joy ride.
This may be a typical scene for most children, but for Frankie, it is miraculous. Just four years ago -- at birth -- she weighed only 1 pound, 10 ounces. She was so small, her father's wedding ring fit around her forearm.
"She has cerebral palsy," Frankie's mother, Dana Robertson, said. "She's quadriplegic so she didn't have the strength in her legs."
Years of therapy helped Frankie slowly gain function in her arms and legs. Five months ago, she had trouble running and playing with her older brothers. But everything changed once she got her new red tricycle.
"She glides through her movements, and I put all that on the bike," Dana Robertson said. "The bike has given that to her."

The bike was a gift from Connie and Gordon Hankins. The Naperville, Ill., retirees, who have grandchildren of their own, are on a mission. In their basement workshop, they transform tricycles, adding high seat backs with seat belts, custom handlebars and Velcro foot clips so that children with disabilities can ride.
"This is not just a toy," Gordon Hankins said. "It builds strength they need, and then they get that confidence [that] they can do other things."
Connie Hankins is a retired nurse; her husband, a retired telecommunications worker. Together, they now run the Therapy Oriented Tricycle TOT project. Since 1999, they've given away more than 900 free bikes to children nationwide.
Connie Hankins' file cabinet is filled with photos of every one of them. "I never get tired of it," she said of the smiles of children perched behind the handlebars.
Another cabinet is filled with thank you notes. She read some of them out loud.
"Thank you for giving our son Luke mobility," read one. "It brings tears to our eyes to see our daughter ride," read another.
After 50 years of marriage, the Hankinses' teamwork is evident. The pair can build and customize a tricycle in less that 15 minutes.
"We can build a bike without talking to each other," Connie Hankins said.

Each of the custom-built tricycles costs nearly $200, and the Hankinses rely on donations.
"We've exhausted our budget this year. We've extended it already," said Connie Hankins, "but I just can't tell them no."
The Hankinses continue to take requests, but they'll have to wait to fulfill them until donors come through.
The couple has spent thousands of their own dollars delivering the bikes to children across the country and the world. One family had the couple show them how to dismantle and re-assemble the bike before they shipped out to Afghanistan.
Noah Fontenot, 2, was the latest recipient of the couple's generosity. He also has cerebral palsy and requires braces to walk. He is wobbly on his feet, but moves freely strapped into his brand-new red tricycle.
His mother, sister and grandmother screamed, "Go, Noah!" as he took his first ride on a Hankins tricycle.
"He sees other kids riding their bikes, and he wants to get in and play along with them," said his mother, Debrena Clay. "This will be real good for him 'cause he'll fit right in."
Frankie's mother said the tricycle transformed her daughter's life. Speaking through tears, Dana Robertson called Gordon and Connie Hankins "angels" for what they'd given Frankie.
"Once she learns the confidence and believes in herself, she'll take that with her for a lifetime," she said.
When Frankie was asked where she wanted to go on her tricycle, she smiled wide and answered, "Everywhere."

Attention, parents of children with Moebius Syndrome or other physical differences--could your child benefit from a bike like this?  Check it out...

"The most important persuasion tool you have in your entire arsenal is integrity." -Zig Ziglar

FIND THAT ENERGY
Feeling a little tired or down today?  Feeling like you need an energy boost?  No, put down that super-caffeinated energy drink--you can find a little more energy by using some simple, everyday techniques:
"You've always suspected that there's more to the energy equation than getting 40 winks and eating three squares a day--and you're absolutely right. How optimistic, motivated, or engaged you feel--not to mention how many things you're trying to focus on at any given time--can bog you down or boost you up, according to experts. So we've gathered nine science-backed fixes that will send your strength and stamina soaring all day.

Leave Waffling To The Griddle
Chicken or pasta? Seaside or mountain vacation? And of those 20 bathing suits you just tried on, which one should you actually buy? When everyday decisions feel like a chore, take comfort in knowing it's not just you. A University of Minnesota study found that when people were asked to choose from an assortment of things they could buy, they had less stamina and fared worse on math problems than those who were asked simply to look at the options. "Making choices pushes us back and forth, which is energy zapping," says Kathleen Vohs, PhD, lead author of the study.

Be brash. Research from the Max Planck Institute for Human Development in Germany found that gut reactions--even in something as complex as the stock market--often yield the best results. If you're having trouble trusting your instincts, remind yourself that most decisions are reversible. And whenever possible, limit your options (especially if you're shopping for bathing suits).

Orange You Happy?
Warm colors, such as red, yellow, and orange, are more energizing than their cool counterparts. That's because, according to ongoing research at the Eiseman Center for Color Information & Training, they're attention grabbing--which activates our brain circuitry. Your best bet for a dreary day's attire, then? "Orange," says Leatrice Eiseman, executive director of the Pantone Color Institute. "It's a blend of red, which is adrenaline producing in the viewer, and yellow, which reminds us of the sun and feelings of exuberance."

Sneak orange into your wardrobe through colorful accessories such as jewelry, socks, or scarves, and stock your office with orange sticky notes and file folders. Another way? Keep an orange on your desk and then savor it as your afternoon snack.

Take A Technology Time-Out
Write e-mails while reading a report and talking on the phone? We all do it, but technology is among the worst multitasking traps. A British experiment found that when people tried to juggle work and simultaneously keep up with their e-mail, their measured IQs dipped 10 points.

Find a few times during the day to close your e-mail and power off your phone. If work is especially busy, lunch can be your technology break. If even that feels impossible, set a 1-hour distraction-free window for when you first get home. The work may still be there an hour later--but you'll have all the more energy to handle it, stress free."

There's more--read the whole thing.


"Don't live down to expectations. Go out there and do
something remarkable." -Wendy Wasserstein

MOEBIUS SYNDROME IN THE NEWS
Today we read about a mother in Thailand and her love for her child--a child who has Moebius Syndrome and has faced unique challenges.  Yet with experimental new therapies, progress is being made:
"As the mother of a child with a rare congenital neurological disorder, Kornwara Asavalarpnirundon has been on an emotional roller coaster ride. She has been tireless in her efforts to find medical and alternative remedies to address her baby's condition in the hope that her little girl will one day grow up to lead as much of a normal life as possible.

Little Kanchalita, fondly called by her nickname Shan Shan, was born with Moebius Syndrome, which has constrained her physical mobility to a great degree, leaving the two-year-old totally dependent on her parents.
Kornwara still vividly recalls the quandary she first experienced on being told by doctors that her first child was born with medical defects.
"When I was first told that my daughter was born with a neurological condition that primarily debilitates the muscles that control facial expression and eye movement, I was sad and blue and asked myself 'Why me?', 'Why my poor girl?'," she says. "But I had to snap out of my depression by telling myself that it would do no good because my baby is dependent on me, so I could not afford to wallow in self pity when she needed me most. I told myself: why make things worse by panicking and being gloomy? I had to accept the fact that my child was not physically normal at birth.
"After my husband and I got a hold of our emotions, we began to study her medical condition to better understand what we were up against. After much study, we continue to read and search for new developments in the medical field, in the hope that our daughter could further benefit from it one day."
The well-heeled Asavalarpnirundon family, who manage their own real estate business, left no stone unturned in their search to treat the apple of their eye. Regular trips with her daughter to private and government hospitals, when needed for special treatment, have made her realise just how blessed they are to have the finances to offer their offspring the best medical treatment in the world. Due to the complex nature of Moebius Syndrome, Shan Shan required a string of treatments, all of which ended in mixed results.

With a never-say-die attitude Kornwara continued her quest. She finally stumbled on a treatment called Vojta therapy - a highly specialised clinical tool designed to enhance the motor development of a child - after hooking up with Walter Lee's Zy Movement Foundation (ZMF), which was set up earlier this year to address a number of issues relating to facilitating and empowering children with movement disabilities.
After reading accounts of Lee's tumultuous journey across the world to help his youngest son Zy - who was born with one complete left arm, half a right arm and no right leg to walk - the young mother saw a glimpse of hope for little girl.
This made Kornwara all the more interested in getting involved with ZMF, which has played an instrumental role in helping bring this novel therapeutic programme to Thailand for the first time. Thanks to a memorandum of understanding between the Department of Medical Services, Ministry of Public Health, Heidelberg University Hospital and ZMF in 2009, there will be Vojta therapy training for a selected group of medical staff from Aug 15-26 at Sirinthorn National Medical Rehabilitation Centre (SNMRC). The treatment should be available to the public by the middle of 2014.
With Mr Lee's words of encouragement and her fiery determination to help her daughter, the 31-year-old businesswoman began to study Vojta therapy.

Developed as early as the 1960s by a Czech neurologist, Prof Dr Vaclav Vojta, it was originally used as a procedure to help enhance the motor development of children affected by cerebral palsy. Years later, it was Prof Dr Theodor Hellbruegge of the Kindercentrum, University of Munich, who went on to develop the groundbreaking therapy, based on Dr Vojta's s pioneering research in the field.
This therapy is founded on "reflex locomotion", which uses special stimulation zones in a specific positioning of the patient to promote a motor response. Muscles throughout the body are activated in a coordinated pattern and simultaneously the central nervous system is addressed at all its regulatory levels.
The Vojta technique is considered a high-level clinical tool which can be employed for evaluating the development of a child right from birth, making it a reliable diagnostic feature for both prevention as well as cure.
"Since I was already working closely with Mr Lee and ZMF to bring this medical knowledge [Vojta therapy] to Thailand, my husband and I decided to have our daughter try the treatment so we could personally validate it to others when it is becomes available in the country in a couple of years.
"So in May of this year, we flew with Shan Shan to Siegen, Germany for this very purpose. The procedure is straightforward. First, the child is assessed in order for the therapists to design a set of treatment postures to fit her needs. Then we as parents were taught how to administer the exercises, which are mandated to be carried out four times a day by the parent with whom the child spends most time. This practice is proven to help improve the development of the child best.
"In only two months of administering the Vojta therapy at home, we have seen a significant improvement in the strength she has in her neck and back . Shan Shan is now more comfortable staying on her tummy, with her elbow down to support her body. She can even move one arm forward, towards the objects that interest her, without falling down."

Read the whole thing.  And all the best to little Shan-Shan...


"It is never too late to be who you might have been." -George
Eliot

HOW ONE BOY, FACING CHALLENGES, RAISED MONEY
I know a lot of you out there are thinking about fund-raising--raising money in order to attend next year's Moebius Syndrome Foundation conference, or doing so in honor of this coming January's Moebius Syndrome Awareness Day, etc.  And here's a story about a young boy, who is susceptible to epileptic seizures, raising money in a very unique way:
"Evan Moss’ seizures come quietly in the night. When they strike, the 7-year-old’s parents have to give him medicine to make them stop — or risk brain damage. But to do that, they have to know they are happening. Lisa and Rob Moss live in fear of missing one.
The seizures are so silent that even if Rob and Lisa sleep in the next room with a baby monitor to listen, they can’t hear them, so Evan sleeps with them in their bed. “We go through life pretty much not well-rested and with a strong addiction to caffeine,” says Lisa Moss.
But a service dog, specially trained to detect seizures and alert Evan’s parents could help insure that Rob and Lisa don’t miss a seizure, and also make it possible for Evan to sleep in how own bed.  The catch? A dog like that costs about $13,000.
To raise the money for a dog for Evan, who has a genetic disorder and epilepsy, the family discussed the usual options: a 5K run, a dinner with a band, a lemonade stand.
As almost an afterthought, they came up with the idea of self-publishing a short book Evan had written as part of his application for the dog. Initially, they modestly hoped maybe they could sell 150 at $10 apiece. But Evan has now sold 10 times that many copies of the 26-page “My Seizure Dog” and counting. As it turns out, none of the profits from book sales needs to go toward the cost of the dog, because donations alone have topped $26,000 — more than twice what the Alexandria, Va., boy Evan needed for his dog. The additional thousands of dollars, plus proceeds from the book, will make up the difference between what four other children’s families have raised and the cost of their service dogs.
Not a single drop of lemonade ever had to be sold."

There's more--read the whole thing.
Now obviously not everyone can raise money through book-writing.  Young Evan is a remarkable boy.  But this story just goes to show--if you are creative, if you think hard of different ways to gain peoples' attention, they can and will respond.  Evan's story can be an inspiration to all of us.

HEALTH NEWS
More reasons to get out there and exercise--even if you can't manage the 30 minutes a day many recommend:
"Doing just 15 minutes of moderate exercise a day may add three years to your life, a large study in Taiwan has found.
Most people struggle to stick to the standard guideline of 30 minutes a day of exercise, five days a week, and experts hope that by identifying a lower dose, more people will be motivated to get off the couch.
Lead researcher Chi Pang Wen of Taiwan's National Health Research Institutes said dedicating 15 minutes a day to a moderate form of exercise, like brisk walking, would benefit anyone.
"It's for men, women, the young and old, smokers, healthy and unhealthy people. Doctors, when they see any type of patient, this is a one-size-fits-all type of advice," Wen told Reuters in a telephone interview.
Wen and colleagues, who published their findings in medical journal The Lancet on Tuesday, tracked over 416,000 participants for 13 years, analysing their health records and reported levels of physical activity each year.
After taking into account differences in age, weight, sex and a range of health-related indicators, they found that just 15 minutes of moderate exercise a day increased life expectancy by three years compared to those who remained inactive."


"Failure doesn't mean you are a failure, it just means you
haven't succeeded yet." -Robert Schuller

SOME TIPS FOR A MORE EFFECTIVE JOB SEARCH
So again, I know many of you out there with Moebius Syndrome or a facial/physical difference out there are searching for jobs, looking for a better job, etc.  So how can you make your job search as effective as it can be?  Here's one tip I can give you:  during your interview, as long as you are comfortable with it, don't be afraid to tell your potential employer about Moebius Syndrome.  Let's face, you know your interviewer will notice that you are different.  You know they will wonder.  So be up front.  Take the issue off the table.  That way you can assure him or her:  it's a physical difference, and nothing more.  You can do the job.  They will be impressed, I'm convinced, with your candor, your strength, and your honesty.  Now--here are some more tips:
"Over the years, hiring managers have born witness to every hiring, interviewing, résumé, cover letter and negotiation mistake there is.
You know what these blunders are. Yet you (and hundreds of other job seekers) continue to make common job search mistakes.
From those who see your mistakes over and over, here are 16 common job search mistakes to avoid -- and some of them may surprise you.
1. You don't keep your options open
"Candidates tend to think that if they interview for a job they will get an offer, so they do not apply and interview for multiple positions," says Joanie Spain, director of public relations and career services, School of Advertising Art, a graphic design college. "They wait until one plays out completely, putting their job search on hold until knowing for sure they didn't get the offer."
"By having many more irons in the fire, you diversify the risk and disappointment that is inevitable when any single opportunity disappears," adds Roy Cohen, author of "The Wall Street Professional's Survival
"You also present yourself as a more passionate and energetic candidate. You're in the 'zone' -- a point where you're in the flow of information and ideas -- and that makes you more valuable."
2. You turn up your nose at job descriptions
"Entry-level candidates are reluctant to apply for a position unless the job sounds like their 'dream job' or they have all qualifications listed," Spain says.
"Rather than going on an interview to get more information, they base decisions about applying on the job description alone. They fail to see that all interview experience is good experience, or that, until there is an offer on the table, there is no decision to make."
3. You haven't perfected the thank-you note
"Don't be too verbose with a thank-you note after an interview. Sending out a version of "War and Peace" can come across as desperate and needy for a job. However, sending a one or two sentence thank-you note comes across as flippant, not well thought-out and potentially shows indifference regarding the job to the employer," says Mike Barefoot, senior account manager at Red Zone Resources, a recruitment firm.
"We encourage candidates to keep them to four to eight sentences."
4. You don't check your references
"Always give out references that you've pre-screened. We sometimes see candidates give out references that were never checked with and the references feedback isn't always kind," Barefoot says.
"Also, make sure they're predominantly managers. An occasional colleague is okay, but contemporaries and friends really don't carry that much weight in helping you land a position."

Read the whole thing; there are many more tips...

Meanwhile, this past weekend I was in Philadelphia, PA; we had our annual face-to-face meeting for the Moebius Syndrome Foundation Board of Directors, of which I am a member.  We met at the hotel at which the MSF Conference in 2012 will be held.  I can tell you that we all spent a lot of time on conference planning and updates, and things are going well.  Dawn Ang and Emmett Linn, who will be the host family for it, are doing great work.  I think the Sheraton Downtown Philadelphia Hotel, where the conference will be held, will work very nicely for us.  The conference is very much in downtown Philly, not far at all from the airport, and we will be very close to some terrific cultural and historic sites which Philadelphia has to offer.

I can also assure all of you Moebius adults out there that there will be many sessions at the conference this year addressing the needs and concerns that you have, and we're all excited about that.  At the same time, as before, the conference will also continue to address as before all of the other issues out there--medical issues, help and support and information for parents of young Moebius children, and so forth.  There are a lot of people working hard on this to make this a terrific conference, and all that hard work is going to pay off.  Stay tuned!


"The only limits to the possibilities in your life tomorrow
are the buts you use today." -Les Brown

WAYS TO REBOUND AFTER LOSING A JOB
Sometimes, of course, it's not all about the job you currently have.  Sometimes it's about losing a job.  It happens.  But it doesn't have to be a crushing blow:
"Rebuilding your confidence after a job loss can be difficult. It's easy to fall into the trap of feeling sorry for yourself, which can cause you to doubt your ability to land a new position. If that happens, make bouncing back your top priority.
Here are nine ways to regain confidence after a job loss:
1. Develop a routine
Not having control of your job search can have a negative effect on your self-esteem. Instead of wallowing, treat the job search process like a full-time job and be thorough and deliberate in your search.
"Develop a routine each day to regain control," says Jayne Mattson, senior vice president of Keystone Associates, a New England-based career management firm. "There are so many activities of a search that will keep you busy and that you have control over, so use your time wisely."
2. Find a supportive network
Being surrounded by supportive circle can help rebuild your confidence, Mattson says. "The people who believe in you really do want you to find the right fit and they will be your best advocates to others," she says. Anyone from former colleagues or acquaintances to family members can help boost your self-esteem after a layoff.
3. Help others
Instead of feeling sorry for yourself, use your new free time to help others. Establishing new connections and applying your skills to other areas like volunteering or taking on leadership positions in your community can help you to bounce back, Mattson says.
"It will keep your skills sharp, make you feel better, but will also give you something to talk about when meeting others," she says.
4. Use positive affirmation
While getting support from others is key, it's also important that you believe in your own skills. Use each day to verbalize a positive affirmation and remind yourself that you possess valuable skills, Mattson says. "Self-talk becomes an important part of rebuilding self confidence," she says.
5. Take time to do something you love
"Filling part of every day with something you love to do will keep your engines going longer," Mattson says. It can be as simple as reading a book or listening to your favorite song, but make sure it's a part of your day that you can look forward to.
6. Exercise
Exercise is a natural endorphin booster, so you're bound to be in a much better mood post-workout. If paying for a gym membership is prohibitive, keep costs low by jogging outdoors and doing an at-home yoga routine. Since you're no longer tied to your desk for hours each day, use the new flexibility to get back into shape and feel better about yourself.
7. Allow time to heal
Especially in a tough economy -- when job interviews are harder to come by -- it can take time to regain confidence and no one expects you to recover right away.
"Don't beat yourself up," Mattson says. "Recognize that you will have good and bad days." Going through a job loss is never easy, and there's nothing wrong with allowing some time to heal.
8. Meet other job seekers
Knowing that you're not alone can go a long way in helping boost your mood. Seek out networking events in your industry or attend job search lectures to get out and mingle with other job seekers. With less interaction in your day-to-day life, meeting others can play a big part in boosting morale.
9. Be ready for a tough road ahead
Being prepared for the less-than transparent interview process can go a long way in protecting you from further disappointments and plunges in confidence. With high unemployment rates, being out of work has become standard for many professionals and isn't a reflection on your abilities."


"Opportunity often comes in disguised in the form of
misfortune, or temporary defeat." -Napoleon Hill

MOEBIUS SYNDROME IN THE NEWS
This time it's a grandma who's long been volunteering...using horses...to help those with special needs.  Little did she know when she began the journey that her work would help her own grandson--who was born with Moebius Syndrome:
"There's something almost magical about the therapy horses at CLO's Midnight Farm in Baldwin City, the way they soothe, encourage and delight their riders that captivates Leann Williams.
It's the reason she's volunteered more than 400 hours at Midnight Farm since the program was launched in 2009, working as a sidewalker and horse leader in the equestrian program for children and adults with special needs.
Williams can't get enough of the daily miracles: Seeing someone who had never talked before begin to speak once astride a therapy horse. Watching riders who were petrified of the 1,000-pound beasts relax -- and even laugh -- when riding, gaining much-needed self-confidence they will draw upon in the future. Witnessing children and adults who are used to looking up at the world from the confines of a wheelchair enjoy a new view from atop a horse, with everyone looking up at them for a change.
“There is something about people and horses,” Williams says.
Bonnie Bruns, volunteer coordinator for Midnight Farm, might add, “There's something about Leann Williams and people and horses.” Bruns is so amazed by Williams' ability to work with horses and special-needs riders, her dedication and reliability, her willingness to do anything that needs to be done on the farm and her unflappable cheerful nature that Bruns nominated Williams for the 2010 Wallace Galluzzi Outstanding Volunteer Award, given annually by the United Way Roger Hill Volunteer Center.
“How the leader feels about the horses and the riders can really impact how the horse behaves in class and how the lesson goes for the rider,” Bruns explains. “Leann is always positive and caring for the horse and rider, and that transmits to both. It makes the lesson a special time for the riders.”
Bruns was looking for a new adventure when she and her husband, Bob, moved from Overland Park to a farm outside Baldwin City. Volunteering for Midnight Farm seemed like a natural fit for this former high school math teacher with a lifelong love of horses.
Little did she know that her volunteer gig would become so personal. When her grandson, Corbin, was born with Moebius syndrome, a rare neurological disorder that causes some paralysis, Williams knew immediately that he would benefit from equine therapy. As riders sit astride a horse, following its rolling motion as it walks, they build core strength, flexibility, balance, joint mobility and coordination. Even though she's witnessed the benefits of equine therapy time and again, Williams was still thrilled to see Corbin grow stronger as a result of his time spent riding.
It's volunteers like Williams who make such turnaround experiences possible for people with special needs, Bruns says. This fall, Midnight Farm plans to expand its program to serve 70 riders, but to do so it needs more volunteer horse leaders and sidewalkers. “We have 50 active volunteers right now, and, ideally, we would like to have 80 to 100,” Bruns shares."

Have any other of you parents with Moebius children tried this?  Using "horse" therapy?  Might be something to consider; although of course, when it comes to Moebius Syndrome and other physical differences in children, there are no one-size-fits-all therapies or solutions.  But we should always be open to new ideas.  Meanwhile, all the best to Leann Williams and her grandson, Corbin...


"Nothing is predestined: The obstacles of your past can
become the gateways that lead to new beginnings." -Ralph Blum

UNWANTED PARENTING ADVICE
So I know some of you out there are parents of Moebius children or of children with other physical differences.  And sometimes friends, relatives, caregivers you've employed, or--maybe the worst--YOUR OWN parents give you unwanted advice or even directly challenge you on the best way to raise your child.  Sometimes this can hurt.  You feel like you're being attacked, like those close to you don't believe you're doing your best for your child, like the walls are closing in.  Right?  So how do you handle these situations?  Luckily there's a piece out today with some advice for you:
"Getting unwelcome input from people you don't know is annoying. Yet it's somehow even worse to hear it from people who know you well, since their remarks can pack an extra punch.
Lisa of Birmingham, Alabama, learned this the hard way after she asked her in-laws not to let their dogs lick her infant daughter's face. They acted as if the request was "ridiculous," Fry says, adding, "Now, when I visit, they say things to the dogs like 'Don't give kisses to the baby now, Lisa's here.' " And they continue to insist that dogs have sanitary mouths.
Right now, she just ignores their comments. But she admits, "I'm trying to figure out a way in which I can tell them that there are certain things that I believe, and that while they can believe differently, they need to respect what I think and want."
Figuring out what you can ignore and what's nonnegotiable is key. Fortunately for Shannon Rebolledo, the Wichita, Kansas, mom of 3-year-old Raef, her in-laws offer advice only from afar, since they're in South America.
"They wanted me not to breastfeed my son for the first week of his life because I'd had gestational diabetes. They said I'd give it to him, something I knew was medically incorrect," she says. Her response? "I just said, 'Okay.' " Then she went ahead and nursed her baby.

Since they're so often the victims of unwanted advice themselves, you'd expect other moms to think carefully before they speak. But sometimes they can be the worst offenders -- maybe because they have so many of their own experiences to base their opinions on.
When my friend Alice had her daughter five years ago, strangers would occasionally comment on how the tip of infant's tongue often protruded from her mouth. "I didn't think it was a big deal," says Smith, but because other people kept mentioning it, she shared her concerns with her friend.
Rather than reassuring her that Jenny was fine, the friend "went on and on about how her sister had the same problem as a child and had speech problems and eating issues, and ended up needing reconstructive surgery on her mouth!"
Jenny's tongue eventually retreated into her mouth without any intervention at all. It took years for Alice to come to understand why the friend (who has given her less than supportive advice on a few other occasions) had upset her so much.
"I finally realized that she has the best intentions and is only trying to share information that she has found useful," she says. "She just doesn't stop to think that what happened in one case, or what worked for one person, doesn't necessarily apply to me."
Kate Cook, a Palo Alto, California, mother of three, had a similar problem with her friend whose older son suffered from several health problems. "She would just give me so much advice based on what happened to her and her son that it would send me into a tailspin," Cook says. "I've come to see that this is just her deal -- not mine. My kids aren't the same as hers."
Another strategy: Depending on the relationship you have with your friend, be honest.
Tell her you're sharing your worries because you want a sympathetic ear, not necessarily advice, and certainly not criticism. Chances are she'll respect your wishes.

There's a fine line between being super helpful and super annoying, and even the best sitter or daycare provide may not be aware when she's crossing it and butting in.
Parenting contributing editor Denene Millner, an Atlanta mom of two and stepmom of one, remembers the time her nanny was concerned about her daughters' colds and wanted Millner to rub a mentholatum ointment on their chests before bed. "When I didn't, she acted like I was trying to make them suffer," she says.
Millner didn't want to fire her nanny for caring too much, or lose her in anger. So she did what any good manager would: She delegated, asking her husband to talk to their nanny about it instead.
"It preserves the equality in my relationship with our nanny by letting my husband be the boss and deal with the misunderstandings that arise," she says. "It also keeps the relationship between her and me healthy while still letting me blow off steam through a third party."
Of course, if you don't have a person ready to play the bad-cop role in your household, you'll have to address your concerns with your caregiver directly, which can feel uncomfortable to consider but empowering to actually do.
I've done it myself, and it was in just these situations that I found my voice, and perhaps even my identity, as a mom. This is, in fact, the good-news part of handling unwanted parenting advice. Deal with it and you may just see your confidence grow."

And remember this--in the end, YOU are the parent, and you have the final say.


"Better to do something imperfectly than to do nothing
flawlessly." -Robert Schuller

THE HIRING PROCESS
I know many of my Moebius friends out there are thinking of looking for a job, or perhaps might be pursuing new jobs at some point.  So here's some tips on what to do, not before your job interview, but AFTER your job interview:
"The interview may be over, but your chance to make an impression is not. Here are 10 strategies to continue boosting your candidacy.
1. Show that you're still interested
Leave no doubt in the interviewer's mind about where you stand. Ask for the job at meeting's end with a phrase such as, "I would really like to contribute to this company and am hoping you select me."
Also, don't leave the room without a clear idea of what will happen next in the hiring process. Will select applicants be invited back to meet other people? By what date do they hope to fill the position? Such questions demonstrate enthusiasm for the job, and knowing the hirer's timeframe will help keep you from panicking if a week has passed without a phone call.
2. Set the stage for further contact
Nobody wants to be a pest, but could your silence as days pass be misinterpreted as indifference? Avoid the guesswork by finding out before heading home what the employer prefers in terms of checking in. Lizandra Vega, author of "The Image of Success: Make a Great Impression and Land the Job You Want," suggests asking the recruiter about her preferred method of follow-up communication and whether it would be okay to touch base again.
3. Be punctual
If you tell the interviewer you'll send a list of references tomorrow morning, make sure you do it. Keeping your word and answering requests in a timely manner speaks volumes about the type of employee you might be.
4. Know when to sit tight
If an interviewer requests that you follow up by phone in a week, respect her wishes. Calling the next day can be construed as pushy and desperate.
5. Send a prompt thank-you note
A positive, nonintrusive way to stay on an employer's mind is to send a thank-you note. Vega recommends emailing one within 24 hours of the interview, then following up with a handwritten note that arrives one to three business days later.
6. Send each interviewer a personalized, powerful follow-up letter
This piece of communication is another chance for you to shine, so don't waste space with generalities. Ford R. Myers, a career coach and author of "Get the Job You Want, Even When No One's Hiring," recommends including specific references to each person you met and tying your accomplishments directly to the company's stated challenges.
You also can use the letter to introduce achievements that didn't get discussed and to elaborate on interview answers that you felt lacked punch.
7. Address one of the company's needs
Another effective way to follow up is to act more like a consultant than an applicant. "During the interview, you learn a lot about a company's weaknesses and/or areas where the company wants to expand," states Linda Matias, president of CareerStrides.com and author of "201 Knockout Answers to Tough Interview Questions."
"Consider creating a proposal on how you would address one of those areas. Doing so will demonstrate that you have the knowledge and also the enthusiasm to make a significant contribution."
8. Keep thinking and learning about the company
Be prepared for additional interviews or follow-up phone calls by continuing to research the organization and the field. Gain new information about a topic brought up in conversation. Think of additional questions you'd like answered. These actions show the hirer that you didn't stop caring about the company after the interview was over.
9. Leverage outside resources
Networking should never stop. "If you have contacts and connections with anyone who might influence the hiring decision, or who actually knows the interviewer, ask her to put a good word in for you," Myers says.
10. Accept rejection with grace
Finally, keep emotions in check and don't burn bridges if someone else gets hired. One never knows what the future might hold. The accepted candidate may not work out, or a different position may open up.
"If you are rejected, the first thing you should do (ironically) is send a thank-you note," Myers says. "This will help distinguish you from other rejected candidates and put you in a positive light."


"You must pay the price if you wish to secure the blessing."
-Andrew Jackson

A FRIENDLY WORKPLACE--GOOD FOR YOUR HEALTH
Your job, your workplace, is something always important to those with Moebius Syndrome or those with other kinds of physical differences.  We worry about whether anyone will hire us, because we look and sound different.  Even when we get a job, we feel concern over whether our colleagues in the workplace will respect us.  We want the best job we can get; we worry sometimes that, because we look and/or sound different, that maybe we are passed over for promotions or have a hard time getting that better job.  So on this topic, this piece today is an important one--it reminds us to keep trying, not to settle for less, not to give up on seeking work and trying to find something better.  Because a good, fulfilling, supportive workplace is good for your health:
"Getting along with your colleagues at work may do more than boost your productivity. It may also be a boon to your health.
Researchers at Tel Aviv University found that people who felt that they had the support of their colleagues and generally positive social interactions at work were less likely to die over a 20-year period than those who reported a less friendly work environment. Over all, people who believed they had little or no emotional support in the workplace were 2.4 times as likely to die during the course of the study compared with the workers who developed stronger bonds with their peers in other cubicles.
To study how office politics influenced health, the researchers recruited 820 adults who visited a local health clinic in 1988 for routine checkups, then interviewed them about their jobs, asking detailed questions that delved into whether they found their supervisors and peers approachable, friendly and helpful to them. The subjects worked in a variety of different fields — like finance, health care, insurance and manufacturing — and ranged in age from 25 to 65. People who were suspected of having physical or mental health problems at the start of the study were excluded.
Over the next 20 years, the researchers were able to follow the participants and monitor their health through their medical records. That gave them the chance to look for risk factors that could influence the results and allowed them to control for things like blood pressure, obesity, drinking habits, smoking, anxiety and depression.
By the time the study ended in 2008, 53 of the workers taking part had died; most of them had cast their work support networks in a negative light. Though correlation doesn’t equal causation and it is difficult to tie the causes of those deaths to specific factors in such a study, the researchers discovered some findings that surprised them.
One thing they noticed was that the risk was only affected by a person’s relationship with his or her peers, and not with that person’s supervisors. The way people viewed their relationships with their bosses had no impact on mortality.
The researchers also found that a person’s perceived level of control at work also influenced risk. But it had differing effects for men and women. Men who reported that they were allowed freedom over their daily tasks and could take more initiative at work had a lower risk of dying during the study period. But women who reported more control had an opposite outcome: Their risk of death over the course of the study rose by 70 percent.
That may have had something to do with changing gender roles in typical work environments when the study began two decades ago, said Sharon Toker, an author of the study and professor in Tel Aviv University’s organizational behavior department. While many office environments were not exactly the testosterone-fueled boys’ clubs typical of “Mad Men,” women did find themselves in more “masculine social environments at work, especially if their co-workers were men,” Dr. Toker said in an e-mail.
“Women having more control of their work pace and schedule usually hold higher positions,” she said. “They were, and still are, expected to wear several hats — the ‘senior worker,’ the ‘mother.’ Thus, having more control in itself may have been a stressor.”
In an age in which many people interact with colleagues only through electronic communication, Dr. Toker said she believed many companies could foster more socially supportive workplaces by encouraging face-to-face exchanges. Among the ways of doing that, she said, are holding regular social outings for employees, designating “coffee corners” where people can chat over breaks and creating peer-assistance programs that allow workers to discuss issues or problems in confidence."

THE PROBLEM OF STARING
Meanwhile, the other day on Facebook the question of "staring" came up.  That is, what about when people stare at you, because you look different or sound different?  How should you react?  What can you do?  The excerpt below is actually from a site addressing persons with arthritis...not Moebius.  But I think what it says can help all of us:
"What's Really Behind The Stare?
Is the person that is staring consciously projecting negative feelings?
Are they ill-at-ease with anything that appears less than normal?
Are they fearful of what they don't understand?
Are they made tense as they imagine themselves in the awkward predicament they are witnessing?
Is it just idle curiosity?
We can assume that what's really behind a stare varies and in any instance you can only guess what's really behind the stare. A person can stare because of:
fear
ignorance
curiosity
mean-spiritedness
The person being stared at has few options as a response to the imposed embarrassment. They can internalize the negativity which they receive as vibes from the person who is staring, whether the negative vibes are deliberate or not. They can give in to the uneasiness created by their own swirling emotions made more turbulent by a combination of:
vanity
imperfection
expectations
Or, they can consciously shed the negativity by resolving to feel confident and significant, a master of the challenges they face, undiminished by the ogling of another person."

Amen.


"Being defeated is often a temporary condition. Giving up
is what makes it permanent." -Marilyn Vos Savant

MORE BRAIN TALK
Always interesting to persons with Moebius.  Today--how our brains on the one hand are not "wired" for the 21st century and yet, how they can do so much more than can a computer:
"Even the best computer system is prone to glitches. So is the human brain. But while we can easily fix and update those digital annoyances, the human brain and its complex neural web can’t be deleted and upgraded. In his new book, "Brain Bugs: How the Brain’s Flaws Shape Our Lives", UCLA neuroscientist Dean Buonomano tells us how our brain’s shortcomings impact many of our everyday decisions.
Q: You say that our brains aren’t “programmed” to live in the 21^st century. What do you mean?
A: Think of a moth flying into a candle flame. Clearly, the moth didn’t evolve to deal with light sources up close, whether that’s candles or artificial lights. Our brains were optimized to live in a world in which we dealt with finding food and shelter. Now, our brains have to deal with a world in which we plan decades into the future, have abundant food, and know a thousand different people.
Q: In your book you talk about how easily humans are swayed by marketing and propaganda. Why is that?
A: Our ability to process context can be used against us. A classic example is the “framing” effect. If you hear that you have two options for a medical treatment and one has a 95 percent survival rate and the other has a 5 percent mortality rate, people are biased toward the treatment with a positive association -- even though both are mathematically the same. Marketers take advantage of this because of our positive biases.
Q: I have a lot of bugs in my computer. But I never thought of my brain as having "bugs."
A: I obviously borrowed the term from the computer lexicon. Compared to the computer, the brain has a lot more cool things like consciousness, awareness and creativity. But as an information device, the brain does some things well, and some things very poorly due to “bugs,” which affects things like forming false memories, making irrational financial decisions and problems with remembering names and dates.
Q: Despite its glitches, the brain is clearly better than a computer at certain things, right?
A: A computer is better at figuring out a logarithm at eight digits. Its “switches” are very fast, very discrete. The building blocks of the brain, our neurons, are very noisy, because they’re very social and communicate with each other. Let’s say you turn your TV on, and you hear a person talking about "valves."  If that person has a medical coat on, you’ll interpret the valve comment in the context of the heart. If the person has a mechanic’s uniform on, you’ll think car. The brain is exquisitely capable of picking up context that a computer can’t."

"In my day, we didn't have self-esteem, we had self-respect,
and no more of it than we had earned." -Jane Haddam

A DARK CHOCOLATEY HEALTH TIP
A little dark chocolate--not too much, now!--can be a good thing for your health, say some scientists:
"For those who worry that fitness requires nutritional denial, there is good news, with caveats. Auspicious new science suggests that chocolate can have a surprisingly large effect on the body’s response to exercise, although not in the ways that many of us might expect, and certainly not at the dosages most might hope for.
Researchers have known for some time that chocolate has healthful effects, and recent epidemiological studies have shown that people who regularly indulge in moderate amounts of dark chocolate are less likely to develop high blood pressure or heart disease or suffer strokes. But chocolate’s potential role in exercise performance had not been studied, or probably even much considered, until scientists at the University of California, San Diego, and other institutions gave middle-aged, sedentary male mice a purified form of cacao’s primary nutritional ingredient, known as epicatechin, and had the mice work out. Epicatechin is a flavonol, a class of molecules that are thought to have widespread effects on the body.
The mice were given small liquid doses of epicatechin twice a day. A separate control group of mice drank equal amounts of water.
Both groups were divided into two. Half of the animals in each group began a light exercise routine, which consisted of strolling on a treadmill for a short period each day. The regimen was not meant to get the animals into tiptop shape, only to get them moving. After 15 days, all of the animals completed a treadmill test, during which they ran to exhaustion. The researchers also biopsied the animals’ back leg muscles.
By and large, the animals that had been drinking water were the first to give out during the treadmill test. They became exhausted more quickly than the animals that had received epicatechin. Even the control mice that had lightly exercised grew tired more quickly than the nonexercising mice that had been given epicatechin. The fittest rodents, however, were those that had combined epicatechin and exercise. They covered about 50 percent more distance than the control animals.
The muscle biopsies offered some explanation for their dominance. The muscles of all of the animals that had been given epicatechin contained new capillaries, as well as biochemical markers indicating that their cells were making new mitochondria. Mitochondria are structures in cells that produce cellular energy. The more functioning mitochondria a muscle contains, the healthier and more fatigue-resistant it is.
The leg muscles of the mice that had been given epicatechin and exercised displayed far more mitochondrial activity than the leg muscles of the control mice. Even the mice that had drunk epicatechin and not exercised contained markers of increased mitochondrial health, suggesting that the flavonol prompts a physiological reaction even among the sedentary. But that response is greatly heightened by exercise, no matter how slight.
Exactly how epicatechin intensified the mouse muscles’ response to exercise is not yet known, but “it seems likely that muscle cells contain specific receptors for epicatechin,” said Dr. Francisco Villarreal, a professor of medicine at the University of California, San Diego, and one of the authors of the study, which was published last week in The Journal of Physiology. Epicatechin binds to the receptors and “induces an integrated response that includes structural and metabolic changes in skeletal and cardiac muscles resulting in greater endurance capacity,” the study concluded.
Mice are not people, though, and it remains to be seen whether the fitness-boosting effects of epicatechin will be identical in humans, especially since most of us would be getting the substance not in purified liquid form but in chocolate. “Processing destroys epicatechin,” Dr. Villarreal said, so heavily processed milk chocolate contains almost none of the flavonol, while cacao-rich dark chocolate has far more.
And even for those who adore dark chocolate, there is a catch. “A very small amount is probably enough,” Dr. Villarreal said. Extrapolating from his group’s mouse data, he said, five grams of dark chocolate daily, or just a sixth of an ounce — about half of one square of a typical chocolate bar — is probably a reasonable human dose if your aim is to intensify the effects of a workout.
Sadly, “more is not better,” he continued. “More could lessen or even undo” any benefits, he said, by overloading the muscles’ receptors or otherwise skewing the body’s response.
But given human nature, microdoses of chocolate may be impractical, underscoring the difficulties of using nutrition to bolster fitness. Dr. Villarreal’s colleagues regularly filch from his cache of dark-chocolate bars, he said, and despite his admonitions, they invariably finish the entire thing. “I keep telling them that’s too much,” he said. “But it doesn’t matter. They want to eat the whole thing and,” no matter what the expert tells them, “they do.”


"Goals are not only absolutely necessary to motivate us.
They are essential to really keep us alive." -Robert H. Schuller

THE TEN HABITS OF HIGHLY ORGANIZED PEOPLE
Now these are ideas we can all, always, benefit from:
"1. Walk away from bargains
Just because you can buy a cashmere sweater for $20 or three bottles of ketchup for the price of one doesn't mean you should. "Ask, 'Do I have something similar?' and 'Where am I going to store it?' before making a purchase," advises New York City professional organizer Julie Morgenstern, author of "Shed Your Stuff, Change Your Life."
2. Make peace with imperfection
Efficient people give "A-level effort" to the most important projects (say, work assignments or a kitchen redesign), and for the rest they do just enough to get the job done, says Renae Reinardy, PsyD, a psychologist who specializes in hoarding disorders. Maybe you give yourself permission to bring store-bought cookies to a school bake sale or donate a bag of stuff -- unsorted! -- to Goodwill. "Trying to do every task perfectly is the easiest way to get bogged down," says Reinardy.
Oprah.com: How to stop trying to be perfect all the time
3. Never label anything "miscellaneous"
You put a bunch of things into a file or box and write this catchall across the front. "But within a week you've forgotten what's in there," says Morgenstern. Instead, sort items into specific groups -- "electric bills," "lightbulbs," and so on.
4. Schedule regular decluttering sessions
Rather than wait until an industrious mood strikes (we all know where that leads), have a decluttering routine in place -- whether it's spending 15 minutes sorting mail after work or tackling a new project every Sunday afternoon.
5. Stick with what works
"I have clients who will try every line of makeup, every cell phone -- it's exhausting," says Dorothy Breininger, president of the Delphi Center for Organization. Don't waste time (and money) obsessively seeking out the best thing.
6. Create a dump zone
Find a space to corral all the stuff that you don't have time to put away the moment you step in the door, says Breininger. Once you're ready to get organized, you won't have to hunt all over the house for the dry cleaning or your child's field trip permission slip.
7. Ask for help
"The organized person is willing to expose herself to short-term embarrassment and call for backup," says Breininger. Which is to say, that elaborate four-course dinner you planned? Change it to a potluck.
Oprah.com: When to ask for help -- and how to do it
8. Separate emotions from possessions
It's healthy to be attached to certain items -- a vase you picked up in Paris, your grandmother's pearls. But holey concert tees or cheap, scuffed earrings your husband gave you years ago? Just let them go.
9. Foresee (and avoid) problems
You wouldn't leave the house on a gray day without an umbrella, right? People who appear to sail through life unruffled apply this thinking to every scenario, says Breininger. Have a cabinet packed with leaning towers of Tupperware? Organized folks will take a few minutes to short-circuit an avalanche before it happens. (In other words, rearranging that cupboard now is easier than chasing after wayward lids as they scatter underneath the fridge.)
10. Know where to donate
It's easier to part with belongings if they're going to a good home. Identify a neighbor's son who fits into your child's outgrown clothes, or choose a favorite charity. "It will save you from searching for the perfect recipient every time you need to unload something," says Morgenstern."

SOME OTHER GREAT LINKS TO CHECK OUT TODAY ARE...
And by the way, all of these links were provided on Facebook; and my thanks goes to all of our FB friends for tirelessly finding things on the web which so many of us can use.

Jon's impossible dream--so he can smile.  Hat tip for sharing this link:  Tim Smith.

A link to a support group in Australia for those with Moebius Syndrome and facial paralysis.  Hat tip:  Karin Thompson.

Here's a link to a group in the UK with an excellent, and pertinent, site devoted to understanding differences.  Hat tip:  Sandy Goodwick.

And finally, here's a link to a site titled "iface."  As it describes itself:  "iFace is a website set up by a charity called Changing Faces for young people aged 11-21 to discuss disfigurement, give and get advice and share personal stories. Take a look around and see how other young people are dealing with their experiences."  Hat tip:  Sandy Goodwick, once again.


"Never regret. If it's good, it's wonderful. If it's bad,
it's experience." -Victoria Holt

TOO MANY BUY INTO THE FANTASY
We were talking about this the other day--too many believe that looks are everything, that one's outside appearance is the be-all and end-all, that we must have the "beauty" products that will provide us the fantasy of endless youth.  This piece focuses on women, but don't think that men don't buy into this either.  Too many do.  We mustn't let our outward appearance be the entire sum of our self-worth, but too many do.  Read on:
"As a cosmetics saleswoman, Shannon Barnes constantly fielded the same question from women looking at mascara ads perched on her department store counter: Are those eyelashes real?
Um, no, she told them. Mascara alone would never -- could never -- produce eyelashes as full and thick as those on the models. Armed with the truth, most customers did the natural thing: they bought the mascara anyway, said Barnes, now a pro makeup artist in Sioux Falls, South Dakota.
"Even I can still be sucked in by the hype," said Barnes, who knows full well her facial artistry will be airbrushed by photographers until the models she works on barely resemble those she started with. "I know the extent of the deception. Sometimes I tell young girls, 'It's not a real image.'"
The banning this week of two L'Oreal ads featuring Julia Roberts and Christy Turlington in the UK for being so retouched they no longer reflected reality produced a pronounced shrug from across the pond, where psychologists and cosmetics industry gurus posited that American women are in on the game -- and they don't necessarily care.
"We don't want to see an ordinary person in the ads. We want to see a spectacular person," said Nancy Berk, a clinical psychologist in Pittsburgh. "You underestimate women when you think we can't see beyond the facts. We're aspiring to improve ... we want to feel like we've done what we can."
The $10 billion cosmetics industry walks a fine line in promising lotions and potions will help consumers turn back the clock, diminish lines, lift eyelids or brighten dull complexions. The Federal Trade Commission, which regulates truth in advertising in nearly every sector, requires companies to be able to substantiate these claims, but creative and conditional words such as "reduces appearance of," "repairs hair" and "skin looks younger" don't lend themselves to easy or enforceable definitions.
"Doing these ads is not simply careless," said Mary Lou Quinlan, CEO of Just Ask a Woman, a New York City marketing agency that's done business with the likes of Maybelline and Estee Lauder. "They don't just write anything they want. It's creative, but it's accurate."
Just like beauty, however, accuracy and exaggeration are in the eye of the beholder. Paula Begoun, Renton, Washington author known as the "Cosmetics Cop" who was fired from her first two jobs for refusing to sell skin care products that didn't work as advertised, said hair care, anti-aging and anti-acne products tend to have the most exaggerated to downright false claims.
"An example of this type of wording is, 'Skin appears more even and looks lifted.' That states what women want to hear but doesn't state skin will be lifted or even," said Begoun, who has written 17 controversial books on the cosmetics industry and annually reviews thousands of products from more than 400 skin care companies. "But there are also many times when the ad or claim is just out and out not telling the truth."
What about women who really believe the hype and then realize they don't still look 25? They tend to be the same people who are dissatisfied with their lives in general and base their self-worth on how they look, experts say.
And they do have options, albeit expensive ones. Those inclined to go under the knife can place their hopes in cosmetic surgery, while many will continue to plunk down tens or hundreds of dollars, cruising from brand to brand, on products that may continue to disappoint.
"I don't think this is a conscious thought process, but we want to grab on to something," said Brooke Miller, a psychotherapist near San Francisco. "If women are really trying to figure out how to love themselves, trying to find that self-worth in a product or a cream, then these companies are not really selling a product, they're selling a state of mind."
"We never really don't have an option ... and that's why these companies are thriving," Miller added. "There's endless possibility. So many people are addicted to the process."
Even industry executives aren't immune.
"I know if I buy a tube of lipstick and put it on, I'm not going to look like Christy Turlington, but an ad with Christy Turlington is going to get my attention," said Farah Ahmed, vice president and associate general counsel at the Personal Care Products Council, a national trade association for the cosmetics industry. "It's human nature."


"Life is a great big canvas, and you should throw all the
paint you can on it." -Danny Kaye