SECRETS OF SPECIAL NEEDS MOMS
A couple of my Facebook friends already posted this piece there, and so I tip my hat to them for finding this.  But I wanted to post it here, too, because I think it's a great piece and if any of you haven't seen it, you should read it.  Needless to say, many children with Moebius Syndrome are special needs children--and thus their moms, and their dads too, have to be really special people in order to care for them.  And I think what this piece brings out is that parents of special needs kids have their own needs, as well.  I bet many of you Moebius moms and dads can identify with this essay.  And feel free to tell us anything that we should add to these "secrets", too:

"I am a special needs mom. And I have secrets. Things I don't talk about and other moms don't know -- or maybe they just forgot about along the way. Here are six of them.
1. Special needs moms are lonely. I yearn for more time with friends and family. I have an authentically positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy and have enough help. But I am lonely. Being a special needs mom doesn't leave me the time to nurture and maintain the relationships I really need. I could get super detailed here about the hands-on caring for my child. (Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus some.) The plus-some includes spreading my mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention. I don't have much time to call or email my friends and even family ... and if they don't call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I miss the days when I had playgroups with other moms, open-house style, dropping in and drinking coffee at a friend's kitchen table with my child playing nearby.
2. Special needs moms have to work extra hard to preserve their marriages. This work goes along with the high stress of special needs parenting and aims to combat the sky-high divorce rates for special needs families. I put extra pressure on my husband; he is my best friend, and sometimes I expect unrealistic BFF behavior from him at the end of the day (see no. 1). He is my hero: supportive, patient and loving -- and my kids would be totally lost without him. The success of our marriage will affect the health of our children. My husband and I haven't spent a night away from our kids for six years. We "date night" out of the house every few months, for a two-hour sushi date. Our marriage is a priority, so we "steal" our moments when we can.
3. Special needs moms are not easily offended. Despite what our social media status updates say, we are vulnerable, and life messes with us daily. So really, ask what you want to ask and it's OK to start with "I don't really know how to say this, how to ask you...." I am especially touched when someone cares enough to ask me how my child is feeling, or how to include my child in a social gathering, meal or other event, and am happy to collaborate on what will work for us.
4. Special needs moms worry about dying. We worry about our kids getting sick and dying; we worry about our husbands dying and leaving us alone; but most of all we worry a lot under the surface, and especially about being around to care for our children. We watch people we know grieve the loss of their children and try not to think about it. On the upside, we live life fully and don't take it for granted.
5. Special needs moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language "spoken" in every home.
6. Special needs moms know to savor the gift of a child saying "I love you." For the longest time I wasn't sure if my daughter Zoe would ever speak the words. When she was a newborn, it was her sighs of contentment as I held her against my breast that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her when I carried her in my arms. The first time Zoe found her words, she was already a little girl, and every time she spoke them I cried. She is 10 now, and her words are even more tender and wise. I leaned into her at bedtime the other night, and as her hand reached up, caressing my cheek, she whispered... "I love you Mom, for taking such good care of me."

"Just don't give up trying to do what you really want to do.  Where there is love and inspiration, I don't think you can go wrong."--Ella Fitzgerald

INSPIRATION STORY OF THE DAY!
An abused but recovering puppy dog is a big help for a boy with autism. You'll learn a lot in this piece about autism, about the wonderful use that certain kinds of dogs can be for those with autism.  And  what a great story:

For most of Jonny Hickey’s eight years of life, solitude has suited him just fine.
He adores his mom and dad, of course, and he loves his older brother. He also views some special ed teachers as rare, trusted allies. Still, none of those people could get many words out of him.
It’s not that Jonny can’t talk. He knows how to speak, and he can read with proficiency. But autism left him closed off and isolated. Most of his social interactions result in painful awkwardness; unfamiliar situations can trigger terror, tantrums or both. Seeking comfort and predictability, he’d embrace solitary activities; on a typical day after school, he’d spend hours playing with marbles in silence.

Then, about two months ago, everything changed. Jonny forged a connection so unlikely that people familiar with it describe it as a miracle. His new confidante brings out the best in him — his playfulness, his cute singing voice, his verbal assessments of everything he sees and experiences.
Jonny connected with a dog.
“He is non-stop chatter now!” Jonny’s mother, Linda Hickey, 44, told TODAY.com. “He has so much to say about his math, about what he did in P.E.
“He is the happiest child that I’ve ever seen him be in eight years.”

Jonny’s transformation begins with the miracle that the dog survived to meet Jonny at all.
Mere months before she bounded into Jonny’s world, the pup was brought to the DeKalb County Animal Services’ shelter in Georgia after she collapsed in someone’s yard. When staff members saw her, they recoiled in shock.

“I’ve been doing rescue probably for about 12 years, and I had never seen a dog that young in that sort of condition,” said Chrissy Kaczynski, who works for Animal Services and is a founding member of the rescue group Friends of DeKalb Animals. “I brought her home with me and I didn’t think she’d make it through the night.”
But with fluids, nutritional supplements and an urgent vet visit, the puppy began to perk up. Veterinary and shelter staff guessed she was about 4 months old and must have been confined — and starved — in a cage before being dumped.

“She was completely dehydrated and her nose was all scabbed over ... like she had been trying to escape something,” Kaczynski said.
Her rapid recovery prompted Kaczynski to dub her “Xena the Warrior Puppy.” A Facebook page soon followed. One local who found Xena’s story irresistible was Linda Hickey, Jonny’s mom.

“Yes, I fell in love with a dog on the Internet!” said Linda, whose family lives in Johns Creek, Ga., with two other lovable dogs that are a bit too old or frail to play non-stop with a young boy.
When Friends of DeKalb Animals announced that Xena, believed to be a Staffordshire terrier mix, was strong enough to appear at a fund-raising event in November, Linda brought her family to meet the puppy in person.
“We were literally there for four minutes, and Xena ran right up to Jonny and my husband,” Linda said. “I already loved this dog, and after I met her, I really loved this dog.”
Not surprisingly, the family adopted Xena soon after.
On their first trial day together — Feb. 11 — Linda decided to bring Xena along in the minivan when she picked Jonny up from school. Jonny smiled widely, then melted in the onslaught of unconditional affection.
“From that very first day, that dog was sitting in his lap in the car seat, giving him all these kisses,” Linda said. “And that’s where she’s been ever since.”

Research regarding the effects of companion animals on kids with autism is limited but encouraging. One study published earlier this year revealed that children with autism spectrum disorder were more likely to talk, laugh, make eye contact and show other positive social behaviors in the presence of guinea pigs than they were in the presence of toys.
And in a 2006 pilot investigation, children with autism spoke and interacted much more when they could pet dogs or rabbits, throw balls for dogs, ride llamas and engage with animals in other ways during occupational therapy sessions.

For more than a decade, Autism Service Dogs of America has paired children with specially trained dogs that have a calming effect. In the dogs’ presence, kids have an easier time getting through their school days or handling simple outings with their parents.
Just the other day, Linda Hickey tried bringing Jonny to a familiar salon for a haircut. Jonny’s anxieties bested him, and he just couldn’t do it. The next day, Linda turned the haircut into an outing for the whole family, Xena included. Her husband Grant, 50, brought Jonny into the salon, and Linda stayed outside with Xena.
“I’d wave her paw so he could see her,” Linda said. “With Xena there, he got the haircut.”
Xena helps Jonny in other ways as well. He’s always struggled with personal-space issues, but he’s fine with letting the dog lean on him, lie down on him and perch precariously on his lap. It doesn’t matter that she weighs 43 pounds and he weighs 48.
“I’m not a doctor, but I do know Jonny has a zillion sensory issues and I wonder if that pressure is calming for him,” Linda speculated. “Maybe it’s like a beanbag chair. A beanbag chair is great for him because it’s like a giant hug.”

Sincethe adoption, Linda has been providing updates to Xena’s 19,000-plus fans on Facebook, an activity that’s been a balm to her.
“At first I didn’t tell anyone on Facebook that Jonny had autism, and they fell in love with him without judgment,” Linda said. “And then when I told them all that he had autism, they still loved him. It just brought tears to my eyes, actually.”
Linda’s Facebook experience was so positive she decided to make a YouTube video featuring her son and his dog to lend support for Autism Awareness Month and Prevention of Cruelty to Animals Month, both happening in April.
“My name is Jonny and this is my puppy, Xena,” he says in the video, as his pup rests near him with a supportive paw on his lap. “Well, my Xena was hurt really bad by some not-so-nice people. And I have autism. So I think we make a pretty perfect team to spread the words to be nice to animals, and nice to kids like me.”
While the Hickeys are more hopeful now than they’ve ever been about Jonny’s future, they find it best to focus with laser-like precision on the day they’re living, and possibly the day after that.
“I’m just trying to make every day be the best learning day it can be for Jonny,” said his mother, who works part time as a preschool teacher. “High school, college — I do dream for these things, but right now I have to buckle down and work hard every day to get him there.
“I’m a therapist for Jonny. I’m a teacher for Jonny. It’s non-stop learning here because it has to be. He deserves it.”
What she never expected was that she’d have a back-up therapist and teacher in Xena.
“I really believe God had a plan,” Linda said. “These two were destined to be together — to save each other at a level that humans just can’t understand.”

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

Be sure and go to the original link to this story above, too--it has some great pictures.

INSPIRATIONAL STORY OF THE DAY
About a young girl from the UK with a rare muscle disorder--but who can now do more than anyone ever thought:

Lillia Reading is finally learning to walk and run at the age of 4 — after she was given splints.
Lillia was born with a rare muscular disease, which left both her knees permanently bent like a frog’s.
She developed just two muscles in each leg instead of 15 and got around by wheelchair or shuffling on her bottom.
But Lillia is now up and running — after doctors cut the tendons behind her knees and attached splints to straighten her legs.
Her mother, Katie, 31, said the splints cover her whole leg and bend around the knee.
"If she wants to get up and run around she can just pop them on, then take them off when she wants to sit," Katie said.
"She’s a proper little princess — and now she can strut around like one too.”
Doctors diagnosed Lillia’s condition — a form of muscular myopathy they had never encountered — after she was born four weeks early, weighing 4 pounds, 5 ounces. She's had 13 surgeries but nothing worked — until now.
Lillia, from Sheffield, now goes to nursery school and can’t wait to start primary school in September."

"People will try to tell you that all of the great opportunities have been snapped up.  In reality, the world changes every second, blowing new opportunities in all directions, including yours."--Ken Hakuta

PEOPLE WITH MOEBIUS SYNDROME:  WE ARE THE DIVERSITY!

Today I want to be sure and give credit to a couple of my friends on Facebook, because it was actually their posts that sort of inspired what I'm writing here.  I'm referring to Gavin Fouche of South Africa, and Sandy Goodwick of California; and both of them posted today about how Moebius Syndrome can actually come in handy, be helpful to others.  For Gavin, it allowed him to teach his goddaughter a little something about teasing, for she was being picked on a bit at school.  We with Moebius know something about being teased (his goddaughter seemed to sense that immediately).  Meanwhile Sandy was contacted for advice by a former student of hers who now, herself, has a child with a serious physical difference.

So that all got me thinking:  yes indeed, I suppose Moebius Syndrome can be a hidden blessing sometimes, it can be helpful.  But how could we explore that further?  Can we explain more about how it can help us, and others?  Well, what I came up with was this:  you know how Moebius Syndrome can help others, and us, too?  It can if we remember something simple:  we're an excellent example of diversity.

So many places of employment say they value diversity today.  Schools, colleges and universities emphasize it as well.  So if for example you're seeking a job, or you are applying for college or graduate school?  Don't forget to say:  you're the diversity, just as much as are other minorities.  That's one way Moebius Syndrome can help you.

And we can help others.  We know what's like to have physical differences and handicaps.  We know what it's like to have a facial difference; and thus, perhaps, to be teased, or to be stared at.  In a larger sense, we know what it's like to face obstacles in life.  And so many of us in the Moebius Syndrome community are fine examples of the fact that we can teach others something else, too:  how to overcome those obstacles.  We've dealt with a lot of things in life.  We have a unique perspective.  We need to share it.  Isn't that a lot of what diversity is all about?

So how can we help others, and ourselves?  Remind others:  you want diversity?  We're diversity, right here.  Do you want to learn?  Does diversity help you learn?  Well, we have our own unique perspective, and I think we have a lot to teach others.  So don't be shy.  Remind others who and what you are.  Share what you have to teach.  As we've learned today and every day, we are teaching people new things all the time.

I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT
No matter how you're connected to the network of people associated with Moebius Syndrome, many of us share something in common--we work.  We have jobs.  And I can tell from all of our conversations and the snippets we gain from our lives that all of us struggle with something simple--that work/life balance.  How do we find that right balance?  I found a story the other day that speaks to this--maybe you'll find it interesting, too.  Read on:

That “work-life” balance thing we keep hearing so much about?
More than 39 percent of employees worldwide say they haven’t got it, according to newly released research from Hay Group, a global management consulting firm.
Not surprisingly, this dissatisfaction leads to high employee turnover.
“Organizations across the globe continue to ask their employees to ‘do more with less,’ leading to increasing dissatisfaction with work-life balance,” said Mark Royal, senior principal at Hay Group Insight, and co-author of “The Enemy of Engagement,” a book about workplace frustration and productivity.
The research, which is updated annually, was culled from responses from more than 5 million employees in more than 400 companies across 65 countries.
Some of the findings are surprising. For example, Central America ranks highest in work-life balance, with 70 percent of employees saying their companies support them in achieving a reasonable balance between work and personal life. North America is second (65 percent), followed by eastern Asia (63 percent), Latin America and the Caribbean (63 percent), and Southern Asia (62 percent).
Interestingly, only 44 percent of employees in Western Europe — the stereotypical epicenter of harmonious existences — said their companies support them in achieving a reasonable work-life balance, an 11 percentage point drop from 2011. That’s compared to 56 percent of employees in Eastern Europe. The United Kingdom fell in the middle, while Africa and the Middle East report the bleakest perceptions.
And though many companies believe that telecommuting or allowing employees to work flexible hours are sufficient, they’re not.
“Providing people with flexibility over where and when they work can be a part of dealing with work life balance concerns, but our message is that while they might be of help, they’re not addressing the fundamental concerns,” he said. “For too many of today’s workers there is simply too much work and not enough time.”
The numbers back up his assertions: More than one in four (27 percent) of dissatisfied employees plans to leave their companies within the next two years, he said.
To retain them, Royal believes that companies must approach the work-life balance issue as a “challenge to enhancing productivity.” “Organizations need to think about broader solutions,” he told ABC News. “The solution has to extend to helping people work smarter as well as harder. If organizations can help employees be more efficient while they are at work, they reduce the likelihood that work demands will spill out over the work day and crowd out time to attend to personal responsibilities.”

"There are no such things as limits to growth, because there are no limits on the human capacity for intelligence, imagination and wonder."--Ronald Reagan

MOEBIUS SYNDROME IN THE NEWS
This time it comes from New Zealand, and has to do with my friend Leigha Hartley and her brave son David, who has Moebius Syndrome.  Read on:

David Hartley and his assistance dog Rex are good friends

Hamilton mum Leigha Hartley jokes that she'd like to see Richie McCaw become the face and name behind the Assistance Dogs NZ Trust.

The reality is a high profile ambassador is what the trust needs to boost its profile - and its funding.

Leigha's son David, 7, was born with Moebius syndrome, an extremely rare congenital neurological disorder. David took possession of an assistance dog in December.

The syndrome means David suffers from facial paralysis so he can't blink, doesn't have full movement of his eyes and cannot form facial expressions. His vocal chords are also paralysed so he can vocalise but cannot speak. He also suffers from severe balance issues.

Rex has had a profound effect on David's - and Leigha's - lives. "Rex has fitted in perfectly," said Leigha.

Trained specifically to meet David's needs, Rex is David's constant companion. In time, David's eyesight is likely to deteriorate so Rex will act as a guide dog, but he can also act as a 'tether' for David who has a tendency to run off when he's out in public.

"David is bonding really well with Rex. It's not just me and David now. David wants Rex with him, he loves caring for another being," said Leigha.

A single mother to David, Leigha said her son had spent a lot of time around adults and Rex enabled David to be "a kid again".

"David has almost no balance so when he lets go of the wall he sways all over the place because of his ligaments. David can fall on Rex and he just takes it in his stride; he's big enough to cope with David's balance issues.

"Julie had Rex in mind for David because of Rex's quiet nature. He is so calm and placid. He's so well trained but has so much life in him."

But having Rex comes at a huge cost. Assistance Dogs NZ Trust founder Julie Hancox says it costs $20,000 to raise and train an assistance dog - and $48,000 for "whole of life costs". It pains Julie to ask families to fundraise for the dogs they so desperately need, but has no choice.

Leigha fundraised for three years for Rex and is grateful to Altrusa for its assistance, and that of a generous Auckland couple.

Leigha would love to see a high profile Kiwi put their hand up to be an ambassador for the trust which struggles financially as it competes alongside many other charities.

"It doesn't get the funding that other organisations do," said Leigha. And yet the dogs that Julie trains are for people with a variety of disabilities. "Our biggest thing is we aren't defined by a disability. We train a dog specifically to meet a person's needs. We begin with the basics, look at where the dog is best suited, and then continue to train the dog to meet that person's function loss."

Julie had Rex in mind for David from the time she recognised how gentle Rex's temperament was. Dogs can be trained to assist people with autism/Asperger's, Down Syndrome, developmental impairments, brain injuries, cerebral palsy, diabetes, physical and neurological disabilities.

A former guide dog trainer and instructor, Julie founded the trust in 2008. The waiting list for a dog is about two to three years.

"It would be shorter if we could secure funding for another permanent position. Until we secure more funding, we can't grow."

The trust receives no taxpayer funding, relying solely on donations, bequests and community support.

Julie says puppies are placed on a development programme at about eight weeks old. They are then socialised and receive initial obedience training. Puppies are placed with families that raise them and socialise them to the standards required by ADNZ. At about a year old, each pup begins more extensive training for the assistance role it's likely to perform.

Dogs are usually ready to be placed with an applicant at about 18-20 months.

For more details, or to donate to ADNZ, visit www.assistancedogstrust.org.nz.

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

"Accomplishments will prove to be a journey, not a destination."--Dwight D. Eisenhower

A HOLLYWOOD MOVIE PUTS AUTISM FRONT AND CENTER
It's called "The Story of Luke", and it had its debut very recently--check it out:

A feature film debuting at movie theaters across the country this week is giving big-screen attention to the desire among many with developmental disabilities for independence as they become adults.

“The Story of Luke” focuses on a 25-year-old with autism who is adjusting to life with relatives after his grandmother — and long-time caretaker — dies. Luke resolves to make it on his own and embarks on a journey to find a job and a girlfriend.

The fictional account is rooted in the real-life experiences of the film’s writer and director, Alonso Mayo, whose mother runs a school for those with developmental disabilities in Peru. Mayo said he was inspired to write the script after seeing many kids from his mother’s school grow into adults who yearned for the same opportunities as their typically developing peers.
“They wanted a girlfriend, they wanted to live on their own,” Mayo said. “I started seeing these young adults having the same issues everyone else has around relationships and independence.”
Since the movie premiered at the San Diego Film Festival in September, it has garnered awards for best film at five festivals. Though the story is aimed at a general audience, Mayo said he took pains to ensure the authenticity of the character portrayals and he’s gotten positive feedback — particularly from parents of those with autism who say the film hits home.
“We wanted to make sure that we were true, that it wasn’t a caricature,” Mayo said. “We want people laughing with Luke, not at Luke.”
Showings of “The Story of Luke” are scheduled at theaters in 14 cities across the country on Friday, with week-long runs beginning the same day in Los Angeles, New York and Ogden, Utah.
In addition, the film will be available on iTunes and through several cable and satellite on-demand services."

"If you have made mistakes, even serious ones, there is always another chance for you.  What we call failure is not the falling down, but the staying down."--Mary Pickford

INSPIRATIONAL STORY OF THE DAY

Young children are battling serious sickness and disease.  But they inspire one woman to...go to her sewing machine.  Read more:

Many people follow blogs for advice, laughter and  inspiration. Sometimes the stories we read are so powerful they inspire us to act. In the case of Robyn Rosenberger, those powerful stories made her want to sew.
The Seattle mom was making superhero capes for her 1-year-old son when she came across a blog about a baby girl named Brenna. Brenna was born with a rare and severe skin disease. She needed eye surgery at just 3 weeks and beat an aggressive blood infection. In Robyn’s mind, Brenna was a fighter: She was Super Brenna.
“I realized that while my son looked cute in a cape, Brenna needed a cape,” Rosenberger said.
So she reached out to Brenna’s mom, Courtney Westlake, who lives in Springfield, Ill., through Facebook, and asked if she could send a cape her way.

Super Brenna's story was the first to inspire Rosenberger to start crafting capes for other kids.

“She was ecstatic and told me that they have been calling Brenna their superhero since she was born,” said Rosenberger. That was the moment TinySuperheroes was also born.
Within a month Robyn’s Singer machine pumped out 80 capes. In the last two months the colorful cloaks have empowered more than 100 kids nationwide, many of whom are fighting illnesses that are undiagnosed, terminal or don’t have a cure.
"When Brenna was first born, my husband's aunt told us that she was initially afraid to see a photo of her because of her severe skin condition," said Westlake. "But she told us that despite Brenna's startling thick plaques of white scaly skin and flipped-out eyelids and mouth, she saw a little superhero. So when Robyn contacted me with her idea to make a superhero cape for Brenna, I thought back to when Brenna was just three days old and already a superhero in the eyes of our family, and I was excited to share with others about the super powers that Brenna has displayed in her 15 months of life."
How does Rosenberger find the kids who need her handiwork? It’s easy, she said; they find her. Social media and Facebook have  allowed Tiny Superheroes to share incredible stories.
“There’s Blessed by Brenna, A Very Special Case, Casen’s Crusade, Mabel’s Able, Ireland’s Journey," said Rosenberger, listing the various pages she's seen dedicated to sick kids. "I’d been on Facebook for seven years now and had never stumbled upon pages like these. And now they consume my news feed!”
Once the child is comfortable in the new cape, his or her pictures and story are featured on Robyn’s blog. She hopes it gives them a voice and their condition a face.
Many of these kids' pages have 10,000 or more "likes" on Facebook, and for most families, social networking is a big source of advocacy and support.
Jacqueline Durham, mom of "Super Anthony," says his cape has increased awareness of how hard he and kids like him fight every day. Anthony, 1, has developmental delays, a heart defect and seizures. "Anthony will always be my superhero!" Durham said. His next surgery is scheduled for tomorrow, April 18, and his mom said, "His cape will be close by, helping him fight through."

Isaac Crawley was born nine weeks early with a birth defect called esophageal atresia, or incomplete esophagus. "We started calling Isaac 'Superman' before he was born, because we knew he would need the strength of Superman very early in his life," said Kimberly Gould Crawley, mom of "Super Isaac," 4, in an email.
Isaac needed a tracheotomy because his vocal chords were paralyzed from several early surgeries. He spent 11 out of his first 13 months in intensive care. He was kept paralyzed and sedated while an esophagus was grown inside his body. He has undergone 21 major surgeries in four years, and hospital stays are a regular occurrence, said his mom. "He never gives up; he never complains," Gould Crawley said. "His smile can light up a room."
Gould Crawley, who lives in Ashburn, Va., was "thrilled" when Rosenberger contacted her. "How amazing is it that someone else sees Isaac for the superhero he is?"
100 more caped crusaders are in line to be featured on Rosenberger’s blog. When she’s not profiling these superhumans-to-be, she’s stitching away for future heroes. Response has been so big the mom-on-a-mission has enlisted sidekicks: girlfriends who find fun in sewing around the dinner table.
“Our lives are full," said Rosenberger. "Full of fabric, full of typing, full of story-reading, and full of so much love.”

And who knows--maybe this story will inspire others to do the same, to help bring some happiness to a young child.   Maybe some day the young child helped...will be yours.

5 WAYS TO INCREASE YOUR PATIENCE
Because hey, it is, after all, a virtue; and really all of us in the Moebius community need it.  Think about it:  all of us parents need it, in order to deal fairly with our children.  Parents and other family members of Moebius children need it--they need to have patience to understand their child's struggles, which are different from their own.  Persons with Moebius Syndrome need it--to deal with the stares, the strange looks, the obstacles that life has thrown at us.  So read on:

"Saint Augustine is thought to have claimed that patience is the companion of wisdom. Increase your store of both virtues by following this advice from a truck driver, a world traveler and others who know a thing or two about serenity-threatening situations.

Stop imagining the ideal
I often grow impatient when I want to be in control of a situation. To avoid getting antsy when I am writing and can't find specific words for my thoughts, I try to practice self-compassion. I tell myself that I'm not going to quit even if I become frustrated. I'll say out loud, "You're not perfect, but that's OK. Writing can be a messy process, and it's not ideal, but you can handle it."

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Talking to yourself may feel awkward and goofy, but it quells that feeling of impatience. And it certainly beats foraging for carbs, which I'm also apt to do when I'm agitated and have writer's block. -- Brené Brown

Brown is a research professor at the University of Houston Graduate College of Social Work and the author of the best-selling book "Daring Greatly." She has given one of the top 10 most-viewed talks on TED.com.

Experience different cultures
When you travel the world, you find out that many cultures aren't as punctual and perfectionistic as ours, and encountering those perspectives can mellow you. To work on your patience closer to home, try visiting an area populated by people of a different culture (such as a city's Chinatown) or take part in a festival held by an immigrant community.

I recently visited a Vietnamese farmers' market in New Orleans. I was annoyed that it was open only between 6 a.m. and 8 a.m. and I wanted to know why. The answer? I learned that often in cultures dependent on fishing, much of the work is done before daybreak. It was good to remind myself that simply because people do something differently doesn't mean that they're wrong. -- Seth Kugel

Kugel writes the Frugal Traveler column for The New York Times. He lives in New York City and São Paulo, Brazil..

Find a distraction
Being out on the road for weeks on end can certainly test your patience. My wife and I -- we drive as a team -- have to deal with other drivers and the annoyances of traffic jams, and it's natural to be anxious in these moments. We overcome that feeling by giving each other something else to think about.

For example, my wife tells jokes and catches me up on the latest Facebook posts from friends. Or I'll talk to my dogs (they also travel with us), since they provide emotional support without offering any opinions. Those quick moments of distraction recharge me, and I can again focus on the road without being irritated. -- Wade Briggs

Briggs, based in Boise, Idaho, is a commercial truck driver for Mayflower, a nationwide full-service moving company. He has been driving a truck for 18 years.

Chew your food slowly
People who consume food more slowly -- and ignore those "I'm hungry" urges -- eat less overall than those who devour their meals. Research has found that impatient people are more likely to be overweight, possibly because of their inability to delay gratification at the dinner table.

This practice can help you in other areas of life as well: By eating slowly, you can train yourself to be less impulsive and more patient in general. -- Charles Courtemanche

Courtemanche is an assistant professor of economics at Georgia State University in Atlanta. He has studied the relationship between obesity and patience.

Laugh at yourself
I'm a newspaper columnist and my husband is a politician, so both of us must be willing to converse with strangers when we're eating out or shopping for groceries. In the rare moments when people are obnoxious (like the time a woman told me that I needed to get Botox), I can get impatient. But instead of being rude to the person, I formulate an internal joke, usually at my own expense.

Knowing that I can laugh with a friend later on about, say, my deep wrinkles, calms any irritation. -- Connie Schultz

"Hard work spotlights the character of people:  some turn up their sleeves, some turn up their noses, and some don't turn up at all."--Sam Ewing, former pro baseball player 

AUTISM:  WHERE DO WE STAND?  WHAT DO WE KNOW?
It's important to look at this, given that autism is sometimes--though by no means always--associated with Moebius Syndrome.  So here are some conclusions from a piece on CNN--though certainly this is not the final word on the subject:

"When he turned 5 in October, Spike Robinson celebrated with his parents, three siblings, and a pink cake decorated with M&M's and lollipops.

It was your standard birthday bash -- except when it was time to sing.

"Spike asked us to do it very slowly, and in a whisper," recounts his mom, Shavon Brown-Robinson, who lives in Dania, Florida. "And then he didn't want us to cut the cake. He didn't want it ruined."

He finally relented -- and then burst into tears. "But he got over it and had a big slice," says Brown-Robinson proudly.

For most kids, a birthday party is a milestone; for Spike, it was a miracle. Just a couple years before, he hated celebrations. "Whenever there was singing or clapping, he'd start screaming," says Brown-Robinson.

Autism: More common than we thought?

Should insurance pay for autism therapy?

Autism: More common than we thought?

Boy given pot to manage autism

By the time Spike was 3, he was struggling to make conversation and walking on his toes. Brown-Robinson made an appointment for him to be evaluated at the Miami Children's Hospital Dan Marino Center.

Spike was indeed diagnosed with autism, also known as autism spectrum disorder, which ranges from mild social awkwardness to sensory problems (trouble dealing with certain sounds or textures) to an inability to talk or take care of oneself at all.

"I was so scared for that diagnosis," Brown-Robinson confesses, "but the moment we got it, the doors started flying open."

This story could not have been written when Spike was born. In the past five years, experts' thinking on autism has changed, myths have been busted, breakthroughs have been made, awareness has skyrocketed, and children are making the sort of rapid, meaningful progress that previously would have been unimaginable.

In a couple of years, we will learn something new that changes everything all over again. But what we know right now could change a child's life.

Autism is being called an "epidemic." Verdict: True

The "A" word is enough to rattle any parent: Nearly two-thirds of young moms and dads are concerned their child will be diagnosed with ASD, according to a recent survey by the Florida Institute of Technology.

It's no wonder, given the runaway rates. Whereas 1 in 150 kids was diagnosed with some form of autism five years ago, 1 in 50 kids is on the spectrum today.

These rising rates inspired Bob Wright, co-founder of Autism Speaks, to say, "We have an epidemic on our hands.... It is imperative that the U.S. government steps up its commitment to helping people living with autism today." Last November, the first congressional hearing on autism in 10 years was held to determine what the federal response should be. (It didn't exactly make front-page news: It aired on CSPAN-3.)

Autism only begins after birth. Verdict: False

Fifty years ago, autistic behavior was blamed on "refrigerator moms" who were too unfeeling to teach their children social skills. "Now we know there's a host of genetic and environmental factors that are likely involved," says Dr. Susan Hyman, professor of pediatrics at the University of Rochester Medical Center and chair of the American Academy of Pediatrics subcommittee on autism.

One possible contributor to autism's rise is that people are having babies later. The chance for gene glitches increases as parents -- especially dads -- age, explains Irva Hertz-Picciotto, an environmental epidemiologist at the MIND Institute at the University of California, Davis.

But delayed childbearing explains only a very small fraction of the rise in autism rates. Environmental factors may turn many autism genes "on" or "off," says Hyman.

"The best studies we have now point to things that babies are exposed to in the womb, when the brain is forming," says Hertz-Picciotto. Living in areas with high levels of air pollution (such as near a freeway), having low levels of folic acid, being overweight or diabetic, and having a high fever during pregnancy all seem to up a woman's risk of having a child with autism.

Babies can display signs of autism starting at around 6 months. Verdict: True

Autism is notoriously tricky to spot in infants, mainly because symptoms can mimic other developmental delays. But researchers have come up with some reliable red flags.

Between 6 and 12 months, babies who go on to have autism are less likely to smile and vocalize back and forth with parents. "They aren't tuned in to people, but things," says Dr. Fred Volkmar, director of the Child Study Center at Yale University.

Certain motor-skill delays can be a tip-off even earlier. "We found that when 6-month-olds were laid on their backs and pulled up to a sitting position, nine of 1- who went on to have autism let their heads droop behind their shoulders," says Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

Not all -- or even most -- babies who are stingy with smiles or have poor neck strength will go on to have autism. However, parents should note this possible sign of delay and mention it to their pediatrician so he can be more aware of other warning signs later.

If your child shows signs at around 18 months, he should be evaluated. Verdict: True

Autism isn't usually formally diagnosed until around 18 months, when it's clearer what worrisome behavior persists. A lack of words or communicative gestures (like pointing), and repetitive behaviors such as sorting objects are red flags at this stage. These are things your child's doctor should ask about at the 18-month checkup, when the AAP recommends pediatricians screen all kids for autism.

"Once a child screens positive, he then needs to see a specialist for an evaluation," says Dr. Geraldine Dawson, professor of psychiatry at the University of North Carolina and the chief science officer for Autism Speaks.

"The earlier that delays are identified, the sooner you can help your child," says Landa. Starting at 16 months, you can fill out the M-CHAT, a free, AAP-approved screening tool. Make an appointment with your pediatrician if you're concerned over the results.

Therapy can't "rewire" the autistic brain. Verdict: False

Experts like Dawson and Landa think age 1 to 2 is prime time to start autism treatments. "The younger the brain is, the more changeable it is," says Landa. In her clinics with toddlers, Landa teaches parents to imitate the way their children play, which may help build communication circuits in the brain.

Karin Hill credits play-partner sessions for helping her daughter Natalie, who was flagged as high-risk for ASD at age 1. "All Natalie wanted to do was tap the window. I thought, 'How is this going to work?' But I started tapping the window, too," says Hill, who lives in West Chester, Pennsylvania. "All of a sudden, Natalie looked in my eyes and smiled. I felt like I could cry."

Following Spike's diagnosis, Brown-Robinson turned her fear into action. She scouted out local schools and autism services.

Through intensive one-on-one exchanges with teachers and special tools like picture cards, Spike started learning how to speak up, rather than act out, when he was uncomfortable. All of which led to the first happy birthday of his 5-year-old existence."

"Stand up to your obstacles and do something about them. You will find that they haven’t half the strength you think they have." -Norman Vincent Peale (1898-1993)

INSPIRATIONAL STORY OF THE DAY
Everyone, meet Penny Loker.  She has a facial difference (we with Moebius Syndrome know something about that, too).  And she has some good things to say.  Indeed, I imagine many of us can identify with some of the experiences she has had and her reactions to them.   But on the most part, she hasn't let it get her down.  Why not?  This is from CNN--read on:

"Editor's note: We first met Penny when she wrote to us about a CNN photo gallery showcasing disfigured children and stillborn babies affected by Agent Orange in Vietnam. Penny spoke of the anger and sadness she felt over seeing CNN's "viewer discretion" warning on the gallery. She was born with a disease that left part of her own face malformed and felt compelled to reach out to us about the children who simply look different. "How can I not speak up about this?" she asked. "If not me, who will speak on behalf of these children?" We invited her to educate us all by sharing her story and allowing us to see the world through her eyes.

(CNN) -- As a little girl, she never got a valentine at school parties.

As a teenager, she never had a best friend, a boyfriend or a date.

As a woman, she's never had a relationship. She's never been kissed.

Her dream to one day become a wife and mother is fading as she grapples with the reality that it may never happen.

Penny Loker, 31, was born with hemifacial microsomia and Goldenhar Syndrome, two birth defects that left her with a disfigured face. Hemifacial microsomia causes a malformation of the ear and/or the structure of the lower jaw. Goldenhar Syndrome is a congenital condition that produces abnormalities of the head and the bones of the spinal column. It usually affects the appearance of eyes, ears, facial bones and the mouth.

Both conditions are complex, as are their names. But for a little girl facing a big world, the names were simple: Monster. Ugly. Freak.

Loker was raised in Waterloo, Ontario, Canada, in a home where love and acceptance were given freely.

Her father died soon after Loker's first birthday. Her mother, a strong, loving woman, readily took on the challenge of raising Loker and her sisters. That included arranging for multiple surgeries at hospitals far from home.

Loker's recoveries were lengthy and painful, recalls older sister Crystal Loker. "But even then Penny had a positive attitude. She was a trouper who kept her smile and didn't complain."

'Impaired Perceptions': Photographer rejects first impressions

At home, Loker's looks were not an issue and she was treated the same as her sisters. She knew she looked a bit different, and she knew it caused her to be in the hospital a lot, but she had a child's innocence and accepted it as normal.

When it was time to start school, she discovered how different she actually was. She spent a lonely childhood excluded from nearly everything. She had no friends. She accepted the name-calling as part of her life and seemed to understand that crying or fighting back only made it worse. So she quietly endured it.

She remembers that pain and humiliation well. "As an adult, it's hard to stand by silently when you know what these kids are going through," Loker says. "But it's equally difficult to speak out when you don't feel empowered to do so."

As she got older, the name-calling was more often behind her back than to her face. By the time she reached high school, she had learned there would be no friends, parties or dates for a girl who looked like a freak.

"It hurt, but there was nothing I could do to change it," she says.

While day-to-day encounters with strangers brought the same hurtful stares and comments, Loker was used to it. Then came a day with such cruelty it remains a vivid memory.

"For graduation my sister gave me a gift certificate for a manicure and pedicure. I'd never had one before, and it was a wonderful experience. I left the spa feeling truly pretty for the first time in my adult life."

But less than a block from the salon, she encountered a carload of boys who slowed to look at her and began pointing and calling her names.

Distraught, she walked as quickly as she could to get away from them, thinking all the while that she was not beautiful after all.

"The pretty nails made no difference at all. Shamed and humiliated, I realized I was still the same girl that everyone made fun of," she recalls. "I remember that day as one of the worst."

Talking to someone with a chronic illness

But time can ease all wounds, and her determined spirit taught her to find the good around her.

She has a core group of girlfriends and relatives who cherish her as she is. She speaks proudly of being able to provide for herself, thanks to her job at Rogers Communications, where she spends her days handling customer requests. The company was recognized this year as a diversity leader corporation, a recognition that only adds to Loker's pride.

There are many adventures in life that she is hesitant to embrace, even though she is physically able. She prefers not to shop alone. She has never been on a true vacation, saying the thought of one is scary.

Yet it's a feat she is determined to accomplish. She is saving now for a trip to California to visit either BlizzCon or Comic-con.

"I'm kind of a geek and play the online MMO World of Warcraft with my sister and her husband, and we always talk about how cool it would be to go there," she says. "People dress up so I would feel 'normal', not out of place."

She's quick to point out she has no interest in visiting a theme park geared toward children, where she'd likely be subjected to stares as parents attempt to answer questions about her.

She wishes she could open the dialogue about individuals with malformations by educating people, especially children, whose natural curiosity can eventually become cruelty if left unaddressed.

"Educating them early on would help them learn to be more tolerant of others who are different. The ability to love, share, bring happiness and help others is the real beauty of a person," she says.

"The exterior doesn't necessarily reflect the beauty that often lives inside. And when people fail to remember that, they can miss out on the love and friendship of a truly special person."

Crystal Loker agrees. "Penny is truly beautiful. She's always seeing the best in others and never has an unkind word for anyone. In Penny's world, others always come first. She's full of laughter and smiles. When you spend a day with her, you go home feeling good about yourself."

Loker welcomes the opportunity to teach all of us to see beyond the surface. But until then, she continues to hope for good days in her own life, which for her means days when she is ignored.

"When I go out to dinner with my friends and no one stares at me or asks to be moved to a table further away from me, that's a good day," she says.

In spite of it all, Loker is quick to point out her many blessings: Being able to share a home with her family, having a job she loves, having good friends and a good health care system to help with the cost of a lifetime of surgeries.

Her only regret?

"I have so much love to give and I would love to share that with a family of my own. I understand it will probably never happen, and I'm learning to accept it. But I am sad about it," she says. "It feels like the one great loss in my life."

"Press on. Obstacles are seldom the same size tomorrow as they are today." -Robert H. Schuller
"The obstacle is the path." -Zen Saying

BRAIN TALK DEPT
A new study says pain is all in your head--and now we can see it:

"Researchers say they’ve figured out an objective way to measure pain -- by imaging the brain’s response, in real time.
They used a type of brain scanner called functional magnetic resonance imaging, or fMRI, to take pictures of people’s responses to pain. And they documented that a morphine-based painkiller reduces both the pain that people reported they felt, and the pain that registered on the brain scan.
The test will be useful not as a pain lie detector test, but as a way to objectively measure pain, treatments for pain, pain in patients who can’t talk or who can’t talk well, and pain in people who are unconscious, the researchers report in the New England Journal of Medicine.
They worked out an algorithm -- a kind of computer equation -- that could directly correlate the brain images with the degree of pain that people felt.
“We can make an accurate prediction about how much pain a person is feeling,” says Tor Dessart Wager of the University of Colorado, who helped lead the four studies detailed on Wednesday.
Other pain experts say the findings look like they will hold up. "I think it will help transform pain medicine," said Dr. David Borsook of Harvard Children's Hospital, an expert on pain imaging.
Wager's team is not the first to try using fMRI to measure pain. Sean Mackey at Stanford University published a similar report in 2011 in the Public Library of Science journal PloS ONE. Irene Tracey, of Britain’s Oxford University, is among several other groups trying to finesse the technique.
Wager’s team, working with colleagues at New York University, Johns Hopkins University and the University of Michigan, got 114 volunteers to agree to have hot plates applied to their arms while undergoing fMRI.
Temperatures went from a pleasantly warm 39 degrees C (102 degrees Fahrenheit) to 49 degrees (120 F).
“We can tell which one was more painful for you with 90- to 100-percent accuracy,” Wager says. The method was so sensitive, he says, that the team, was able to tell, by looking at the fMRI alone, if a volunteer was being touched with a plate at 48 degrees or 49 degrees.
The tests also confirmed that people do perceive pain differently, Wager says. “Let’s say I give you a 48-degrees stimulus and you go ‘This is okay; I can handle it’ and I might say ‘Oh, this really hurts’,” he said. “My brain is going to respond more strongly than yours. We are using this to track what people say they feel.”
It’s an independent way to measure actual pain. “You could be saying you don’t feel so much pain just because you are stoic,” Wager said.
But, Wager said, the scans should not be used to try to prove people are faking pain. He stresses they tested only healthy people who were not feeling pain because of disease or injury. Pain caused by wounds or illness might show up differently, he says. And some types of pain, like the pain caused by fibromyalgia, might affect different brain systems, he says.
“There are different things that people call pain and multiple treatments that influence pain and we think they work through different systems,” Wager says.
“There is really still a mystery about where in all these circuits the experience actually emerges,” he said. “The brain is complicated place. It’s easy to find things that look true but aren’t true.”
Earlier, the team had reported that social pain, such as rejection, causes the brain to activate in much the same way as physical pain. They tested this idea using the fMRI. It totally failed.
“One of the experiments is one in which everybody in the study has been romantically rejected,” Wager said. They brought in pictures of their exes, and confirmed that they were feeling emotional pain when looking at them. But the pain did not show up on the fMRI in the same patterns as physical pain. “It wasn’t fooled at all,” Wager said.
And they were also able to show how pain medications worked. In one of the experiments, volunteers got a morphine-based drug while they were being given near-burns. The brain’s indication of pain changed in direct correlation with the concentration of drug in the brain, they reported.
But then something interesting happened. In one round of experiments, they hooked the volunteers up to a drip and told them they were not getting the pain drug yet. But they were. “We fooled them,” Wager says.
It’s a well-known effect of pain treatment -- when people know they are getting a pain drug, they report less pain. And the brain scan confirmed it. When people did not believe they were getting the pain medication, they reported that the burning hurt more than the brain scan indicated it hurt. In fact, their brain response was the same, whether they knew they were getting the painkillers or not.
Next up, Wager says it will be important to test different types of pain -- pinpricks or cold for example -- and to test people who are experiencing pain caused by disease or injuries."

"It is not ease but effort, not facility but difficult, that makes man. There is perhaps no station in life in which difficulties do not have to be encountered and overcome before any decided means of success can be achieved." -Samuel Smiles (1812-1904)

MORE FROM THE I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT
25 simple ways towards a healthier you:

"1. Grab your toes. Now pull. "This boosts circulation after your feet have been cramped in shoes all day," says Michele Summers Colon, a podiatrist in El Monte, California. "Without proper circulation, the muscles and nerves in our toes don't work properly. And that can cause pain in your knees, hips, and back."

2. Wash the linens. Dust mites, a major allergy trigger, love to hang out in your bed. Zap 'em by laundering sheets and pillowcases every week in hot water. Also smart: Use mattress and duvet covers designed to keep mites out.

3. Flying? Turn on the air vent above your seat. "I fly a couple of times a week," says Dr. Travis Stork, an emergency medicine physician and co-host of "The Doctors."

"Part of the way I stay healthy is by being very conscientious about all of the germs that are on planes. I turn on the air vent and angle it so it blows air down in front of my face -- that's filtered air and it creates a little bit of a barrier to keep the germs going around the cabin from getting into my nose or mouth."

4. Give this a shot. Get a yearly flu vaccine? Great. Now add a TDaP booster to your arsenal. TDaP stands for tetanus, diphtheria, and pertussis -- and that last disease, also known as whooping cough, is a particularly dangerous respiratory illness. In fact, cases of pertussis in the U.S. have risen about 137% since 2000.

"For most adults, that means a nasty cough; in children, it can be worse," says Dr. Ana Pantoja, staff physician for AltaMed in Boyle Heights, California. "So if you have kids or are around kids, it's essential to get vaccinated."

Even if you got the shot as a child, its effectiveness can wear off, so you still need one booster as a grown-up. (You'll also need a tetanus booster every 10 years.)

5. Drop your panties. Going commando once in a while (say, overnight) couldn't hurt, especially if you're prone to urinary tract infections.

"Wearing no undergarments -- or just cotton ones -- allows the external genitals to dry and reduces bacteria growth that could otherwise make its way into your urethra and cause a bladder infection," says Dr. Sherry Thomas, an OB-GYN and surgeon at St. John's Regional Medical Center in Oxnard, California.

6. Keep this info handy. Put a card in your wallet that lists any allergies you have and medications you're taking, in case you end up in the ER and are unable to speak for yourself.

Says Dr. John M. Kennedy, co-author of "The 15-Minute Heart Cure," "It could just save your life."

7. Crank down the volume. MP3 players can create sound up to 120 decibels -- loud enough to cause hearing loss over time.

"Follow the 60/60 rule: Keep volume coming through your headphones to no more than 60% of the max, for no more than 60 minutes a day," says James Foy, an osteopathic physician in Vallejo, California.

You already know it's important to start your day off right -- now it's time to kick it up a notch nutritionally with these easy ideas from Jackie Newgent, author of "1,000 Low-Calorie Recipes." Just add...

8. Flax. Sprinkle one tablespoon ground flaxseed in your bowl of oatmeal for brain-boosting omega-3 fats and two extra grams of fiber.

9. Pistachios. Spread toast with chocolate nut spread; add chopped pistachios for cholesterol-lowering phytosterols.

10. Berries. Top pancakes or waffles with ½ cup of mashed raspberries to get more than 20 percent of your daily vitamin C needs.

11. Turmeric. Toss a pinch of ground turmeric into beaten eggs to add earthiness and cancer-fighting antioxidants to a veggie omelet.

12. Hummus. Schmear half a toasted whole-grain bagel with 2 TBSP hummus for a creamy topping packed with fiber and filling protein.

13. Nuke the dish sponge. "This is the germiest thing in your house," says germ guru Charles Gerba, a microbiologist at the University of Arizona in Tucson. "About 15% of sponges contain bacteria that can make you ill."

So toss them in the dishwasher once a week or microwave them damp on high for 30 seconds.

14. Check yourself out. "Do a full-body skin check once a month in a well-lit room," advises Dr. Joshua Zeichner, director of cosmetic and clinical research at Mount Sinai Medical Center in New York. "Grab a hand mirror if you have one. Ask a family member to check out your back if you can't see it. Look for new moles or old ones that have changed or grown (then have a dermatologist take a look).

"I also recommend a total-body check with a derm yearly -- twice a year if you have a personal or family history of funny moles. Early detection is key in treating skin cancer" -- the most common cancer in women.

15. Munch on carrots. The humble carrot never got much attention, but it's now a nutritionist favorite, thanks to its high vitamin A content -- just one half cup has almost double the amount you need for healthy eyes. They're hot with chefs, too, making it easier to get your good-vision fix.

16. Wear an activity tracker. Whether it's a Fitbit, a Nike FuelBand, or any old pedometer, studies show that people who wear a device that tracks the number of steps they've taken each day get moving more than those who don't.

17. Take a ticker test. You may not think about your cholesterol, but you should: Having high numbers is a major heart-disease risk factor that even slim women can have.

Thanks to the Affordable Care Act, you may be able to score a screening without paying one cent for it if you have a family history or other risk factors, according to Kathleen Sebelius, secretary of the U.S. Department of Health and Human Services.

For a list of more preventive screenings that now have no co-pay, go to Healthcare.gov.

18. Fight daylight savings blahs. When we "spring forward," the lost hour can have a bigger effect on our bodies than we might think.

"You might feel jetlagged, and it can take two to five days to adjust," says Dr. Meir Kryger, professor of medicine at Yale University. His fix: "Get some sunlight as soon as possible" -- by raising window shades or making a coffee run -- "to help re-synchronize your body clock. Luckily, the switch-over happens on a Sunday morning, so many of us don't have to go to work that first day!"

19. Get comfy. "At hotels, I keep lighting soft and bring lounging clothes and my Dream Sack, a thin, silk sleeping bag. On planes, I close the shades and wear an eye mask and noise-cancelling headphones or earplugs." -- Tracy Cristoph, flight attendant

20. Banish nerves. "When my mind starts racing in bed, I think about the next day's challenges. Then, I take long breaths, thinking, Breathe in, breathe out. It takes practice, but if you do it regularly, your body learns how to relax." -- Rebecca Soni, Olympic swimmer

21. Silence your phone! "I alerted friends and family to when I would be sleeping so I could minimize noisy calls and texts. Turning the phone off works, too!" -- Dr. Marni Hillinger, a medical resident in New York.

22. Do 25 jumping jacks. Move your body, no matter how briefly, to stop the stress response in its tracks and change the channel on your mood, says Lisa Oz, author of "US: Transforming Ourselves and the Relationships That Matter Most."

23. Press "play" for puppies. Pets are a proven stress-buster, but you knew that. Head to Wimp.com/littlepuppy stat to melt even the gnarliest of bad moods.

24. Make an instant hot cocoa. Research, including a study published in Appetite, shows that even a bit of chocolate can boost your mood almost immediately.

25. Go outside! "Fresh air is full of feel-good negative ions, which may boost oxygen flow to the brain," says Kathleen Hall, founder of the Stress Institute in Atlanta. "If you can, combine it with exercise, like a brisk walk -- activity boosts endorphins and energy."

I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT
Some health news:  how to use certain exercise moves to de-stress:

"Personal trainer Ulrick Bien-Aimé had been working with harried corporate executives for years when he noticed something interesting: Many of his clients complained of feeling both physical and emotional stress in their lower back. "Stiffness in the body was the number one issue I heard during workouts," says Bien-Aimé. "When we're anxious or stressed, many of us don't breathe or contract our abdominal muscles properly, and tension builds up." To help clients release trapped energy, he made these four moves mandatory (hold each pose for 15 seconds).
Start by lying on your back with your legs straight and your hands on your abdomen, about two inches below your navel. Inhale slowly through your nostrils and focus on pulling in your belly. Exhale gradually while pushing your abdomen toward your back.
Next, bring your knees to your chest while continuing to inhale and exhale. Remember not to hold your breath -- whenever you extend or exert energy, you should exhale.
Place your legs straight on the floor, then lift your right leg and bend it at the knee so your leg is at a 90-degree angle to the floor. Bring your right knee across your body until it touches the floor, making sure your shoulders remain flat. With your left hand, push down your knee to increase the stretch. Mirror this exercise on your left side.
Finally, lie flat on your back, and pull in your feet until the soles are touching to create a diamond shape on the ground. Spread your knees apart as far as possible and apply pressure with your hands. Pay attention to the parts of your body that begin to feel release -- those are likely the places where you tend to trap tension."

"Live simply so that others may simply live."--Mother Theresa

AVOIDANCE CAN HAVE AN UPSIDE
There was a fascinating piece in the Opinion section of today's NY Times.  A scientist reports that, based on the scientific research he has done, sometimes for those suffering from anxiety about certain things, "avoidance" can be a good thing.  Here's an excerpt that gets at his thesis:

"As we’ve seen, people with social anxiety often cope with their problem by avoiding social situations altogether.  This is not practical or beneficial.  But neither is forcing oneself to show up at parties and just try to ride out the anxiety.  A more effective treatment approach might be to combine anxiety-producing exposure with strategies that allow one to gain control over the anxiety trigger cues.
Michael Rogan, who was a researcher in my lab when the active coping work was first being done, currently treats people with social anxiety. He suggests to his clients with social anxiety that they should, when at a party, identify strategies for temporary escape and avoidance (go into the bathroom, step outside to make a call), and also use previously learned relaxation techniques (controlled breathing, imagery, mindfulness), to “chill out.” In this way, as in the rat studies, behaviors that succeed in reducing anxiety are reinforced, and each subsequent social event is a bit more tolerable.
Once the person has learned to take action rather than simply react in the presence of anxiety-provoking cues, the cues become irrelevant, as they did for the rats.  Rogan says that people who learn to control anxiety triggers in this way, like our rats, do much better than those who don’t."

You can read the entire article here. 

They call this "proactive avoidance."  It makes sense, and really I think many of us with Moebius Syndrome do this every day.  In this sense:  yes, of course, certain situations can be very anxiety-inducing.  We look a little different.  We sound different.  So going to parties where we don't know a soul, or just meeting new people, can be stressful.

But of course the answer isn't to hide in your house for the rest of your life.  Yet you can still, proactively, avoid certain negative situations.  For example:  driving can be stressful.  Yet we need to be able to drive in order to function well in society.  Yet it can be hard to see everything; a specific example--it can be a bit hard to switch lanes (let's say).  So--let's say you're on a road you know, and you KNOW you're going to have to eventually turn right in order to get to your destination.  So, simple--get in the right lane as early as you can, even if it's moving a tad slower.  That way, you avoid potential problems.

Or:  say you have to go out to dinner with people who are important to you.  Of course, that can be a challenge--it's hard for us to close our mouths when we chew, we worry about appearing messy, etc.  Easy:  just be sure and order something that you know you can eat easily and without much mess.  (Maybe you won't want to order a big plate of spaghetti!)  Eat slowly; use your napkin a lot; etc.  Avoid trouble.

The key is, we're not hiding, but we're taking steps on our own (being "proactive") in order to avoid trouble.  It works.  We do it all the time!

"There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance. We need to learn to love ourselves first, in all our glory and our imperfections. If we cannot love ourselves, we cannot fully open to our ability to love others or our potential to create. Evolution and all hopes for a better world rest in the fearlessness and open-hearted vision of people who embrace life.” --John Lennon

Today, two items...

THE POPE AND A BOY WITH SPECIAL NEEDS
The new pope singles out a very special boy:
"As Pope Francis made his way through thousands gathered in St. Peter’s Square on Easter Sunday, he plucked a boy with cerebral palsy from the crowd, creating an image that’s gone viral.
Dominic Gondreau, 8, who is from Rhode Island, was spotted by the pope while he traversed the square in his popemobile following mass on Sunday. The boy was lifted up to embrace the pontiff, who gave him a kiss.
Since then, images of the special moment between the two have been featured in The Wall Street Journal, on NBC Nightly News and CNN, among others.
Gondreau’s father, Paul Gondreau, wrote in a blog post that his family and all those around them were “moved to tears” by the interaction.
“Pope Francis bestowed an extraordinary Easter blessing upon my family when he performed such an act in embracing my son, Dominic, who has cerebral palsy,” wrote Paul Gondreau, a faculty member at Providence College in Rhode Island who is spending the semester in Rome with his family. “His Easter embrace of my son stands out as a compelling witness to the kind of ‘poverty’ that he urges us to adopt.”

AND MTV TACKLES AUTISM
The network has a new show:
"MTV is putting a spotlight on the ups and downs facing those with disabilities as they transition to adulthood, with a documentary-style series following a 21-year-old with autism.

Chad DenDanto, left, who has autism, is one of three young adults whose lives are documented by filmmaker Andrew Jenks on MTV’s “World of Jenks.” (MTV)

Chad DenDanto, now 23, is one of three young adults featured on the network’s “World of Jenks” premiering Monday at 11 p.m. ET. The show, beginning its second season, features host and documentarian Andrew Jenks living with each subject for a year and filming their journeys.
In addition to DenDanto, Jenks also follows Kaylin, a fashion designer who has battled cancer, and D-Real, a street dancer who overcame his gang lifestyle and hopes to inspire others.
DenDanto — who is diagnosed with pervasive developmental disorder, which is on the autism spectrum, and attention deficit hyperactivity disorder — first appeared on the show in 2010 as the subject of a half-hour episode. But now Jenks takes a more in-depth look, moving into DenDanto’s Port Jervis, N.Y. home and tagging along for what’s described as the “biggest year of his life.”
“We realized (at MTV) that we had an opportunity to humanize and destigmatize what it’s like to have autism,” the show’s host, Jenks, 26, of New York, said. “One in 88 American children have autism now. It’s something prevalent that could use more mainstream media attention.”
DenDanto’s television debut nearly three years ago showcased not only the daily issues he faces having autism — including hypersensitivity to smells and noises, such as his classroom bell or cars honking, or severe anxiety over deviation from his schedule — but also his sense of humor and his sensitivity to being treated differently.
This season, viewers get to know DenDanto as he graduates from high school, tries to find a job and begins dating.
“During the first episode you’re thinking, ‘OK, one of the guys on the show has autism. That’s what his story is about.’ After the last episode you realize Chad is really funny, he has a great relationship with his girlfriend, he loves food and Italian culture and fart jokes, and you just know him as Chad. Autism no longer defines him,” Jenks said."

And it's in these ways that awareness grows, step by step...

A CHILD AND A TEASING TEACHER
Now the column below actually doesn't have to do directly with Moebius Syndrome.  But I thought many of you might get something out of it.  It's actually an advice column from the Washington Post on parenting.  And the question of the day came from a parent who was concerned because her son eventually identified for her occasions where his kindergarten teacher kind of teased, but not in such a nice way, other students in the class.  The boy became angry, and stood up for his friends.  Obviously this brings up lots of issues, and I thought the column went about its advice function very well.  It disagrees with the teacher's methods, but points toward a very positive, reasonable way forward.

And anyway, once you have read the below, I think you'll be able to see that such "teasing" could--but hopefully won't--get directed towards Moebius children.  After all, teachers might not understand, or simply might forget, why it is that children with Moebius Syndrome have a hard time chewing with their mouth closed; or why they, given low muscle tone or problems with their hands, have a harder time mastering handwriting.  Teachers who have never encountered Moebius Syndrome might not know how to handle things like this.  They might choose the wrong methods.  The piece below suggests that when this type of thing happens, the solution is intensive work and positive education, really.  Anyway, read the below incident and see what you think:

"Q.Nursery school was a happy experience for my son, but he is now in kindergarten at the same small school and things aren’t going so well. ¶
 The teacher says that he has unprovoked bursts of anger — a complaint that confounded us. Our son has never acted this way at home and he didn’t act like that when he was a nursery student either.

After much prodding, our son finally told us that he gets mad when his teacher picks on some kids more than others and when she jokes about the kids in his class in ways that aren’t so nice. When we asked him for an example, he said that his teacher saw a child picking his nose and she said, “Tommy picks his nose! Everyone do ‘the Tommy’!” and she pretended to pick her own nose. Although our son said that she was just trying to be funny, it makes him angry when she acts like that and then he “blows up like a blowfish.”
These reports have upset us a lot, but we don’t know what our next step should be. Of course, we assured our son that he was right to be bothered when the teacher played favorites and especially when she made fun of a classmate. But we can’t ask that he be moved to another classroom because the school has only one kindergarten, and we don’t want to complain because the teacher might start bullying our son. We decided not to put him into therapy, even though it might help him deal with his teacher’s behavior, but how should we proceed?

A.You must be so proud of your son both for his empathy and his maturity — and so very annoyed with his teacher.
It’s particularly important for you to tell the administrators what your son has told you because they have the right to know what’s going on and the children have the right to be defended, especially your son. Your support will give him the stuffing he needs to take on any bullies he’ll meet in life, whether the bully is a classmate, a teacher or even a boss.
Your son’s teacher deserves as much sympathy as you can spare however, particularly if she’s new at the game, because teaching is one of the most demanding, most important and most poorly paid professions in the country and one of the most poorly mentored, too. Colleges give their future teachers a wealth of abstract information, but once they’re certified, these newbies are often left to sink or swim on their own. Unfortunately, this causes many young teachers to quit before they’ve really learned their trade.
If your son’s teacher is a new one, ask the administrators to observe her more often; to guide her through the thickets of child development and to teach her that encouragement, not derision, brings out the best in children whether they are at school or at home. This teacher also needs to know that she should talk with the children, not at them; she should explain what she is doing and why, and she should also ask them what they think about absolutely anything, because these are respectful approaches. The respect a child gets — or doesn’t get — will decide what kind of person he will grow up to be.
She should also be taught to break every lesson into manageable steps; to introduce new ideas and new words as fast as the children have mastered the old ones and she should talk slowly, and then stay quiet, like Mr. Rogers, so they will remember what she has said, instead of moving quickly from one thought to the next, like the characters in Sesame Street. Above all, she should never, ever make fun of her students or turn any of them into teacher’s pets or teacher’s targets.
If the principal promises to help this teacher grow, and if she lives up to her promise, you’ll want your son to go back to this school next year and you’ll definitely want to give copies of “Everything a New Elementary School Teacher Really Needs to Know” by Otis Kriegel (Free Spirit, $16) to the teacher and leave another copy in the teacher’s lounge for her colleagues. This new book offers real-life solutions that can help experienced teachers almost as much as it can help new teachers.
If the principal says that she has no time to teach her teachers, however, you should look for a new school. A principal who won’t fix one problem probably won’t fix the next one. Your son deserves better than that."

"Our lives improve only when we take chances--and the first and the most difficult risk we can take is to be honest with ourselves."--Walter Anderson

GROWING UP AUTISTIC
I believe today is Autism Awareness Day; and therefore, there's no better time than to share this excellent story I found today.  Autism of course is sometimes--though by no means always--associated with the condition of Moebius Syndrome; and in general I think those who are autistic in any case share some of the same obstacles into which we with Moebius run.  But this young man has found many ways to cope.  Read on, and see if his story both helps--and inspires--you:

"Growing up as an autistic has never been easy.

At 5, I was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS, one of the five autism spectrum disorders. Those with PDD-NOS have difficulties in areas of social interaction and communication.

While I am high-functioning, my life has been full of enormous ups and downs. There were moments when I didn't think I was going to succeed. But I fortunately prevailed through many challenges, such as getting my driver's license, making friends, moving to a new home, starting college and writing a book.

Would I have met these goals by myself? No way. I did at times make the mistake of relying on my own understanding, but when I turned to other resources, including my parents, teachers and peers, I gained the wisdom I needed to accomplish the goals I was striving for.

One challenge I faced as a teenager was getting my driver's license. My parents always wondered whether I would learn to drive, but signed me up for a driving course at 15.

When I got behind the wheel to go on my first-ever drive, I was terrified. With each progressive step, I got more and more scared, but I practiced consistently with my mom, and gradually got better. Then, the time came to take the written portion of my driving test. My mom helped me study for the test, and twice in a row I failed. The third time, my mom arranged a special accommodation -- a pair of headphones so I could hear the questions being asked as well as read them.

Thanks to the headphones, I passed the test. The very next day, I passed the driving portion of the exam, and got my license, a few months after my 16th birthday.

That evening, I went off driving on my own for the first time with my new driver's license. It was one of the most exciting things I had ever experienced, and it felt so refreshing to be driving on my own. I loved knowing that, in spite of my autism, I could have the same responsibilities as other kids my age.

The most dominant challenge for me, as a child and even today, has been making and maintaining friendships.

I spent probably 90% of my childhood by myself because I never really cared much for people. I made various mistakes when trying to make friends, including wasting time hanging around people who either didn't care or just wanted to take advantage of my disability.

But as I got older, meeting many different types of students at school, I finally met people who do respect me and appreciate me. Although I'm still not super close to most of them, they have been the type of friends I needed; they help me by pointing out flaws that I am unaware of, and help me understand what friendship really is. This is a skill that I am still working on, but am making progress through the people I see every day, including my parents, friends and school counselors.

The main thing that helped me make friends that I could trust and enjoy was getting involved in clubs and organizations. In high school, I joined the school's drama department, which helped tremendously in getting to know people better and picking up on social cues.

In college, I became a volunteer for the junior high ministry at my church. I am a group leader for 12-year-old boys, and I help with ministry events. This has not only helped in social interactions with others, but also in responsibility and leadership. Because these activities helped me so much, my advice to parents is to help your child find some type of involvement, whether it's a school club/organization, a youth program at a church or volunteer work in the community.

The groups I joined fit in with my interests. I wouldn't suggest joining every group or activity out there, but it is worth the effort and will help your child to an extraordinary extent.

I was very fortunate to grow up in an excellent public school district with a great special education department and wonderful teachers and other staff. My parents were involved with the schools and took advantage of the resources offered. Through all my years growing up, the special services at school have made the biggest impact on my progress.

All autistic children don't have access to the best public school resources, but they can seek out support groups through local hospitals, clinics, autism centers or private counselors. The college I attend has a program specifically created for students with autism and Asperger's, which helps them learn their strengths and weaknesses and how to advocate for themselves. I have learned what my needs are and how to ask for help, even though at times I wanted to give up. I have always been given the help I needed when I asked.

My experiences growing up with autism have made me who I am. Because of the help I received through my schools, the activities I participated in and the support of true friends and family, I believe that many autistic individuals can realize their own dreams and goals, such as getting a college degree, living on their own, working in a fulfilling career, marrying and having children.

Right now I drive a car, use a credit card and have a 3.6 grade point average at my community college. I have been accepted at five four-year universities and am looking forward to a future of great possibilities for me as well as other autistic young adults.

While life will certainly continue to bring its challenges to me, I am confident that I can face those challenges and put strategies in place to help me persevere. My sincere hope for anyone with autism is that they find the help they need to give them the confidence to not just survive, but to thrive in life."

"Hope has two beautiful daughters, their names are Anger and Courage.  Anger at the way things are, and Courage  to see that they do not remain as they are."--Augustine of Hippo