MOEBIUS SYNDROME IN THE NEWS
Today, a recent, and very inspirational, story from the UK--look at how much money was raised to help young Moebius hero Phoebe Kenyon:
"A youngster with a rare condition inspired fundraising for a charity which helps children with brain injuries and life threatening illnesses.

Phoebe Kenyon, three, of Lostock Hall, near Preston, suffers from Moebius Syndrome, a rare neurological disorder which affects the cranial nerves and causes paralysis to the face.
Phoebe also has development delay and muscle problems which means she needs help learning life skills such as sitting, standing, walking, eating and communication.
Phoebe has been attending The Legacy Rainbow House, which helps children with disabilities, brain injuries and life limiting conditions, for just over a year and within a few months of starting there, she had learnt to crawl.
Phoebe’s family launched their appeal after a leap in demand for the charity’s specialist expertise meant it needed to raise additional funds to ensure it could sustain and develop its services to meet future need.
Each current visiting family to The Legacy Rainbow House was asked to raise £3,000 to help the charity’s fundraising team increase support in the communities where they are located.
However, Phoebe’s Appeal surpassed all expectations by raking in £13,500.
Phoebe’s mum Lyndsay Hornby said: “The services offered by The Legacy Rainbow House are just unique and exceptional.
“Rainbow House has been a lifeline to us as a family. The thought of Phoebe not having access to Rainbow House was a frightening one as I knew that her progress would be hampered without it.
“Not only have they helped Phoebe reach significant milestones, but they have also offered so much guidance and support to me over the past year.
“In particular, we would like to thank the members of the Preston South Rotary Club who kindly donated £1,500. In addition, local schools supported Phoebe’s Appeal with a generous donation including Lostock Hall Academy, where Phoebe’s sister Caitlin attends, and Lostock Hall Community Primary School who held a ‘Dress as Rainbows Day’ and raised a substantial amount. Phoebe is due to start in the reception class there in September.
“We also want to thank Ye Olde Original Withy Trees who raised over £1,200, Forbes Solicitors who showed massive support by holding a ‘dress down day’ throughout their North West offices and Playdor Nursery in Chorley who held a ‘dress as rainbows day.’
“Friends of the family, Lindsay Littlewood and Caroline Lund also organised a cocktail evening which raised £700 and Still Materials Handling Ltd held a charity football match and raised £675.
“We are overwhelmed by the generosity of people and are extremely grateful for their continued efforts and support.
“I want to thank everyone from the bottom of my heart who got involved in Phoebe’s appeal.”
Although Phoebe has reached her target, the family are continuing to raise funds to help other children at The Legacy Rainbow House, which is based in Mawdesley.
• To donate to Phoebe’s Appeal, visit www.justgiving.com/PhoebeKenyon"

“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
Reinhold Niebuhr (1892-1971)

TELEPHONE ISSUES
So I know yet another issue that arose during our recent conference was this one:  how can adults with Moeebius improve their skills in talking to strangers on the telephone?

Make no mistake, it can be a daunting (and nerve-wracking!) issue.  When calling a stranger, you're talking to someone new.  They don't know you.  They have never heard your voice; they have never heard your speech.  Will they be able to understand you?  I of course don't have to remind any of us how positively embarrassing it is to speak to someone on the phone and have them not be able to understand you.

Okay, so what can we do?  I mean, sometimes you just have to call people on the phone.  An e-mail won't do (you might need instant action on something; who knows how long it will take for someone to read your e-mail.)   Here's some advice off the top of my head.  1] First off, remember--speak slowly.  Your speech is different, most likely; and it will sound different on the phone.  Plus the person to whom you're talking isn't used to hearing your speech.  So anticipate that; go slow; sound things out.  Understand that you don't want to talk in this situation the same way you would speak to, say, a close friend or a family member.

2] Hey, let's face it, it sure helps in speaking if we can get the full lip closure and make that "m" or "b" sound, and make it real clearly.  So give yourself some help--for example, go ahead and use your thumb or finger and, when having to make the "m" sound, use your finger to push your lips closed.  It'll sound a lot better.  Yes, of course, doing that wouldn't look good if you speaking to a "live" person; but remember, on the phone, you aren't.  Nobody can see you.  So use whatever artificial help you need to make your speech sound better.

3] And, of course, speak loudly too.  Sometimes we're so shy, and speaking on the phone is something that makes us so uptight, that when we finally do get our call put through we speak too softly (something common from shy folks).  People for sure can't understand you if they can't hear you.  So speak up; don't be afraid.

4] And of course there are situations in which maybe you could speak to someone on the phone; but maybe you don't have to do so.  Maybe it's an issue that isn't time-sensitive.  Maybe it's an issue at work that is complicated, and needs some explanation (and again isn't time-sensitive).  So sure, in those cases, maybe an e-mail is best...giving you a chance to really explain yourself.  (And I've noticed--many people I know with Moebius are pretty good at writing; maybe it's because we know we have to be at times, in order to express ourselves).  So use that form of communication when you can.  But don't use it to avoid telephone calls that have to be made.

“Most obstacles melt away when we make up our minds to walk boldly through them.”
Orison Swett Marden (1850-1924)

MEDIA UPDATE:  CABLE NETWORK WILL EXAMINE DISABILITIES IN FILM
Exciting news from the Turner Classic Movie network:"
A month-long film series on cable this fall will focus on people with disabilities as portrayed by Hollywood.

Turner Classic Movies will air more than 20 films harkening from the 1920s to the 1980s during the month of October that include storylines about those with disabilities, the network said Tuesday.

Films included in the series will touch on everything from the experiences of those with intellectual disabilities to psychiatric disorders. Some like “An Affair to Remember,” which deals with paralysis, and Oscar-winner “Charly,” which focuses on a man with intellectual disability who is turned into a genius, are well-known classics while others featured are likely to be less familiar.

All of the movies will be offered with closed captioning and audio descriptions via secondary audio to ensure accessibility for viewers with sight or hearing impairments, officials said.

“From returning veterans learning to renegotiate both the assumptions and environments once taken for granted to the rise of independent living, Hollywood depictions of disability have alternately echoed and influenced life outside the movie theater,” said Lawrence Carter-Long of the National Council on Disability who curated the series for TCM. “When screened together, everything from ‘The Miracle Worker’ to ‘One Flew Over the Cuckoo’s Nest’ reveals another layer where what you think you know is only the beginning.”

Since 2006, TCM has dedicated one month each year to focus on a particular issue and how it’s been depicted in film. Previous series have looked at the experiences of people from various racial groups as well as the gay and lesbian community.

The series dubbed “The Projected Image: A History of Disability in Film” will air Tuesdays in October beginning Oct. 2 at 8 p.m. ET."


More awareness being built...always a good thing.


“Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain.”--Vivian Greene

DO WE "SUFFER" FROM MOEBIUS SYNDROME?
This was a question that came up on Facebook very recently.  A blog post, written by someone who does not have Moebius, was discussing the presentation given by our good friend Tim Smith at our recent conference; and in describing it, the blogger mentioned Moebius "sufferers."  And thus the question arose:  do we, who have Moebius Syndrome, "suffer" from this condition?  Is that a good word to use in describing what we have?

It appears that the majority of those who have weighed in on this so far don't really like the use of the word.  I tend to agree with them.  But let's think it through.  After all, as my friend Teri said on Facebook, having Moebius is no picnic.  It's most definitely not always fun.  There are the physical challenges.  Some of us are often in pain.  There's the staring, the seemingly permanent designation by some others as being "different", and facing prejudice because of it.  I don't know that anyone enjoys that.  There certainly are the occasions where I myself say, inwardly, "Geez, I wish I didn't have this."

But still.  Is it really accurate to say we are Moebius "sufferers"?  I think not.  Here's why.  First, when I think of someone who "suffers" from something, I think of a person who is stuck with a sickness, a disease; and he or she is so burdened with it that there is really nothing he can do about it.  Usually, in my mind, I picture that person in pain, or permanently disabled; with little chance to combat it.  He or she often, at least for a good while, has to sit there, and take the pain, deal with the disability; and that's all there is to it.

Yet here's the thing:  for people with Moebius Syndrome--certainly everyone with it that I can remember I have met--we do NOT just "suffer" from it.  That is--it's not true that there's little we can do about it, that we just have to sit there and deal with a permanent disability about which there's nothing we can do.  That's not us.  Instead--we compensate.  We figure out ways around things.  We learn.  We adapt.  We do things people say we can't do.  When some of us were babies, doctors said we'd never be functioning adults.  But we are.  Some think we can't go to and excel at mainstream schools.  But we do.  They think we'll never have jobs.  We get them.  People assume we can't drive cars.  But we do.  And on and on it goes.

And we do this because we don't simply suffer from something that gradually wears us down and even kills us.  Instead, we learn and adapt and figure out ways to do what we want to do.  So no, in my mind I don't suffer from Moebius Syndrome.  Instead, I'm an individual who just happens to have it...and tries every day not to let it hold me back.  And I think so many of you are the same way.

"Live life to the fullest."--many people, daily. :+)

POST-CONFERENCE MUSINGS, CONTINUED...

WHY YOU SHOULD TRY TO LEARN TO DRIVE
So I thought of this topic today because, again, it always seems to come up.  At conferences, adults with Moebius who maybe are joining us for the first time ask about--"Do you guys drive?  How is it?"  There are some adults with Moebius out there who don't drive.  Maybe it just seems so, so scary to learn how, given our physical differences, given the differences in our vision.  Perhaps you're afraid that you'll mess up in front of your instructor and/or other students.  Or you're afraid they will take one look at your condition and they won't let you take a driving course.  Maybe some are afraid they won't be able to learn to drive, period.  There must be Moebius moms and dads out there who wonder--will my child be able to drive later in life?

First of all, let's say this:  it is only natural to be nervous, perhaps a bit scared, when you're facing the prospect of learning how to drive.  If I remember right, I took a driver's ed course when I was 16 (that was way back in 1978--how time flies).  On the morning of the first day of class, I woke up literally shaking (I didn't know it then, but I wouldn't even have to drive that day; it would simply be a class day.  But I didn't know that...)  When the first day came when you'd have to actually do hands-on driving came, I'm pretty sure I was shaking again that morning.  So it's only natural to be scared.  Everybody is.  I remember hearing the kids in my high school class saying how, when they had to drive on streets for the first time with their instructor, they were nervous as heck too.  So don't let the fact that you're very nervous, that you're afraid, hold you back.  Don't think you're the only one who's got some nerves, while everyone else is cool as a cucumber and knows it will be a snap.  It's not like that.  Others hide it well.  But they're nervous too.

Meanwhile, here's reasons why you SHOULD learn how to drive.  1] You can do it!  I can drive.  My wife can drive.  I know many other adults with Moebius who can drive.  So you can too.  Look, my Moebius means I can only see out of one eye at a time.  I can see out of both, but only one at a time.  So really in a way I drive with one eye.  But I compensate.  I'm always moving my head around, using my rear-view mirrors, switching between eyes, and of course being as careful as I can.  (For example:  I like to take routes to this place or that which I know well; that cuts down on potential problems.  If I know I'll have to eventually get in the right lane of a road in order to make a turn, I get in that right lane as soon as possible.  It means less lane-switching; which means fewer potential problems.  Etc.)  I've had a few fender-benders (a few of them my fault; but not all!!!); so does everyone, whether they have Moebius or not.  So you can do this.

2] Being able to drive is kind of essential in today's economy.  Look, you all want a good job; you want to be able to support yourselves, lead an independent life, be all you can be (sorry, US Army, for stealing your line :+).  You need to be able to get to work on time, and do all that your job requires.  That means you need a car, and to be able to drive.  And again--you can do it.

3] And don't you want to be able to conquer your fears?  To get over them, get past them, prove to yourself all you can be?  There are few better feelings in the world than that.  Think of how good you'll feel about yourself, how much self-confidence you can gain. 

Now of course, Moebius Syndrome affects different people in different ways.  If you're affected more severely by it, then of course--check with your doctor and maybe get his/her opinion, talk with your family members.  You can even try it out--try driving someone's car--ve-rrr-y slowly--in a parking lot, and see what you think.  Get others' opinions.  That's fine.  But think about this...and remember, think about in the sense of--what _can_ I do?  Not just what you can't do.


“Sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory.”--Susan Brownell Anthony (1820-1906)

Well, Friday I missed a day because things got busy, had to pick the family up from the airport...but today let's get back to it--this week we'll have more post-conference musings, plus other stuff.

POST-CONFERENCE MUSINGS:  THE JOB INTERVIEW
You know, for Moebius adults, one question that always comes up is this:  when I have a job interview, should I mention my Moebius in the interview?  Or just avoid it?  Would it look bad if I brought it up?  What to do?

We've addressed that before in this space, but let's address it again, given that it's such an important question.  To me, the short answer is:  YES.  Bring it up yourself in the interview.  Address it.  Just explain briefly what Moebius Syndrome is, that you have it, but that it won't affect your ability to do the job.  It involves facial paralysis and some physical differences.  But that's it, for the vast, vast majority of us.

Now why even bring it up?  Several reasons.  1] Look, it's there.  Anyone and everyone will notice it, including your employer.  Avoiding the subject is like pretending that a 900 pound elephant in the room isn't really there; it can't be done.  Your potential boss is going to wonder.  So take the "wondering" out of it.  Take it on.

Because 2] in this day and age, unfortunately there is still prejudice out there.  There are plenty of people who see a facial difference and assume, aha, that person must have an intellectual disability too.  Of course one doesn't at all have to mean the other, but some--too many--people don't know that.  So you can remove that area of "wonder", as well.

And 3] I really think that any employer will appreciate, and even admire, your willingness to bring the issue up yourself.  Talking about your Moebius simply shows that you're not afraid of it.  You've got guts.  You're honest.  And once you've addressed the issue, and then hopefully get the job and show that you can do the work, the issue goes away.  It never need come up again.  And then you become, yes, a person who has Moebius Syndrome, but not someone defined completely by it.  You're a person first, and that's very important.

4] I always think this point too is important:  maybe by bringing up your Moebius you can also make the point that, look, everyone wants diversity today in their workplace, their school, everywhere.  Diversity is seen as important and as a good thing.  Well--who can better bring diversity to a place than can someone with Moebius Syndrome?  There are thousands--millions--of people in this country today who have facial differences and/or physical differences.  We too are the diversity in this country, and we deserve to have that recognized, to have that respect, and to be able to teach people about that aspect of a diverse culture.  By bringing up your Moebius, you help raise awareness and help drive home that point.

So say it loud.  Say it proud.  Your Moebius Syndrome isn't a handicap.  You can and should turn it into a positive.  Go for it!


“Tenderness and kindness are not signs of weakness and despair, but manifestations of strengths and resolutions.”--Khalil Gibran (1883-1931)

POST-CONFERENCE MUSINGS (4th in a series)
Today, let's talk about something else I saw at this year's conference in Philadelphia.  It has to do with younger people who have Moebius.

And what I saw this year at the conference was very heartening.  There were a number of younger folks with Moebius there this year.  Here, I'm talking about elementary-school-aged kids, I'm talking about Moebius "tweens" (around the age of 10, 11, 12), and I'm talking about Moebius teenagers.  What was so great was that I saw so many of them hanging out at this year's event.  They were talking to each other, they were running around, they were swimming in the pool...they were just being with each other, doing what youngsters do.

I don't know for sure, I certainly wasn't with them all the time (they wouldn't want an old geezer like me hanging with them!), but I imagine they probably didn't spend that much time talking about Moebius itself.  Kids and teenagers often, I suspect, don't feel that comfortable talking about it too much.  And being with each other, they didn't have to.  They all know it's there.  But even if they don't discuss it, I think the great thing is that still, just hanging out with others who have it has got to be beneficial.  They know now that others like them exist.  Even living far away from each other, they can text and stay in contact.  They know there are others out there with whom they relax, be together, and know that these other young people know what having Moebius is like.  Even if they don't talk about it directly, that's got to be a good feeling.

So I was really glad to see that; it's got to be a good thing.  And see, parents, this is yet another reason for you to take your Moebius child to the conference.  Don't you want to help your child find new, and very special and important, friends?  And we have such talented, exciting young people...from budding artists, to all the singers and dancers we saw at the talent show.  I just hope at the next conference we can get all these young people together even earlier, give them an opportunity to meet and know each other the first day of the conference, so that friendships can have as much time as possible to deepen and grow.  Let's keep building on what we've got going here...

"“Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great.”---Mark Twain (1835-1910

POST-CONFERENCE MUSINGS (3rd in a series)
So today I want to talk a little bit about the panel I moderated at the Philadelphia conference; we titled it "Moebius Syndrome: Triumphs Through the Years."  On the panel with me were several of my good friends, including:  Chelsey Thomas; Roland Bienvenu; Christa Trelenberg; and Henrietta Spalding.  All of us on the panel, of course, have Moebius.

What we were aiming for was to talk about our lives dealing with Moebius Syndrome, focusing especially on how we've been able to handle the challenges we've faced, and have success in our lives.  Everyone did that very well.  And in listening to what my fellow panelists had to say, here are a few commonalities that struck me:

First, we all for sure HAVE faced challenges.  Often, doctors told our parents that we might not live, or that we wouldn't be able, when we grew up, to function well in society.  We were at times teased and bullied when we were kids and teenagers.  When I was in graduate school, one of the professors in my program suggested to me that, due to my condition, I'd probably never be able to teach, and so instead I should look into going into archival work (presumably, that would be good because I'd rarely come in contact with people).  Not that I listened; I became a teacher anyway and have been doing it for over 20 years, winning teaching awards, etc etc...

But then, that's been the case for everyone on the panel.  Roland has been working for years in a very important position with the city of Houston.  Chelsey is about to graduate from San Francisco State University.  Christa is just beginning a new job of her own, and she's thrilled with it.  Henrietta has also been a teacher, and has a prominent role with the outstanding organization in the UK called Changing Faces.  And I know many other adults with Moebius, so many of whom have success stories of their own they could tell.

So if you're out there, and you're someone who has Moebius Syndrome, or you're a mom or a dad whose child has Moebius Syndrome, then always know this:  take heart.  Be strong.  There are others who have been where you or your child is now; and they've had good lives.  They've had their "triumphs", as the title of the panel suggested.  They've found ways to succeed.

So can you.  So can your child.  Believe it!


“We make a living by what we get, but we make a life by what we give.”--Sir Winston Churchill (1874-1965)

MORE POST-CONFERENCE MUSINGS
So this one is going to be a riff off of the post of yesterday.  In that one, I wrote about how many parents of Moebius children often have to be very, very strong advocates for their little ones, and have to ignore the at-times negative chatter and predictions coming from their doctors.  And in those situations, I urge parents--go for it.  Don't listen to the doubters.  And you should feel free to educate medical professionals when they indicate that maybe they don't even completely understand Moebius Syndrome.

Again, I do not want anyone to think I'm trying to slam all doctors and those working with them.  I'm not.  There are excellent medical folks out there who know what they're doing, who educate themselves, who listen, and who do great things for our kids.

But still--so many parents reported all this negativity.  Your child has Moebius Syndrome.  He or she will therefore never be able to do this, do that...sometimes it almost sounded like some parents were being told their child would be in practically a vegetative state.

But you know, there's a real positive to take out of this.  And it is one of the things I mentioned yesterday:  that despite all the dire forecasts, all you moms and dads consistently report to us great achievements your children pile up every single day!  You're told that your children won't be able to walk, or talk, or achieve in school, or drive a car, or run or jump or swim etc etc etc.  But what do they do?  Your children right now are walking, talking, doing great in school, just like other kids, and driving, running, and jumping.

There are probably plenty of parents out there of very young children with Moebius who wonder what kind of life their baby will have.  There are others of you out there who hope your Moebius child will achieve even more, who maybe is growing and developing slowly.  And there are those of you with Moebius who are wondering how far you can go, and what you can do.  So--see the previous paragraph...and take it with you.  Remember it.  Don't forget it.  There have been all these predictions in the past about what children and others with Moebius can't do; and over and over they've been WRONG.  Right?  They've just flat-out been wrong.

And that doesn't have to be a bad thing.  That can be a good thing.  That tells all of us, be you parents or someone with Moebius, that you can do it, that you can achieve, that your child can achieve.  All we have to do is keep at it, day after day.  And we will.


“He has a right to criticize, who has a heart to help.”--Abraham Lincoln (1809-1865)

BACK FROM THE CONFERENCE--INITIAL MUSINGS
Okay, I'm finally back from the terrific Moebius Syndrome Conference, held this past weekend in Philadelphia.  Over 420 people wound up attending--our biggest conference yet--and I think everyone is so happy and exhilarated by it all.  Naturally, being with everyone all weekend and really gets one thinking about a lot of things, so this week let me share some of the things that the conference got me thinking about.
First off, let's start with...

PARENTS AS ADVOCATES
In talking to and listening to parents of Moebius children this past weekend, one thing that struck me was how many parents reported that the medical professionals they dealt with in their towns and cities so often knew very little about Moebius Syndrome.   But, beyond that, so many of them--according to what parents told me and each other--were so very negative about their Moebius child's chances in life.  Your child, too many doctors said, will never be able to do this, will never be able to do that.  Doctors prescribed courses of action that weren't necessarily appropriate (almost surely due to a lack of knowledge about Moebius Syndrome).  One Moebius dad even told us that when his wife was still pregnant with their unborn child, but it was clear that the baby would be born with differences, with club feet for example, their doctor raised the possibility--even seemed to advocate--that they should terminate the pregnancy.

Now of course Moebius is indeed a rare condition, and one can't expect every medical professional to know absolutely everything about everything.  But at the same time--if you don't know, shouldn't you refrain from prescribing courses of action out of ignorance?  And why be so relentlessly negative?

Of course, what the conference also taught everyone is this, though:  that time and time and time again, the medical professionals were wrong, wrong, wrong about Moebius children.  What was said they'd never be able to do...they have done.  Parent after parent reported to me that the progress of their children has been amazing, and never would have happened if parents had simply given up and accepted negative diagnoses.  It's incredibly inspiring, and is a credit to their dedicated parents, along with the children themselves.

Now, to me, what this tells us is this:  if you're a parent of a Moebius child, several things will either surely happen or are likely to happen.  First, surely you, when your child is born, will become an expert on Moebius Syndrome and how it affects your child.  It's a labor of love, it happens naturally, and all of you are amazingly knowledgeable.  So, second:  remember then that you as a parent may very well know more about Moebius Syndrome than your doctor or pediatrician.  This isn't guaranteed; there are some incredibly dedicated medical professionals and doctors out there and I don't mean to slam all of them.  But based on what I heard this weekend, it can happen.

So you parents should proceed with confidence.  Educate the medical folks you come into contact with about Moebius.  Give them information, if you have it; or tell them where to find it.  Be confident in your knowledge of Moebius Syndrome, and of your child.  If your doctor or pediatrician maybe, you fear, is wrong about something or is heading down the wrong path, question him or her about it and let him know what you know.  In the end, it's you who is responsible for your child, who knows your child best, who knows Moebius very well, and so you need to do what you think is right and best for your child.  Don't be afraid to do exactly that.

“When things go wrong don't go with them.”--Elvis Presley (1935-1977)

Today I just wanted to remind everyone that, yes, it's almost here!

The 10th Moebius Syndrome Conference comes up THIS WEEK, in Philadelphia, Pennsylvania.  It begins this coming Friday.  You can find out all kinds of details about it here, if you're still thinking of attending but haven't decided yet.  Check it out!  See you in Philly...

“We plant seeds that will flower as results in our lives, so best to remove the weeds of anger, avarice, envy and doubt, that peace and abundance may manifest for all.”
Dorothy Day (1897-1980)

HEALTH/DIET NEWS
I know a lot of you out there want to be healthy, and either keep your weight stable and eat right or even lose some pounds.  So here's an interesting perspective from an expert in this general field--and he says "food restriction" when it comes to this kind of thing is not enough.  Read on:
"We’re never going to beat obesity if we rely on food restriction as a prime means of losing weight.
That’s the considered opinion of Jim Hill, an obesity expert whose paper “Energy Balance and Obesity” published July 3 in the American Heart Association journal Circulation argues that curbing intake of food and calories to lose weight without also boosting physical activity is misguided and bound to fail.
Hill, professor of pediatrics and medicine at the University of Colorado Anschutz Medical Campus and co-founder of a national registry of people who have lost weight and kept it off, said in a phone interview, “We continue to promote the message to eat less, but that’s never been shown to work without increasing physical activity.”
The paper notes that two-thirds of U.S. adults and one-fifth of children and teens are overweight or obese and that we have, as a nation, become increasingly sedentary over the past century. Reversing that trend by promoting more physical activity could go a long way toward shrinking our collective waistline, Hill suggests.
We also need to be aware of the changes in physiology that occur when we cut back on calories, the paper notes. When we strictly reduce our calorie intake, our body tries to preserve pounds by slowing the rate at which it burns calories. And as anyone who has tried to lose weight just by eating less has been frustrated to learn, our smaller-size bodies require FEWER calories than they did when they were larger, so we have to restrict our intake even farther. That’s when we start feeling starved and defeated.
Hill invites us to imagine a different scheme in which we’re moving our bodies a lot more every day, so they actually require more calories to support that added physical activity. When we do that, our bodies get in the habit of burning calories more readily. “Physical activity does more than burn calories,” Hill says. “It puts the body in that zone where it’s going to work for you, not against you.”
The goal of this approach, Hill says, is to “maintain your weight by eating as many calories as you can. It’s positive. You’ll feel good. You get to eat more, not less.”
When we move into that zone, he suggests, we can eat more freely so we don’t feel frustrated. Of course, he says, we also have to eat “smarter,” choosing foods, for instance, that have lots of bulk to fill us up but don’t contain lots of calories. And while we can enjoy a broad range of foods under this approach, Hill cautions that we should keep an eye on portion size so we don’t end up inadvertently eating more than our bodies require for fuel; those extra calories are stored as fat.
The paper maintains that it’s easier to prevent weight gain than to lose weight once it’s gained, as our bodies favor gaining weight over losing it.
Hill says education efforts are needed to help people understand the concept of “energy balance,” in which calories consumed match calories expended and/or stored. Employing that concept in our everyday lives requires cognitive skills, “just like managing a bank account,” Hill says.
The beauty of learning to manage our own energy balance, Hill explains, is that it allows us to make informed choices about what we eat. Most of us might find we can afford to super-size our order of fries, he says, if we’ve gone for a long run earlier in the day — but not if we’ve been sitting on our butt all day."


“They who know how to employ opportunities will often find that they can create them; and what we can achieve depends less on the amount of time we possess than on the use we make of our time. ”--John S. Mill (1806-1873

MOEBIUS SYNDROME IN THE NEWS
Read about yet another young heroine with Moebius--her name is Ana Carys, from the UK:
"A LITTLE girl who cannot smile is inspiring fundraising for research into a condition that affects only 200 people in the UK.
Ana Carys, three, from Poole, was born with Moebius Syndrome, in which the nerves controlling eye movements and facial expressions are either missing or underdeveloped.
People with the condition often have other health problems. Ana has poor muscle tone, uses a frame and special boots to help her walk and wears a helmet in case she falls.
But the Canford Heath youngster swims, attends music classes and pre-school, and is learning sign language.
“Ana can’t smile, blink automatically or look laterally. She has a 25 per cent squint in both eyes,” said her mother Esther.
Esther met her husband Gwyn when she came to the UK from Spain 20 years ago to study English. The pair also have a six-year-old son, David.
The family speak English, Welsh and Spanish at home, and use sign language.
Esther said Ana was two and a half months old when she was referred to hospital because of a viral infection in her airways.
“During a routine check, the doctor noticed she wasn’t blinking and didn’t follow the light. At night her eyes were open when she was asleep, but my sister had that, so it wasn’t such a strange thing,” recalled Esther.
“The consultant managed to get a lot of tests done while they were treating the bronchiolitis, but couldn’t find any abnormalities.”
Tests showed Ana was not blind, and was sent to the child development centre.
“She couldn’t move around or hold anything. They thought it could be development delay.
“They did more tests and when she was two, a professor at Southampton said he was pretty sure Ana had Moebius Synd-rome,” said Esther.
The syndrome, first described in 1888 by neurologist Paul Julius Moebius, is rare. Some children are wrongly assumed to have a learning disability because of their inexpressive faces, squint and tendency to drool.
Esther said Ana’s progress was “amazing”, adding: “We think she understands us because she responds. She tries to say words.”
Ana’s music teacher Lucy Chewins raised £161 for research by holding a musical fun morning at Carvers Music School. She called Ana “inspirational”.
“Because she can’t smile and can’t talk properly, people that don’t understand think she’s mentally disabled,” said Lucy.
“She takes part in the lessons, plays drums and loves my flute. She won’t get left behind in class. She answers things faster than the other children, but with sign language. She’s very bright and very feisty.”
Another of Ana’s friends, Graham Knott, aims to raise £1,000 by swimming around Brownsea Island within three hours on August 19. He can be sponsored on virginmoney giving.com/makeithappen or by texting JIFF 99 £5 (or £10) to 70070.
The Moebius Research Trust has so far raised half of its £250,000 target to start research. Visit moebiusresearchtrust.org."

It seems like in this past year, there have been so many articles in local papers and other media about individuals with Moebius Syndrome.  It's a great thing--it raises awareness; and it allows people, who perhaps think they have Moebius but aren't sure, or people who just want to find out more about Moebiuis for whatever reason, to google it and search for it...and now be able to find lots of stuff on the web.  They'll know they aren't alone.

About one week to go and Conference 2012 will be here!

“Every good act is charity. A man's true wealth hereafter is the good that he does in this world to his fellows."---Mohammed

"I DON'T LIKE HOW I LOOK"
So this question came up on Facebook just yesterday, among some of my friends.  And the question was this:  suppose you are a mom or dad of a child who has Moebius Syndrome.  And your child comes to you one day and says something like--I look in the mirror and I don't like what I see.  I look funny.  I don't like the way I look.  So as a parent, what the heck do you do?  What do you say?

I wish I had a magic answer for something like this.  I don't.  Thinking this way is certainly not unusual.  I have to think that most everyone with Moebius, at some point in their lives, has said to him or herself that "I don't like the way I look, I wish I didn't have Moebius"--that kind of thing.  So I think this is kind of normal.  It's not fun, but it's normal.

Okay, but, still...what then do you say?  Certainly those of you with strong religious faith know that your faith, whatever it is, addresses questions like this; and so that's one place you should go for an answer.  But peoples' faiths can differ, so I'll leave that part of the answer to each individual. 

Beyond that, here's what I'd also say.  First--yes, you look different.  But see, everyone is different.  Everyone is unique.  Everyone has a look that is special to them.  And the fact is, nearly everyone dislikes something about their appearance.  Even Hollywood stars, who are lauded for their beauty or "hot"-ness, complain about how they look.  You hear it all the time--people worry that they are too short, too tall, too fat, too thin, their nose is too big or too small, etc etc etc.  So you're not alone.

The truth is, one of the main reasons we who have Moebius worry about our looks is because it seems like so many in society SAY that we should feel that way.  Oh, they don't say it to us directly.  But the staring, the whispering, etc say it in volumes.  But here's the key:  that doesn't mean that we have to buy in to what "society" says.  Just because they want to stare and shun, doesn't mean we have to agree with them.  Instead, what we have to say is:  I am who I am, and that's okay.  You other people want to say I'm funny-looking and weird, but I'm not going to play your game.  Instead, I simply am who I am.  And that's it.  In short--don't give them that power over you.  Don't let them decide how you're going to feel about yourself.

Instead, look at it this way--you have the chance to teach people something.  So many people today claim to believe in "diversity."  Well, we are walking advertisements that remind you that, yes, diversity exists, all right, and sometimes it's there in ways you don't always expect.  You have the chance to teach people about Moebius Syndrome.  You have the chance to teach people that, yes, everyone really is different, everyone is unique, and they should respect that.  You can start with me, right here.

That doesn't make it easy.  Every day brings new challenges.  Maybe what I said above would be hard for a young child to grasp; feel free to take anything that's useful above and put it in ways that he or she would understand.  I do know one thing that applies to all Moebius children and parents--one of the best things you can do for your child is to always be supportive, and to try not to get frustrated with your Moebius child.  It can be hard to see your child be shy, to see him or her be sad about their looks, to see them have a hard time mingling with other kids, to see them a bit reluctant to go to parties or other events with other young people.  It's hard because you parents didn't have Moebius; it's impossible for you to imagine exactly what it's like to have it.  When you were a kid, you never had others staring at you or making fun of you.  Believe me, it's no fun.  So if your child is a bit shy at times, don't badger him or her, or get agitated, and especially don't say "but WHY don't you want to go?" (to a party, an event, whatever)

Because you know very well why.  Be supportive; encourage your child to do things; let them know you love them and think they're beautiful; but don't let this frustrate you. 


“If you're not failing every now and again, it's a sign you're not doing anything very innovative.”--Woody Allen (born 1935)

MORE NEWS ON AUTISM
This doesn't really surprise me.  It is important, though, given that autism is sometimes associated with Moebius Syndrome.  So make note of this, Moebius moms and dads, and always know--don't be afraid to get a second opinion, and don't be afraid to look very critically at your child's diagnoses and at what your doctors and specialists are telling you:
"

A new study suggests that changes to autism diagnosis criteria may be more to blame for rising rates of the developmental disorder than anything else.
Since the 1960s, autism prevalence rates have skyrocketed from 4 in 10,000 children to a current reported rate of 1 in 88. The reason behind the rise, however, has remained unclear.
Now researchers are shedding new light on the trend by applying current diagnostic criteria to data from a 1980s study on autism prevalence in what’s believed to be a first-of-its-kind analysis.
The original study, published in 1989, looked at hundreds of Utah residents ages 3 to 25 who were suspected to have autism. Clinicians used DSM-III criteria to assess individuals as “diagnosed autistic” or “diagnosed not autistic” and ultimately found an autism prevalence rate of 4 in 10,000 in Utah at that time.
But when a research team from the University of Utah applied current diagnostic criteria from the DSM-IV-TR to records from participants in the two-decades-old study, they found that most who were deemed to be autism-free at that time would receive the label today.
What’s more, the study authors indicate that the vast majority of those who went overlooked in the original study had low IQ’s and would now be diagnosed with both autism and intellectual disability.
“Thus, while it is well known that current DSM-IV-TR criteria increased the identification of high functioning individuals, our results indicate that they also increase identification of ASD among individuals with autism and intellectual impairment,” wrote researchers in the study published online in the Journal of Autism and Developmental Disorders this month.
The analysis found that 59 percent of those who were “diagnosed not autistic” in the 1980s would qualify as having autism today, while an additional 38 percent of people in this group showed some characteristics of autism.
Meanwhile, those who were found to have autism in the 1980s study continued to qualify for the diagnosis using the current criteria, the study found.
“The results of this study demonstrate a significant effect on ASD case status attributable to changing ASD criteria, particularly with regard to individuals with intellectual impairment,” the researchers said. “An important caveat, however, is that we were unable to determine whether it was the broadening of the criteria themselves, or the interpretation of the criteria, which lead to this effect.”

“Embrace the faith that every challenge surmounted by your energy; every problem solved by your wisdom; every soul stirred by your passion; and every barrier to justice brought down by your determination will ennoble your own life, inspire others, serve your country, and explode outward the boundaries of what is achievable on this earth.”--Madeleine Albright (born 1937)