INSPIRATIONAL STORY OF THE DAY: A MOM CREATES A WORLD THAT EMBRACES CHILDREN WITH SPECIAL NEEDS

Read the story of Carrie McGee and her son Alex--Alex was born with Williams' Syndrome.  Their story and what it led them to create will inspire you:

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Carrie McGee is a mother of three. She graduated from Cornell University with a bachelor's degree in psychology and master's in health services administration. She left her career as a hospital executive in 1996 when she was told her firstborn, Alex, had Williams syndrome. Eight years later, Carrie founded Whole Children with other parents. The nonprofit provides support and programs for children with disabilities. The opinions in this article are solely based on the author.

Hadley, Massachusetts (CNN)When my son was born, I picked the name Alexander because the baby names book said it meant "Leader of Men," and I was sure he was destined for greatness. Here's how I pictured it: He would be very smart, win awards, go to a prestigious university and maybe even be famous.

At 5 months old, he still cried constantly, couldn't eat or sleep and wasn't really developing. And a heart condition was detected. His pediatrician suggested we have a geneticist look at him. It might be Williams syndrome, he said.

I didn't know enough to be frightened, until I went to the hospital library where I worked and looked up the definition. Of the 25 things that could accompany Williams syndrome, seeing the words "mental retardation" shattered me the most.

I pictured someone on the short school bus, rocking back and forth in the seat, watching the world through glass but not being allowed to be part of it.

Nope. That would not be our fate. We would beat Williams syndrome, just the two of us if we had to.

I quit my job, took Alex to therapy twice a day. His older stepbrother, Kush, and I worked with him at home when he wasn't in therapy.

Carrie McGee and her son, Alex. When Alex was diagnosed with Williams syndrome, she quit her job to care for him. 

 

As the years went by, Alex made progress, but at what cost? I became isolated and depressed. The other parents in our neighborhood made friends while their kids played together on the playground, but Alex couldn't walk or climb unattended. I wasn't about to let him sit in the wood chips by himself. We had work to do.

With each evaluation, more deficits were revealed. Every time, I asked what I could do to help my son. The professionals patted me on the head and told me to accept his limitations.

I dreamed of a place for Alex and I where there was laughter and happiness, where other parents who shared similar experiences could come together. I didn't want to choose between having friends and helping my son. I needed both.

By the time Alex was 4, I was a single parent. With my three sons, I moved from Philadelphia to Amherst, Massachusetts, where the schools included kids with special needs in their regular classrooms.

One by one, I met parents who were like me. One father would become my future husband.

We noticed that even though our kids were technically included in school, it wasn't true inclusion. They were invited in, but they didn't have the skills to participate. They were often standing on the sidelines watching because they couldn't keep up or understand the rules.

I shared my dream with my friends, and together we embarked on a journey to create a welcoming place where our kids would be understood and celebrated. In 2004, we opened Whole Children, a nonprofit where kids, teens and adults with disabilities can learn valuable skills to help them fully engage in the world around them. Instead of assuming every individual who walks through the door can follow complex directions, we support them as they are and teach them skills they need to be meaningfully included in their schools and communities.

The first year, we ran eight classes and served 26 families. Ten years later, we have around 75 classes a year, and we have grown to a community of 800 families. We laugh -- a lot. Our children have taught us not to be afraid of mistakes, so we've become fearless in our willingness to try.

We frequently fail, which is the secret of our success. We understand, and are helping our communities understand, how much these unique and incredible children will grow up and enrich our community.

It does not weaken us to make the effort to understand and include those who are different. It strengthens all of us.

Alex is now 18. He does ride a smaller bus to school, and he does rock. We didn't beat Williams syndrome because he still has it, but at some point, that goal just became irrelevant.

Alex is Alex. He is an accomplished musician who aspires to be a DJ. He is in his high school musical, has had starring roles in Whole Children's theater productions (everyone who wants a starring role gets one) and studies voice through a program at the University of Massachusetts.

He recently gave a talk to a group of delegates from Azerbaijan who came to the United States to learn ways to improve their educational services for people with disabilities. He made such an impression on them that when I traveled to Azerbaijan with a group of professionals to support their work, a delegate said, "Alex is known all over Azerbaijan."

So in a way, he did become famous.

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AWARENESS WATCH: SERVICE DOGS AND ACADEMY AWARDS ADS

Story one:  in a battle over a service dog, a school board is brought to heel:

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Stevie is a good dog. He doesn’t eat from the table or have accidents in the house. And he never pulls on his leash.

The white-and-tan Staffordshire terrier also has a special talent: He alerts caregivers when his little boy, Anthony Merchante, is going to have a seizure or has trouble breathing.

Anthony’s mother, Monica Alboniga, tried for two years to persuade the Broward County School Board in South Florida to permit Stevie, a trained service animal, to accompany the 7-year-old on campus. But school administrators repeatedly said Stevie didn’t belong at school. And they hoped that a Fort Lauderdale federal judge would agree with them.

Instead they got a scolding. Earlier this month, U.S. District Judge Beth Bloom ruled that Stevie should be allowed to join his human friend at Nob Hill Elementary — and without a series of requirements the school district had tacked on.

Stevie, Alboniga said, “has saved Anthony’s life. I feel completely safe every time he is with the dog, because I know the dog will look for help.”

As the lawsuit progressed in federal court, the school board allowed Stevie to go to school every day, but administrators continued to fight the case.

“The district has always permitted the service dog at the school,” said the district’s spokeswoman, Tracy Clark. Alboniga “pursued the lawsuit as the parties [the district and the plaintiff] differ somewhat in the interpretation of the federal regulations governing service animals. The district’s legal department is reviewing and analyzing the order.”

Had the district won, Alboniga’s lawyer said, 4-year-old Stevie almost certainly would have been expelled.

Anthony suffers from a host of serious disabilities: He has cerebral palsy, spastic paralysis, a seizure disorder, and he cannot speak. To get around, he depends on a wheelchair, to which Stevie is tethered most of the time.

Alboniga, 37, who is raising her son alone, paid to obtain and train a dog up to the specifications of Assistance Dog International Standards, records say. Stevie can aid caregivers in a variety of ways: He can step onto Anthony’s wheelchair and lay across the boy’s lap; once there, the dog is trained to help stabilize Anthony’s head so his airway isn’t impeded.

“Stevie was also trained to ‘tell’ or ‘alert’ human responders in the event that [Anthony] was experiencing a medical crisis,” Bloom wrote. The dog can jump on a sensor mat that activates an alarm, or bark to get the attention of caregivers. He also wears a red service dog vest that holds medical supplies, as well as detailed instructions on how to respond to medical emergencies.

“Stevie lets me know when he has seizures or problems breathing. He pushes me toward Anthony. He barks,” Alboniga said. “When Anthony is having convulsions, he starts barking and goes looking for us. Then he goes back to Anthony and stays with him.”

At home in Sunrise, Fla., Stevie is also a house pet, although he isn’t all that interested in Anthony’s baby sister, Mariangel, a 5-month-old, because he seems to intuitively understand that Anthony is his full-time job. “He loves Anthony,” Alboniga said. “And Anthony loves Stevie, too.”

“He is a very good dog,” Alboniga said. “He is very sweet, and very obedient. He is the best there is.”

All 50 pounds of Stevie rest next to Anthony in bed each night, and the boy and dog are virtually inseparable. That’s partly by design. It’s best if service animals spend almost all of their time with their “targets,” trainers say, and long separations diminish the animal’s “responsiveness and effectiveness,” Bloom wrote.

Alboniga first approached the school board in May 2013, and submitted a formal request for the dog two months later. In its reply in August 2013, the school board said Stevie must obtain a host of vaccinations that rarely are applied to dogs, required Alboniga to obtain costly liability insurance, and mandated that she provide, at her own expense, a “handler” for Stevie.

The requirements, said Alboniga’s lawyer, Matthew Dietz, amounted to “an impossible barrier,” and violated federal civil rights laws that give preference to the choices of people with disabilities. “The fact that the judge said the school board’s rules made no sense vindicates this woman’s belief that what she was doing for her son was the right thing,” Dietz said.

For the first four months that Anthony attended Nob Hill Elementary School as a kindergartner, beginning in August 2013, Alboniga worked, at the district’s requirement, as Stevie’s handler herself. Later, the school board appointed a custodian to work as Stevie’s handler. His responsibilities were “to walk Stevie alongside [Anthony] with a leash, instead of allowing Stevie to be attached” to the boy’s wheelchair, and to take the dog outside to urinate. The custodian also ensured that other children did not try to play with the dog.

“While at school,” the judge wrote, “Stevie does not eat or drink. Nor does Stevie defecate or make stains, or require cleaning or exercise.” Alboniga, the judge said, “attends to Stevie’s daily feeding, cleaning and care needs.”

But administrators continued to assert in the lawsuit that it was not the district’s responsibility to help the boy keep Stevie at school. Anthony’s “individual educational plan” — a detailed accounting of the school’s accommodations to the child — does not mention Anthony’s use of a service dog, Bloom wrote.

Anthony found a friend in the U.S. Department of Justice. The department’s civil rights division enforces the Americans with Disabilities Act, landmark legislation passed by Congress in 1990. Last month, the DOJ weighed in on the lawsuit, arguing that the school board “fundamentally misunderstands” ADA regulations, which require that “public entities generally must permit individuals with disabilities to be accompanied by their service animals.”

“Congress specifically intended that individuals with disabilities not be separated from their service animals, even in schools,” the DOJ wrote.

The school board contended that it wasn’t necessary for Stevie to accompany Anthony to school since the elementary’s staff already was trained to perform the same tasks as Stevie. The district also argued that, even if Stevie was permitted on Nob Hill’s campus under the ADA, it was not reasonable for the district to bear the costs of the dog’s handler.

The judge wrote that the dispute pivoted on whether it was reasonable to expect the district to allow Stevie on campus under the federal civil rights law.

The judge ruled that it was indeed reasonable, “in the same way a school would assist a non-disabled child to use the restroom, or assist a diabetic child with her insulin pump, or assist a physically disabled child employ her motorized wheelchair.”

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Good grief.  Those folks at that school ought to be ashamed of themselves.  Meanwhile--during the recent broadcast of the Academy Awards ceremonies, there was a TV ad shown designed to spark conversations concerning how persons with disabilities consume entertainment:

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A national television ad debuting during the Oscars is designed to spark conversation about how people with disabilities consume entertainment.

The 60-second spot for Comcast features a 7-year-old named Emily who was born blind describing what she sees in her mind when she watches her favorite movie, “The Wizard of Oz.” Visuals in the commercial recreate Emily’s version of the classic film.

The cable giant is using Emily’s story to hawk its new “talking guide,” which reads television program titles, network names, times and other details aloud so that users with visual disabilities and other special needs can independently navigate the TV experience.

“We want to create opportunities for people who love film and television, but who might not have the opportunity to experience it to its fullest,” said Tom Wlodkowski, Comcast’s vice president of accessibility who is blind himself. “By bringing the talking guide to as many people as possible, we can help to bridge that gap and make entertainment just as compelling, captivating and fun for people with a visual disability as it is for anyone else.”

Some of Hollywood’s top talent worked to make Emily’s version of Oz a reality and Academy Award winner Robert Redford does the voice-over for the advertisement, Comcast officials said.

Advertising during Sunday’s Academy Awards broadcast on ABC is big business, with the cost of a 30-second commercial reportedly fetching an average of $1.95 million.

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If you go to the link above, you can see the ad itself.  Good for Comcast.

HEALTH UPDATE: ARE YOU PART OF THE GREAT AMERICAN SLEEP RECESSION?

You really want the answer to that question to be "no."  But if you are missing some sleep, here's why the issue can be an important one, and here's what you should be aiming for.  Read on:

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I won't take it personally if you yawn while reading this story.

Chances are you're sleep deprived.

Sleep deprivation is such a rampant problem that last year the Centers for Disease Control and Prevention called insufficient sleep a public health epidemic.

Teenagers may be suffering the most. Researchers at Columbia University's Mailman School of Public Health called the problem "The Great Sleep Recession" in a new study published in the journal Pediatrics.

They surveyed more than 270,000 teens in eighth, 10th and 12th grades between 1991 and 2012 and found teens are getting less and less sleep.

The average amount is seven hours a day, which is two hours less than the nine hours they should be snoozing. African-American and Hispanic boys are the least likely to sleep enough. But why?

Katherine W. Keyes, lead researcher and assistant professor of epidemiology at Mailman, says researchers don't know. She and her team speculate that increased Internet and social media use is a factor as well as pressure and competition over the college admissions process.

Not everyone gets all their sleep at night though.

Babies and toddlers, for example, take naps to get it all in.

But a new study published in the journal Archives of Disease in Childhood says toddlers sleep better at night without the naps.

Australian researchers reviewed 26 previously published studies and found that napping beyond age 2 is linked to poor quality sleep at night. And, as many parents of toddlers will attest to, it can also lead to an array of stalling tactics and protests at bedtime.

The authors of the study say there is no scientific evidence to continue having children older than 2 nap and recommend discontinuing it, especially if the child has trouble sleeping at night.

We know not getting enough sleep causes all kinds of harm to our minds and bodies no matter your age. Study after study tell us so. Sleep deprivation causes us to eat more, it shrinks our brains, is linked to Type 2 diabetes, leads to slow reaction time that can impair driving and can even cause false memories. And that list could go on and on.

So how much sleep do we need? The National Sleep Foundation, recently issued new recommendations on how much sleep we should all be getting.

They are based on a review of research and a consensus from a group of 18 experts in sleep, science, physiology and medicine.

There are now nine age categories, some of them new. Anything more or less than the identified range is simply not recommended:

• Newborns (0 to 3 months) -- 14 to 17 hours per day

• Infants (4 to 11 months) -- 12 to 15 hours per day

• Toddlers (1 to 2 years old) -- 11 to 14 hours per day

• Preschoolers (3 to 5 years old) -- 11 to 14 hours per day

• School age (6 to 13 years old) -- 9 to 11 hours per day

• Teens (14 to 17 years old) -- 8 to 10 hours per day

• Younger adults (18 to 25 years old) -- 7 to 9 hours per day

• Adults (26 to 64 years old) -- 7 to 9 hours per day

• Older adults (65 and older) -- 7 to 8 hours per day

While there is plenty of research confirming all that goes wrong when you don't get enough sleep, there are also proven steps people can take to help fall asleep and sleep better once they do fall asleep. A new study published in the journal JAMA Internal Medicine says mindful meditation helps adults fall asleep and stay asleep.

Researchers at the University of Southern California, Los Angeles, randomly assigned 49 adults, age 55 and older, who experienced minor sleep disturbances, to one of two groups for one year.

One group was taught mindfulness meditation, which they practiced for 20 minutes per day.

The other group went through sleep hygiene education intervention, which changes daily behaviors and other factors believed to be causing sleep problems.

Those who used mindful meditation ended up sleeping better than those in the other group.

Of course, a larger study is needed to confirm this finding. But the idea of relaxation leading to better sleep is not so far-fetched. In fact, the National Sleep Foundation recommends a relaxing bedtime ritual and winding down before bed. Meditation certainly qualifies.

It also suggests waking up and going to bed at the same time every day, using bright lights to help wake up, avoiding naps and avoiding heavy meals, alcohol and cigarettes at night.

It's a lot to think about. Hopefully it won't keep you up, and you'll be having sweet dreams, and enough of them, in no time. 

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AWARENESS WATCH: AN OSCAR-CONTENDING SHORT FILM DEPICTS PARENTS COPING WITH CHILD'S RARE SYNDROME

Read more about it:

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A short film documenting the intimate thoughts and fears of a couple after learning that their baby was born with a rare disability is up for an Oscar.

Polish film student Tomasz Śliwiński and his wife Magda Hueckel turned the camera on themselves when they learned that their son Leo had congenital central hypoventilation syndrome, also known as Ondine’s Curse. The condition keeps the boy from breathing while he sleeps and means he will likely face a lifetime of relying on a ventilator.

“We really felt our life ended at that time,” Śliwiński told TODAY. “We thought we had to be locked at home with Leo, have no friends, so filming was therapy for us.”

Called “Our Curse,” the documentary follows the couple as they adjust during their son’s first months of life, coping with an array of medical equipment needed to keep the boy alive, confronting their own fears and learning to love Leo.

The footage includes frank conversations between Śliwiński and Hueckel on the couch in their Warsaw home with Śliwiński going so far as to express his concern that his son may commit suicide when he’s able to understand his disability.

Now 4, however, Śliwiński told TODAY that Leo is doing well and learning to speak and the family is moving forward.

“The therapy is over and we have to start living. It was natural we had to stop shooting this and start enjoying life as fully as we can,” the filmmaker said.

The 27-minute film is one of five nominated in the documentary short subject category. The winner will be announced at the Academy Awards on Sunday.

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One notes that the film is titled "Our Curse"; but I think the parents now realize that their son's life is not and will not be a curse.  Instead, his life, and theirs, has as much as value as anyone else's life, and it will be a good one.

FOR MOEBIUS ADULTS: MUSINGS ON THE "SCIENCE" OF ONLINE DATING

So I know that many of you in the Moebius adult community, if you are still single, want to find that special someone.  You want to date.  You want to find that significant other.  Some of you have been involved in the world of online dating.  You know how that goes:  you find your online dating site, and then you have to create your "profile"...and see if you get an responses, interest, virtual "winks", etc.  Well, it turns out that some research has been done on this.  What kind of profile will likely generate the most interest?  Read on...and I will then have some musings on all this below.  This comes from today's NY Times:

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One in 10 American adults is registered with an online dating service. The number of people looking to find love online has never been greater, but the wealth of options also means that singles can spend months combing through hundreds of profiles without ever securing a successful date.

Enter Sameer Chaudhry, an internist at the University of North Texas, who proposed a collaborative project with his friend Khalid Khan, a professor of women’s health and clinical epidemiology at Barts and the London School of Medicine and Dentistry.

Dr. Chaudhry’s dating life was stagnant, his online persona garnering no response from the women he reached out to. So Dr. Chaudhry asked Dr. Khan to help him research the data on attraction and persuasion in hopes of improving his odds.

The two combed through all of the scientific literature on the topic that they could find. They eventually settled on 86 studies that focused on factors that seem to transform computer-mediated interactions into real-world dates. They reported their findings recently in the journal Evidence Based Medicine.

As it turns out, success begins with picking a user name. While men are drawn to names linked to physical traits (e.g., Cutie), the researchers found, women prefer ones that indicate intelligence (e.g., Cultured). Both sexes respond well to playful names (e.g. Fun2bwith) and shy away from ones with negative connotations (e.g., Bugg).

User names that begin with letters from the first half of the alphabet do better than those from the latter half. “As human beings, we have a tendency to give things at the top of a pile more value,” Dr. Khan said.

The most successful online profiles featured content divided 70:30 between personal information and a description of the ideal desired partner, the scientists found. Honest, likable and succinct profiles written with a touch of humor — particularly those that did not self-aggrandize or use rhetorical flourishes — elicit the best results. Photographs showing the user smiling and standing in the center of the frame surrounded by others work best.

“Through evolution, the brain has developed ways of subconsciously responding to particular situations, including courtship behavior,” Dr. Khan said. “Online daters need to consider the impact of the information others immediately receive when clicking on their profile.”

As for Dr. Chaudhry, Dr. Khan added, the project paid off. He spent Valentine’s weekend in Rome with his sweetheart, whom he met online.

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Interesting stuff.  Now, though, for adults with Moebius, the article above does present one conundrum:  it says that the best picture for your profile will show you smiling.  But...most of us can't really smile.  What about that?

See, I think though that this creates an opportunity, not a problem.  I say, take the best picture of yourself that you can.  Take care.  Look neat.  Appearance can indeed be important.  (Meaning:  just because you cannot smile is no reason to look slovenly).  But no, you can't smile.  So put something in your profile that somehow indicates that you have Moebius, and what it means.  You want your profile to be succinct.  So don't write a dissertation on Moebius.  But sure...why hide it?

Sure, you have Moebius...but you're more than awesome.  And if someone is going to ignore your profile because you look a little different, then why would you want to be with that person anyway?  Some food for thought.  Good luck out there...

INSPIRATIONAL STORY OF THE DAY: IT'S FASHION WEEK IN NEW YORK CITY

And a model with physical and facial differences--she has Down's Syndrome--is on the runway.  Good for her!  And let her remind us all in this community that we can achieve, too, just like she has.  Read more about it:

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Backstage at New York Fashion Week 2015, actress Jamie Brewer was tweeting pictures of herself as she was getting primped and primed for her runway debut.

“Make-Up Time,” she tweeted. Then “Hair Time Now.”

The pictures showed a young woman with a sweet, round face and big eyes, known for her role in “American Horror Story.”

“Embrace the fear and go for it,” Brewer said. “That’s what I do. I don’t run from it, I embrace the fear.”

On TV, Brewer said she had conquered many fears, including “a drowning scene, attack of zombies, getting hit by a car ... in the first season, being dead and being dragged.”

But Thursday she was doing something she never thought she’d do. She was about to make history as the first model with Down Syndrome to walk the Fashion Week runway.

From Activist to Actress

Brewer was one of a dozen women carefully selected by designer Carrie Hammer to shatter model stereotypes. Billed as “Role Models Not Runway Models,” the show featured CEOs and marketing executives, philanthropists and bankers, computer coders and even a senior vice president whose job title at an ad agency was “Global Chief Creativity Catalyst.”

But of all the women at the top of their game, the star was Jamie Brewer.

“Jamie is an incredible actress and also an activist, an artist and a writer who just happens to have Down syndrome ... but that doesn’t define her,” Hammer said. “She’s an incredible role model for many, many people.”

In addition to being a successful actress, Hammer is also an advocate for people with intellectual disabilities. At 19 she was elected to the State of Texas ARC Board, and she also worked with the Governmental Affairs Committee for the State of Texas, as the only member with a disability.

”I’m a huge advocate for individuals with disabilities,” Brewer said. “Changing the minds of individuals [so they] get a better understanding of individuals that do have disabilities.” “If you work at it, you can achieve it”

The activist turned actress prepared Thursday for her turn as a fashion model. “If you work at it, you can achieve it,” she said simply.

“We’re all really, really excited,” said designer Carrie Hammer. “I’m not nervous at all ‘cause everyone’s awesome.”

As the music swelled the models walked the catwalk one by one, posing at the end for pictures, then walking back. Poised and confident – some slightly nervous - they were dressed in stylish, classy clothes designed specifically for them.

The last to walk was Brewer. Wearing a black, V-neck dress cinched at the waist inspired by “American Horror Story,” she bounded onto the stage with a big smile and unbridled energy. In a blur of perpetual motion, she twirled, pointed her finger at the audience, shimmied and shook - all signature dance moves she said she created in honor of her costars.

At the end of the runway, Brewer raised her hands in the air and with a triumphant fist-pump, strode off the stage. The audience members cheered, some with tears in their eyes.

“Put Your heart and soul into it”

“Jamie really shows everyone that you can become what you imagine,” Hammer told ABC News. “I hope that, watching her, young women know they can become anything, do anything. Your circumstances don’t define you.”

“Take the risk. Take the chance. Put your heart and soul into it, because when you put your soul into it, you will become what you’ve always dreamed,” Brewer said. “You, yourself, will become a legend.”

 

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MOEBIUS SYNDROME IN THE NEWS: MEET A MOEBIUS ARTIST

Her name is Tracy Harper, and she is from Canada.  How does she express herself?  Through her art, and it is fantastic.  Meet yet another Moebius heroine:

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She may not be able to physically smile, but anyone who knows Tracy Harper knows her personality lights up a room and fills others with the warmth of a thousand smiles.
Harper, who suffers from Moebius syndrome, recently beat out 90 other artists to capture the Rare Artist award for her self-portrait titled: What Are You Looking At?
On Thursday, she learned she had won the international competition that featured other artists with rare disorders.
"It sunk in, but I still couldn't believe it was happening," said the Winnipeg artist who grew up in Killarney. "There was a pocket full of tears of joy that came out after."
Moebius syndrome is a rare congenital neurological disorder characterized by facial paralysis. Harper can't physically smile or move her eyes from side to side.
Not being able to express emotions the same way as most, Harper said art offered an outlet for expression.
Her winning painting is a self-portrait, with her face peeking out behind a shroud of leaves.
"My personality comes out in my art," she said. "It's meditation for me. It allows me to express my feelings. What Are You Looking At? deals with some of the experiences that I've had with people looking at me and judging me before they know me."
Harper said living with Moebius has sharpened her ability to understand others' facial expressions.
"I think I can read people clearer as a result of my syndrome and know if they want to get to know me or not. And if they don't, that's fine because they're missing out," Harper said.
During the competition, people from all around the world voted for her painting.
Harper currently works two jobs, and finding time for making art has been a challenge, but she said the attention the award has brought has created a lot of interest in her work.
She plans on committing more time to painting in the near future after she gets home from a trip to Washington, D.C., which was part of the award.
Following the win, a mother from Massachusetts, who has a daughter who also has Moebius, wrote Harper.
"Congratulations Tracy. Wonderful piece of artwork. You give my lil daughter something to aspire to," the woman wrote on Facebook.

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AUTISM UPDATE: NO "ONE SIZE FITS ALL"

Some, though by no means all, children with Moebius also are affected by autism; hence occasionally here we focus on autism updates.  And I think this article from today's Washington Post is a good reminder:  autism affects every child differently.  What you works for you as a parent, might not benefit another.  Read on:

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My favorite thing to tell anyone who asks about life with autism is “If you’ve met one kid with autism, you’ve met ONE kid with autism.”
Autism is as individual as the individual themselves. I used to be a support parent to newly diagnosed autism families in our county. The first thing I always said when talking about anything was “Here is what worked for us…”
Every case of autism is different. Some kids are okay being touched. TJ wasn’t. Some kids are non-verbal. TJ is very verbal. Some kids seemed to develop in a typical fashion until they were 1 or 1 1/2, and then lost language. That wasn’t our experience at all; TJ appeared to have autism from the second he was born.
This huge variance can really be tough in our autism community. When I speak or write about our experiences with TJ, I have to hope that the listener or reader will understand that I am not making a blanket statement about Autism, capital A.
I’m only referring to our autism, little a.
I do not know everything there is to know. I only know where our family has been, what we have dealt with in the past, and what we are currently dealing with in the present.
I know that my TJ is 14 and was born with autism.
I know that occupational therapy worked wonders for him, as he used to scream at being touched or hugged or held.
I know that Speech/Language, Applied Behavior Analysis (ABA) and Discrete Trial Instruction (DTI) magically worked together to create the miracle that was TJ saying “Hi, Mommy” for the first time when he was 3.
I know that his love of Pixar movies helped him relate to other kids when he was little.
I do not know what kind of adult he will be. I do not know what he will want to study, or what interests he will develop as he expands his horizons. I do not know how long he will stay in high school, or if he will go to college, or if he will ever date, much less get married.
All I know is what we have done, and what we are doing.
And I do know how I felt when TJ was diagnosed. I know how crushed we were when we thought of the struggles that TJ would face when he was so little. I know how it felt to join this club of Special Needs Parents, not knowing what all these terms meant, or what these therapies did for him, or what would work.
So while Autism is a big diagnosis made up of so many individuals, maybe we can all remember that we are all living with our own life with autism. Maybe we can all lean on each other through those struggles that we all have to face, as a community.
And maybe we can all celebrate these incredible lives that have been given to us. For in so many ways, as difficult as this journey can be, there are some wonderfully magical moments that make our kids with autism, or Autism, absolutely amazing.
Lauren Swick Jordan blogs at I Don’t Have a Job. 

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AWARENESS UPDATE: DISABILITY STORYLINES IN CHILDREN'S BOOKS

Specifically, three children's books are being honored for their stories, which focus on portraying the disability experience honestly, with compassion, all while emphasizing the value of the individuals portrayed.  Read on:

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Three books are being honored for their portrayal of the disability experience through a special set of awards given alongside the well-known Caldecott and Newbery Medals.

The winners of this year’s Schneider Family Book Awards include tales of a boy who stutters, a girl with autism and young adults with intellectual disabilities during transition.

The Schneider awards are presented annually by the American Library Association to authors or illustrators for the “artistic expression of the disability experience.” One award is given for works aimed at each of three audiences — kids up to age 8, those ages 9 to 13 and teens.

In the youngest category, writer Alan Rabinowitz and illustrator Catia Chien won for their book “A Boy and a Jaguar,” about a young boy who stutters uncontrollably except when he talks to animals.

Ann M. Martin’s “Rain Reign” received the middle school award for depicting the life of a girl with autism who must break her routine in order to find her beloved dog who goes missing when a storm hits town.

“Martin creates an authentic portrayal of a young girl on the autism spectrum. In getting to know this resilient character, readers’ misconceptions about this disability will be altered,” said Alyson Beecher, chair of the Schneider Family Book Award.

Gail Giles won in the teen category for her book “Girls Like Us,” which follows two very different young women with disabilities who become roommates after completing a high school special education program.

“In this surprisingly gripping novel, readers gain insight into the challenges of young adults with intellectual disabilities. Through an unlikely friendship, two young women gain empowerment, independence and family,” Beecher said.

The awards were announced this week at the American Library Association’s midwinter meeting in Chicago.

At the same time, the organization said this year’s Newbery Medal for children’s literature will go to Kwame Alexander for “The Crossover” and the Caldecott Medal for picture books will honor Dan Santat for “The Adventures of Beekle: The Unimaginary Friend.”

Each of the Schneider recipients will receive $5,000 and a framed plaque at the library association’s annual conference in San Francisco in June.

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FOR MOEBIUS MOMS AND DADS: WHAT MY DISABLED SON TAUGHT ME ABOUT DISABILITY

An essay from the Washington Post.  Now, in this case, the child in question has spina bifida.  But I think what this parent has to say here will be interesting for all of us.  For example:  the parent here (the baby's mom) writes that she does not really like to use the term "disabled."  Do you agree?  Read on:

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My son, Henry, is your classic 2-year-old. At 22 months, he adores Barney the Dinosaur. He refuses lids on his sippy cups with a resolute no! (they’re for babies, after all). He pulls his older sister’s hair when he’s angry, and lays his head on our laps lovingly when he’s feeling affectionate. He’s a completely typical toddler. Except, he isn’t.
At a routine ultrasound, Henry was diagnosed with spina bifida myelomeingocele, a permanent, disabling birth defect that occurs when the neural tube fails to close in the first 28 days of pregnancy. Henry deals with the effects of spina bifida (such as partial paralysis, low muscle tone, incontinence, and hydrocephalus) and will continue to for the rest of his life. Legally speaking, he is disabled.
But the word “disabled” has become so fraught with negativity that I don’t even like to use it at all. It tells you nothing about Henry – his vivacious personality, his wry smile, his affinity for pretty blonde women. And sadly, I know what people think when they hear the term “disabled”: Ugh, too bad. A kid in a wheelchair? That’s so depressing! At least, that’s what I thought, before Henry.
Truthfully, I had so many preconceptions (and misconceptions) about disabled people that it’s embarrassing to write about them. But having a child with spina bifida forced me out of my comfort zone to confront some long-held beliefs I didn’t even know I had.
This is what Henry has taught me, so far.
Everybody’s got their something
The week Henry was diagnosed with spina bifida was the most devastating week of my life (partially because of all my misconceptions about what it meant to be disabled). Gradually, as our news traveled, friends and acquaintances would approach me to offer their condolences and their support.
What shocked me was realizing how nearly everyone who reached out had a sister, friend, or a child of their own who struggled in some way. My son doesn’t have spina bifida, one wrote, but he has global developmental delays. Another friend of a friend had a son with Down Syndrome. Many had children or knew of classmates who had autism and asperger’s syndrome. People started pouring out of the woodwork, offering up their struggles to soothe me. Sensory processing disorder. Cerebral Palsy. And everyone who shared a story insisted on the same thing – we cannot imagine our lives without this person.
I slowly started to learn that nearly everyone had some private struggle. Henry would undoubtedly have gross motor delays and we had no idea if he’d ever be able to walk independently. But would his life really be that much more difficult than a child with a learning disability? Or a child with an anxiety disorder? He’d probably have to use a wheelchair at some point – but so what? It didn’t mean that he wouldn’t be able to live – it just meant that he’d live life in a different way. Having so many people open up about their own disability confirmed that there were a million different types of people, and an infinite different ways to live a life. Henry’s life would look different from ours – but that didn’t mean it would be tragic.
Disabled people are just that – people.
A few months after Henry was born, I received a call from our county health office. A nurse was calling to tell me that a combination of Henry’s disability and our low income made us eligible for food stamps. She spoke in a hushed whisper, as though she had stumbled into a wake: We hear you’ve had an adverse birth outcome.
“A what?” I asked. It took me a few awkward seconds to realize she was talking about my son. The nurse hadn’t bothered to use his name or even offer a polite Congratulations on the new baby! She had reduced him to an outcome, a thing, totally devoid of humanity because of his disability. Oh, no, you don’t understand, I wanted to say. He’s absolutely precious. We adore him. The only “adverse” thing about him is that he spit-up down my shirt after I nursed him this morning. I could only nod, stunned, and continue with the phone call as though we hadn’t been terribly insulted.
At the same time, I understood it. Just a few months earlier, I would have mistaken someone’s disability as that person’s defining characteristic – in fact, I had been doing it my entire pregnancy. Since we had gotten Henry’s diagnosis at 19 weeks gestation, we had virtually no identifying information about him except for words like spina bifida, hydrocephalus, clubbed feet, and deformity. It didn’t feel like I was giving birth to a child, exactly – just the sum of his various defects. Throughout his pregnancy, that was how I thought about him, primarily – disabled. Sadly, it seemed that was how other people thought as well.
Which is precisely why I was so shocked when Henry was born. When the doctors lowered the surgical curtain in the operating room, I caught the first glimpse of him, red and fat, slumped over the doctor’s hand, looking extremely unimpressed. I gasped – he was beautiful. As the medical team whisked him away to close up the lesion on his lower back, my husband and I exchanged dubious glances. Was this what we were afraid of? This precious, grumpy little boy? In our terror surrounding Henry’s diagnosis, we forgot that our child was simply that: a child. My God, I thought. What had we been expecting – a monster?
He had my nose. He had my husband’s cheeks. He had a disability. He was perfection.
“Quality of life” is relative
Before Henry, I thought I had a very clear idea of what embodied a “good quality of life.” In a medical ethics class I took in college, the phrase quality of life was always summoned when we talked about disability. Would it be ethical to terminate a disabled fetus? We asked each other. What about euthanasia, when someone is old and confined to a wheelchair? (For some reason, wheelchair was always used pejoratively, something that I find hilarious now. Henry’s got dozens of peers who use wheelchairs – and how would they keep up with the able-bodied kids otherwise?) When we spoke as a class about disability and quality of life, the consensus was clear – the two were totally exclusive.
Implicitly, we learned from the world around us that spina bifida (and any physical disability, by extension) was literally a fate worse than death. Weeks before our diagnosis, we watched the film Million Dollar Baby; in it, Maggie, the titular character who becomes a world-class boxing champ, begs her trainer to smother her after she becomes a quadriplegic. Wherever we turned, we saw disability portrayed as miserable and bleak, and having no disabled friends at the time, we had nothing to counter that perception. When you’re disabled, I thought, a good quality of life just isn’t possible.
Does it even need to be said? I’m eating my words like crazy. Henry has an intimidating list of medical complications, but I dare say his quality of life is close to fantastic: play dates every week, a full social calendar, and lots of affection lavished on him by his parents and relatives. Perpetually smiley and snuggly, he shocked a woman at our parish when she learned that this happy boy was – gasp! – disabled. “Him?” she said, incredulous. “But he’s so happy!”
He is. Disabled people can have a great quality of life – something I think that depends more on their support system than the type of disability they happen to have. Their disability alone doesn’t (or shouldn’t) determine what kind of life they will ultimately lead – happy, sad, active, or inactive.
Acknowledging that spina bifida can be exhausting and expensive at times, I would go so far as to say that raising a child with a disability has been an immeasurable gift. Before, the thought of personally being confined to a wheelchair in a nursing home, the thought of being dependent on another human being when my faculties dimmed – of being disabled – made me shudder. Before, to my eternal shame, disabled persons were more of a concept than anything else: They were boogeymen, cautionary tales of what not to do (don’t text and drive; you’ll end up in a wheelchair!). Raising a disabled child has freed me from these stereotypes and burdensome fears. I know now that being disabled is just another way to live life, and not a measure of how unlucky or how human someone is, and not an indicator of how much they suffer. I am grateful for this typical toddler – and dare I say it? – I am grateful for his disability, and what it has taught us.
Sarah Watts is a freelance writer and blogs at wifeytini.com.

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MORE UPDATES

First:  since children with Moebius Syndrome sometimes, though by no means always, are affected by autism as well, note--working with pets can be a positive experience for children on the autism spectrum:

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Living with dogs, cats or other pets may help children with autism acquire social skills, researchers say in a new study that finds greater engagement among those with animals in the home.

In a survey of 70 families with children on the spectrum ages 8 to 18, researchers found that those with a pet displayed more prosocial behaviors.

“Children with any kind of pet in the home reported being more likely to engage in behaviors such as introducing themselves, asking for information or responding to other people’s questions,” said Gretchen Carlisle of the University of Missouri who worked on the study published recently in the Journal of Autism and Developmental Disorders.

Carlisle said that animals may serve as a social catalyst for children with autism, prompting kids to interact more than they might otherwise.

“Kids with autism don’t always readily engage with others, but if there’s a pet in the home that the child is bonded with and a visitor starts asking about the pet, the child may be more likely to respond,” she said.

Social skills continued to increase the longer families owned a pet, the study found. Children reported the strongest attachments with smaller dogs, though parents also indicated that their kids had deep bonds with other pets including cats and rabbits.

Of the families in the study, 57 had a pet of some kind. Most had dogs or cats, but the research also included families with fish, farm animals, rabbits, reptiles, a bird and a spider.

“Dogs are good for some kids with autism but might not be the best option for every child,” Carlisle said. “Kids with autism are highly individual and unique, so some other animals may provide just as much benefit as dogs.”


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And, on the physical differences/facial difference awareness front:  a positive development--note that a Super Bowl ad contained a young lady with Down's Syndrome:

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A third-grader with Down syndrome will be front and center on advertising’s biggest night of the year as part of a television commercial for McDonald’s.

Grace Ramsburg, 8, will be included in a one-minute TV spot for the fast-food chain alongside her brother, Adam, and father, Dale.

The commercial features restaurant customers stunned to learn that McDonald’s will be asking for nothing more than “lovin'” as a form of payment from select diners through Feb. 14.

The Naperville, Ill. family is seen embracing after being told “your total is one big family hug” in the ad that was filmed in December at two Chicago-area McDonald’s locations.

“All of the customers in our Super Bowl spot were random customers who had no idea they were being filmed to be in a commercial, let alone our Super Bowl commercial, until after the filming. So, this family was not specifically chosen but we’re thrilled they stopped into their local McDonald’s on that day to take part in this special commercial that is all about lovin’ our customers,” Lisa McComb, director of media relations for McDonald’s, told Disability Scoop.

The commercial will air during the first half of Sunday’s matchup between the New England Patriots and Seattle Seahawks and for two weeks following the game, McComb said.

Grace’s mom, Holly Ramsburg, said the family just learned Thursday that they would be included in the Super Bowl ad. She’s not sure if Grace grasps the enormity of it, but said she’s overwhelmed.

“There’s still misunderstanding and there’s still judgement,” Holly Ramsburg said of having a daughter with Down syndrome. “I feel like everyday when we go out and we’re able to get her face out there and get her personality out there it is wonderful.”

More than 111 million people watched the Super Bowl last year, according to Nielsen. Thirtysecond spots during this year’s game reportedly cost $4.5 million dollars.

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MOEBIUS SYNDROME AWARENESS UPDATES

First:  our own Kathleen Bogart not only is doing great research on Moebius and led an influential awareness campaign leading up to Moebius Syndrome Awareness Day; she also is receiving plaudits from the local paper in Corvallis, Oregon, where her university, Oregon State, is located.  Every week the Corvallis Gazette-Times runs a feature called "Roses and Raspberries", where some in the local area get praised, and others...don't.  Don't worry--Kathleen got a rose:

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ROSES to Oregon State University psychology professor Kathleen Bogart, who is professional and matter-of-fact about her work in educating the public about a rare disorder known as Moebius Syndrome. Facial paralysis is the rare congenital disorder’s most visible effect.

Last week, from Tuesday through Friday, rain or shine or fog, she and some of her students staffed a table at the Memorial Union quad to spread the word and increase understanding about a topic she knows all too well, as she was born with Moebius Syndrome.

According to the Moebius Syndrome Foundation, “Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, grimace or blink their eyes) and unable to move their eyes laterally.”

We thank Bogart her for sharing her experiences with us in the article we published Saturday, availalbe at http://tinyurl.com/nxpw9tx). People who would like to learn more about Moebius Syndrome can see http://www.moebiussyndrome.com.

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Let me also help spread the news about a couple of other opportunities.  First, from the Moebius Syndrome Foundation:

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The Moebius Syndrome Foundation is seeking applications from young adults with Moebius syndrome aged 16-21 to join a new advisory board. This group will advise the Moebius Syndrome Foundation about issues relevant to young adults. For example, the board may suggest ideas for conferences and engage in social media campaigns. The board will meet via videochat approximately twice per year and will help run teen and young adult activities at the biannual conferences. Please email Kathleen Bogart at Kathleen.bogart@oregonstate.edu to request an application. Applications are due by March 1, 2015.

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And, from The Many Faces of Moebius Syndrome:

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MSAD 2015 was huge. We took in over 1300 photos. Now we need the stories behind the photos so we can share our Reflections of MSAD 2015 with the rest of the world in a pdf booklet put together by our own Rebecca Maher. Please send us your reflections, info, and thoughts to MSADreflections@gmail.com,by 2/15/2015. Individually we are a drop. Together we are an ocean. For MSAD 2015 we sent a tidal wave of awareness around the globe. Now it's time to tell how we did it! The information you share can be as small as a paragraph or as long as a short story. What's important is that it comes from our hearts, like our smiles.
Thank You
Tim Smith

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