MOEBIUS ADULTS: WE NEED YOUR INPUT

As many of you might recall, the Moebius Syndrome Foundation has created a new position.  The MSF Board has voted to create the office of Board liaison to the Moebius adult community.  I am pleased to announce that the Board voted to have me be that liaison.

We did this for a few reasons.  We believed that there were those in the Moebius adult community who would like to have more interaction with the Board and what it does.  Plus, we believed this was a good idea--to reach out more to Moebius adults and to find out what they are thinking.

We envision the liaison then as doing the following: first, he will periodically reach out to the Moebius adult population via social media--for example, through Facebook.  I will ask what adults are thinking about, what issues are important to them, what we as a foundation can do better, and so forth.  We will also, every three months or so, have conference calls on which any Moebius adult who wishes to can participate.  This will be via a toll-free number which we will provide to participants.  I and (when possible) other MSF Board members with Moebius will also participate in those calls.  We plan for these to last perhaps an hour or so, and of course all callers who wish to speak will be given the chance to do so.

I will then, every month or so (or more often if necessary) compile the feedback I have received in regular reports to the Moebius Syndrome Foundation Board.  The liaison will simply report to the Board the feedback he's been given.  He will not censor it or edit it.  If a Moebius adult has something that he or she wishes to say to the Board, the Board will receive it.

In addition of course, that having been said, it will then be up to the Board to decide what to do, if anything, with the feedback it receives.  The Board has many things to consider, it has many points of view to take into consideration, and often it has difficult and complicated decisions to make.  The Board hopes that everyone in the community will always keep this in mind.

But also, the Board wants to hear from you.  That is why it has named me as this liaison.  And it will take all of the feedback it receives seriously.  So therefore I want to hear from you.  Let me know what you are thinking, and what is important to you. 

And now, I am also glad to announce that our first conference call, for any Moebius adults who would like to participate, will be coming up soon. We will have our first call this coming Wednesday, May 6th. The call will begin at 8:00 pm east coast time; that's 7 pm central time (and Texas time!; 6 pm Mountain time; 5 pm West Coast time. All you need to do is either message me on Facebook, or e-mail me (ksmant@gmail.com) and I will let you know what the number is to call, etc. If you have Moebius friends who are not on Facebook who might like to participate, please let them know, too. Thanks everyone--we want you involvement and your feedback!

YOUR DOCTOR VISIT? IT'S GOING ELECTRONIC

I thought many of you in the community would find this interesting.  Many of us who have Moebius, and many of you Moebius moms and dads, do have to make more doctor visits than do some folks.  Having Moebius can mean that more physical problems crop up; and so that can mean more trips to the doctor.  But now, you might message your doctor a question electronically, with he or she answering you the same way, rather than seeing the doc face to face; or, your visit with the doctor might be via video; or, you might go online to find medical information, rather than visiting a doctor's office.

Is this a good thing?  Certainly sometimes it can be, when you need information quickly.  Is it always a good thing?  Maybe not; sometimes I suspect those of us in the Moebius community need to see our physicians face to face, and they need to see us that way too, to really get to know us and understand our condition.  But things are changing.  Read on:

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Thanks to technology, Gary Sullivan enjoys a new kind of relationship with his doctor. If he wakes up with a routine health question, the 73-year-old retired engineer simply taps out a secure message into his doctor’s electronic health records system. His Kaiser Permanente physician will answer later that day, sparing Sullivan a visit to the clinic near his Littleton, Colo., home and giving his doctor time to see those with more urgent needs.

Once you took medical questions directly to your doctor, who advised, tested and treated you. Today, not only are we turning to the Internet for everyday medical information, we’re also generating our own health data: using a smartphone, for example, to investigate a child’s ear pain or monitor blood pressure. We’re learning from our peers online how to cope and find new treatments. Our doctors can keep our records electronically, accessible to us through a patient portal. Some of us can make video visits with doctors, who can offer diagnoses and treatment plans via computer or smartphone.
With all these advances, a traditional paternalism in medicine is changing, too.
“There’s no question that technology is shifting the doctor-patient relationship,” said pediatrician Wendy Sue Swanson, executive director of digital health at Seattle Children’s Hospital.

Susannah Fox, entrepreneur in residence at the Robert Wood Johnson Foundation, describes a “sea change in communications” over the past 15 years.
“Consumers only used to get a filtered drip of information,” she said. “What the Internet did was pull open that funnel and give people more access — not complete access — to health information.”
Almost three-quarters of American adults use the Internet to search online for health information each year, according to the Pew Research Center. While patients are digging through new information, so are doctors. A “tsunami of knowledge” from hundreds of journals pours over doctors, says Jack Cochran, executive director of the Permanente Federation.
All this information changes the culture. “Doctors say they’re taught to know things that others don’t,” said Dave deBronkart, a cancer survivor and advocate for patient engagement. Today, thanks to online searches and communities, a patient may know about advances before a doctor does.
Where this reliance on the Internet will lead remains unclear, and the technology has not been perfected. More than a third of consumers experienced gaps in their electronic health information, such as test results or history that were not available at a medical visit, according to a 2014 government brief. The health-care system is still far from fully connected by computer, and doctors can be swamped by data.
“We are unfortunately at a very awkward stage where we have a lot of technology at our fingertips, and health care has not quite figured out how to use it,” Fox said.

Plugged-in doctors

There’s probably a computer or tablet in the exam room at your doctor’s office. In 2001, 18 percent of doctors used electronic health records systems. Today, about two-thirds of doctors and most hospitals use them. This change was propelled, in large part, by a program from the stimulus act of 2009 that has invested $29.6 billion as of February 2015 to help Medicare and Medicaid providers convert to and use digital records.“It is your data; you control it. You have the right to see it in an electronic form,” said Karen DeSalvo, national coordinator for health information technology in the Department of Health and Human Services.
“People need to ask for it. Some people feel that they don’t want to bother the doctor or bother the hospital. . . . And sometimes the systems make it hard to get.”
The availability of electronic health records and consumer resources “changes the power relationship” between doctors and patients, DeSalvo said. “It’s a leveler in many ways.”
Half of patients now have online access to their health information, according to a recent online poll commissioned by the National Partnership for Women & Families. And a majority want, like Gary Sullivan, to be able to message their doctors.
Not only should you read your electronic health record, you should check for errors. “Most people’s records contain mistakes,” deBronkart said. His 2009 blog about mistakes in his Google Health record led to a front-page story in the Boston Globe and a career as an advocate known as e-Patient Dave. (Google Health, a free service intended to help consumers pull together medical and wellness information, was discontinued in 2013 because it failed to generate broad interest.)

The eye-contact issue

Doctors sometimes spend more time looking at the computer than at the patient during an appointment, which makes personal medicine much less personal, said Enid Montague, an assistant professor of engineering and medicine at Northwestern University. Strategies such as turning the screen toward the patient and discussing what’s being typed improve the interaction.

Computers can frustrate doctors. DeSalvo notes that some electronic health systems are still clunky — designed for billing, not caregiving. Doctors can feel burdened by documentation and making the best use of computers.

The possibilities of digital records are apparent with OpenNotes systems, in which patients can see not just lab results and tests but also the full notes their doctor made from a visit.

OpenNotes began in 2010 as a research project involving 105 doctors and 19,000 patients at three sites. Physicians initially worried that the open information would lead to confusion for the patients and more work for the doctors, but a study found that about three of four patients in the project reported feeling more in control of their care. They understood their conditions better and felt more likely to take medicines as prescribed. Now, nearly 5 million patients across the country have access to OpenNotes.
Much of the information collected in your annual exam can be generated by your smartphone, says cardiologist Eric Topol in his book “The Patient Will See You Now: The Future of Medicine Is in Your Hands.” His patients are proof: Many carry a small sensor they can put on their fingers that will transmit to their smartphones and produce cardiograms in an app.
“The willingness to accept technology is going to have an ever-increasing role, and we’re not going to lose the patient bond but we’re going to remodel it and make it better,” said Topol, director of the Scripps Translational Science Institute in La Jolla, Calif.

Smartphone as health hub

In his book, Topol catalogues a wide array of functions that a smartphone-as-hub can handle now or in the near future. Biosensors capture data including blood pressure, heart rhythm, respiration rate, glucose rate, brain waves and more. The selfie of the future will be medical imaging, including high-resolution ultrasounds or X-rays. The smartphone’s microphone can capture data about lung function or mood. Smartphones might also be able to track nanochips that would be embedded in the bloodstream to monitor tumor DNA or genomic signals of heart attack or stroke.
Seven of 10 of us track at least one health indicator such as weight or blood pressure, according to Pew Research. Thanks to self-monitoring technology, Gary Sullivan, the retired engineer, was able to identify a problem with his diabetes treatment. He had been part of a Kaiser Permanente pilot program that allowed him to connect his glucose monitor to his computer to generate data for his care management team and for himself. After he’d lost weight from a fall, Sullivan realized his readings seemed off. He contacted his care managers and quickly got his insulin readjusted.
“Having the technology side of it, loading it on the computer and seeing it on a graph is real positive reinforcement that we need to make a change,” Sullivan said.
Not every patient is interested in taking digital charge of his or her health. There are three kinds of patients, says Montague: those who view the health-care system as a manufacturing plant in which they’re just cogs going through; those who seek information and want to share in the planning; and those who want to drive the decisions themselves.
“It’s . . . not a silver bullet,” said the Permanente Federation’s Cochran. “Giving a patient a smartphone doesn’t automatically make them motivated. It’s not like a vaccine. It’s about how do they use it, what do they learn, what do they learn over time.”

A less formal relationship

With her patients seeking health information from so many sources, Seattle Children’s Hospital’s Swanson recognizes that her role has changed: “The role that the physician plays has to transform from teach and preach to really thinking about how do I curate health information for the family that is with me for less than 1 percent of their life,” she said
Sullivan likes his new relationship with doctors. “I don’t have this feeling like doctors are way elevated, and you just don’t ask them anything. . . . Now it’s more of a conversation mode with doctors,” he said. “It’s just a less formal relationship with the medical folks, and I think that leads to a much better situation.”

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TUESDAY'S TRAVELS...

...across the world of special needs and differences.  Our travels bring us several news updates today.  For example:

1] Research shows that prodigies and persons with autism share a genetic link:

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Researchers at Ohio State University and Nationwide Children’s Hospital have found a genetic link between people with autism and prodigies.
The link shows up as a marker on one of the 23 chromosomes humans have and could provide more clues about how autism and prodigy develop in children.
The finding could help scientists understand autism. And down the road, it could help geneticists understand how to block autism from manifesting in children.
“It suggests that there’s something we might want to look at,” said Christopher Bartlett, a co-author on the study and principal investigator at Nationwide Children’s Hospital in Columbus, Ohio. “It doesn’t mean it’s going to pan out.”
Their findings were published online last month in the journal Human Heredity.
Joanne Ruthsatz is lead author on the study and a psychology professor at OSU’s campus in Mansfield, Ohio.
She became curious about a potential link when she was interviewing prodigies and their families for a book coming out this fall. Prodigies are children who develop professional-level skills before they hit puberty.
Ruthsatz had been with a child prodigy at a McDonald’s near his home, and they’d run into the child’s aunt and first cousin. The child’s cousin had severe autism, she said. “I thought, ‘What is the chance of his first cousin having autism?'”
Prodigies typically have exceptional working memories and exceptional attention to detail, Ruthsatz knew, characteristics they share with some people with autism. She wondered whether the two conditions could be related.
So she interviewed other prodigies’ families and learned that autism had been diagnosed in many of the prodigies’ siblings or first cousins. That’s when she joined with Bartlett and other OSU researchers to study the families’ DNA.
Ruthsatz collected saliva samples from the prodigies, their relatives with autism and relatives who were neither prodigies nor on the spectrum. The research team tested the DNA and found that prodigies and their relatives with autism both have a marker on chromosome 1 that other relatives don’t have.
The researchers don’t know exactly what the marker is or what it means — this study was relatively small, covering only 11 families — but they are conducting a larger study now.
Ruthsatz said she wonders if something about the prodigy gene keeps autism from manifesting.
Bartlett said he hopes the study will encourage people with autism and their families.
“To me, the hope doesn’t necessarily come from the finding,” he said. “To me, the hope comes from the fact that the scientific community has not forgotten that people with autism need help and that research needs to be done in this direction.”

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2] Sadly, at the same time, many young people with autism are struggling right now:

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Young adults with autism are facing significant challenges after high school, a new report suggests, with many on the spectrum finding themselves unemployed, isolated and lacking services.
More than a third of those with autism don’t work or continue their education in their early twenties, a circumstance shared by fewer than 8 percent of young people with other types of disabilities.
Meanwhile, 26 percent of young adults with autism receive no support services at all.
The findings come from a report this week from Drexel University’s A.J. Drexel Autism Institute based on data collected in two nationally-representative government studies — the National Longitudinal Transition Study-2 and the Survey of Pathways to Diagnosis.
The 68-page National Autism Indicators Report paints a stark picture of a group of young people with little support.
Just a third of young adults with autism had ever lived apart from their parents and roughly 1 in 4 were socially isolated, having received no invitations for social activities within the past year, the report found.
Some 58 percent of those on the spectrum had worked for pay by their early twenties — a rate lower than individuals with other disabilities — and their jobs were typically part-time and low paying, the findings indicate. About a third engaged in postsecondary education.
Relatively speaking, however, researchers said that little is known about how adults with autism are faring and how to best meet their needs.
“While the picture looks bleak, we found that some of those who have the most significant levels of challenges do go on to find jobs and attend further education,” said Paul Shattuck, an associate professor at Drexel who worked on the report. “A critical next step is to figure out what facilitates connections to outcomes and what helps people to continue to succeed across their early adult years.”

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3] But if your child has autism, and if you are able to get some training, that might help with your child's behavior problems:

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Parents of children with autism could see vast improvements in behavioral troubles, including severe tantrums, if they learn and use techniques to help their children cope with the challenges of the disorder, according to new research.
The study, which was published online Tuesday in the Journal of the American Medical Association, is the largest randomized, multi-center study to analyze the impact of behavioral training.
The study included 180 families with children with autism 3 to 7 years old. Half of the kids’ parents were given one-on-one therapy, coaching and homework to help them learn behavior modification techniques.
Those techniques included such things as using timers to help children understand and respect rules and showing pictures to help them visualize positive behavior (such as using the bathroom properly).
The control group of parents received education only, which included information about autism without offering techniques to help manage undesirable behavior.
After the 24-week trial concluded, the researchers asked parents how things were going at home.
Disruptive behavior dropped by almost 48 percent in the training group and 32 percent in the education group, according to parent ratings.
An independent expert who evaluated the children (and didn’t know which group their parents were in) found that 70 percent of those in the behavior training group showed a positive response compared to 40 percent in the control group.
“These behavior problems are quite challenging to manage for parents,” said Luc Lecavalier, a professor of psychology and psychiatry at Ohio State University’s Wexner Medical Center who led the research there. The site was one of six U.S. medical centers that participated in the study.
“They’re also quite costly to society because a lot of resources go to managing these children,” he said.
Kerri Doyaga of Bexley, Ohio went through the parent training — which included at least 11 in-person training sessions, telephone follow-ups and two home visits — and said it led to profound changes for her son Benjamin, who is now 7 and in first grade.
“The classes were life-changing for us, not only for Ben but for my other two children. They gave me great skills,” Doyaga said. “It helped me to understand what he was going through.”
Ben’s frustration and tantrums turned around when Doyaga and her husband, Justin, learned how to help their son with techniques including using pictures to guide him through such things as getting dressed, she said.
They used to miss birthday parties or scrap plans to go to dinner when Ben would become upset. Now, they can go as an entire family and Ben enjoys himself, too, she said.
“He is like a different kid. We go to parties. We go out to dinner. We do everything,” Kerri Doyaga said. “We don’t even think twice where before we would have had a conversation about not doing this or splitting the family.”
Lecavalier said he and the rest of the research team were thrilled to see such a significant response in the intervention group as well as interest in the benefits reported by the control group. While that group didn’t learn about behavioral interventions, basic support and education about autism seemed to make a significant difference.
“The idea here was to teach the parents how to intervene instead of relying on more costly interventions that would be implemented by professionals,” he said.
“We talk about how to praise and reinforce a behavior or ignore inappropriate behaviors … then we teach parents how to maintain the gains and involve different caregivers.”
Lecavalier said there’s promise in finding a way to disseminate the training program and find an affordable way to make it widely available.

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But remember--autism is sometimes, but is by no means always, associated with Moebius Syndrome.

I JUST THOUGHT THIS WAS INTERESTING DEPT

Because certainly some (though not all) persons with Moebius Syndrome sometimes are a bit introverted, I thought I would share this--the 12 things all introverts wish you understood about them:

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Sympathetic articles, books and lectures aside, introverts -- or those with the so-called "quiet" personality type -- may still feel misunderstood in a society that champions extrovert traits like non-stop connectedness.

We rounded up expert insight and responses from The Huffington Post's social communities on the biggest sources of misunderstanding for introverts. Below are just a few things they wished everyone grasped about the personality type.


1. They don't hate a good party.
Introverts aren't a bunch of awkward killjoys who don't like to have a good time. In fact, many introverts enjoy going to parties if it means interacting with people who make them comfortable.
What can be so grating about large gatherings is the overstimulation and unsatisfying conversations. As Laurie Helgoe explained in her book, Introvert Power: Why Your Inner Life Is Your Hidden Strength, introverts feel exhausted by small talk and prefer more intimate conversations.
"Let's clear one thing up: Introverts do not hate small talk because we dislike people," she wrote. "We hate small talk because we hate the barrier it creates between people."
2. Craving downtime doesn't mean they're anti-social.
Introverts need time to recharge, but they still want to be with their friends after they've snagged that alone time. They're not anti-social; they're selectively social.
"Just because nine times out of 10, I decline your invitation, does not mean I want you to stop inviting me," said reader Carolyn Mae Ladas on Facebook.
3. They're not open books (and that's perfectly okay).
Introverts rarely spout off the first thing that comes to their minds. This quiet reflection is a hallmark characteristic of the personality type and is quite the opposite of their extroverted counterparts, who speak their thoughts affirmatively and quickly.
"I wish people could understand that I don't feel their need to over share every little detail of my life," said reader Claire May Sarlandie-Partiot on Facebook. "If I want to talk about it, I will. If I don't, don't push me. It will only make me close like an oyster."
4. Personal space is highly valuable to them...
Introverts are more likely to opt for the aisle seat rather than the middle to avoid being surrounded on all sides, HuffPost's Carolyn Gregoire previously reported. This allows them an opportunity to remove themselves from a situation in order to recharge if they need to.
5. ...But yes, they'll give you a hug.
You just have to ask them first. A comic designed by artist Roman Jones sums up an interaction with an introvert perfectly: Let them invite you into their "bubble."
6. Just because they're introverts doesn't meant they're shy...
Shyness and introversion are often used synonymously, but as introverts are quick to point out, they're not the same thing. Introverts don't always fear social settings, they just place value in more meaningful, smaller interactions -- and they're perfectly fine with remaining in that comfort zone.
"My shell is comfortable, and because I like staying there doesn't mean I'm shy," explained reader Jeremy Flowers on Facebook.
7. ...Or stuck up, for that matter.
A quiet demeanor does not equate to a haughty attitude. When introverts don't overly contribute to a conversation, it's usually because they're being more observant than participatory.
"Me being quiet has nothing to do with you. It doesn't mean I am being rude, it doesn't mean I am snobby... It's nothing I can control and though I am very aware of it, I can only push myself so far until I'm past uncomfortable [and] tolerable," said reader Brittany Pettus on Facebook, adding that she's even been called names for being quiet.
8. They don't want to be more outgoing.
Many people look at introversion as a character flaw, when in reality, introverts like their quieter demeanor -- and have no interest in changing.
"The cure for being an introvert is not to become an extrovert. Some of us would never want to be extroverts," said reader Lori Armstrong on Facebook.
9. They approach the workplace differently.
Introverts are typically averse to open office plans and sometimes can experience challenges navigating an ideal working environment. Finding quiet spaces, only attending crucial meetings and having routine check-ins with co-workers can help ease those office roadblocks, according to Susan Cain, author of Quiet: The Power Of Introverts In A World That Can't Stop Talking.
"I tend to shrink back in work meetings where multiple people are brainstorming out loud, but that doesn't mean I don't care about the topic being discussed or that I'm not paying attention," explained reader Marisa Hoheb Fedele on Facebook. "I just need some quiet alone time to mull over my thoughts before I present them to a crowd."
10. They're not the biggest fans of phone calls.
When looking for a technology-driven conversation, opt for a typed message (bonus: there's even a set of texting emoji on the horizon made specifically for the personality type). Out-of-the-blue phone conversations tend to feel intrusive to introverts, which may result in them screening your call.
"Talking on the phone can be a form of torture. I choose to engage via text or chat for a reason," said reader Cindy Spreg on Facebook. "Please don't take offense that I'll text you back rather than call you. It's not you, it's me!"
11. Surprise birthday gatherings are the worst.
Big parties where introverts are the center of attention = A big no-no.
"I do NOT want a large birthday party!" reader Jackie George explained on Facebook. "I'd much rather have my few close friends for a quiet evening of games, wine and conversation than have a room full of people I barely know centered around me. Ack!"
12. They have an intuitive nature.
Introverts tend to be in tune with their surroundings, and as a result they may pick up on subtleties of conversations and moods that their louder counterparts may not notice.
"Introverts are very observant," explained reader Cora Donnell on Facebook. "If we don't like your friends it's because we can see through their act."

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BECAUSE THE DIFFERENT ARE JUST AS VALUABLE DEPT

A girl born without feet.  A puppy born without a paw.  Now they are together and again reminding the world that those who are "different" are just as valuable:

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Sapphyre has been a patient at the hospital since she was just three months old.
"When I was seven months pregnant, they did an ultra sound and told us she may be missing some fingers and toes," her mother, Ashley Johnson said of the birth defect that also left the child missing fingers.
"They don't know what caused it," she added. "But she had just two really long toes on each foot. And when she was 1, we had them amputated so she could be fitted for prosthetics."
And Shriners, which provides specialty orthopedic services to children up to age 18 regardless of ability to pay, has offered to make a prosthetic foot for Lt. Dan as well when he's big enough, officials said.
"The first time I showed her a picture of the dog, she looked at it for a moment, and she said, 'That's my puppy. He's just like me,' " said Shriners child life specialist Elaine Hardin. "He's a special dog and he's going to a special child."
The dog will help Sapphyre make friends and explain her disability to other children, Hardin said.
"In the future, I could see Sapphy at her first show-and-tell in school and she could bring in her dog and explain about her dog and herself," she said. "Everybody loves dogs and they'll want to know about her dog that's special like her."
Lt. Dan will be someone for Sapphyre to talk to, to help her exercise and motivate her to move, she said.
Although on Monday, she didn't need much motivation to run around the Shriners playground with her new pup, calling out, "Lt. Dan, Lt. Dan."
After so much excitement, the pup, who will one day grow to be up to 90 pounds, fell asleep in the car as the family made their way back home to Tennessee.
"I think it's wonderful that she (Riddle) would want to do that for somebody," Ashley Johnson said. "We'll have a nice quiet evening just getting to know each other."

Lt. Dan might have met a different fate in other circumstances.
But his owner, Karen Riddle, knew the white German shepherd puppy born with just one front paw was meant for something special.
And on Monday, the nine-week-old found a new home with Sapphyre Johnson, a toddler who lost both feet.
"A lot of kids don't see other children or animals that have issues like they have," said the 3-year-old's father, Matthew Johnson, beaming as he watched his little girl toss a squeaky toy to the pup.
"This was a really nice thing," he said, "and a really good thing for Sapphyre."
Of the nine pups in the litter, Lt. Dan, named for the character in Forest Gump who lost his legs, was the only one missing a paw, Riddle said.
When other breeders suggested she put him down, she knew that was never a consideration. Many of her dogs have become therapy dogs or gone to people with special needs, she said.
Instead, the Greenville woman began looking around for special child or wounded veteran with whom the sweet bundle of fluff could find a home, and his special purpose.
"So I decided to call Shriners Hospital," said Riddle, whose father was a Shriner.

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ADVICE FOR MOEBIUS PARENTS AND OTHERS

Today, I've adapted a couple of advice columns that I thought those in our community would find helpful.

First:  do you feel overwhelmed?:

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How do I stop feeling so . . . small? I feel like I’m failing some “grown-up” test, overwhelmed with the children, aging parents, sick husband, workplace stress (I think I work with a bully), too little money, too many wants, and just fatigue.
Did our parents feel like this and I just didn’t get the memo that adulthood is this hard? Am I solely responsible for making my life different? Where do I start that?
I have this thought that I am supposed to stop bailing water long enough to find the leak, but I also think I might take the ship down if I slow down enough for that. And then I talk to other moms, wives, friends, and they have time to do things like watch TV, which sounds really blissful right now.

Well, I guess I found the time to get here, so life isn’t that draconian. But I’m finding it hard to move right now.
Feeling Small and Trapped
Caregiving on three fronts while also holding down a job is legitimately exhausting and scary.
Relief is out there: If your husband has a serious or chronic illness, chances are there’s a support group and possibly respite care. There are also services available on the “aging parents” front, via Eldercare.gov . If your kids are still young enough to need constant supervision, a mother’s helper in the form of a teenage neighbor who comes over an evening or two a week, for not much money, can be worth every scarce penny.
I know you’re looking for bigger answers here, and I have some: We’re all small, in the scheme of things. And, yes, our parents felt like this sometimes, though what overwhelmed them and how they sought relief were probably different. History and the present never want for examples of human hardship.
And joy, pushing up through the cracks.
Sometimes all any of us can do is keep taking small steps, small steps, small steps to get us through whatever (dirt) storm has parked itself over our heads, and accept relief where we can find it. We do get through, though — nothing you describe is permanent.

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Second:  what if you are overwhelmed...with grief?:

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Six months ago, a good friend died of cancer. Four months ago, my beloved dog died. One month ago, another good friend died of cancer. Four weeks ago, our beloved rescued-from-a-puppy-mill 3-year-old dog died from cancer. Two weeks ago, a much-loved close relative tried to commit suicide. One week ago, I found out I’m being laid off from a job I love and have been very good at for 16 years. I’m 60 years old, and the thought of looking for another job fills me with dread.
Yesterday, we had to have another elderly dog put down. I’m feeling overwhelmed.
I know these things happen to everyone. I tell myself that I’ve got a good life — we can live on my husband’s salary, our house is paid for, we have enough to eat, we won’t be destitute or even suffer much from the loss of my salary. My husband is wonderful and very supportive. But I can’t logic myself out of my grief.

How do you tell when grief becomes just feeling sorry for yourself? A week for a dog, a month for a friend, a couple of months for your career? How do you make it go away?
Grieving
I’m so sorry. That is a staggering number of losses in a short period of time. Of course you’re reeling.
You don’t “make” grief “go away,” though. In my experience, at least, it doesn’t work that way — and the idea of a set time to feel bad (and its companion idea, that there’s a time past which you aren’t supposed to feel bad) is anathema to grief.
It’s more like weather, where you just experience it until it eventually passes . . . and you know it’s going to come back sometimes when you least expect it. It’s perfectly normal, and healthy, to feel a wave of grief out of nowhere years after a loss. Not only will some part of you always miss a lost companion, you will also always remember the pain of a death. Not every waking minute, but when you’re reminded somehow, sure. Or just when your brain decides to go knock-knock, remember this?
It seems you’ve been going this alone, armed with logic and an inclination to be rather hard on yourself. While grief is something you do feel and deal with individually, you can work through it collectively. A grief support group might be just what you need, a place to feel that it’s normal, and not your fault, to be filled with dread. Your husband sounds understanding and patient; consider taking his cue and being more patient with yourself.


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INSPIRATIONAL STORY OF THE DAY

Meet Mui Thomas.  She does not have Moebius Syndrome; but she was born with a condition which leaves her with a very obvious physical difference.  But she shares much in common with us--she does not let her condition stop her, and she has many important lessons to teach.  Read more about it:

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When she was growing up, Mui Thomas, wanted to be a fashion model -- not an unusual aspiration for a young girl.

But Mui suffers from a rare genetic condition that leaves the skin on her face and body red raw and open to infection.

"I really don't think I knew that I didn't look like everybody else," she says.

She was born with Harlequin ichthyosis, which means her skin is extremely thick, dry and flaky -- resembling fish scales. She can't sweat but she can shed tears.

On the day we speak, her appearance raises few eyebrows at her local Starbucks in Sai Kung -- she's a familiar and well-known presence in the waterfront Hong Kong town where she grew up.

Mui's struggle to come to terms with her condition and other people's reactions to it has, at times, left her on the brink of suicide.

But, now 22, she refuses to let it get in the way of her life -- she has a full-time job, plays sport and is embarking on a career as public speaker -- educating and inspiring others about the challenges of looking "visibly different."

Long to live?

After she was abandoned at birth, long-time Hong Kong expats Tina and Rog Thomas began fostering Mui, when she was just one and a half years old. They were told she didn't have long to live.

"We wanted to give her a family life in the time she had," says Tina.

However, Mui began to thrive in a loving family environment and Tina and Rog formally adopted Mui when she was three years old.

Together they gradually learned how to manage her skin condition.

Each day she bathes twice, ideally for two hours each time, and everywhere she goes she carries a backpack with three or four tubs of cream that she must apply throughout the day to stop her skin from drying out.

She's thought to be the fourth oldest person alive with harlequin ichthyosis. The oldest is 31.

But while Mui's unusual appearance made little difference during her early years, that changed when she started secondary school.

The school she attended required that she be accompanied by a educational assistant, which put up a barrier between her and the other children and made it difficult for her to make friends.

Things got worse when she became a victim of cyberbullying. She began to deny her appearance, stopped bathing, taking her medication and applying the cream. At times, she considered jumping from the balcony of her home.

"They'd say things like 'You shouldn't have been born' -- and very personal things that only people who knew me would know," she says.

"It made me very wary of everybody. Even when people tried to be nice, I didn't repay it. I didn't trust them."

The worst episode lasted for 10 months and only stopped after police became involved and found the bully -- someone whom Mui thought was her friend.

Mui left school with no qualifications.

She says the school didn't push her to study and made too many allowances for her skin disorder.

"I still wish I had got a very hard kick up the backside from the teachers when I wasn't doing work," says Mui.

Inspiration?

Since leaving school, Mui has found a full-time job working with people with special needs and at weekends can be found running around a rugby pitch with a whistle -- she's a referee for kids' matches.

Along with her parents, she's also begun speaking about her experiences of living with a "visible difference" and cyberbullying at schools around Hong Kong. Her father has also written a family memoir called "The Girl Behind the Face."

Many have found her story inspirational -- a real life version of the young adult novel "Wonder" by R.J. Palacio about a young boy with a deformed face who enters middle school.

On Saturday, she will graduate from school assemblies and speak in front of a paying audience at a TEDx talk in the city.

Her father is both protective and proud. He thinks public speaking will help Mui come to terms with her condition but he's also wary that she could be portrayed as a "modern freak show."

"It's difficult for her because she spent so long denying it. The more she confronts it, the more she is aware of it -- it will build confidence," he says.

There's even talk she might take part in a fashion show for people with visible difference, realizing a childhood dream.

In person, Mui comes across as articulate, poised and confident -- something her mom says comes out of spending so much time with adults while growing up -- and it's easy to see how she could command an audience of hundreds.

But after two hours of chatting in a coffee shop, she's a little bored and keen to get back to her job. She flings her backpack over her shoulder and dashes off into Hong Kong's crowded streets.

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AWARENESS UPDATE

There are several items in the news today that either highlight growing awareness of persons with physical and other differences...or that highlight the lack of same. 

First:  there is evidence that, sadly, doctors sometimes too-easily dismiss parents' autism concerns (autism is sometimes associated with Moebius Syndrome):

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Pediatricians often fail to take seriously parent concerns about autism, new research suggests, sometimes delaying children from receiving a diagnosis and treatment for years.

In a study looking at the experiences of children diagnosed with autism as compared to those with intellectual disability and developmental delay, researchers found that doctors were 14 percent less likely to take a proactive approach when families cited concerns about autism.

Rather than refer children to specialists or for developmental testing, the study found that pediatricians often reassured parents worried that their child might be on the spectrum or indicated that their child “would grow out of it.”

“This study implies that the behavior of health care providers is likely a very important factor in delayed autism identification,” said Katharine Zuckerman of Oregon Health & Science University who led the study published online this week in The Journal of Pediatrics.

For the study, Zuckerman and her colleagues looked at data from a nationally-representative survey of parents of 1,420 children with autism and 2,098 kids with intellectual disability or developmental delay.

Parents of those later diagnosed with autism said they expressed concerns to their health care provider about their child’s development around age 2, a whole year earlier than moms and dads of kids with other delays. Nonetheless, among families surveyed, children with autism were not diagnosed until age 5, on average, even though kids with the developmental disorder can generally by identified by age 3.

Significantly, the study found that children whose doctors were passive about initial autism concerns waited as much as two years longer to be diagnosed as compared to those whose health care providers were immediately proactive.

“We know that early identification of ASD is beneficial to children and their families. Unfortunately, many families experience long delays between when they first have concerns and when their child gets diagnosed with ASD,” Zuckerman said.

The findings, researchers said, indicate that doctors may need more education and training to better respond to parent concerns related to autism in particular.

Currently, the American Academy of Pediatrics recommends that doctors conduct developmental screening at 9, 18 and 30 months with all children as well as autism-specific screening at 18 and 24 months.

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But there are also positive notes.  For example, ESPN and ABC will this summer air the Special Olympics:

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For eight days this summer, some of the world’s top athletes with intellectual disabilities will be featured on national television.

ESPN said this week it will air coverage of the Special Olympics World Games in Los Angeles across its networks.

The event’s opening ceremony will be broadcast live on ESPN co-hosted by Robin Roberts from ABC’s “Good Morning America” and ESPN’s Lindsey Czarniak and Kevin Negandhi.

Subsequently, ESPN, ABC or ESPN2 will air daily coverage of the weeklong event including features and key results from the competition. A “best of” special recapping the World Games will also be broadcast over two days a week later.

“The Special Olympics World Games is a truly compelling event, filled with some of the most extraordinary sports stories and people you will ever see, and we are looking forward to showcasing them,” said Russell Wolff, executive vice president of ESPN International. “Sports has the power to be unifying, uplifting and life-changing, and this event will be a remarkable and tangible example of that power.”

Previously, ESPN provided more limited online coverage of the 2011 Special Olympics World Games in Athens, Greece.

The Los Angeles games are expected to bring together some 7,000 athletes and 3,000 coaches from 177 countries in addition to 500,000 spectators for the event July 25 to August 2.

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And finally:  did you know that Masters' winner Jordan Spieth has a sister with special needs?  The newest winner of the Green Jacket was only too happy to talk about her:

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Basking in the glow after becoming the second-youngest player ever to win one of golf’s top prizes, Jordan Spieth was all too happy to talk about his sister with special needs.

Over the weekend, Spieth soared over golf’s better-known names to win the Masters with a score of 18 under par. The feat quickly put the 21-year-old in the same sentence with the sport’s longtime star, Tiger Woods, who also won the tournament at that age.

After sealing his victory at the famed Augusta National Golf Club in Augusta, Ga., Spieth looked forward to telling his sister Ellie, 14, who is on the autism spectrum, about his win. The younger Spieth didn’t make it to Augusta for the Masters, but did get to see her brother play at the Houston Open earlier in the month.

“She’s just going to be happy that I won,” Spieth said. “She was out there in Houston and after each round, she said, ‘Jordan did you win, did you win?’ I said ‘not yet, not yet’ and then ‘no.’ So I can tell her I won now.”

The comments came in between questions about everything from his performance at the Masters to the future of golf.

It’s not the first time, however, that Spieth has opened up about his relationship with his sister.

“Being Ellie’s brother humbles me every day of my life,” the golfer says on his website.

And Spieth’s mom, Chris Spieth, credits her daughter’s challenges with keeping the golf champion grounded.

“Jordan wouldn’t be where he’s at today if he didn’t grow up with Ellie,” his mom, Chris Spieth, told ESPN. “Jordan realizes this isn’t real life at the Masters. Trying to sit around and have dinner when his sister doesn’t want to eat when everybody else is eating and has a fit, that’s real life.”


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I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT: 10 TRUTHS FOR SUCCESS AND SATISFACTION

Because who doesn't want that?  Read more about it:

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The two things most people search for in life are simple. People desire happiness and to feel satisfied with their lives. There are simple truths which can be applied to everyday life which guarantee greater success and that deep sense of personal satisfaction you yearn to experience in your life and career.

1. Just Do You: Be yourself. Let the results of your life be a reflection of your boldness to express your freely. Take care to exercise your own ideas, your free will and independence. Live from your individual uniqueness and the willingness to be different than others.
Your authenticity is that place within you that is true and secure enough to withstand the external destructive pressures that come from life.
When you are true to yourself and passionate about your life and career, you see choice rather challenge. Your genuine qualities are not set up on false pretenses because whatever path you choose in life is completely congruent with who you are.
2. Be Candid: There is nothing of greater significance to offer your life or business than honesty. To understand why being truthful is important examine how anyone, including yourself, benefit from dishonesty.

The one thing you cannot afford to lose in life is your reputation. Once your reputation is lost, based upon dishonesty, it is nearly impossible to recover it.
Living from the truth allows you to build relationships based in trust with loved ones, colleagues, competitors, staff, and customers. Those around you become energized by your candor inspiring them to want to progress their business and personal relationships with you forward.
3. Push yourself: In order to make the most of your life and career, challenge yourself. You cannot fulfill even a fraction of your dreams by sticking to the comfortable and secure. Where there is security there is nothing forcing you to rise to the occasion of maximizing the potential of who you are.
Challenge yourself to always be in pursuit of something which will stretch you. You have to have that "thing" that will make you wonder if you can actually achieve it. That elusive "thing" provides you the opportunity to engage in life, and in yourself, in ways that being secure and comfortable do not.
The more you push yourself and flourish, the greater your confidence becomes to push yourself again and again. Challenge not only helps you grow your skills and knowledge, it helps you develop belief in your capacity.
4. Put love first: The significant people in your life are those who genuinely feel for and worry about you. These are the individuals who will always be there, to fall back upon, when you have been disappointed by life.
The people who love and accept you, with your mistakes and weaknesses, and do not need you to be different are those who bring the most value to your life. They help refuel your belief in yourself when you cannot.
There is no amount of financial gain that could ever substitute for the love these individuals offer you. They bring a sense of connectedness and belonging which serve to make your life happier and more fulfilling. Those who do not value their loved ones are less well-rounded, less happy and less motivated and successful in life. Do not let this be you.
When you die you are not likely to wish you had worked more, you are likely to wish you had had more time with those you loved deeply.
5. Show Kindness: Treat all of those you interact with, with a sense of dignity and value. When you can make another person feel significant they will be motivated to stay in that perception in your mind.
Being thoughtful of others doesn't make you a push over. Thoughtfulness is that indistinguishable quality of being emotionally intelligent in all your exchanges. When you treat others with openness, kindness and respect you retain a calm power to stay rational and present in your communications.
Keep in mind that anger is never useful in relationships, personal or professional, as it is nearly impossible to respect an angry person. Anger doesn't wear intelligently on anyone.
6. Practice tolerance: Be mindful of others in the ways you expect others to be mindful of you. Practice tolerance and acceptance to bring a sense of peace to your life and world at large. Let go of small-mindedness, bigotry, belittling others, and being self-righteous.
Tolerance is an essential quality to possess. Think about who you are in the global world, or in the wholeness of life, and what you want your impact to be. Strive to be that bigger person.
Be open-minded to learning from all types of people and their differing beliefs, as you never know what type of person holds your next biggest opportunity in their hands.
7. Exercise Patience: Knowing the difference between patience and waiting is key to a successful life and career. Patience does not entail waiting. Waiting is action-less. When you practice patience you never stop working towards your dreams, even when you do not yet see results.
If you are waiting without working, you have stopped. When you are passionate there is no amount of work that you will cease doing if you see it as bringing you closer to your goals.
Patience means believing enough in what you have set out to achieve to keep going.
8. Fulfill your dreams: Do not just follow your dreams, you must fulfill them. Make each wish into a manifested destiny. Work towards your passions with consistency, precision and commitment.
Living your dreams is the stuff a well-live life is made of. What you pursue passionately will bring you a life of vitality, excitement and the joy that you deserve.
Your dreams and passions bring deeper meaning into your life and into the lives of others. When you live your dreams you become inspiring. You instill in others the belief that if it is possible for you then it can also be possible for them.
9. Practice gratitude: When you have a grateful heart your positive emotions become stronger, decreasing your negative emotional experiences of envy, victimology and jealousy. Gratitude makes your memories more positive and is a great catalyst in helping you to bounce back quickly from stress.
An attitude of gratitude helps you achieve life and career goals making your personal and professional lives more loving, productive and enjoyable places to be for you and everyone you touch.
10. Remain humble: Work quietly and allowing your success to do the talking. Humility is based in internal reflection, yet, when it comes to where you choose to focus your time and energy, it is all about other people for you.
In being humble you are not self-focused or worried about your image, which gives you more courage to risk and try new things. You are not compelled to try and be perfect because you are not stuck on expectations. This frees you from the paralysis of fearing failure because it is not your main concern.
When you are humble you approach life with openness and flexibility. You are not oppressed by the search for happiness or success, for yourself alone, because your main focus is not about trying to be either successful or happy. Instead you are caught up in projects, passions, people and things you consider bigger and more important than yourself and from this you end up with more happiness and success, as a simple byproduct.
The surest path to becoming happy and successful in life is in the helping of others to achieve the happiness and success they desire.
To experience happiness and that deep sense of well-being and satisfaction with who you are, what you are doing, and who you still desire to become you must contemplate daily on what it means to be authentic. You must be committed and deliberate in your search to challenge yourself, to face fears, to be good to others and to be the conscious creator of the wholeness of your overall life experience.
Sherapy Advice: Live these 10 truths as a daily meditation to practice and master.
Follow Sherrie Campbell, PhD on Twitter: www.twitter.com/Dr_Sherrie

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AWARENESS UPDATE: ANGELINA JOLIE SAYS--DIFFERENT IS GOOD

And that's something that we with Moebius Syndrome can get behind.  Let's face it:  out in the world, that's how many people are going to see us.  And that's okay.  We can embrace it!  Because being "different" is good.  You're just as valuable as anyone else.  That's the message that we and others need to keep putting out there.  Had you heard that Ms. Jolie had said this?  She did so in a speech last month.  Good for her; and below you can read more about it:

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Angelina Jolie took the stage Saturday at Nickelodeon's 28th Annual Kids' Choice Awards and delivered a message of hope to anyone who's ever felt out of place.

In her first public appearance since revealing that she underwent a second preventive surgery to lower her risk of cancer, Jolie attended the show with her children, Shiloh and Zahara.

She hugged them before she went to the stage to accept the favorite villain award for her role as Maleficent in the live-action reimagining of "Sleeping Beauty."

"When I was little, like Maleficent, I was told that I was different. And I felt out of place -- too loud, too full of fire, never good at sitting still, never good at fitting in," the 39-year-old actor and humanitarian said.

"And, then one day I realized something, something that I hope you all realize: Different is good," she said, prompting enthusiastic screams from the young crowd.

"And, as your villain, I would also say cause a little trouble -- it's good for you."

Angelina Jolie delivers empowering speech at Kids' Choice Awards

Angelina Jolie delivers empowering speech at Kids' Choice Awards 5 photos

Actress Angelina Jolie hugs her children Zahara Marley Jolie-Pitt, left, and Shiloh Nouvel Jolie-Pitt, right, after winning the award for favorite villain in "Maleficent" during Nickelodeon's 28th Annual Kids' Choice Awards at The Forum on Saturday, March 28, in Inglewood, California. Click through for more pictures of Jolie at the awards:

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Angelina Jolie delivers empowering speech at Kids' Choice Awards 5 photos

Jolie walks to the stage to accept the award. Of her role in "Maleficent," critic Matt Zoller Seitz wrote on RogerEbert.com: "Jolie has never gotten the credit she deserves as both an old-fashioned glamorous movie star and a skilled, thoughtful actress; this part fuses both sides of her talent."

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Angelina Jolie delivers empowering speech at Kids' Choice Awards 5 photos

Jolie shared her message to the children to make their mark: "As your villain, I would also say cause a little trouble -- it's good for you." Queen Elizabeth II recently made Jolie an honorary dame for her campaign to end the scourge of sexual violence in war zones.

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Angelina Jolie delivers empowering speech at Kids' Choice Awards 5 photos

Jolie recently made news when she had surgery to remove her ovaries and fallopian tubes to reduce her cancer risk.

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Angelina Jolie delivers empowering speech at Kids' Choice Awards 5 photos

Zahara Jolie-Pitt, left, their mom and Shiloh Jolie-Pitt take in the sights and sounds of the Nickelodeon show from the audience.

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Jolie's career has been full of unconventional twists and turns, from her breakthrough role in the biopic "Gia" to her current role as an actor, filmmaker and special envoy of the U.N.'s High Commissioner for Refugees.

Her personal life also has made front page headlines over the years, including her adoption of children from developing countries and her candor in discussing her health.

Jolie, 39, wrote Tuesday in a New York Times essay that she had opted for the surgery after blood tests revealed markers that might have been an indication of early cancer.

Two years ago, she underwent a double mastectomy for similar reasons. Jolie's mother died of ovarian cancer, and the actress has a gene mutation that makes her chances of developing breast cancer and ovarian cancer much higher than the overall population.

Jolie's revelation provoked an outpouring of support as the news spread across social media.

"It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power," she wrote.

 

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A REMINDER ABOUT THE VALUE OF SERVICE DOGS AND THERAPY DOGS

Did you know that anyone with a disability or with physical special needs can qualify to acquire a service dog?  That includes some persons with Moebius Syndrome.  It's true, and I have blogged about that in the past---for example, check this out.

And it is always helpful then to be reminded of how valuable service dogs and therapy dogs can be.  Here's a good recent story that lays this out--read on:

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A 6-year-old Portuguese water dog named Moxie has shed light on the furrier side of medicine - providing a dog's-eye view of her job as a therapy dog as she cuddled with patients and staff.

On a recent visit, Moxie's owner set her up with a GoPro as she took her weekly Thursday tour at the Hospital for Sick Children in Toronto.

Owner Carolyn Robinson said Moxie always knows who needs the most help when she enters the hospital room going from patient to caretaker to medical staff.

"[She is] touching the lives of so many patients and children, "said Robinson. "Being able to alleviate [stress]…animal therapy is all the benefits of chocolate minus the calories." 

Moxie may not technically be part of the medical treatment, but Robinson said the dog can help increase endorphin levels and even help children on the road to recovery after surgery. In certain cases, Robinson and staff can get children on their feet to go for a "walk" with Moxie.

"I’ve had nurses say to me, 'We tried absolutely everything to get this child out of bed and then Moxie came along and the child got out of bed and walked [the dog],'" Robinson said.

Moxie had to go through extensive training so that she remains calm in all situations and is groomed before every visit to the hospital. Robinson said Moxie seems to take her duties as a therapy dog very seriously.

"When that uniform is on her, she is right by my side," Robinson said. "She is on duty. She knows she is there to give her love." 

After a long day's work, Robinson said she can tell Moxie is tired out.

"After her day is done, she’s quiet," said Robinson. "She’s content…she loves what she does."

Moxie was able to start visiting the hospital thanks to the PetSmart Paws for Hope Program at the Hospital for Sick Children.

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Be sure and go to the original link to this story above; there are some great pictures and videos.

BRAIN TALK DEPT AND I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT

You know, Moebius Syndrome has a lot to do with the brain.  The reason we have at least partial facial paralysis, after all, is because two of our nerves from the brain to the face don't work as we'd like them to.  So we're always interested in this space about how the brain works, and the article below gets into that question.  Plus--I just thought it was interesting (of course!).  So read on--are our brains really as good at multi-tasking as we think they are???  The answer might surprise you:


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Our brains on multitasking aren't nearly as good as we think they are. Let's say you're working on an activity over here, on the right side of the brain, and suddenly you're trying to multitask another activity, like talking on the phone.

You're not actually doing both activities at the same time, in fact, you're now diverting your attention from one part of your brain to another part of your brain. That takes time, that takes resources, that takes brain cells.

What happens on the other side of the brain is that you're starting a brand new activity, so in fact you're probably slower and not nearly as good at doing both activities at the same time.

We can shift our focus really fast, sometimes it takes just a 10th of a second. But the time doesn't matter as much as the bandwidth the brain requires to move back and forth. Now that might affect your performance, and might also affect the quality of the work that you finally produce.

Take an everyday activity like driving. When you look at the MRI of someone who is in driving mode, see how much of their brain is activating there? Now if you just layer in one more thing—if person is listening while they are driving—and all of a sudden the amount of attention, the amount of brain bandwidth going toward driving decreases by about 37%. So you're not multi-tasking, you've in fact reduced the amount of attention you're now paying to your driving.

There's about 2% of the population that are super multitaskers. It's sort of a genetic gift. Most of us don't have this gift. But these are people who are truly able to do several different activities at the same time without losing efficiency or losing quality as they do all that work.

This may or may not surprise you, depending on your perspective, but there have been studies that show women are generally better at multitasking than men. Also, people who thought they were the best at multitasking are almost always in fact the worst. Perhaps they were multitasking too much when they thought they were good at multitasking.

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