If one has Moebius Syndrome, one might--though by no means will this always be true, not at all--also have autism. So the two pieces below are good news, as it is always good news when companies and institutions show more awareness and value to those with physical and other differences:
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First, we have this piece concerning Microsoft:
The launch of a new pilot program positions Microsoft as the latest corporate
giant looking to tap the employment potential of those on the spectrum.
The company says plans are underway to hire individuals with autism for
full-time positions at its Redmond, Wash. headquarters.
Microsoft said it will work with Specialisterne, a nonprofit that focuses on
helping people with the developmental disorder apply their talents to work in
the technology field, to facilitate the hiring effort.
Initially, the program is expected to include about 10 people with autism, a
Microsoft spokeswoman told Disability Scoop.
“Microsoft is stronger when we expand opportunity and we have a diverse
workforce that represents our customers,” wrote Mary Ellen Smith,
Microsoft’s corporate vice president of worldwide operations, in a blog post
announcing the pilot program. “People with autism bring strengths that we need
at Microsoft, each individual is different, some have amazing ability to retain
information, think at a level of detail and depth or excel in math or code.”
Smith, who has a 19-year-old son with autism, said that Microsoft already
works with its vendor partners to employ people with disabilities in supported
employment situations for roles in event services, transportation and food
services. Though the new pilot program is focused on autism, Smith said
Microsoft is “passionate about hiring individuals of all disabilities.”
Microsoft is not the first technology company to actively hire people with
autism. SAP, a Germany-based software giant, has worked with Specialisterne to hire those on the spectrum in
the United States and abroad.
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Then, there's this concerning the United Nations and one of its recent statements:
The leader of the United Nations is calling on businesses around the world to
step up and do their part in employing people with autism.
U.N. Secretary-General Ban Ki-moon is launching a “call to action,” urging
employers to make “concrete commitments” to hire those on the spectrum.
“We encourage public offices, corporations and small businesses to have a
closer look at the way they perceive people with autism, to take the time to
learn about the condition and to create life-changing opportunities,” Ban
said.
The announcement came Thursday during events at U.N. headquarters in New York
to mark World Autism Awareness Day.
As part of the call to action, employers are being asked to
commit to a quantifiable increase in the proportion of their workforce that is
comprised of individuals with the developmental disorder.
“People with autism have enormous potential,” Ban said. “That is why it is so
important for companies to understand their unique and often exceptional skills,
and to enable work environments where they can excel. This requires appropriate
vocational training and adequate support alongside a recruitment process that
can allow people to successfully integrate into workforces around the
world.”
U.N. officials say they plan to recognize businesses that pledge to increase
employment of those on the spectrum during next year’s autism awareness day
activities.
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This is a site first of all about Moebius Syndrome. But it is also a site about having a facial difference in general, about living with it, about succeeding, and about life. We'll talk here about things directly related to Moebius Syndrome and facial difference, about things tangentially related to it, and about my comments concerning any and all of it.
Wednesday, April 8, 2015
Tuesday, April 7, 2015
FOR MOEBIUS MOMS AND DADS AND ALL MOMS AND DADS: YOUR FEARS?
Sometimes, for the sake of the kids, we have to get over them. I thought this was interesting, and true--read on:
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“Mommy doesn’t like ponies,” my husband said, laughing. “That’s not true,” I quickly said. My 2- and 4-year-old sons looked at me accusingly. “What Daddy means is that I don’t like them, I love them.”
My husband laughed out loud as we ushered our sons towards the corral.
We were at a 2-year-old’s birthday party at an animal farm and petting zoo. The kids had already hand-fed the alpacas, bottle-fed the baby goats. They’d visited the zebras, giggled as the camels spit. The birthday girl led the charge in petting the bunnies. Now it was time for the highlight of the birthday party, the thing all of the children looked forward to: the pony rides.
These parties are always a huge challenge for me. It’s not because of the smell and it’s not because of the cleanliness of the pens (or the lack thereof). The reason why—and the thing I don’t want my kids to know—is that I’m afraid of animals.
I was spending the summer in Nice, France on a study abroad program sponsored by my law school. As we racked up credits in international law, the students were also allotted long weekends to explore Europe. I should never have agreed to split up from my friend. We were told to travel in pairs, cautioned that running around Europe as a young single American woman was unsafe, bad things could happen. We could get robbed, we could get abducted, never to be heard from again. Our passports could get stolen. But we were only in Florence for two days, and my friend Reesa had already been to the Ufizzi and I was dying to go. The plan was simple—we’d part ways for an hour, and then meet back up at a little outdoor café in the Piazza della Signoria for cappuccinos.
In hindsight, I think I was being targeted by pickpockets, notorious in that touristy part of the city. They saw me split up from Reesa and figured I’d be halfway through the Botticellis and the da Vincis before I even realized my wallet and passport were gone.
It was a big push. I didn’t see who did it, but I felt a huge force smash into my shoulder from the left. I lost my footing, lurching towards the right. A horse drawn carriage was next to me, waiting for tourists. When the horse saw me barreling towards him, he opened his mouth wide and drew his teeth down on my arm. That’s the part I recall most about the incident—the part I can still see in my nightmares—this massive creature, head thrown back, lips parted wide, showing a seemingly endless array of gigantic teeth, coming towards me in attack.
It was just a love tap, I think. I’m certain that the horse could have taken off my arm if he wanted to. But it was a gentle warning. He was telling me that he was scared, and that I should get out of his space. You often hear people say good-naturedly: the animal is probably more scared of you than you are of him! But that was not the case. I was very much more afraid of him than he was of me.
I am not what you would call an animal person. I’ve always been terrified of them. Ever since my brother ran away from a neighbor’s dog, only to have the dog chase him down the street and then leave him with an enormous scratch down his back—a nasty wound that took weeks to heal—the message has been clear to me: don’t get too close. Don’t get them angry. Animals, even a beloved family pet, can hurt you.
After the horse bit my arm, I fell to the ground. My backpack flew off my shoulder. A crowd formed. A few people came to my aid, in languages I couldn’t understand, and a kind person returned my backpack. The owner of the horse yelled at me in Italian. I was utterly alone in a city where I didn’t know anyone, in a country whose language I couldn’t speak. I didn’t have a cell phone. I didn’t have anyone I could call, anyway. The only thing I could do was to wait for Reesa to return.
I made my way to the little outdoor café, ordered cappucino, and counted the minutes until she got back, silent tears escaping from my eyes as I tried to hold them back. By the time Reesa found me, I’d regained my composure, but seeing her and then having to re-live the story made me cry hysterical tears. She examined my arm, the horse bite hadn’t really broken the skin, but an angry bruise was taking shape. I never made it to the Uffizzi. With my fear of animals finally justified, rationalized, I vowed to never get near another one again.
But years later, I had children. Holding these tiny humans in your arms makes you realize something: you want them to be different from you in all the best ways. You don’t want them to have the same fears that you do, you want them to live a better life, a happier life than you do. I was adamant that my kids would not be afraid of animals the way I was. They would love puppies and kittens and bunnies just the same as any other normal kid. They would not be scared. And they certainly could never know that I had been bitten by a horse.
So, on the day that we found ourselves at an animal farm and petting zoo, I had a choice to make. I could let my own fears take over. I could tell my sons that I was afraid of the horses, I could tell them about the bite, and we could go home. But I didn’t. Instead, I had them stand in line with all of their friends and get ready for their first pony rides. My husband helped get them up into the saddles and instructed me to take pictures from afar. Very far. I got great shots of each of my children as they proudly took the reins and smiled for pictures. I stood behind the fence as the kids began their rides, and when the ponies made their way towards me, rounding the edge of the track, I backed the hell away.
Janowitz is a writer whose fifth novel “The Dinner Party” will be published by St. Martin’s next year. You can find her at BrendaJanowitz.com or on Twitter @brendaJanowitz.
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“Mommy doesn’t like ponies,” my husband said, laughing. “That’s not true,” I quickly said. My 2- and 4-year-old sons looked at me accusingly. “What Daddy means is that I don’t like them, I love them.”
My husband laughed out loud as we ushered our sons towards the corral.
We were at a 2-year-old’s birthday party at an animal farm and petting zoo. The kids had already hand-fed the alpacas, bottle-fed the baby goats. They’d visited the zebras, giggled as the camels spit. The birthday girl led the charge in petting the bunnies. Now it was time for the highlight of the birthday party, the thing all of the children looked forward to: the pony rides.
These parties are always a huge challenge for me. It’s not because of the smell and it’s not because of the cleanliness of the pens (or the lack thereof). The reason why—and the thing I don’t want my kids to know—is that I’m afraid of animals.
I was spending the summer in Nice, France on a study abroad program sponsored by my law school. As we racked up credits in international law, the students were also allotted long weekends to explore Europe. I should never have agreed to split up from my friend. We were told to travel in pairs, cautioned that running around Europe as a young single American woman was unsafe, bad things could happen. We could get robbed, we could get abducted, never to be heard from again. Our passports could get stolen. But we were only in Florence for two days, and my friend Reesa had already been to the Ufizzi and I was dying to go. The plan was simple—we’d part ways for an hour, and then meet back up at a little outdoor café in the Piazza della Signoria for cappuccinos.
In hindsight, I think I was being targeted by pickpockets, notorious in that touristy part of the city. They saw me split up from Reesa and figured I’d be halfway through the Botticellis and the da Vincis before I even realized my wallet and passport were gone.
It was a big push. I didn’t see who did it, but I felt a huge force smash into my shoulder from the left. I lost my footing, lurching towards the right. A horse drawn carriage was next to me, waiting for tourists. When the horse saw me barreling towards him, he opened his mouth wide and drew his teeth down on my arm. That’s the part I recall most about the incident—the part I can still see in my nightmares—this massive creature, head thrown back, lips parted wide, showing a seemingly endless array of gigantic teeth, coming towards me in attack.
It was just a love tap, I think. I’m certain that the horse could have taken off my arm if he wanted to. But it was a gentle warning. He was telling me that he was scared, and that I should get out of his space. You often hear people say good-naturedly: the animal is probably more scared of you than you are of him! But that was not the case. I was very much more afraid of him than he was of me.
I am not what you would call an animal person. I’ve always been terrified of them. Ever since my brother ran away from a neighbor’s dog, only to have the dog chase him down the street and then leave him with an enormous scratch down his back—a nasty wound that took weeks to heal—the message has been clear to me: don’t get too close. Don’t get them angry. Animals, even a beloved family pet, can hurt you.
After the horse bit my arm, I fell to the ground. My backpack flew off my shoulder. A crowd formed. A few people came to my aid, in languages I couldn’t understand, and a kind person returned my backpack. The owner of the horse yelled at me in Italian. I was utterly alone in a city where I didn’t know anyone, in a country whose language I couldn’t speak. I didn’t have a cell phone. I didn’t have anyone I could call, anyway. The only thing I could do was to wait for Reesa to return.
I made my way to the little outdoor café, ordered cappucino, and counted the minutes until she got back, silent tears escaping from my eyes as I tried to hold them back. By the time Reesa found me, I’d regained my composure, but seeing her and then having to re-live the story made me cry hysterical tears. She examined my arm, the horse bite hadn’t really broken the skin, but an angry bruise was taking shape. I never made it to the Uffizzi. With my fear of animals finally justified, rationalized, I vowed to never get near another one again.
But years later, I had children. Holding these tiny humans in your arms makes you realize something: you want them to be different from you in all the best ways. You don’t want them to have the same fears that you do, you want them to live a better life, a happier life than you do. I was adamant that my kids would not be afraid of animals the way I was. They would love puppies and kittens and bunnies just the same as any other normal kid. They would not be scared. And they certainly could never know that I had been bitten by a horse.
So, on the day that we found ourselves at an animal farm and petting zoo, I had a choice to make. I could let my own fears take over. I could tell my sons that I was afraid of the horses, I could tell them about the bite, and we could go home. But I didn’t. Instead, I had them stand in line with all of their friends and get ready for their first pony rides. My husband helped get them up into the saddles and instructed me to take pictures from afar. Very far. I got great shots of each of my children as they proudly took the reins and smiled for pictures. I stood behind the fence as the kids began their rides, and when the ponies made their way towards me, rounding the edge of the track, I backed the hell away.
Janowitz is a writer whose fifth novel “The Dinner Party” will be published by St. Martin’s next year. You can find her at BrendaJanowitz.com or on Twitter @brendaJanowitz.
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Monday, April 6, 2015
FROM THE I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT
Because I know many of you out there commute most days, as do I:
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(CNN)The average American commute to work lasts 25 minutes, according to U.S. Census data, but many workers travel far above and beyond that number. In Los Angeles, drivers spend an average of 90 hours a year stuck in traffic alone, and employees in New York City spend an average of 48 minutes a day getting to their jobs, often switching trains or busses along the way.
Commuting is rarely anyone's favorite time of day, but it can be more than just an inconvenience: All those hours spent in home-work limbo can have physical and mental health implications, as well. Here are five ways your car, train, or bus ride to the office can affect your wellbeing, plus what to do about it.
It may contribute to weight gain
A 2012 study published in the American Journal of Preventative Medicine found that the farther Texas residents commuted every day, the more likely they were to be overweight. Unsurprisingly, the farthest commuters were also less likely to get the recommended amount of daily physical activity. "It's not so easy to move or change your job, so if you do have a long commute it's important that you make a bigger effort to be active during the day," says lead study author Christine Hoehner, PhD. "Take walking breaks, get up from your desk often, take the stairs, and make it a priority to exercise whenever you do have time."
If you can, it might also be a good idea to try public transportation: men and women who drove to work weighed about 6.6 and 5.5 pounds more, respectively, than their peers who walked, cycled, or took trains or buses, a 2014 study in The BMJ found.
It's a pain in the neck—literally
A third of people with commutes of more than 90 minutes say they deal with ongoing neck and back pain, according to a 2010 Gallup poll. While back pain is one of the most common health complaints, only one in four people who commute 10 minutes or less reported pain in the same poll.
The extra time spent sitting slumped forward in the driver's seat or on the train could contribute to these issues, says Andrew Wolf, exercise physiologist at Miraval Resort and Spa in Tucson, Arizona. But making an effort to sit up straight—with a lumbar support behind your lower back, and your head evenly over your shoulders—can help you reverse bad habits. "It's a lifestyle choice that requires that you think about it a bit every day," he says. "Do enough of this and it will become automatic."
It affects your mood
People who drove, carpooled, or took public transportation to work were less able to enjoy daily activities and had more trouble concentrating compared to walkers or cyclists in a 2014 study from the University of East Anglia. Interestingly, the researchers found that wellbeing scores decreased for car commuters as time spent behind the wheel increased. But for walkers, the opposite held true: Those who traveled farther to work on foot had better mental health scores.
If there's no getting around public transportation for you, one thing you might try is talking to strangers. According to a 2014 study published in the Journal of Experimental Psychology, bus and train commuters reported more positive experiences when they connected with other riders than when they kept to themselves.
It stresses you out
People who commute by private car (no matter how long the trip)—or those whose trips lasted longer than 30 minutes by train, bus or on foot—had higher anxiety levels compared to people who made shorter trips, according to a 2014 report from the U.K.'s Office of National Statistics.
Hoehner's research also found that the longer people's car commutes were, the more likely they were to have elevated blood pressure—even when she controlled for physical activity level. "That finding suggested that there's something going on independent of the fact that people are less active, potentially something related to stress," she says. (Other risk factors for hypertension, like lack of sleep, poor diet, and social isolation, could also play a role.)
"One way to combat this could be for employers to allow people to commute at different times of the day, so they're not spending so much time in traffic," Hoehner adds. Can't switch up your schedule? Turn on a soothing playlist or practice slow, deep breathing when you feel yourself tensing up.
It exposes you to more pollution
In a 2007 study of Los Angeles residents, up to half of their exposure to harmful air pollution occurred while they traveled in their vehicles. Driving with the windows up, using recirculated air, and driving slower than 20 miles per hour can reduce exposure, say the study authors, but not as much as cutting back on driving time.
Cycling to work increases exposure to pollutants, as well, according to a 2010 Dutch study—but the same research also found that its health benefits of getting your heart rate up on your ride still outweigh its risks by at least nine times.
This article originally appeared on health.com
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Thursday, April 2, 2015
UPDATES DEPT
First, an update on autism--which is sometimes, though by no means always, associated with Moebius Syndrome. Meaning that some with Moebius may also have autism. So what can help those with autism? Did you know? One thing that may help is--massage:
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A massage treatment developed for children who have
autism can lessen its severity by a third in the first five months after
diagnosis, making the treatment an effective early intervention,
according to a newly published report.
The treatment, developed by Louisa Silva, founder of the Oregon-based Qigong Sensory Training Institute and a visiting professor at Western Oregon University, was found to be effective for both high- and low-functioning children with autism.
“That’s important because there really are very, very few effective research-based treatments for low-functioning children,” said Silva, who holds a medical degree from the University of California Los Angeles as well as a master’s degree in public health from the Medical College of Wisconsin.
That’s because most autism treatments require some degree of language and ability to focus, she said. Her treatment removes those barriers by centering on a 15-minute whole-body massage. The treatment, which she trains parents to use daily with children under the age of 6, is now the subject of a two-year replication study to assess its effectiveness.
The first report on the study, published recently in the peer-reviewed journal Autism Research and Treatment, found that overall autism severity among the 103 Oregon preschoolers in the study decreased by 32 percent, resulting in improved behavior and language. Autism severity is assessed by evaluating symptoms against screening tools such as the Autism Behavior Checklist.
More specifically, sensory problems improved by 38 percent and sensitivity to touch and texture improved by 49 percent after five months of treatment.
Children in the study also experienced an 18 percent increase in receptive language, Silva said. Among low-functioning children, a lack of receptive language means “they don’t answer to their name, they don’t understand.” Among high-functioning children, she said, “it’s that they don’t listen — it’s more that they would have a monologue” instead of a conversation.
Parenting stress, a phrase Silva said refers to the difficulty of parenting children with autism because of their communication and sensory challenges, improved by 44 percent.
Also notable was an improvement in parent-child bonding and interactions, Silva said. Despite the fact that many parents of children with autism are highly engaged, she said, there’s still evidence of bonding problems. “We think that the reason for that is, there’s a problem with the sense of touch and that interferes with the child’s perception of touch and touch is the main means of bonding,” she said.
Parents participating in the study were almost unanimously positive in their comments, which were included in the journal article:
• “It has built more trust when it comes to touch.”
• “He’s more aware of his body, more eye contact. Massage gives tools to help calm him. We can use the massage to get him to sleep if we need to. Potty training progress.”
• “We’ve become closer and he’s developed a stronger bond with both his parents. His speech development has made dramatic progress. He’s using full sentences now, often to our amazement and gratitude.”
Celeste and Mike Descloux of Fairview, Ore. said they’ve seen similar outcomes with their son, Kristoffer, 4, who received a diagnosis of autism spectrum disorder shortly after he turned 3. The family was offered a spot in the study by the researchers through Kristoffer’s preschool, which provides early childhood special education. Since last April, mother and father have taken turns doing the massage treatment nightly, after bath time and before bedtime.
Celeste Descloux said her son used to seem oblivious to his hands and feet, almost as if he didn’t realize he had them; now he’s definitely aware of them. In addition, “he didn’t like to be held too long or touched in some parts of his body, but now he doesn’t have that problem,” she said. “He has opened up more.”
She also said his speech and language skills have blossomed in the past year, though how much of that is attributable to the massage treatments and how much to his speech therapist is unclear.
“I feel like we were very lucky to be a part of the study and we’ve seen the benefits of the study,” Descloux said.
The study is now looking into whether the same results can be achieved for older children with autism.
The report noted several caveats:
• Treatment results depended on how faithfully parents stuck with the massage. “It’s something that if it’s not done, it doesn’t work,” Silva said, adding that she asks parents to do the massage six to seven times a week.
• The children in the study did not have any additional chronic disabilities.
• The children in the study were not receiving psychoactive medication or pharmaceutical chelation therapy.
• Only two of the 103 children in the study were receiving intensive behavioral treatment, and both were undergoing that treatment for 10 or fewer hours a week.
Still, the report said, the study results are strong enough to recommend the QSTI massage treatment to parents and early childhood special education programs at the time autism is diagnosed, often by the age of 2.
Silva declined to comment on how long the positive effects from the massage treatment could last, saying the study is not complete. But in previous studies with smaller sample sizes of 50 children, Silva said, the massage treatment continued to be effective after 10 months.
The treatment, developed by Louisa Silva, founder of the Oregon-based Qigong Sensory Training Institute and a visiting professor at Western Oregon University, was found to be effective for both high- and low-functioning children with autism.
“That’s important because there really are very, very few effective research-based treatments for low-functioning children,” said Silva, who holds a medical degree from the University of California Los Angeles as well as a master’s degree in public health from the Medical College of Wisconsin.
That’s because most autism treatments require some degree of language and ability to focus, she said. Her treatment removes those barriers by centering on a 15-minute whole-body massage. The treatment, which she trains parents to use daily with children under the age of 6, is now the subject of a two-year replication study to assess its effectiveness.
The first report on the study, published recently in the peer-reviewed journal Autism Research and Treatment, found that overall autism severity among the 103 Oregon preschoolers in the study decreased by 32 percent, resulting in improved behavior and language. Autism severity is assessed by evaluating symptoms against screening tools such as the Autism Behavior Checklist.
More specifically, sensory problems improved by 38 percent and sensitivity to touch and texture improved by 49 percent after five months of treatment.
Children in the study also experienced an 18 percent increase in receptive language, Silva said. Among low-functioning children, a lack of receptive language means “they don’t answer to their name, they don’t understand.” Among high-functioning children, she said, “it’s that they don’t listen — it’s more that they would have a monologue” instead of a conversation.
Parenting stress, a phrase Silva said refers to the difficulty of parenting children with autism because of their communication and sensory challenges, improved by 44 percent.
Also notable was an improvement in parent-child bonding and interactions, Silva said. Despite the fact that many parents of children with autism are highly engaged, she said, there’s still evidence of bonding problems. “We think that the reason for that is, there’s a problem with the sense of touch and that interferes with the child’s perception of touch and touch is the main means of bonding,” she said.
Parents participating in the study were almost unanimously positive in their comments, which were included in the journal article:
• “It has built more trust when it comes to touch.”
• “He’s more aware of his body, more eye contact. Massage gives tools to help calm him. We can use the massage to get him to sleep if we need to. Potty training progress.”
• “We’ve become closer and he’s developed a stronger bond with both his parents. His speech development has made dramatic progress. He’s using full sentences now, often to our amazement and gratitude.”
Celeste and Mike Descloux of Fairview, Ore. said they’ve seen similar outcomes with their son, Kristoffer, 4, who received a diagnosis of autism spectrum disorder shortly after he turned 3. The family was offered a spot in the study by the researchers through Kristoffer’s preschool, which provides early childhood special education. Since last April, mother and father have taken turns doing the massage treatment nightly, after bath time and before bedtime.
Celeste Descloux said her son used to seem oblivious to his hands and feet, almost as if he didn’t realize he had them; now he’s definitely aware of them. In addition, “he didn’t like to be held too long or touched in some parts of his body, but now he doesn’t have that problem,” she said. “He has opened up more.”
She also said his speech and language skills have blossomed in the past year, though how much of that is attributable to the massage treatments and how much to his speech therapist is unclear.
“I feel like we were very lucky to be a part of the study and we’ve seen the benefits of the study,” Descloux said.
The study is now looking into whether the same results can be achieved for older children with autism.
The report noted several caveats:
• Treatment results depended on how faithfully parents stuck with the massage. “It’s something that if it’s not done, it doesn’t work,” Silva said, adding that she asks parents to do the massage six to seven times a week.
• The children in the study did not have any additional chronic disabilities.
• The children in the study were not receiving psychoactive medication or pharmaceutical chelation therapy.
• Only two of the 103 children in the study were receiving intensive behavioral treatment, and both were undergoing that treatment for 10 or fewer hours a week.
Still, the report said, the study results are strong enough to recommend the QSTI massage treatment to parents and early childhood special education programs at the time autism is diagnosed, often by the age of 2.
Silva declined to comment on how long the positive effects from the massage treatment could last, saying the study is not complete. But in previous studies with smaller sample sizes of 50 children, Silva said, the massage treatment continued to be effective after 10 months.
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Update # 2: there are also a few with Moebius who also have Asperger's Syndrome. But if you have Aspergers, you need not be held back; check out this guy, who is making news:
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David Matthews (“no relation to that caterwauling alt-rock singer,” he says) had a story to tell.
So in 2011 he got on Facebook and messaged a Pittsburgh-area
documentary filmmaker, Julie Sokolow, enlisting her help in making a
movie about him to impress a woman he wanted to date. Matthews and
Sokolow met for coffee, and even though the woman in question ended up
rejecting his advances, Sokolow stuck around.
Sokolow, now 27, spent the next two-and-a-half years filming Matthews’ adventures in love, art and life. The final product is a 72-minute feature documentary called “Aspie Seeks Love.”
The film follows Matthews, who is 49 and lives in Aliquippa, Pa., as he tries to find a meaningful relationship and success as a writer, all while navigating a late-in-life Asperger’s syndrome diagnosis that put him on the autism spectrum.
But Sokolow was compelled to make the movie not because he was on the spectrum, or because he sought love, but rather because of Matthews’ sense of humor and sincerity. She was not familiar with Asperger’s or autism when she first met him for coffee and decided to make the movie. She was instead drawn to him as a person.
“It is a profile of one individual,” said Sokolow. “It’s a story about…his quest to learn about his own identity and to learn to be in the world with other people, to not sacrifice who he is to connect and find love.”
Asperger’s is a complex neurodevelopment disorder on the autism spectrum. Those with the condition have normal intelligence and near-normal language development but may have problems communicating with other people.
Sokolow had known of Matthews prior to their meeting. She had seen him running around town (“he doesn’t walk anywhere; he runs,”) in his distinctive sweaters, glasses and overcoat, and she was aware of his flyers taped on telephone poles around Pittsburgh. The fliers — part personal ad, part art project — had been a part of Matthews’ ongoing quest to find fulfillment in love.
When that well dried, he turned to online dating. His sometimes funny, sometimes painful, sometimes moving forays into that field were documented by Sokolow. She sat in on his dates, a potentially awkward situation made comfortable by Matthews’ innate honesty.
“David is 100 percent David whether the camera is there or not,” she said.
She was also careful to treat everyone who appears on camera with respect, influenced in part by a piece of literary advice Matthews received in the film: Love your characters and treat them with respect. Having that love and empathy for everyone in the film, said Sokolow, made the film itself better.
For three years, she worked on a documentary series on underinsured and uninsured artists living in Pittsburgh. Then Matthews contacted her, and she became a one-woman film crew on her first feature-length documentary. Making the movie was the hardest thing she had ever done in her life, she said.
“My naivete going into it was probably essential. I was pretty wide-eyed — ‘Oh, I’ll just pick up a camera and make a movie,’ ” she said.
After Sokolow had pieced together a rough cut of the film from 100 hours of footage, she was unsure about the next step. So she reached out to the Pittsburgh-based Animal Media Group and Danny Yourd, who had produced “Blood Brother,” a documentary that won the Grand Jury Prize and Audience Award at the Sundance Film Festival in 2013. Yourd took Solokow under his wing, and “Aspie Seeks Love” moved onto the festival circuit.
The movie had its world premiere Feb. 27 at the Cinequest Film Festival in San Jose, Calif., where it was named Best Documentary Feature Film. It also won Best Documentary earlier this month at the Omaha Film Festival, and it will continue to play at other festivals before running in Pittsburgh April 25-29.
Matthews saw the film a couple weeks before its premiere.
“I felt a little self-conscious seeing my image blown up onto the big screen,” he said, “but I noted the very favorable reaction of the audience, and I felt honored.”
*******************************************
Sokolow, now 27, spent the next two-and-a-half years filming Matthews’ adventures in love, art and life. The final product is a 72-minute feature documentary called “Aspie Seeks Love.”
The film follows Matthews, who is 49 and lives in Aliquippa, Pa., as he tries to find a meaningful relationship and success as a writer, all while navigating a late-in-life Asperger’s syndrome diagnosis that put him on the autism spectrum.
But Sokolow was compelled to make the movie not because he was on the spectrum, or because he sought love, but rather because of Matthews’ sense of humor and sincerity. She was not familiar with Asperger’s or autism when she first met him for coffee and decided to make the movie. She was instead drawn to him as a person.
“It is a profile of one individual,” said Sokolow. “It’s a story about…his quest to learn about his own identity and to learn to be in the world with other people, to not sacrifice who he is to connect and find love.”
Asperger’s is a complex neurodevelopment disorder on the autism spectrum. Those with the condition have normal intelligence and near-normal language development but may have problems communicating with other people.
Sokolow had known of Matthews prior to their meeting. She had seen him running around town (“he doesn’t walk anywhere; he runs,”) in his distinctive sweaters, glasses and overcoat, and she was aware of his flyers taped on telephone poles around Pittsburgh. The fliers — part personal ad, part art project — had been a part of Matthews’ ongoing quest to find fulfillment in love.
When that well dried, he turned to online dating. His sometimes funny, sometimes painful, sometimes moving forays into that field were documented by Sokolow. She sat in on his dates, a potentially awkward situation made comfortable by Matthews’ innate honesty.
“David is 100 percent David whether the camera is there or not,” she said.
She was also careful to treat everyone who appears on camera with respect, influenced in part by a piece of literary advice Matthews received in the film: Love your characters and treat them with respect. Having that love and empathy for everyone in the film, said Sokolow, made the film itself better.
For three years, she worked on a documentary series on underinsured and uninsured artists living in Pittsburgh. Then Matthews contacted her, and she became a one-woman film crew on her first feature-length documentary. Making the movie was the hardest thing she had ever done in her life, she said.
“My naivete going into it was probably essential. I was pretty wide-eyed — ‘Oh, I’ll just pick up a camera and make a movie,’ ” she said.
After Sokolow had pieced together a rough cut of the film from 100 hours of footage, she was unsure about the next step. So she reached out to the Pittsburgh-based Animal Media Group and Danny Yourd, who had produced “Blood Brother,” a documentary that won the Grand Jury Prize and Audience Award at the Sundance Film Festival in 2013. Yourd took Solokow under his wing, and “Aspie Seeks Love” moved onto the festival circuit.
The movie had its world premiere Feb. 27 at the Cinequest Film Festival in San Jose, Calif., where it was named Best Documentary Feature Film. It also won Best Documentary earlier this month at the Omaha Film Festival, and it will continue to play at other festivals before running in Pittsburgh April 25-29.
Matthews saw the film a couple weeks before its premiere.
“I felt a little self-conscious seeing my image blown up onto the big screen,” he said, “but I noted the very favorable reaction of the audience, and I felt honored.”
*******************************************
Wednesday, April 1, 2015
FOR MOMS AND DADS: IT'S NOT THE QUANTITY; IT'S THE QUALITY
An interesting article which argues that, first, it's not the quantity of the time parents spend with their kids that is important; it's the quality; and thus implies that working parents, especially working moms, needn't have so much guilt. Read on and see what you think:
**********************************
Today’s parents, especially today’s mothers, are filled with guilt.
It gnaws at us at pickup time, at bedtime, long after the kids have gone to sleep and we’re Red-Bulled out of our minds making costumes or cupcakes or scrapbook photo albums to prove to ourselves and everyone around us that we are there for them.
But smothering isn’t mothering. And we have, at long last, scientific proof that more of mom isn’t necessarily better.
The study, which will be published in April in the Journal of Marriage and Family and was described in The Washington Post by my colleague Brigid Schulte, looks at the academic achievement, behavior and emotional well-being of kids 3 to 11 years old in relation to the time they spend with their parents.
Guess what? Kids who log fewer mommy/daddy hours are great. Just. Fine. Their success and happiness — as well as we can measure these things — aren’t too different from the kids who can’t seem to shake their ever-present parents.
What matters is the quality of the time, not the quantity of time.
Common sense, right? You’d think. But we are a generation of parents twisting ourselves into knots trying to live up to what amounts to a big, fat myth.
The legend is that Moms Back Then — when moms made up about a third of the labor force and a fraction of the professional world — spent all their waking hours nurturing their precious children.
Ha!
Moms back in 1965 didn’t hover. The phrase “helicopter parent” was not in their vocabulary. They spent more time cleaning their homes, experimenting with aspic loaf recipes, and playing bridge than they did bonding with their brood.
This was the heyday of the Peanuts gang, when adults were a wha-wha-wha voice in the background, and kids, Snoopy and a weird bird went on adventures together without any parents present.
An analysis by the American Time Use Survey cited by a recent Pew Research Center study showed that American moms in 1965 spent a full 10 hours a week with their children and that dads devoted just 2.5 hours a week to caring for their kids.
Seriously? Of the 168 hours in a week, kids only got 2.5 with their “Mad Men” parents? Yup.
So what’s going on now, when about 75 percent of mothers are in the workforce, including those in boardrooms, courtrooms, newsrooms, laboratories, legislatures and law firms, engineering a supposed social catastrophe that makes traditionalists fret? Why are they spending time chasing their careers and not bonding with their kids?
Today’s moms spend — wait for it — 14 hours a week with their kids. That’s more than their non-working, 1965 counterparts. And dads are spending up to seven hours a week with their sons and daughters.
So that means today’s kids are getting nearly twice the face time with parents than the kids from the Peanuts gang-era ever got.
Our overparenting is nothing to brag about, as any free-range parent would tell you. We ought to be modeling ourselves on the mothers of 50 years ago, whose best child-rearing trick was telling their kids to go outside to play until dinner. And in that parent-free time, when the kids followed the weird bird or searched for the Great Pumpkin, they became imaginative, resilient, independent, clever little people fueled by boredom, necessity and grit.
There are two huge takeaways from the new research.
The first: Those extra four hours that we squeeze out of our stone-cold days to be more present than those 1965 moms are not necessarily helping our kids become awesome humans. They’re just making us exhausted. And crazy.
I am Exhibit A of this, jamming museum visits and park adventures with my kids into every waking moment that I am not at work. Yet I know they get more out of their own game of lacrockey — their hockey/lacrosse hybrid invention — in our alley than yet another guided tour of the U.S. National Arboretum azaleas by me.
The second point so often forgotten in our never-ending mommy wars: Yay Dad! Many men have really stepped up in the lives of their children, which ought to be relieving pressure on women.
But our guilt remains unrelenting. And it’s built around a myth, a mom that never existed, and it’s fueled by a deep fear and loathing of women in the workforce.
Stop. Parents — let it go. And let them go. Being the sun around which your child must constantly orbit isn’t unconditional love, it’s narcissism.
Whether kids have us for 10 hours, 14 hours or 20 hours a week, extreme helicoptering and extreme absenteeism are the obvious things to avoid. Anything in between — especially if it is high-quality and possibly includes a weird bird — will help our kids turn out all right. Our guts — and now data — tell us so.
Twitter: @petulad
*********************************
**********************************
Today’s parents, especially today’s mothers, are filled with guilt.
It gnaws at us at pickup time, at bedtime, long after the kids have gone to sleep and we’re Red-Bulled out of our minds making costumes or cupcakes or scrapbook photo albums to prove to ourselves and everyone around us that we are there for them.
But smothering isn’t mothering. And we have, at long last, scientific proof that more of mom isn’t necessarily better.
The study, which will be published in April in the Journal of Marriage and Family and was described in The Washington Post by my colleague Brigid Schulte, looks at the academic achievement, behavior and emotional well-being of kids 3 to 11 years old in relation to the time they spend with their parents.
Guess what? Kids who log fewer mommy/daddy hours are great. Just. Fine. Their success and happiness — as well as we can measure these things — aren’t too different from the kids who can’t seem to shake their ever-present parents.
What matters is the quality of the time, not the quantity of time.
Common sense, right? You’d think. But we are a generation of parents twisting ourselves into knots trying to live up to what amounts to a big, fat myth.
The legend is that Moms Back Then — when moms made up about a third of the labor force and a fraction of the professional world — spent all their waking hours nurturing their precious children.
Ha!
Moms back in 1965 didn’t hover. The phrase “helicopter parent” was not in their vocabulary. They spent more time cleaning their homes, experimenting with aspic loaf recipes, and playing bridge than they did bonding with their brood.
This was the heyday of the Peanuts gang, when adults were a wha-wha-wha voice in the background, and kids, Snoopy and a weird bird went on adventures together without any parents present.
Seriously? Of the 168 hours in a week, kids only got 2.5 with their “Mad Men” parents? Yup.
So what’s going on now, when about 75 percent of mothers are in the workforce, including those in boardrooms, courtrooms, newsrooms, laboratories, legislatures and law firms, engineering a supposed social catastrophe that makes traditionalists fret? Why are they spending time chasing their careers and not bonding with their kids?
Today’s moms spend — wait for it — 14 hours a week with their kids. That’s more than their non-working, 1965 counterparts. And dads are spending up to seven hours a week with their sons and daughters.
So that means today’s kids are getting nearly twice the face time with parents than the kids from the Peanuts gang-era ever got.
Our overparenting is nothing to brag about, as any free-range parent would tell you. We ought to be modeling ourselves on the mothers of 50 years ago, whose best child-rearing trick was telling their kids to go outside to play until dinner. And in that parent-free time, when the kids followed the weird bird or searched for the Great Pumpkin, they became imaginative, resilient, independent, clever little people fueled by boredom, necessity and grit.
There are two huge takeaways from the new research.
The first: Those extra four hours that we squeeze out of our stone-cold days to be more present than those 1965 moms are not necessarily helping our kids become awesome humans. They’re just making us exhausted. And crazy.
I am Exhibit A of this, jamming museum visits and park adventures with my kids into every waking moment that I am not at work. Yet I know they get more out of their own game of lacrockey — their hockey/lacrosse hybrid invention — in our alley than yet another guided tour of the U.S. National Arboretum azaleas by me.
The second point so often forgotten in our never-ending mommy wars: Yay Dad! Many men have really stepped up in the lives of their children, which ought to be relieving pressure on women.
But our guilt remains unrelenting. And it’s built around a myth, a mom that never existed, and it’s fueled by a deep fear and loathing of women in the workforce.
Stop. Parents — let it go. And let them go. Being the sun around which your child must constantly orbit isn’t unconditional love, it’s narcissism.
Whether kids have us for 10 hours, 14 hours or 20 hours a week, extreme helicoptering and extreme absenteeism are the obvious things to avoid. Anything in between — especially if it is high-quality and possibly includes a weird bird — will help our kids turn out all right. Our guts — and now data — tell us so.
Twitter: @petulad
*********************************
Tuesday, March 31, 2015
AWARENESS UPDATE
This may not simply be a submission from the Awareness Dept; this may also fall under my I-Just-Thought-This-Was-Interesting Dept. But anyway...some of you actually might disagree with me on this. But see the article below--I am glad the mom in question complained, and that this school is coming under fire. Don't get me wrong--of course we need to beware of childhood obesity and try to be healthier. But I think the below comes from our too-often appearance-centric, body-centric, "beauty"-centric culture, and there needs to be pushback against it. See if you agree:
******************************
******************************
A Missouri mother is livid after her daughter came home from elementary school with a note saying that her body mass index was too high despite her lean frame.
"She goes, 'Does this mean I'm fat?' and I said, 'No, this does not mean
you are fat,'" Amanda Moss, of Belton, Missouri, told KMBC, ABC's
Kansas City affiliate.
Moss's daughter Kylee is 7 years old, 54 pounds, 3-foot-10, Moss told the station.
According to the BMI calculator on the Centers for Disease Control and Prevention's website, her BMI is 17.9, making her overweight. But Moss says Kylee is an active, thin second grader.
"She is tiny," Moss told KMBC. "She has no body fat at all."
The school calculated students body mass indexes, which are a
measurement of height, weight and age, as part of a grant program,
Belton School District Superintendent Andrew Underwood told ABC News. In
the future, he said parents will be allowed to opt out.
"We do the body mass index on our students for positive reasons to try
to promote healthy habits as far as what the kids eat and their
activity," Underwood said. "There was no malicious intent by this."
BMI is a controversial measurement because it does not distinguish
muscle mass from fat mass, said Dr. Naveen Uli, a pediatric
endocrinology at UH Rainbow Babies & Children’s Hospital in
Cleveland, Ohio. Uli has not treated Kylee.
Knowing the average BMI for a student population can be helpful because it helps administrators changes when they increase physical activity time or add healthier options to the cafeteria menu, but it may not be as helpful on an individual scale, Uli said.
"[I]t may in fact be psychological[ly punishing, since school personnel
may not be familiar with details regarding that child's health," he said
in an email to ABC News. "This is best addressed by that child's
healthcare provider. That being said, if the school is in a neighborhood
with limited access to healthcare, the child might not be seeing a
pediatrician regularly. In that scenario, the school report to the
child's parents on BMI might be a much needed wake-up call."
********************************************
Friday, March 27, 2015
SPECIAL NEEDS/CHILDREN NEWS
Here's some of the latest news concerning disabilities, special needs, children, institutions, awareness, you name it. Some of the news is not so good; some of the news is very good.
First, some bad news: disability-related educational complaints are trending up:
***************************
Federal education officials are fielding an increasing number of complaints related to disability discrimination in the nation’s schools.
More than 3,900 complaints based on disability were filed with the U.S. Department of Education’s Office for Civil Rights during the 2014 fiscal year, the most recent period for which statistics are available.
Though that’s somewhat fewer than the department received in 2013, it represents a sharp rise over five years. By comparison, less than 3,000 complaints were filed in 2009.
The uptick comes as the Education Department deals with an overall surge in complaints to its Office for Civil Rights, which is tasked with ensuring equal access and prohibiting discrimination based on race, color, national origin, sex, disability and age in education programs.
Nearly 10,000 complaints were reported to the agency last year compared with about 6,300 in 2009. The agency reviews each case but does not necessarily act on every matter.
“There are likely a number of factors causing the increase, including the public’s increased awareness of civil rights laws and the public’s confidence in the Office for Civil Rights enforcement of those laws,” said Dorie Nolt, press secretary at the Department of Education, in a statement to Disability Scoop.
The Education Department is requesting an additional $30.7 million for next year in order to hire 200 more staffers to handle the influx of cases.
Disability issues account for the majority of civil rights complaints filed with the Education Department. The Office for Civil Rights said it is working more efficiently by using “expedited case review procedures” to address a portion of these complaints that focus on only a single issue.
Beyond responding to individual charges, the Education Department indicated in its budget request that plans are underway to “issue further guidance protecting students with disabilities from discrimination, including unfair discipline practices and restraint and seclusion.”
********************************
Second: more bad news--in the Pittsburgh area, some teachers are fighting what appears to be a very reasonable special-needs accommodation for a student:
*******************************
A teachers group is fighting a plan to allow a student with a disability to use a faculty restroom, all because they say the accommodation violates their right to exclusive facilities.
Eighteen teachers — including two special educators — signed a petition filed alongside a union grievance after administrators opted to allow a student at Park Elementary School near Pittsburgh to use the faculty restroom, reports the Pittsburgh Post-Gazette.
The student has a physical limitation, school officials say, which makes it difficult for the child to climb stairs needed to access the student facilities. The school’s bottom floor does not have a student restroom nor is there elevator access.
Teachers at the school argue the plan violates a provision of their contract stating that the school will provide “lavatory facilities exclusively for employees’ use.”
School officials, however, say the building has other faculty-only restrooms and the district has an obligation to “meet the needs of students with disabilities.”
The Steel Valley School Board is expected to vote on the matter.
****************************************
Good grief. Those complaining teachers sound pretty pathetic to me.
Meanwhile, third: some good news---a movie featuring an actor with Down Syndrome is set soon for nationwide release:
******************************************
A film starring a man with Down syndrome is set for a nationwide release this spring.
“Where Hope Grows” is expected to appear on about 300 screens across the country when it is released May 15.
Central to the story is a grocery-store worker named Produce, played by David DeSanctis who has Down syndrome.
In the film, Produce strikes up an unlikely friendship with a professional baseball player who was sent into early retirement after having panic attacks at the plate.
The movie marks DeSanctis’ acting debut and makes the Louisville, Ky. resident among the first with Down syndrome to have a lead role in a feature film.
“I want people to see me for my abilities, not my disabilities,” DeSanctis told The Hollywood Reporter.
Ahead of the movie’s release, a trailer for “Where Hope Grows” began screening at movie theaters nationwide this past weekend coinciding with World Down Syndrome Day.
****************************************
First, some bad news: disability-related educational complaints are trending up:
***************************
Federal education officials are fielding an increasing number of complaints related to disability discrimination in the nation’s schools.
More than 3,900 complaints based on disability were filed with the U.S. Department of Education’s Office for Civil Rights during the 2014 fiscal year, the most recent period for which statistics are available.
Though that’s somewhat fewer than the department received in 2013, it represents a sharp rise over five years. By comparison, less than 3,000 complaints were filed in 2009.
The uptick comes as the Education Department deals with an overall surge in complaints to its Office for Civil Rights, which is tasked with ensuring equal access and prohibiting discrimination based on race, color, national origin, sex, disability and age in education programs.
Nearly 10,000 complaints were reported to the agency last year compared with about 6,300 in 2009. The agency reviews each case but does not necessarily act on every matter.
“There are likely a number of factors causing the increase, including the public’s increased awareness of civil rights laws and the public’s confidence in the Office for Civil Rights enforcement of those laws,” said Dorie Nolt, press secretary at the Department of Education, in a statement to Disability Scoop.
The Education Department is requesting an additional $30.7 million for next year in order to hire 200 more staffers to handle the influx of cases.
Disability issues account for the majority of civil rights complaints filed with the Education Department. The Office for Civil Rights said it is working more efficiently by using “expedited case review procedures” to address a portion of these complaints that focus on only a single issue.
Beyond responding to individual charges, the Education Department indicated in its budget request that plans are underway to “issue further guidance protecting students with disabilities from discrimination, including unfair discipline practices and restraint and seclusion.”
********************************
Second: more bad news--in the Pittsburgh area, some teachers are fighting what appears to be a very reasonable special-needs accommodation for a student:
*******************************
A teachers group is fighting a plan to allow a student with a disability to use a faculty restroom, all because they say the accommodation violates their right to exclusive facilities.
Eighteen teachers — including two special educators — signed a petition filed alongside a union grievance after administrators opted to allow a student at Park Elementary School near Pittsburgh to use the faculty restroom, reports the Pittsburgh Post-Gazette.
The student has a physical limitation, school officials say, which makes it difficult for the child to climb stairs needed to access the student facilities. The school’s bottom floor does not have a student restroom nor is there elevator access.
Teachers at the school argue the plan violates a provision of their contract stating that the school will provide “lavatory facilities exclusively for employees’ use.”
School officials, however, say the building has other faculty-only restrooms and the district has an obligation to “meet the needs of students with disabilities.”
The Steel Valley School Board is expected to vote on the matter.
****************************************
Good grief. Those complaining teachers sound pretty pathetic to me.
Meanwhile, third: some good news---a movie featuring an actor with Down Syndrome is set soon for nationwide release:
******************************************
A film starring a man with Down syndrome is set for a nationwide release this spring.
“Where Hope Grows” is expected to appear on about 300 screens across the country when it is released May 15.
Central to the story is a grocery-store worker named Produce, played by David DeSanctis who has Down syndrome.
In the film, Produce strikes up an unlikely friendship with a professional baseball player who was sent into early retirement after having panic attacks at the plate.
The movie marks DeSanctis’ acting debut and makes the Louisville, Ky. resident among the first with Down syndrome to have a lead role in a feature film.
“I want people to see me for my abilities, not my disabilities,” DeSanctis told The Hollywood Reporter.
Ahead of the movie’s release, a trailer for “Where Hope Grows” began screening at movie theaters nationwide this past weekend coinciding with World Down Syndrome Day.
****************************************
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