The government is encouraging airlines to better serve persons with disabilities; and who knows, some day this could affect you. Read on:
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A new guide from the U.S. Department of Transportation is spelling
out the rules air carriers must follow when dealing with travelers who
have autism and other developmental disabilities.
The federal agency sent guidance to airlines
this summer detailing their responsibilities under the Air Carrier
Access Act. Developed in coordination with The Arc and the Autistic Self
Advocacy Network, the documentation does not lay out any new
requirements, but clarifies existing rules for airlines and travelers,
the agency said.
“Recent incidents highlight the need for a guidance document focusing
on developmental disabilities, to assist individuals on the autism
spectrum and individuals with other developmental disabilities know
their rights,” the Department of Transportation said in a statement to
Disability Scoop.
Earlier this year, a 15-year-old with autism and her family were kicked off
of a United Airlines flight after the teen’s mother sought a hot meal
to calm the girl mid-flight. The incident, which garnered national
attention, prompted the Autistic Self Advocacy Network to request
clarification from the Transportation Department on the
responsibilities of airlines when serving passengers with autism and
other disabilities.
Under federal rules, airlines can deny boarding or remove a passenger
with a disability from a flight if they believe the individual “poses a
significant risk to the health or safety of others” that cannot be
addressed by modifying typical policies or procedures.
However, such action cannot be taken based on an assumed risk
associated with a person’s diagnosis, the Transportation Department
said.
For example, the document indicates that a person with a disability
could be removed from a flight if they repeatedly kick the seat in front
of them unless the behavior could be accommodated by moving the
passenger to a different seat where kicking would not affect others on
the plane.
If a person is denied access to a scheduled flight due to their
disability, airlines must provide a written explanation within 10 days,
the Transportation Department said.
The guidance directs airlines to consider a person’s disability when
communicating with passengers. It also offers air carriers information
about developmental disabilities and gives examples of common behaviors
and communication challenges that individuals may exhibit.
Travelers with disabilities are encouraged to contact airlines in
advance of their scheduled flight to discuss their anticipated needs
while at the airport and in flight.
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Monday, August 31, 2015
Friday, August 28, 2015
HEALTH UPDATE: THREE STEPS TO IMPROVE YOUR NEXT DOCTOR'S APPOINTMENT
Because sometimes those of us with Moebius do have to see the doctor...and do so more than others. So how can we get the most out of that appointment? Read on:
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Your doctor brings experience and specialized knowledge to the exam room, but you don’t come empty handed. As the subject of your health care, your input is indispensable. Not that long ago, “doctor knows best” was the norm in American health care. Now patient-centered care is growing in popularity, and many consumers see themselves as active players when they visit their doctors. Within each of these mindsets, there’s room for high-quality health care and satisfied patients. The common thread is empowerment.
What is patient empowerment?
Being an empowered patient means different things to different people. Some prefer giving their doctor complete control in directing their care, while others want a more collaborative approach to medical decision making.
“Empowerment is knowing who you are, what you want and then getting it,” says Linda Adler, founder of Pathfinders Medical, a patient advocacy group based in Palo Alto, California.
For many patients, being empowered means being engaged. Research indicates that patients who are engaged in managing their health care have better outcomes— with lower costs. Although it might not be the right solution for everyone, Adler says, the formula for patient engagement is prescriptive:
1. Get informed about your health.
Now more than ever, we have access to a variety of health information. But access to information isn’t enough— we have to understand it. Health literacy means understanding your conditions, prognoses and treatment options, and it takes more than clicking on an article seen on social media. Start by consulting reliable sources, such as the American Heart Association or the American Cancer Society. Ask your doctor for additional resources.
READ MORE: How Much Does Chemotherapy Cost?
You can also maintain copies of your medical records. Patients with access to their medical records often report feeling more informed about and involved in their care. Access to these records lets you see what your doctor sees, and getting them is easier than ever with the implementation of electronic health records (EHR) systems. Whether you view them online through a patient portal or whether you request paper copies, review them from time to time for errors.
READ MORE: How to Spot Medical Billing Errors
2. Choose your health insurance plan carefully and manage your costs.
Some health care costs are unavoidable, but choosing a health insurance plan that fits your needs will help you manage your expenses. For instance, a plan with a higher premium and lower deductible makes more sense for someone with a chronic condition, while a high deductible plan with a lower monthly premium could save a healthy person bundles.
Beyond your plan choice, consider other factors that can affect how much you pay for care:
● Stick with in-network medical providers.
● Choose generic medicine when available.
● Open a flexible spending account (FSA) or health savings account (HSA) to set aside pretax dollars for medical expenses.
● Review your medical bills for errors, and don’t be afraid to negotiate balances with medical providers.
3. Communicate effectively.
Understanding and playing a role in your health care requires you to be vocal. Make sure your doctor understands you want to be included in making decisions. Ask questions and spell out clearly what you need to feel comfortable. Making a list of your symptoms and questions before your appointment can set the stage for an effective conversation.
Remember that communication is a two-way street, and although being assertive about your health care needs is important, your doctor has valuable information to pass along.
When empowerment means something else
Engagement is the first step to empowerment for many patients, but that approach isn’t right for everyone, Adler says.
“Not everyone wants to be engaged,” she says. “For many, simply saying who you are and what you want is empowerment.”
Patients who prefer the “doctor knows best” model, for example, might see empowerment as finding a medical team to which they can relinquish control. For them, and often for people with chronic conditions, there is such a thing as too much information and too much control. In these cases, having family or friends to support the health care process, or even a patient advocate, can help relieve some of the burden.
Long before boosting your medical literacy and sharpening your doctor-patient communication skills, figure out what you want to get out of your medical care and how you define empowerment. Health care satisfaction depends on knowing your personal preferences and fulfilling those needs.
***************************
Your doctor brings experience and specialized knowledge to the exam room, but you don’t come empty handed. As the subject of your health care, your input is indispensable. Not that long ago, “doctor knows best” was the norm in American health care. Now patient-centered care is growing in popularity, and many consumers see themselves as active players when they visit their doctors. Within each of these mindsets, there’s room for high-quality health care and satisfied patients. The common thread is empowerment.
What is patient empowerment?
Being an empowered patient means different things to different people. Some prefer giving their doctor complete control in directing their care, while others want a more collaborative approach to medical decision making.
“Empowerment is knowing who you are, what you want and then getting it,” says Linda Adler, founder of Pathfinders Medical, a patient advocacy group based in Palo Alto, California.
For many patients, being empowered means being engaged. Research indicates that patients who are engaged in managing their health care have better outcomes— with lower costs. Although it might not be the right solution for everyone, Adler says, the formula for patient engagement is prescriptive:
1. Get informed about your health.
Now more than ever, we have access to a variety of health information. But access to information isn’t enough— we have to understand it. Health literacy means understanding your conditions, prognoses and treatment options, and it takes more than clicking on an article seen on social media. Start by consulting reliable sources, such as the American Heart Association or the American Cancer Society. Ask your doctor for additional resources.
READ MORE: How Much Does Chemotherapy Cost?
You can also maintain copies of your medical records. Patients with access to their medical records often report feeling more informed about and involved in their care. Access to these records lets you see what your doctor sees, and getting them is easier than ever with the implementation of electronic health records (EHR) systems. Whether you view them online through a patient portal or whether you request paper copies, review them from time to time for errors.
READ MORE: How to Spot Medical Billing Errors
2. Choose your health insurance plan carefully and manage your costs.
Some health care costs are unavoidable, but choosing a health insurance plan that fits your needs will help you manage your expenses. For instance, a plan with a higher premium and lower deductible makes more sense for someone with a chronic condition, while a high deductible plan with a lower monthly premium could save a healthy person bundles.
Beyond your plan choice, consider other factors that can affect how much you pay for care:
● Stick with in-network medical providers.
● Choose generic medicine when available.
● Open a flexible spending account (FSA) or health savings account (HSA) to set aside pretax dollars for medical expenses.
● Review your medical bills for errors, and don’t be afraid to negotiate balances with medical providers.
3. Communicate effectively.
Understanding and playing a role in your health care requires you to be vocal. Make sure your doctor understands you want to be included in making decisions. Ask questions and spell out clearly what you need to feel comfortable. Making a list of your symptoms and questions before your appointment can set the stage for an effective conversation.
Remember that communication is a two-way street, and although being assertive about your health care needs is important, your doctor has valuable information to pass along.
When empowerment means something else
Engagement is the first step to empowerment for many patients, but that approach isn’t right for everyone, Adler says.
“Not everyone wants to be engaged,” she says. “For many, simply saying who you are and what you want is empowerment.”
Patients who prefer the “doctor knows best” model, for example, might see empowerment as finding a medical team to which they can relinquish control. For them, and often for people with chronic conditions, there is such a thing as too much information and too much control. In these cases, having family or friends to support the health care process, or even a patient advocate, can help relieve some of the burden.
Long before boosting your medical literacy and sharpening your doctor-patient communication skills, figure out what you want to get out of your medical care and how you define empowerment. Health care satisfaction depends on knowing your personal preferences and fulfilling those needs.
Thursday, August 27, 2015
FOR PARENTS: HOW TO HELP YOUR KIDS SLEEP MORE
Any parent, be they Moebius parents or not, needs advice on this! Check it out:
********************
The end of summer always brings a bit of melancholy to our house—all of us reluctant to give up sleeping late, days with relatively little structure, evening swims and lazy, late-night barbeques with family and friends.
But as fall approaches this year, there is one thing my 17-year-old and I are both looking forward to. For the first time in its nearly 70-year history, his Los Angeles school will begin at 8:30 a.m., a half hour later than it has in the past.
This, according to a recent recommendation by the Centers for Disease Control and Prevention, is exactly what all middle and high schools should be doing. Encouraging adolescents to get enough sleep is crucial to improving their health and the quality of their education.
The CDC’s report comes a year after the American Academy of Pediatrics released its own policy statement on the subject, urging schools to delay start times to at least 8:30 so that more teens will get the minimum 8.5 to 9.5 hours of sleep they need. Research shows that most teens get seven hours or less of shuteye a night, leaving them chronically sleep-deprived. And too little sleep leads to serious health risks, including depression, stress, obesity and car crashes induced by drowsiness.
“Getting enough sleep is important for students’ health, safety and academic performance,” says Anne Wheaton, an epidemiologist at the CDC’s Division of Population Health and the lead author of its study. “Early school start times, however, are preventing many adolescents from getting the sleep they need.”
Upon learning of his new extra half hour of school-day sleep, my son, Nathaniel, was incredulous. “Seriously?” he said. “That is low-key great.” I couldn’t agree more.
Indeed, given the CDC’s finding that in 40 states, at least 75 percent of public schools start earlier than 8:30, we are feeling lucky to be outliers.
“We know if you miss an extra hour of sleep as a teenager it’s like drinking a shot of alcohol,” says William Perkins-Tift, the academic dean at Oakwood Secondary School who helped oversee the schedule change, part of a broader move to a trimester block system, which will also cut down on homework and allow for deeper exploration of individual subjects. “And if you have a campus filled with kids who are doing that—well, it’s clearly not the most conducive environment for learning.”By asking policy makers and school districts to start school later, the CDC and Academy of Pediatrics have signaled an important shift away from blaming students for not going to bed earlier and their parents for not enforcing bedtime rules. The science on sleep has long shown that teenagers’ internal clocks make if more difficult for them to go to bed early.
“We can tell teens to go to bed at 10, but their bodies are going to go to bed at 11,” says Michele Borba, an educational psychologist and book author who has written extensively on the subject of sleep. “We have failed to take sleep deprivation seriously. We need to pay attention to what science is telling us about kids and not do what is convenient for schools or parents or bus schedules. We need to do what’s best for the student in terms of learning and emotional development.”
As others have recently reported, a study from the University of Minnesota found that at eight high schools in three states that switched to a later start time, students had better attendance, grades and standardized test scores. And negative tendencies, including substance abuse and tardiness, decreased.
Oakwood’s Perkins-Tift prefers to view the quest for more sleep as a partnership between the school and its parents.
“A later start time is something that was institutionally within our control,” he says. “It shows our parents that this is a priority. But there are also things parents can and should be doing at home to foster better sleep habits.”
Borba agrees. Parents cannot change a teenager’s circadian rhythm, but they can take steps to make it easier for their son or daughter to get a decent night’s rest. Here are a handful of suggestions:
Create and help your teenager stick to a regular routine. A consistent bedtime and wake time promotes better sleep.
Once you establish a regular schedule, make sure that all electronic devices—laptops, televisions, video games and cell phones—are turned off at least a half-hour before bedtime. “Flashing images affect REM,” Borba says. “Those flicking lights signal to your brain to stay alert.”
Be a better role model: According to the National Sleep Foundation, parents with electronics in the bedroom were more likely to have children with electronics in their bedroom. (Eighty-nine percent of adults, and 89 percent of children ages 15 to 17 have at least one electronic device in their bedrooms.) And parents who leave devices on also have children who leave devices on.
Make sure your teens avoid energy drinks or anything with caffeine, especially late in the day or evening. “Many kids drink them because the pressure is so great to keep studying,” Borba says. “But they rob sleep later on.”
Show kids the data on sleep deprivation. “After all these are the same kids that are staying up late studying AP science,” notes Borba. “They’ll get it.”
Meantime, there’s one other thing parents can do: Be an advocate for change. Talk to the appropriate administrators at your child’s school and encourage them to start at 8:30 or later. With all of the scientific research that’s been done at this point, it’s time to put this issue to rest.
Randye Hoder writes about the intersection of family, politics and culture. You can follow her on Twitter @ranhoder.
*******************
********************
The end of summer always brings a bit of melancholy to our house—all of us reluctant to give up sleeping late, days with relatively little structure, evening swims and lazy, late-night barbeques with family and friends.
But as fall approaches this year, there is one thing my 17-year-old and I are both looking forward to. For the first time in its nearly 70-year history, his Los Angeles school will begin at 8:30 a.m., a half hour later than it has in the past.
This, according to a recent recommendation by the Centers for Disease Control and Prevention, is exactly what all middle and high schools should be doing. Encouraging adolescents to get enough sleep is crucial to improving their health and the quality of their education.
The CDC’s report comes a year after the American Academy of Pediatrics released its own policy statement on the subject, urging schools to delay start times to at least 8:30 so that more teens will get the minimum 8.5 to 9.5 hours of sleep they need. Research shows that most teens get seven hours or less of shuteye a night, leaving them chronically sleep-deprived. And too little sleep leads to serious health risks, including depression, stress, obesity and car crashes induced by drowsiness.
“Getting enough sleep is important for students’ health, safety and academic performance,” says Anne Wheaton, an epidemiologist at the CDC’s Division of Population Health and the lead author of its study. “Early school start times, however, are preventing many adolescents from getting the sleep they need.”
Upon learning of his new extra half hour of school-day sleep, my son, Nathaniel, was incredulous. “Seriously?” he said. “That is low-key great.” I couldn’t agree more.
Indeed, given the CDC’s finding that in 40 states, at least 75 percent of public schools start earlier than 8:30, we are feeling lucky to be outliers.
“We know if you miss an extra hour of sleep as a teenager it’s like drinking a shot of alcohol,” says William Perkins-Tift, the academic dean at Oakwood Secondary School who helped oversee the schedule change, part of a broader move to a trimester block system, which will also cut down on homework and allow for deeper exploration of individual subjects. “And if you have a campus filled with kids who are doing that—well, it’s clearly not the most conducive environment for learning.”By asking policy makers and school districts to start school later, the CDC and Academy of Pediatrics have signaled an important shift away from blaming students for not going to bed earlier and their parents for not enforcing bedtime rules. The science on sleep has long shown that teenagers’ internal clocks make if more difficult for them to go to bed early.
“We can tell teens to go to bed at 10, but their bodies are going to go to bed at 11,” says Michele Borba, an educational psychologist and book author who has written extensively on the subject of sleep. “We have failed to take sleep deprivation seriously. We need to pay attention to what science is telling us about kids and not do what is convenient for schools or parents or bus schedules. We need to do what’s best for the student in terms of learning and emotional development.”
As others have recently reported, a study from the University of Minnesota found that at eight high schools in three states that switched to a later start time, students had better attendance, grades and standardized test scores. And negative tendencies, including substance abuse and tardiness, decreased.
Oakwood’s Perkins-Tift prefers to view the quest for more sleep as a partnership between the school and its parents.
“A later start time is something that was institutionally within our control,” he says. “It shows our parents that this is a priority. But there are also things parents can and should be doing at home to foster better sleep habits.”
Borba agrees. Parents cannot change a teenager’s circadian rhythm, but they can take steps to make it easier for their son or daughter to get a decent night’s rest. Here are a handful of suggestions:
Create and help your teenager stick to a regular routine. A consistent bedtime and wake time promotes better sleep.
Once you establish a regular schedule, make sure that all electronic devices—laptops, televisions, video games and cell phones—are turned off at least a half-hour before bedtime. “Flashing images affect REM,” Borba says. “Those flicking lights signal to your brain to stay alert.”
Be a better role model: According to the National Sleep Foundation, parents with electronics in the bedroom were more likely to have children with electronics in their bedroom. (Eighty-nine percent of adults, and 89 percent of children ages 15 to 17 have at least one electronic device in their bedrooms.) And parents who leave devices on also have children who leave devices on.
Make sure your teens avoid energy drinks or anything with caffeine, especially late in the day or evening. “Many kids drink them because the pressure is so great to keep studying,” Borba says. “But they rob sleep later on.”
Show kids the data on sleep deprivation. “After all these are the same kids that are staying up late studying AP science,” notes Borba. “They’ll get it.”
Meantime, there’s one other thing parents can do: Be an advocate for change. Talk to the appropriate administrators at your child’s school and encourage them to start at 8:30 or later. With all of the scientific research that’s been done at this point, it’s time to put this issue to rest.
Randye Hoder writes about the intersection of family, politics and culture. You can follow her on Twitter @ranhoder.
*******************
Wednesday, August 26, 2015
UPDATE: FATHERS ARE CRUCIAL FOR CHILDREN AFFECTED BY ASD
"Many women struggle to deal with stress associated with having a child
with autism, but new research suggests that fathers can play a big role
in boosting moms’ mental health." Autism is sometimes, though by no means always, associated with Moebius Syndrome. So read on and see how:
*********************************
Many women struggle to deal with stress associated with having a child with autism, but new research suggests that fathers can play a big role in boosting moms’ mental health.
The extent that dads take a hands-on role in caregiving when children are young is directly tied to the level of depressive symptoms mothers experienced later, according to a study published in the Maternal and Child Health Journal.
The findings come from an analysis of data on more than 3,500 children — some of whom had autism or other disabilities — collected through the National Center for Education Statistics’ Early Childhood Longitudinal Study-Birth Cohort.
Researchers assessed the well-being of the children’s mothers and examined fathers’ involvement in various everyday activities like play and bathing. The study looked exclusively at families where children lived with both biological parents for the first four years of life.
Among 9-month-olds later diagnosed with autism, the study found that increased involvement of dads in activities like reading to their child or soothing them when they were upset led to fewer depressive symptoms in moms by the time the children reached age 4.
“In family systems that include children with autism, the stressors are huge, and mothers need all the support they can grasp,” said Brent McBride, a professor of human development at the University of Illinois at Urbana–Champaign who co-authored the study. “We, as a society, have to ask men to become involved, and it’s very important that men fully understand the reasons why their support and active engagement in parenting is so critical for the family’s functioning and for the child.”
Previous research has suggested that mothers of children with autism experience greater levels of stress, depression and anxiety.
McBride said the current findings indicate that professionals should work more carefully with families who have a child on the spectrum to increase involvement from fathers in parenting activities.
********************************
*********************************
Many women struggle to deal with stress associated with having a child with autism, but new research suggests that fathers can play a big role in boosting moms’ mental health.
The extent that dads take a hands-on role in caregiving when children are young is directly tied to the level of depressive symptoms mothers experienced later, according to a study published in the Maternal and Child Health Journal.
The findings come from an analysis of data on more than 3,500 children — some of whom had autism or other disabilities — collected through the National Center for Education Statistics’ Early Childhood Longitudinal Study-Birth Cohort.
Researchers assessed the well-being of the children’s mothers and examined fathers’ involvement in various everyday activities like play and bathing. The study looked exclusively at families where children lived with both biological parents for the first four years of life.
Among 9-month-olds later diagnosed with autism, the study found that increased involvement of dads in activities like reading to their child or soothing them when they were upset led to fewer depressive symptoms in moms by the time the children reached age 4.
“In family systems that include children with autism, the stressors are huge, and mothers need all the support they can grasp,” said Brent McBride, a professor of human development at the University of Illinois at Urbana–Champaign who co-authored the study. “We, as a society, have to ask men to become involved, and it’s very important that men fully understand the reasons why their support and active engagement in parenting is so critical for the family’s functioning and for the child.”
Previous research has suggested that mothers of children with autism experience greater levels of stress, depression and anxiety.
McBride said the current findings indicate that professionals should work more carefully with families who have a child on the spectrum to increase involvement from fathers in parenting activities.
********************************
Tuesday, August 25, 2015
BACK TO WORK! FACIAL DIFFERENCE IN THE NEWS
Sorry I took such a long hiatus from the blog. Been busy. But--back to it! And today we see that there's been some news lately of interest. And some awareness raised--have you ever heard of Adam Pearson? He is an actor, television broadcaster, etc with a facial difference. Read more about it:
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London art student, Dagmar Bennett has
created a bust of Jeans for Genes Ambassador Adam Pearson, who has type
one Neurofibromatosis, a genetic condition that causes the growth of
excess body tissue.
The student of Wimbledon College of Arts
created the bust of Adam in her final degree year and the work was
showcased at an exhibition at the college, earlier this summer.
Jeans for Genes ambassador, Adam
Pearson, is an actor, television caster, researcher, public speaker and
campaigner against stigma for people with visible facial differences.
Adam’s condition causes excess tissue to grow predominantly on his face.
Dagmar Bennett, said: “On the surface it
may seem that appearance can often be equated with success. However,
representations of beauty, appearance and disfigurement are conditional.
“In the UK today, over 540,000 people
have a facial disfigurement, many of whom are stigmatised and
discriminated against. Perceptions need to change – people with a
disfigurement should be valued as equal – and art can be a powerful tool
to change perceptions.
“For the final year of my degree I
created a heroic bust of Adam Pearson, an actor, television
caster/researcher, public speaker and campaigner against stigma for
people with a visible facial difference. He has type one
Neurofibromatosis, a genetic condition that causes excess body tissue to
grow predominantly on his face.
“After hearing his story, I felt
inspired by his positive attitude, bravery and determination to break
down barriers regarding how people with disfigurement are viewed and
treated. In my portrait I want to capture these personal qualities, show
him as an individual and help change perceptions on people with
disfigurement.
“British portraiture has mostly been
white, middle aged men; impervious icons of British solidarity. I aim to
challenge this tradition by creating a non-conventional portrait
representing the visual diversity of today’s heroes.”
Jeans for Genes Day is celebrating its
20th year of fundraising for children with genetic disorders on Friday
18th September 2015 and this year a host of celebrities are backing the
campaign.
Over the last 20 years, a sea of denim
has crept across the UK as the British public have taken up the Jeans
for Genes Day banner and helped raise over £40million.
For more information on how to get involved, please visit
http://www.jeansforgenesday.org/getinspired/ambassadors#adampearson
http://www.jeansforgenesday.org/getinspired/ambassadors#adampearson
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Thursday, August 6, 2015
FOR PARENTS: GETTING YOUR CHILD TO EAT...
...to eat anything. To eat healthy. To eat so there doesn't have to be a battle. What to do? I thought this would be interesting both for Moebius moms and dads, and many other moms and dads too:
*********************
“Are we going to eat those?” my younger son asked me incredulously—or was it hopefully?—gesturing toward a pair of slippery, glassy-eyed fish heads that had been freshly cleaved from their bodies. I was on assignment in Virginia for a food magazine, eating with my husband and our two sons, ages 7 and 9, at the chef’s table in the kitchen of the Clifton Inn in Charlottesville. While the fish bodies were being filleted and prepared for that night’s menu, the heads were seasoned, flipped on a grill, and quickly served up to us on a butcher block.
“You can eat the brains and the eyes,” said the tattooed sous-chef on the other side of the counter, “but the cheeks are really the best part.” To my delight, everyone in my family eagerly picked up their forks.
The next day, I was talking with the inn’s then-chef, Tucker Yoder, about how much my kids enjoyed dinner (the fish heads being a highlight). They tasted—if not devoured—all of the 24 small plates that were pushed across the counter toward us. Yoder, a critically acclaimed chef who has four kids of his own, nodded in solidarity: He told me how one of his daughters never wanted PB&J sandwiches in her lunch box in kindergarten, so he sent her to school with fruit and charcuterie.
We bonded over our kids’ shared adventurousness, which he lamented was rare among their elementary-school-aged peers. But why?, we wondered. And how do we fight the American diet, or the “endless pantry” syndrome (as my mom calls it), where parents scramble to offer option upon option to their kids at meal times, desperate to find healthy foods that their kids won’t reject? Tucker’s assessment: If you expose your kids to the good stuff, eventually they’ll eat the good stuff.
I, too, was once a victim (perpetrator?) of endless pantry syndrome. I distinctly remember tears—both his and mine—as I performed desperate circus acts trying to feed regular food to my first-born after his pediatrician told me that, at 14 months old, it was high time my kid stopped relying on jarred baby food. I felt deficient as a parent for letting my kid eat only mush for so long, and I wondered if I had screwed up his health for good.
Around that time, a friend who was also a nurse and a veteran mom watched me obsessively trying to convince my son to eat banana bread (come on—who doesn’t like banana bread!?), appealing to him with a new bite of bread every few minutes after he’d rejected the last one. She laughed politely at my totally ineffective helicopter-feeding techniques: “Well, if he doesn’t eat, it won’t be for lack of your trying.” I was both mortified and exhausted.
But by the time he was 15 months old, we discovered that homemade chicken barley soup was an acceptable alternative to those tiny jars of puree. Pancakes that he could smash in his fists and stuff in the general vicinity of his mouth were cause for celebration. Those were small victories in the early years, punctuated by even more struggles as I spent the better part of my days trying to figure out what to buy, how to cook it, and when to feed my kid for the best possible results. Finding food that he would eat was a daily stress-cloud that followed me from breakfast through dinner.
In a demonstration of God’s evenhandedness, our second baby transitioned to table food more easily than his brother (before he was 2 years old, he reached across the table and grabbed a fried oyster off my husband’s fork and jammed it into his mouth). But even then, for many of my kids’ preschool years, we were stuck in the American diet/endless-pantry routine, where it was just easier to heat up meals that consisted of chicken nuggets, pizza or mac-n-cheese with the requisite baby carrots. I didn’t have the time or energy for much more than that.
And then.
One summer night, when the boys were old enough to keep themselves occupied for an hour while I made dinner, I decided to try gazpacho out on them. I knew they would eat spears of raw bell peppers and cucumbers, and I had seen them chow down on chips and salsa at Mexican restaurants; I thought maybe I could use chips as an incentive for them to eat the soup. So in a fit of hopeful creativity, I whipped up some gazpacho and served it to them in artfully garnished bowls, complete with sides of tortilla chips. I took a step back to admire my creation and waited for Martha Stewart to call me so she could feature my adorable-and-healthy dinner idea in her magazine.
[I was a picky eater and now my kids are]
“Just like at the restaurant!” I chirped, hopefully.
Nothing.
“It’s made with cucumbers and red, green and yellow peppers—you like those! These are just blended up,” I tried to convince them. My boys just blinked at me, Morse code for Nice try, Mom. Cups of gazpacho were pushed aside as the chips—and my enthusiasm—disappeared. Martha never called.
A few weeks later, however, I took another stab at the gazpacho—only this time, I prepped all the veggies and piled them up on cutting boards alongside the necessary ingredients on the counter. I invited my older son to measure out the oil and vinegars and dump handfuls of raw veggies into the blender. He got to push the buttons while I supervised. Of course, his brother wanted in on the action, too. Lo and behold, not a drop of gazpacho was left in the bowls that night.
So what happened? Maybe their palates had matured just enough to be sold on cold tomato soup, or maybe each brother was trying to impress the other with what he dared to eat, but I was convinced that having them help make dinner—that they took ownership of what they were eating—was what made the difference.
I soon discovered that make-your-own versions of anything had a high success rate: Instead of preparing a salad for the table, we would make a “salad bar” with all the chopped ingredients for the kids to assemble themselves. A friend showed me how to make pozole (a Mexican chicken soup) with slices of lime and avocado, shredded cabbage and crumbled tortilla chips to pile into the bowls as you please. Both big hits.
Invent-your-own dishes worked, too: After watching a documentary on how Japan was combating its invasive jellyfish problem by eating them in a noodle-filled soup, my boys asked if we could make something like that (I tried to hide my horror at the idea, but figured out that, basically, they just wanted to eat noodle soup). We went about creating our own Asian noodle soup by looking up recipes online, subbing cod for jellyfish, and improvising to suit our tastes— “Faux Pho,” we dubbed it.
The journey from harassing a toddler with banana bread to refereeing for kids who clamor for the last quivering forkful of bone marrow didn’t happen overnight. I acknowledge that luck likely played a role—my kids don’t have the texture issues, taste sensitivities or reflux that some pickier eaters have. But I also think their road to culinary adventurousness was built on deliberately created habits: getting involved with choosing ingredients, helping prepare meals, and eating dinners together as a family—no special meals just for kids.
I never sneaked good-for-you ingredients into “deceptively delicious”-looking food. Instead, we openly discussed how to eat enough of the food required for our bodies to be healthy. My boys learned how to make smoothies in the blender when they were in kindergarten—sure, the individual ingredients were disguised in the making of it, but they still got to see each chunk of fruit or leaf of kale as it went in.
I also got in on the palate-expanding action: A few years ago, I found a way to overcome my lifelong aversion to eggs with the help of my kids, who were already eggs-for-breakfast lovers like their dad. Their suggestion? Bacon. Now I make “momlets” with mostly veggies and a little bacon glued together with eggs. Look at me, all grown up!
This is not to say that my kids always eat everything they’re served. I still can’t get the younger one to eat sautéed spinach, but he’ll eat it raw. We’ve adopted the try-a-few-bites-of-everything rule, although I admit that it’s not always enforced. My kids are allowed two foods (totally arbitrary number!) they can flat-out refuse to eat, but even those have changed over time. For my younger son, this used to include raspberries, but now he eats them with abandon. I recently overheard him talking to his brother about how that changed: “I think I ate them on top of ice cream once and decided they were pretty good,” he explained. “Maybe the key to liking new foods is trying them out with something you know you already like.”
I also think my kids’ willingness to try new foods gain momentum because they believe their own hype: They like the reactions they get when they slurp a raw oyster or order beef-tongue tacos at a restaurant. Like many of the other things I struggled with as a new mom, that stress-cloud that used to follow me daily is now a distant memory.
Listen, I know it’s not easy to negotiate your kids’ food issues, but I’ve seen both sides of it and I can attest that, at least in my experience, it gets better. I’m pretty sure that chef Yoder was right: Exposing your kids to the good stuff—where it comes from, how it’s made, why it’s good for you and how it tastes when it’s prepared right—encourages them to embrace more culinary possibilities.
That, plus a little bacon.
Adrienne Wichard-Edds is a freelance writer who still can’t bring herself to eat an oyster. Follow her on Twitter at @WichardEdds.
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“Are we going to eat those?” my younger son asked me incredulously—or was it hopefully?—gesturing toward a pair of slippery, glassy-eyed fish heads that had been freshly cleaved from their bodies. I was on assignment in Virginia for a food magazine, eating with my husband and our two sons, ages 7 and 9, at the chef’s table in the kitchen of the Clifton Inn in Charlottesville. While the fish bodies were being filleted and prepared for that night’s menu, the heads were seasoned, flipped on a grill, and quickly served up to us on a butcher block.
“You can eat the brains and the eyes,” said the tattooed sous-chef on the other side of the counter, “but the cheeks are really the best part.” To my delight, everyone in my family eagerly picked up their forks.
The next day, I was talking with the inn’s then-chef, Tucker Yoder, about how much my kids enjoyed dinner (the fish heads being a highlight). They tasted—if not devoured—all of the 24 small plates that were pushed across the counter toward us. Yoder, a critically acclaimed chef who has four kids of his own, nodded in solidarity: He told me how one of his daughters never wanted PB&J sandwiches in her lunch box in kindergarten, so he sent her to school with fruit and charcuterie.
We bonded over our kids’ shared adventurousness, which he lamented was rare among their elementary-school-aged peers. But why?, we wondered. And how do we fight the American diet, or the “endless pantry” syndrome (as my mom calls it), where parents scramble to offer option upon option to their kids at meal times, desperate to find healthy foods that their kids won’t reject? Tucker’s assessment: If you expose your kids to the good stuff, eventually they’ll eat the good stuff.
I, too, was once a victim (perpetrator?) of endless pantry syndrome. I distinctly remember tears—both his and mine—as I performed desperate circus acts trying to feed regular food to my first-born after his pediatrician told me that, at 14 months old, it was high time my kid stopped relying on jarred baby food. I felt deficient as a parent for letting my kid eat only mush for so long, and I wondered if I had screwed up his health for good.
Around that time, a friend who was also a nurse and a veteran mom watched me obsessively trying to convince my son to eat banana bread (come on—who doesn’t like banana bread!?), appealing to him with a new bite of bread every few minutes after he’d rejected the last one. She laughed politely at my totally ineffective helicopter-feeding techniques: “Well, if he doesn’t eat, it won’t be for lack of your trying.” I was both mortified and exhausted.
But by the time he was 15 months old, we discovered that homemade chicken barley soup was an acceptable alternative to those tiny jars of puree. Pancakes that he could smash in his fists and stuff in the general vicinity of his mouth were cause for celebration. Those were small victories in the early years, punctuated by even more struggles as I spent the better part of my days trying to figure out what to buy, how to cook it, and when to feed my kid for the best possible results. Finding food that he would eat was a daily stress-cloud that followed me from breakfast through dinner.
In a demonstration of God’s evenhandedness, our second baby transitioned to table food more easily than his brother (before he was 2 years old, he reached across the table and grabbed a fried oyster off my husband’s fork and jammed it into his mouth). But even then, for many of my kids’ preschool years, we were stuck in the American diet/endless-pantry routine, where it was just easier to heat up meals that consisted of chicken nuggets, pizza or mac-n-cheese with the requisite baby carrots. I didn’t have the time or energy for much more than that.
And then.
One summer night, when the boys were old enough to keep themselves occupied for an hour while I made dinner, I decided to try gazpacho out on them. I knew they would eat spears of raw bell peppers and cucumbers, and I had seen them chow down on chips and salsa at Mexican restaurants; I thought maybe I could use chips as an incentive for them to eat the soup. So in a fit of hopeful creativity, I whipped up some gazpacho and served it to them in artfully garnished bowls, complete with sides of tortilla chips. I took a step back to admire my creation and waited for Martha Stewart to call me so she could feature my adorable-and-healthy dinner idea in her magazine.
[I was a picky eater and now my kids are]
“Just like at the restaurant!” I chirped, hopefully.
Nothing.
“It’s made with cucumbers and red, green and yellow peppers—you like those! These are just blended up,” I tried to convince them. My boys just blinked at me, Morse code for Nice try, Mom. Cups of gazpacho were pushed aside as the chips—and my enthusiasm—disappeared. Martha never called.
A few weeks later, however, I took another stab at the gazpacho—only this time, I prepped all the veggies and piled them up on cutting boards alongside the necessary ingredients on the counter. I invited my older son to measure out the oil and vinegars and dump handfuls of raw veggies into the blender. He got to push the buttons while I supervised. Of course, his brother wanted in on the action, too. Lo and behold, not a drop of gazpacho was left in the bowls that night.
So what happened? Maybe their palates had matured just enough to be sold on cold tomato soup, or maybe each brother was trying to impress the other with what he dared to eat, but I was convinced that having them help make dinner—that they took ownership of what they were eating—was what made the difference.
I soon discovered that make-your-own versions of anything had a high success rate: Instead of preparing a salad for the table, we would make a “salad bar” with all the chopped ingredients for the kids to assemble themselves. A friend showed me how to make pozole (a Mexican chicken soup) with slices of lime and avocado, shredded cabbage and crumbled tortilla chips to pile into the bowls as you please. Both big hits.
Invent-your-own dishes worked, too: After watching a documentary on how Japan was combating its invasive jellyfish problem by eating them in a noodle-filled soup, my boys asked if we could make something like that (I tried to hide my horror at the idea, but figured out that, basically, they just wanted to eat noodle soup). We went about creating our own Asian noodle soup by looking up recipes online, subbing cod for jellyfish, and improvising to suit our tastes— “Faux Pho,” we dubbed it.
The journey from harassing a toddler with banana bread to refereeing for kids who clamor for the last quivering forkful of bone marrow didn’t happen overnight. I acknowledge that luck likely played a role—my kids don’t have the texture issues, taste sensitivities or reflux that some pickier eaters have. But I also think their road to culinary adventurousness was built on deliberately created habits: getting involved with choosing ingredients, helping prepare meals, and eating dinners together as a family—no special meals just for kids.
I never sneaked good-for-you ingredients into “deceptively delicious”-looking food. Instead, we openly discussed how to eat enough of the food required for our bodies to be healthy. My boys learned how to make smoothies in the blender when they were in kindergarten—sure, the individual ingredients were disguised in the making of it, but they still got to see each chunk of fruit or leaf of kale as it went in.
I also got in on the palate-expanding action: A few years ago, I found a way to overcome my lifelong aversion to eggs with the help of my kids, who were already eggs-for-breakfast lovers like their dad. Their suggestion? Bacon. Now I make “momlets” with mostly veggies and a little bacon glued together with eggs. Look at me, all grown up!
This is not to say that my kids always eat everything they’re served. I still can’t get the younger one to eat sautéed spinach, but he’ll eat it raw. We’ve adopted the try-a-few-bites-of-everything rule, although I admit that it’s not always enforced. My kids are allowed two foods (totally arbitrary number!) they can flat-out refuse to eat, but even those have changed over time. For my younger son, this used to include raspberries, but now he eats them with abandon. I recently overheard him talking to his brother about how that changed: “I think I ate them on top of ice cream once and decided they were pretty good,” he explained. “Maybe the key to liking new foods is trying them out with something you know you already like.”
I also think my kids’ willingness to try new foods gain momentum because they believe their own hype: They like the reactions they get when they slurp a raw oyster or order beef-tongue tacos at a restaurant. Like many of the other things I struggled with as a new mom, that stress-cloud that used to follow me daily is now a distant memory.
Listen, I know it’s not easy to negotiate your kids’ food issues, but I’ve seen both sides of it and I can attest that, at least in my experience, it gets better. I’m pretty sure that chef Yoder was right: Exposing your kids to the good stuff—where it comes from, how it’s made, why it’s good for you and how it tastes when it’s prepared right—encourages them to embrace more culinary possibilities.
That, plus a little bacon.
Adrienne Wichard-Edds is a freelance writer who still can’t bring herself to eat an oyster. Follow her on Twitter at @WichardEdds.
*****************
Wednesday, August 5, 2015
AWARENESS WATCH: TECH INNOVATORS HELP THOSE WITH SPECIAL NEEDS
I could have also called this Good News watch. As it is good news--read on:
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In an often self-absorbed Silicon Valley, where startups are sometimes accused of obsessing on petty first-world problems instead of making the world a better place, several Bay Area entrepreneurs were honored this week in New York City for doing the latter.
One created an app that helps people who are hard-of-hearing track multiple voices in a conversation. Another came up with a wearable device that literally speaks for people with cognitive and communicative disabilities. And the third project uses iBeacon technology that allows those who with visual impairment to navigate public areas.
“As engineers, we’ve always wanted to find a way to help people,” said Ashwin Kumar, a San Francisco engineer whose beacon-technology startup, Enlight, won a $10,000 award from the Connect Ability Challenge, co-sponsored by AT&T and New York University’s Ability Lab. “But this is the first time we’ve worked on a solution that’s directly helping a population that desperately needs such a product.
“There’s been a lot of press in Silicon Valley,” said Kumar, “about people solving problems that aren’t really that big, like faster ways to share photos. But this project felt good to work on and to know how amazing it would be for someone to use our app to get around. It’s very humbling for us.”
For the past three months, engineers and innovators like Kumar worked on new and innovative solutions for people with physical, social, emotional and cognitive disabilities as part of the Connect Ability Challenge. Of the 63 software, wearable and other technology solutions submitted by developers from 16 states and 15 countries, 10 were honored this week at a ceremony that coincided with the 25th anniversary of the Americans with Disabilities Act. A total of $100,000 was given out with the grand prize going to Austria’s Kinesic Mouse, a mobility solution that allows users to control a PC hands-free.
A panel of experts from the engineering, technology and disability communities awarded cash prizes with funding from AT&T and the Rehabilitation Engineering & Assistive Technology Society of North America.
“As our technology continues to evolve, we are finding new ways to improve the lives of the disabled, increase their access to technology and allow them to more fully enjoy the benefits of modern life. That’s what this challenge is all about,” U.S Sen. Chuck Schumer, D-N.Y., told the crowd.
Taking the $10,000 award for best solution for people with communicative and cognitive disabilities was a 2-year-old San Francisco startup called Drumpants, already known among techies and fans of the ABC-TV show “Shark Tank” for the playable, wearable technology it calls “the world’s first industrial quality wearable musical instrument.” For this challenge, Drumpants tweaked its technology to create Taps, a wearable device with sensors that a person with a disability can tap to trigger custom phrases recorded on their smartphone app.
“Using our technology, we’ve expanded out wearable triggers to help people do things like control devices and turn on lights,” said team lead and CTO Tyler Freeman. “It’s like having a personal assistant that’s triggered by sensors on your clothes or on your wheelchair or cane. People with limited mobility or who have trouble speaking can tap a sensor, and their phone will speak phrases for them. Each trigger brings up a different phrase.”
Product Manager Mike Zinn said the tool will help caregivers understand a person’s needs, like “I need to use the washroom” or “Please help me stand up” or that most powerful phrase of all, “Leave me alone.”
Freeman said the first batch of Taps has already sold out and that more are on their way. The unit sells for $400, which he said is much more reasonable than a competitor’s product that goes for $1,200.
The third Bay Area winner was a Berkeley-based startup called Transcense, whose entry is a mobile solution called Ava that helps people with hearing disabilities by tracking conversations in the surrounding area and translating the sound into text for mobile and tablet use in real time. The app will be available Sept. 21 in beta form and eventually, said CEO Thibault Duchemin, they hope to offer various subscription levels up to $30 a month, which would allow users to participate in unlimited conversations.
Duchemin got the inspiration for the device after growing up in Paris with a mother, father and sister who are all deaf. He could see first-hand how difficult it was for individuals who are hard-of-hearing to follow more than one speaking voice at a time.
“In my family, we call it ‘the Thanksgiving syndrome,’ where everyone is talking at once,” he said. “For a deaf person, losing the flow of the conversation makes you suddenly feel super alone because so many people are talking around you that it’s all a blur.”
The winning apps all sound good to Frances Merrill, information and referral coordinator for Silicon Valley Independent Living Center in San Jose. Because she has cerebral palsy and must often use a power chair to get around, the 54-year-old Merrill said wearable sensors like the ones Drumpants has come up with could be a real blessing.
“Any new product or device that can help more people stay independent or become more independent,” she said, “I’d welcome. These new technologies are 100 percent important because they can give new freedom to people who have trouble walking or are hard of hearing.”
© 2015 the San Jose Mercury News
Distributed by Tribune Content Agency, LLC
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*********************
In an often self-absorbed Silicon Valley, where startups are sometimes accused of obsessing on petty first-world problems instead of making the world a better place, several Bay Area entrepreneurs were honored this week in New York City for doing the latter.
One created an app that helps people who are hard-of-hearing track multiple voices in a conversation. Another came up with a wearable device that literally speaks for people with cognitive and communicative disabilities. And the third project uses iBeacon technology that allows those who with visual impairment to navigate public areas.
“As engineers, we’ve always wanted to find a way to help people,” said Ashwin Kumar, a San Francisco engineer whose beacon-technology startup, Enlight, won a $10,000 award from the Connect Ability Challenge, co-sponsored by AT&T and New York University’s Ability Lab. “But this is the first time we’ve worked on a solution that’s directly helping a population that desperately needs such a product.
“There’s been a lot of press in Silicon Valley,” said Kumar, “about people solving problems that aren’t really that big, like faster ways to share photos. But this project felt good to work on and to know how amazing it would be for someone to use our app to get around. It’s very humbling for us.”
For the past three months, engineers and innovators like Kumar worked on new and innovative solutions for people with physical, social, emotional and cognitive disabilities as part of the Connect Ability Challenge. Of the 63 software, wearable and other technology solutions submitted by developers from 16 states and 15 countries, 10 were honored this week at a ceremony that coincided with the 25th anniversary of the Americans with Disabilities Act. A total of $100,000 was given out with the grand prize going to Austria’s Kinesic Mouse, a mobility solution that allows users to control a PC hands-free.
A panel of experts from the engineering, technology and disability communities awarded cash prizes with funding from AT&T and the Rehabilitation Engineering & Assistive Technology Society of North America.
“As our technology continues to evolve, we are finding new ways to improve the lives of the disabled, increase their access to technology and allow them to more fully enjoy the benefits of modern life. That’s what this challenge is all about,” U.S Sen. Chuck Schumer, D-N.Y., told the crowd.
Taking the $10,000 award for best solution for people with communicative and cognitive disabilities was a 2-year-old San Francisco startup called Drumpants, already known among techies and fans of the ABC-TV show “Shark Tank” for the playable, wearable technology it calls “the world’s first industrial quality wearable musical instrument.” For this challenge, Drumpants tweaked its technology to create Taps, a wearable device with sensors that a person with a disability can tap to trigger custom phrases recorded on their smartphone app.
“Using our technology, we’ve expanded out wearable triggers to help people do things like control devices and turn on lights,” said team lead and CTO Tyler Freeman. “It’s like having a personal assistant that’s triggered by sensors on your clothes or on your wheelchair or cane. People with limited mobility or who have trouble speaking can tap a sensor, and their phone will speak phrases for them. Each trigger brings up a different phrase.”
Product Manager Mike Zinn said the tool will help caregivers understand a person’s needs, like “I need to use the washroom” or “Please help me stand up” or that most powerful phrase of all, “Leave me alone.”
Freeman said the first batch of Taps has already sold out and that more are on their way. The unit sells for $400, which he said is much more reasonable than a competitor’s product that goes for $1,200.
The third Bay Area winner was a Berkeley-based startup called Transcense, whose entry is a mobile solution called Ava that helps people with hearing disabilities by tracking conversations in the surrounding area and translating the sound into text for mobile and tablet use in real time. The app will be available Sept. 21 in beta form and eventually, said CEO Thibault Duchemin, they hope to offer various subscription levels up to $30 a month, which would allow users to participate in unlimited conversations.
Duchemin got the inspiration for the device after growing up in Paris with a mother, father and sister who are all deaf. He could see first-hand how difficult it was for individuals who are hard-of-hearing to follow more than one speaking voice at a time.
“In my family, we call it ‘the Thanksgiving syndrome,’ where everyone is talking at once,” he said. “For a deaf person, losing the flow of the conversation makes you suddenly feel super alone because so many people are talking around you that it’s all a blur.”
The winning apps all sound good to Frances Merrill, information and referral coordinator for Silicon Valley Independent Living Center in San Jose. Because she has cerebral palsy and must often use a power chair to get around, the 54-year-old Merrill said wearable sensors like the ones Drumpants has come up with could be a real blessing.
“Any new product or device that can help more people stay independent or become more independent,” she said, “I’d welcome. These new technologies are 100 percent important because they can give new freedom to people who have trouble walking or are hard of hearing.”
© 2015 the San Jose Mercury News
Distributed by Tribune Content Agency, LLC
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