Wednesday, June 10, 2015

FOR ALL THE MOMS (ESPECIALLY MOEBIUS MOMS): WHY YOU FEEL GUILTY TAKING TIME OFF...AND WHY YOU SHOULDN'T

From a recent edition of the Washington Post.  Read the whole thing, all you moms, and see what you think:

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My wife was sitting cross-legged on the bed doing schoolwork on a laptop. To her right was a bag of licorice. It was a Saturday, after 9 p.m., and the kids were asleep. I was getting ready for bed, when she said, “I didn’t get a Mel Night this week.”
She said it while my back was turned, and my knee jerk reaction was to get irritated. Each week I kick her out of the house, and she goes out for a few hours to do whatever she wants. No kids. No husband. It is her time. We’ve been doing it for almost a year now, and slowly we have started to call it Mel Night.
There are a few problems with Mel Night. We can’t always make it work because of school, or work, or kids’ sports and other obligations. Sometimes we get so caught up in things that we completely forget about it. That’s not so shocking, though. What really blows my mind about Mel Night is that I literally have to nudge her out the door. Sometimes it feels like if I don’t make a serious effort to get her out, she will not go. Instead, she will stay home and fuss over our three children.I assumed that each week she’d be excited to get out of the house. But she isn’t. She seems reluctant to leave, like she’s heading off for something she shouldn’t be doing. But it’s far from that: She usually goes out with friends from church or works on genealogy. When she comes home, though, she always seems refreshed, like she’s ready to take on her life as a stay-at-home mom with new vigor. Her mood is better the rest of the week. Giving her that time off makes our marriage better, honestly.
The reason I was irritated that Saturday night, though, was because every time she doesn’t get out, she brings it up later in the week, as though I should have done more to get her out. I don’t get it. I feel like she should be fighting for this time alone. It should be a well-earned pleasure that she should take, guilt free, and not have me nagging her each week to get out and enjoy herself.
I turned around, let out a deep breath, and said, “Why didn’t you remind me? I want you to have a night out. You deserve time that isn’t child centered.” I pointed at her. “I shouldn’t have to kick you out of the house each week.”
She shrugged. “I just get wrapped up in stuff,” she said.  “Sometimes I just feel like what I want doesn’t matter.”
And what I think she wanted to say was, “Sometimes I feel like what I want doesn’t matter as much.”
The tricky thing is when Mel does something on her own, like go to the store, she is still doing something for the kids. Her whole life revolves around doing things for the family. It’s a strange twisted circular thing that makes motherhood all-consuming. Having a night off breaks that cycle. Yet, she still feels guilty about it. Guilty enough that she often just lets Mel Night pass by.
When I think about her guilt, I think about how few things are as selfless as being a mother. And how much pressure that brings. Pictures on Facebook and Pinterest show mothers living in a spotless, happy world filled with homemade designer birthday cakes, and organic food. Mothers feel like they shouldn’t think about personal pleasures outside the family, because if they do, it will be viewed as selfish.
As a father, I can admit to having a hobby outside of children and when I do, I don’t seem like a distracted parent. But society is not as willing to cut mothers that same slack. It’s as if it’s inappropriate for a mother to enjoy pleasures that don’t involve her children, and I think it’s this social pressure that keeps Mel from easily taking one evening off a week. And when I think about that, motherhood becomes the most demanding job in the history of ever. It’s riddled with social guilt that makes a mother align her needs with those of her children, and only her children, and anything else is suspect.
Making sure Mel has a night off — from all of us — has really helped her to feel that her work is valuable. It shows her that the family notices what she’s doing, how crazy her life is, and that she deserves a break. And honestly, it’s nothing in the grand scope of parenting. She deserves more time off, but with Mel’s school, small kids, and my job, even an evening off a week can be hard to swing.
But none of that has been as challenging as helping Mel to understand that she does, indeed, deserve that time off, and if she does take it, she’s not being selfish.
“I’m not giving up on this,” I said. “You will take time off from the kids. And you will enjoy it. What day are you going to take off next week?”
We talked about our schedule, our next week, what evening would work best. “Saturday,” I said. “That will work.”
“Yes,” she said. “Okay.”
“Good,” I said. “And don’t feel guilty, okay?”
She smiled. “I won’t.”
We’ll keep working on that.

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Tuesday, June 9, 2015

MOEBIUS SYNDROME IN THE NEWS

Just in case you have not seen it yet--news from the Moebius Syndrome Foundation:

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Pilot Grove, MO - The Moebius Syndrome Foundation, the nation's largest organization dedicated to the support of individuals and families with Moebius syndrome, is proud to announce Kim Cunningham as its new executive director. She began her new position on June 8, 2015.

Cunningham brings the organization more than fifteen years of executive leadership, communications and development experience in the nonprofit sector. Previously, she served as Executive Director for the Children's Well-Being Foundation and as Director of Public Relations and Managing Director of Development for the American Medical Student Association, the oldest and largest independent organization of physicians-in-training in the United States. Cunningham has extensive experience in the healthcare industry and with patient advocacy organizations.

"We are happy to have Kim on board to take the Moebius Syndrome Foundation to the next level," says Vicki McCarrell, President and Co-Founder. "Kim's experience in communications, development, and leadership will help raise awareness of this rare neurological congenital condition which renders those affected with 'smiles that come from the heart.' "

"The Moebius Syndrome Foundation has a powerful mission and I am honored to have been selected to serve the organization and work with this amazing community," says Cunningham. "As the first executive director, this is an exciting time for the Foundation. I look forward to this new challenge and will dedicate myself to raising awareness and understanding of Moebius syndrome."

About the Moebius Syndrome Foundation

Founded in 1994, the Moebius Syndrome Foundation provides information and support to individuals with Moebius syndrome and their families. The Foundation promotes greater awareness and understanding of Moebius syndrome and advocates for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. For more information on Moebius syndrome, the Foundation or becoming a member, please visit www.moebiussyndrome.com.

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Monday, June 8, 2015

INFORMATION DEPT.

Children with Moebius Syndrome sometimes (though by no means always) have autistic tendencies as well; so we try to keep up with autism news here.  Today:  recent research indicates that one's level of autism can be tied to stress levels:

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The severity of a child’s autism may be directly linked with the level of stress or anxiety they experience on a day-to-day basis, a new study suggests.
Levels of the stress-hormone cortisol remain significantly higher throughout the day in children with low-functioning autism as compared to typically-developing kids and those on the high-functioning end of the spectrum, according to findings published in the Journal of Developmental and Physical Disabilities.
For the study, researchers at Canisius College in Buffalo, N.Y. collected saliva samples three times each day over two different weekends from 43 kids ages 7 to 12. The group included children with no diagnosis as well as kids with autism and an IQ below 70 — considered low-functioning — and high-functioning individuals with IQs above 85.
All of the children exhibited typical patterns in their cortisol levels, with the hormone at its highest in the morning and getting progressively lower throughout the day. However, the exact amount of cortisol seen in low-functioning children was distinct, researchers found.
“Children with (lower-functioning autism) had significantly higher cortisol, the stress indicator, across the day than both the (high-functioning children with autism) and typical children and, interestingly, children with (high-functioning autism) did not significantly differ from the typical children across the day,” said Susan Putnam of the Institute for Autism Research at Canisius College who led the study.
Putnam and her colleagues said the results point to a link between stress in the body and functioning ability and IQ. However, it is unclear, they said, whether the increased cortisol observed in those with more severe autism is a result of neurological impairment or heightened sensitivity to the environment.

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In other news:  the US Labor Department says that the number of persons with disabilities active in the American workforce is on the rise:
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The number of people with disabilities in the workforce is ticking up, the U.S. Department of Labor said Friday.
Figures from the agency’s monthly employment report indicate that more Americans with disabilities were employed in May than the month prior, though the unemployment rate for this population remained largely unchanged at 10.1 percent.
Meanwhile, the Labor Department reported that 280,000 jobs were added to the economy as a whole and the employment rate for the general population also remained steady at 5.5 percent.
Federal officials began tracking employment among people with disabilities in October 2008. There is not yet enough data compiled to establish seasonal trends among this population, so statistics for this group are not seasonally adjusted.
Data on people with disabilities covers those over the age of 16 who do not live in institutions. The first employment report specific to this population was made available in February 2009. Now, reports are released monthly.

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Friday, June 5, 2015

AWARENESS WATCH: SOME GOOD NEWS FROM THE HUMAN RESOURCES DEPT.

In the UK, Changing Faces' advocacy on the job front on behalf of those who have a facial difference is slowly having an effect.  See for example what one of the UK's leading magazines for HR professionals has to say on the matter:

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Employers and jobseekers are being helped to overcome barriers to employment in new guidance published by Changing Faces, the national charity that supports people living with a scar, mark or condition that affects their appearance.

Almost one in every hundred people of working age has a facial disfigurement. A recent survey by the charity found 43% of respondents had avoided applying for a job because they believed their face wouldn’t 'fit', while 46% had experienced being treated differently by an interviewer.

Academic research by Madera and Hebl (2013) also suggests that interviewers are not only less likely to select a candidate who has a facial birthmark or scar, but are less able to remember the content of their interview responses compared with one who doesn’t.

This behaviour is not necessarily something recruitment professionals do on purpose. Aside from the few who are concerned about the impact an employee who looks different might have on their customer relationships, interviewers are often so keen not to offend that they pay more attention to regulating their own responses than to listening to what the candidate has to say.

We know that to achieve ‘face equality’ we need to break down taboos and ensure applicants with disfigurements are seen as successful contributors to the workforce. The first step is to help everyone get past their discomfort and work towards a mutual understanding and approach.

Changing Faces' guides for employers and jobseekers cover similar concerns but from different perspectives, and are designed to complement one another. The Guide for Employers advises on responsibilities under the Equality Act 2010 and suggestions for improving concentration. It includes scenarios such as what to do if a candidate has disclosed a disfigurement in advance, to managing one’s surprise if they haven’t.

The Guide for Jobseekers features practical suggestions for how, when and whether to talk about their scar, mark or condition, as well as ideas for challenging inappropriate questions and overcoming an interviewer’s awkwardness.

The Equality Act 2010 protects jobseekers and employees with severe disfigurements, so potential legal implications provide a clear incentive to employers to know best practice and ensure interviewers are skilled and confident enough to provide a fair and equal interview.

Leading London law firm Taylor Wessing was the first to support the new guidance. Its HRD Caroline Rawes said: “These guides enable every employer to provide a fair and equal recruitment process when an applicant has a scar, mark or condition that affects their appearance. The detailed information gives clarity, provides useful guidance, and allows for open and flexible communication, and I hope Taylor Wessing will be the first of many firms to adopt the guidelines.”

The guides were produced as part of the charity’s ‘What Success Looks Like’ campaign to transform attitudes and confidence around the recruitment process. The campaign raises awareness of good practice and highlights career success stories of people with a facial difference.

Sally Mbewe is a business psychologist and Face Equality at Work adviser at the charity Changing Faces

- See more at: http://www.hrmagazine.co.uk/hro/features/1151829/ensuring-fair-recruitment-practices-for-those-with-a-facial-disfigurement#sthash.Rcz2KtWl.dpuf

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Wednesday, June 3, 2015

THE COLLECTIVE WISDOM OF 2015'S GRADUATION SPEECHES

Just because I thought it was interesting:

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Trust yourself

"I want you all to stay true to the most real, most sincere, most authentic parts of yourselves. I want you to ask those basic questions: Who do you want to be? What inspires you? How do you want to give back? And then I want you to take a deep breath and trust yourselves to chart your own course and make your mark on the world." -- First Lady Michelle Obama at Tuskegee University
Don't let others judge you
"As you go out in the world, you'll find that people are always quick to define you, to pigeonhole you, to whittle you down to their preconceived notions—which brings me to my point: Never let others define you. Define yourselves." -- Actor Ed Helms at the University of Virginia

    Take action

    "The sidelines are not where you want to live your life. The world needs you in the arena. There are problems that need to be solved. Injustices that need to be ended. People that are still being persecuted. Diseases still in need of cure. No matter what you do next, the world needs your energy, your passion, your impatience for progress. Don't shrink from risk. And tune out those critics and cynics. History rarely yields to one person, but think, and never forget, what happens when it does. That can be you. That should be you. That must be you." -- Apple CEO Tim Cook at The George Washington University

    Follow your intuition

    "From this day forward, you will have to rely not on grades or guidance from professors to tell you how you're doing and where you stand. You will have to rely, instead, on an inner compass; whether that compass is true will determine whether you become a drifter who is blown about by every breeze; or a doer, an active citizen determined to chart your own course, question your assumptions, and, when necessary, sail unafraid against strong winds." -- Former Secretary of State Madeleine Albright at Tufts University

    Be yourself

    "Only authenticity will keep your head on straight and your feet firmly planted. So don't strive for somebody else's notion of perfection. It's an unattainable and ultimately ridiculous goal. Strive instead to be uniquely yourself. And, when in doubt, listen to your gut, because it already knows what you want to become." -- Journalist and TV Host Meredith Vieira at Boston University

    It's okay to fake it

    "First, and this is foundational, if you want to change the world, start by 'acting as if.' Prior generations have put this a different way—'Fake it 'til you make it.'" -- US Ambassador to the United Nations Samantha Power at University of Pennsylvania

    Don't stop learning

    "Keep reaching. Keep seeking. Keep using your abilities to bring out the best in those around you, and let them bring out the best in you. Become the next great generation! You can and you will—dare I say it, change the world!" -- Scientist Bill Nye at Rutgers University

    Create your own set of standards

    "People my age will sometimes say to you, 'Hey, that work you did, that thing you said, that cause you championed, it's not good.' Well, having your own standards will help you weather moments like that. Having your own standards allows you to perceive success where others may see failure." -- TV Host Stephen Colbert at Wake Forest University

    Take some time to really think

    "Now is the time to consider all the infinite possibilities with introspection, deliberation and thoughtfulness. Visualize the road ahead. Think about what excites you, what really gets your engine going. Engage in some real soul searching. Take a good, hard look at your strengths and weaknesses. A fulfilling professional life can be found at the intersection of what you love and what you're good at. And when you think you've discovered it, go at it full throttle." -- Journalist Katie Couric at University of Wisconsin-Madison

    Be 'present' at work

    "Don't waste time bemoaning your job. Don't skim by with the minimum of effort. Dive in. Get more from your job than the paycheck. Hard work is living large." -- Former Massachusetts Governor Mitt Romney at Saint Anselm College

    Put in the hard work

    "Life's not easy. Don't try and make it that way. It's not fair, it never was, it isn't now, it won't ever be. Do not fall into the entitlement trap of feeling you are a victim, you are not. Get over it and get on with it. And yes, most things are more rewarding when you break a sweat to get them." -- Actor Matthew McConaughey at the University of Houston

    Keep an open mind

    "So if I must give any of you advice it would be Say Yes. Say Yes, And... and create your own destiny." -- Actress Maya Rudolph at Tulane University

    A diploma isn't the only thing that matters

    "Don't forget about what doesn't come from this prestigious diploma—the heart to know what's meaningful and what's ephemeral; and the head to know the difference between knowledge and judgment." -- Vice President Joe Biden at Yale University

    Don't let fear get in the way

    "Don't worry about the fear factor. Everybody in here has felt it and will feel it. It is something that you have to realize that if you wait for it to pass you're going to be sitting on the sidelines for a very long time." -- Journalist Robin Roberts at Emerson College

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    Tuesday, June 2, 2015

    LOOKING ON THE POSITIVE SIDE OF STRESS

    I just thought this was interesting; because it seems like everyone, have you Moebius or not, has stress.  But you don't have to stress out over it:

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    Don't stress out! Or do. Despite the bad reputation that stress has long held, there is a growing appreciation that pressure has its perks.
    "You think that stress is bad, but research shows that in moderation and with the proper resources, not all stress is bad," said Elisabeth Conradt, assistant professor of psychology at the University of Utah.
    The difference between bad and good stress, some experts argue, is all in how we view the situation. It is the difference between feeling distress, the ugly side of stress we all know too well, versus its feel-good cousin called eustress.
    At least that is the premise in the book "The Upside Of Stress: Why stress is good for you and how to get good at it," which came out this month. It was written by Kelly McGonigal, a psychologist at Stanford University, and there is research to back up her argument. A 2013 study, for example, suggested that people who saw stress as a natural response were better able to fend off panic and perform well in a public speaking task.
    The benefits of surviving stressful situations, and coping with them effectively, could add up. "The thought is that this can set you up to be more resilient to facing stressors later on," Conradt said.
      The ability to withstand stress may also help you harness the benefits that come with being in a bind. One small study found that young men had boosts in their short-term memory after they were put in a socially stressful situation. Other reports suggest that pressure can make youmore creative and responsible.

      The good, the bad and the toxic

      Although events or life changes, such as buying a house or getting married, seem joyous, they are stressors nonetheless. "Nothing is objectively positive, it's all in how you perceive it," said Todd Kashdan, professor of psychology at George Mason University. "People stress about these things and our thoughts about these situations matter immensely," he said.
      Likewise, most situations are also not objectively negative, although some do qualify, Kashdan said. Assault, natural disaster and losing a job are a few. Still, these stresses are manageable, especially with support from family and friends.
      Yet there are cases where stress can be dangerous. Toxic stress, which can be borne out of high-level or frequent adversity, occurs when our body's stress response that normally helps us cope with a difficult situation -- including increased heartbeat and stress hormone levels -- goes into overdrive. It can have lasting damage, particularly in children, who may suffer developmental delays and face higher risk of chronic diseases.

      The more you know

      The 2013 study that asked people to engage in public speaking gave about half the participants a lesson about stress before they went into the uncomfortable situation. The lesson covered how the body's stress response is important for survival and studies on the psychological benefits of stress. Not only did the educated half have a more mild physical response to public speaking, such as maintaining a lower heart rate, they also performed better according to a panel of judges.
      "Public speaking can be a stressful thing for a lot of people," said Conradt, who was not involved in the study. "In this research it's all about how you appraise the situation and how you think about what it means to be stressed."

      Put a label on it

      According to Kashdan, there are strategies to turn a situation such as public speaking, which he says is the greatest fear in the United States, from a terrifying threat into a motivating challenge. Part of it comes down to giving your emotions a name.
      Kashdan and his colleagues recently reviewed studies that found people who explain their emotions in specific terms are probably at lower risk of being overwhelmed in stressful situations. "If I say, 'I am sad' or 'I am angry,' instead of something crude like, 'I am stressed out,' I can solicit help or figure out what to do," said Kashdan, who is the author of, "The Upside of your Dark Side," which explores how personality traits that are generally viewed as undesirable, such as being submissive or selfish, can be advantageous.

      Perks of stress

      Stress is more than just a nuisance we have to deal with. It is a reminder that we are doing something we are passionate about. As McGonigal wrote in her book, "You don't stress out about things you don't care about, and you can't create a meaningful life without experiencing some stress."
      Kashdan agrees. Without stress, he said, "we would not have long-term relationships and friendships, parenting would be impossible, you could not become wise or strong." He added that, "Anytime there's an opportunity to showcase your strength or potential and there's a challenge, there is an opportunity for 'good stress'."

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      Monday, June 1, 2015

      TROUBLING IF TRUE DEPARTMENT

      Are some schools using truancy laws to funnel kids with disabilities off their rolls?  One hopes it is not true.  But read on--its an issue to be aware of:

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      Advocates are accusing schools across one of the nation’s largest states of using truancy laws to funnel kids with disabilities off their rolls.

      Thirteen school districts in Texas — including those in Austin, Houston, Fort Worth and San Antonio — are allegedly using truancy laws to absolve themselves of responsibilities under the Individuals with Disabilities Education Act, according to a complaint filed this week by the advocacy groups Disability Rights Texas, the National Center for Youth Law and Texas Appleseed.

      “Rather than providing these students with the special education and related services to which they are entitled — services which would allow them to stay in school and access their education — their school districts have referred them to court for the Class C misdemeanor of Failure to Attend School,” according to the complaint filed with the Texas Education Agency. “Once in court, the school districts actively force students out of their regular education programs, in violation of the students’ rights under the Individuals with Disabilities Education Act.”

      The nonprofits say that the state education agency has failed in its responsibility to ensure that schools follow special education laws and, without appropriate services, students are more likely to miss school and end up facing truancy charges. They are asking for an independent investigation and administrative remedies at the state level.

      “It is especially egregious that our most vulnerable youth are being pushed out of a system that is supposed to provide opportunity and support only to be forced to defend themselves in adult court without the assistance of an attorney,” said Deborah Fowler, executive director of Texas Appleseed.

      In Texas, students can be referred to court for truancy for having as few as three “days or parts of days” of unexcused absences within a four-week period. Once there, the threat of criminal charges and fines often compels families to accept deals requiring that they withdraw from school, advocates allege.

      The groups cite state data showing that between 2010 and 2013 over 1,200 students with disabilities were ordered by Texas courts to drop out of school and take the GED exam only to fail. In other cases, students with disabilities have been pushed into alternative schools or mandatory homeschooling after being charged with truancy, the complaint says.

      DeEtta Culbertson of the Texas Education Agency said the agency is not able to comment because they have not yet received a formal, signed copy of the complaint.

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