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:

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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."

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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:

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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.”

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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:

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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.

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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:

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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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Thursday, March 26, 2015

MOEBIUS SYNDROME IN THE NEWS

Our UK version--today we find that an actor named Samuel Phoenix from the UK, who has Moebius Syndrome, will be starring in a theater production of a screenplay titled "Lilith"--which Mr. Phoenix wrote himself!  It will be his first professional performance.  Congratulations to Mr. Phoenix--and you can read more about it here:

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A STUDENT with a rare disorder affecting his face has landed his first acting role in a professional performance.
Samuel Phoenix has had to undergo face construction surgery three times because of his Moebius syndrome but that has not stopped him from following his dream of becoming an actor and his first starring role will be in a professional performance of a play he wrote himself.
After impressing Kidderminster College tutors while studying and artist in residence Robyn Taylor-Cohen, who runs Calanit Theatre, with his script for Lilith, a script about a serial killer, the 31-year-old said this marked a great milestone in his life and proved people should not stop reaching no matter the odds stacked against them.
He said: "When I was younger, hospital was my second home as I needed so many procedures to manage my conditions. I was also constantly bullied at school because of my looks and have suffered from depression since I was 16.
"I found acting and writing was my way of finding light when I was suffering my worst bouts of depression. I refused to let my conditions beat me, even on the darkest days.
"I want people, especially anyone with muscular dystrophy or Meobius, to be inspired my story and realise they can also achieve their dreams despite all the odds."
Samuel suffers from Moebius syndrome, an extremely rare neurological disorder that affects cranial nerves, leaving those with the condition unable to move their faces, and he also has muscular dystrophy which affects his ability to walk.
"After the high profile actors playing people with disabilities received at the Oscars this year, I would love to be the first actor with a disability to win one in his own right," he added.
But despite the treatment he has had to undergo almost all his life, Samuel managed to write Lilith in just two months and has been working with Robyn to adapt his work for her stage by rewriting it to be played by women.
Lilith and Samuel will make their debuts on the stage later this year.

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Wednesday, March 25, 2015

MOEBIUS SYNDROME AND "THE DOCTORS" SHOW

I am so glad that the Templer family, and especially their son Maddox, were able to go on "The Doctors" television show, which aired yesterday for the first time (and if you have not seen it yet, you can view the episode here).  It is so important for more people around the country and around the world to learn more about Moebius, and of course it's also important for Maddox to get the help he needs, and that his family wants for him.

So I am very glad that the Templers did it, and that the show found the family and did the episode.  Now, having said all that, I do have one criticism to make.  It's not a criticism of the family and it's not of the show in general.  And by the way, in addition, I completely understand the desire to have the smile surgery, whether it be for oneself (if one is a Moebius adult) or for one's child if you are a Moebius mom or dad.  It is in so many ways natural for you to want to see your child smile, and for that child to want to do so.  If the surgery is something you want, and it can be done, then it is a perfectly legitimate choice to make, and I don't want anyone to think I am criticizing that, either.  But something said on the show raises an important question. 

At one point, early in the show, one of the doctors who I presume regularly appears on these episodes was reacting to the fact that young Maddox cannot smile.  He was ER physician Dr. Travis Stork.  And he said: “Not having a smile is a huge emotional problem for anyone."

Hmmm.  Well--I suppose it can be.  Certainly for many of us there are times when we wish we COULD smile, when we wish we could make all those facial expressions that allow one to "say" something without actually saying the word.

But you know, based on all the children, teens, and adults with Moebius I know, I have to say, Dr. Stark--really, you're wrong!  Not having a smile is NOT a huge emotional problem for all of us, nor is it, I think I can say with confidence, a huge emotional problem for most of us.  I know that's what many people assume.  They've been able to smile for all of their lives, and they can't imagine not being able to do so.  I know that's what many in the medical community assume.  I believe their thinking runs along the same lines.

But the fact is, and so many of the persons I know in the Moebius community will confirm this, there are thousands of us out there in the Moebius community right now.  We cannot smile.  But we get along just fine, and we have satisfying lives, and we are not weighed down by a "big emotional problem." 

Why not?  I think there are many reasons.  We've lived with Moebius Syndrome all of our lives.  Thus, we've lived with not being able to smile also for all of our lives.  And you know, when you've never been able to do something, you learn how to deal.  You learn how to live with it.  For example, we find, and we establish relationships, with the friends and family who we know will not judge us due to our physical differences, who will not mind the fact that we can't smile.

I think also there is the fact that we are intelligent people.  We know we can't make many facial expressions.  So we learn to compensate.  We use our hands.  We use the inflections of our voices.  We have great senses of humor, and we laugh--loudly!  And people know when we laugh.  We learn to convey expressions in ways that are not directly connected to our faces.  And you know what?  The people who know us, the friends and family who know us, they learn how to understand exactly how we are feeling.  As one of our favorite expressions goes, we smile from our hearts.  And the people who know us can tell when we're doing it.

And so I hope the medical community increasingly gets this message.  A smile is a great and beautiful thing.  I think most of us, at one time or another, have wished we could do it.  Thus I understand why some want the smile surgery; so that they or their child could do this beautiful thing.  And I understand why some assume that not being able to smile is an "emotional problem"; that's something that's been taken for granted for years.  But remember--it's not always good to assume.  No, we can't smile.  But we smile from our hearts.  We learn to deal.  We learn to compensate.  And we have beautiful lives.

Tuesday, March 24, 2015

FOR PARENTS: HOW TO MAKE YOUR CHILD A BOOK LOVER

Because what parent doesn't hope to see this?  Here are some tips--from a recent piece in the Washington Post:

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I might not be good at some parts of this parenting gig: my son is more obsessed with screens and technology than I’d like, and the whining in this house regularly makes me want to cover my ears and lock myself in the bathroom. But, much to my delight, all three of my kids are avid book-lovers, and part of me wants to take credit for that. (That’s always much more fun than taking credit for the less-desirable traits of our children, isn’t it?)
Maybe part of it is luck and the personalities of our kids, but much of it is not, and we parents can do a lot to cultivate a lifelong love of books in our children.
Start early. From birth (yes, birth!) we can read to our children. My mother has commented that there were very few board books available when my siblings and I were babie
My kids know their way around the stacks, the librarians all know us, and thanks to my eager children, I regularly hit the checkout maximum of 50 books per patron. It has been a part of our family life since they were born, and they beg me to stop there on our rounds of errands.
Read to calm and reconnect. Nothing, and I mean nothing, is better at my house than reading together when the day has gone sour with little ones: the tantrums (theirs, and maybe mine), the messes, the potty training accidents, the sibling bickering. In these moments, reading to my children is a bit of a rescue for all of us. The gift of the book is that whenever I open it, it calms all the raw nerves, including mine, and rubs out the hard edges of the day into something soothing, quiet, and close. Sometimes reading can’t wait for naptime or bedtime, and I need to drop the vacuum or the iPhone and just be physically and emotionally close with my children, shepherded by a book.
Skip the “learn-to-read” books. You are eager for your child to read, and he knows his letters and sounds, so you sit down with the easiest “learn-to-read” set you can find and try to get him to sound out each word. Please, don’t. In these little books, any semblance of an interesting story is sacrificed in the name of short sentences and the awkward and repetitive use of one syllable “short a” or “long U” words, or whatever fits the theme of that volume. My older two had no patience for sitting and sounding out boring books when they were kindergarten-ish age, so we quickly dropped them and just continued to read aloud while they naturally became more developmentally ready to read. And each one did, in his or her time, mostly skipping over the painful sounding-out process altogether. Even better, they continued to love books, since reading never stopped being associated with engaging stories and no-pressure togetherness.
Read even to the reading child, and read a level up. Kids are usually ready to comprehend much more sophisticated plot and vocabulary than they can read by themselves. My husband still reads to our two older children, ages 7 and 9, every night before bed. It’s a daily opportunity to connect, to expose them to advanced texts, and to open conversations about tough moral issues. Over the course of a year, they read the entire Harry Potter series when my daughter was just 5 to 6 years old. There is some heavy stuff in there, but she had her Daddy chaperoning the whole way, and she understood it and she loved it. Down the hall, I read to my 4-year-old. Starting a year ago, we kicked off chapter books with Stuart Little, followed by Mr. Popper’s Penguins, the entire Little House series, and many others. I stop often, making sure she understands, commenting, and asking her what she thinks will happen next. “Wow, Templeton really doesn’t want to help Charlotte and Wilbur, does he? Why not? What do you think he will do?” Don’t underestimate your kids – but stay with them.
Enjoy it. At our house, reading is not a milestone to check off, but a beloved part of family time for all of us. Of course, I still have to fight the screens, and the whining, and whatever else is coming down the parenting pike. But the books are here to stay – to teach us, to foster connection, to inspire and delight us, to see us through.
Sharon Holbrook is a writer living in Cleveland, Ohio. You can find her at sharonholbrook.com and on Twitter @216Sharon.

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Monday, March 23, 2015

INSPIRATIONAL STORY OF THE DAY

His parents seek support for their autistic son for his birthday--and they are overwhelmed with the response:

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It started with a simple birthday wish; a dad asking Facebook friends to make his autistic son's ninth birthday memorable by sending well wishes.
When we first reported on the appeal in early March, Chad Kleis was already overwhelmed with a shower full of cards and packages for Hunter. He had no idea what was coming after the story was broadcast.
"Since then, we have had a good eight to nine full carts from the post office delivered," Kleis said. "We can no longer pick them up because there is so much."

The greetings and gifts have come from all over the world.
It all culminated this weekend with Hunter's birthday bash at Strikz Entertainment in Frisco, where scores of other autistic kids got to join in the celebration at a party where they weren't different.
David and Jamie Dingle's 10-year-old autistic sons was among the guests. "They understand each other. There's no judgment. When you get them together like this, it starts to become like a family because you realize what other parents are going through."
Tiffany Hudson donated her time to help make the event possible.
"It just makes my heart so happy that people are caring enough about Hunter to devote their time and their resources to make this one of the best days of his life, and I think that is absolutely amazing," she said.
Chad Kleis is now inspired to do this for others, so that more children with autism — who so often feel isolated — can know there is a world of support for them out there.
"It's so humbling to see people care, and that our story touched them in a very beautiful way," he said.
Kleis calls the bigger effort Hunter's Autism Specials. Click here for more information or to get involved with Hunter's Autism Specials. You can also e-mail Chad Kleis directly: ChadKleis@Hotmail.com
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Friday, March 20, 2015

GOOD NEWS DEPT: GRADUATION RATES UP FOR DISABLED STUDENTS

And here are the details:

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An increasing number of students with disabilities are graduating high school, federal officials say, though they still receive diplomas at far lower rates than other students.

The graduation rate for students with disabilities reached nearly 62 percent during the 2012-2013 school year, representing a rise of almost 3 percent compared to two years earlier.

The figures released Monday from the U.S. Department of Education’s National Center for Education Statistics come a month after federal officials said the nation’s overall high school graduation rate reached a record-high of 81 percent in 2012-2013.

Despite the gains, however, graduation rates for students with disabilities varied tremendously from one state to the next. Mississippi reported a low of 22.5 percent while Arkansas topped the list with over 80 percent of students with disabilities receiving diplomas.

The data accounts for the number of students nationwide who obtained a high school diploma within four years. Students who completed an individualized education program but did not earn a traditional diploma and those who were held back a grade were not included.

In addition to students with disabilities, the Education Department data also pointed to lower graduation rates among blacks and Hispanics, those from low-income households and students with limited English proficiency.

“While these gains are promising, we know that we have a long way to go in improving educational opportunities for every student — no matter their zip code — for the sake of our young people and our nation’s economic strength,” U.S. Secretary of Education Arne Duncan said.

Meanwhile, President Barack Obama emphasized the need for continued investment in education in order to see further improvements.

“Making sure that we’ve got high standards and high expectations for all our kids, and making sure that we are providing the resources to teachers and principals to meet those high standards. That’s going to be important,” Obama said in remarks following a meeting with school leaders at the White House on Monday. “Making sure that we are investing in special education and English learning for large portions of our student population that may need extra help. That’s going to be critically important.”

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Thursday, March 19, 2015

A MOEBIUS FAMILY--GOING ON TV!

So we all want to be sure and tune in to an upcoming episode of the TV show called "The Doctors"--because on that show will be Moebius mom Danielle Templer and family, including her son Maddox, who has Moebius Syndrome.  This is a great thing; hopefully this can continue to build awareness concerning Moebius Syndrome.

What's "The Doctors"?  You can read more about it here.  Its website informs us that the show "is co-hosted by ER physician Dr. Travis Stork, plastic surgeon and reconstructive surgery expert Dr. Andrew Ordon and pediatrician Dr. James Sears; along with recurring co-hosts, OB-GYN Dr. Jennifer Ashton, urologist Dr. Jennifer Berman, and family doctor and sexologist Dr. Rachael Ross", and that it seeks to provide "the most up-to-date information regarding your health and wellness, as well as news-making medical stories that may affect you or your family. The Doctors strive to enlighten viewers with simple ways to attain and maintain good health." 

I messaged Danielle a few days ago and asked her how their appearance on this show came about.  She told me that what happened was that someone on the staff of the show happened to see a media story online about her family and her son; they contacted the Templers, and soon the appearance on the show was arranged.  Danielle admitted to me that she was "scared to death" of being on TV (as would I be!!!), but they've done it; the show has been taped, and it be on TV beginning March 24th.  Check your local listings for times and channels.

As I mused about this, once I heard about it, it occurred to me that the Templer's appearance has important lessons for us.  1] Undoubtedly the show found out about Maddox through media stories that appeared around the time of Moebius Syndrome Awareness Day.  See, that's why it's so important for us to get our story out there, to contact your local paper or TV station when the time is right and tell your story.  You never know what it might lead to; and you never just how much it could build awareness.

2] Absolutely doing this kind of thing CAN be scary.  It's hard to put yourself out there with people (especially media members) whom you don't know.  It's scary to go on TV and have those cameras staring at you, thinking that thousands, even millions, might see you.  But you know what?  It's okay to be scared.  Even the bravest people in the world, the persons who have done the most courageous things, have been scared.

3] No, rather, the important thing--don't let that stop you.  I applaud the Templers, and everyone else who has done this same kind of thing (don't for example forget about my friend Kelsey Ferrill from Canada, who was on CBC in January) for their courage in being willing to go on TV and tell their story, and for helping to raise awareness of Moebius Syndrome and thus raising peoples' consciousness concerning all kinds of physical and facial differences, really.  By doing these kinds of things, more will realize that, yes, we're different; but we're people too and we're valuable, just as we are. 

And so we raise awareness, one day at a time.

Wednesday, March 18, 2015

WHAT SHE LEARNED FROM HER SON

Belinda Peters' son has Facial Palsy; he has a facial difference.  She has learned a lot from him.  For example:  "I have learnt that I don't need to be a people pleaser. That I don't need to listen to people gossip about others' appearance, clothes or choices. Knowing difference means you no longer have time for those who tend to judge others based upon it. I've learnt to treasure and unearth the kind of people that I want my son to know – those who are accepting, honest and loving and who don't give a damn about what you wear or whether your house is messy."  There are many more gems like these  Read more about it:

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The moment is imprinted in my brain like it was yesterday – my first son, just hours old, held aloft by a paediatrician as she points out his asymmetrical face to a group of student doctors.
We were already so in awe and love with this precious, healthy, screaming bundle that we didn't think for a moment there could be something wrong.
Bust as I looked up, I saw it. His right eye remained open while his left was squeezed shut, his mouth pulled to one side as his cries echoed across the room. My husband and I looked helplessly at each other and back to our baby, as the doctor's voice faded in as she compared him to Sly Stallone and out as I struggled to comprehend what this all meant.
Our son, it turned out, was born with Facial Palsy, a little known condition caused by the absence of or damage to the 7th cranial nerve, which affects his ability to smile, blink and move his eyebrows on the right side of his face.
We were given two possible outcomes: that the paralysis was caused by birth trauma and it would right itself within four months, or that the issue was congenital and it would be here to stay. When he flashed me his first crooked smile when he was six weeks old, both happiness and fear flooded my body. I knew then that facial palsy would always be a part of our life and if he was to grow up different then so must I.
I mourned for the mother I thought I would be, lost in a sea of typical mothers with typical children, and grasped for the strength to be the mother I had to be. It took longer than I would have liked; I wasn't as kind to myself as I was to him; I listened too much to the voices that said "I can't even notice it" or "It's only cosmetic, isn't it?" while I ran my baby around to all his specialist appointments, to check his eyes, hearing, speech and have MRIs of his brain for a condition that no one understood or took seriously. Guilt, resentment and anger all settled heavily around my shoulders as I navigated my way through his early years.
But like anything hard won, now five years on, the perspective I have gained from that one little missing seventh nerve has somehow been the making of me. While I still worry about the challenges he will face and if he will find acceptance in a world obsessed with appearances, my son's facial difference has also taught me some important truths.
I have learnt that I don't need to be a people pleaser. That I don't need to listen to people gossip about others' appearance, clothes or choices. Knowing difference means you no longer have time for those who tend to judge others based upon it. I've learnt to treasure and unearth the kind of people that I want my son to know – those who are accepting, honest and loving and who don't give a damn about what you wear or whether your house is messy.
I have learnt not to judge others or myself so harshly. Knowing what it's like to walk along a path that I didn't expect has given me more empathy for the unexpected paths of others. I have learnt that a little kindness goes a long way and although it's infinitely harder to apply it to myself, I have learnt just how powerful it can be. If learning to be kind to himself is the one thing my son learns from me, my job here is done.
I have learnt that there is true beauty in difference and in turn I have learnt to embrace my flaws and the parts of my physical body that I've never liked. I've made peace with my freckled skin, my large calves and the nose that I've always felt was too big, and in doing so I model acceptance to my son, the type of acceptance that I'd like him to experience and pass on to himself.
In working through my son's diagnosis and the sense-making that was part of it, I have been blessed with the gift of connection to the facial palsy community. Last week (March 1 to 8) was the inaugural Facial Palsy Awareness Week, organised by Facial Palsy UK. People around the world wore half-makeup and half-beards and shared their personal stories to help others understand that while not life-threatening, facial palsy's impact – particularly psychological – is lifelong and shouldn't be overlooked. My social media feed was full of messages about the realities of living with facial palsy and photos of beautifully unique smiles just like my son's.
Overcome with the positivity of it all, I exclaimed to my son "Look, they smile just like you" and he looked up at me, flashing his widest smile, with all the joy funnelled into the left corner of his mouth, and said "What, like this?" and I felt it, the biggest lesson of all – unconditional love.


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Tuesday, March 17, 2015

FOR MOEBIUS ADULTS (AND OTHERS): THE HEALTH RISKS OF BEING ALONE

I thought this piece that I found today was interesting; because I know some of us adults with Moebius Syndrome DO sometimes prefer to be alone.  Of course, there can be many reasons for this.  Maybe you haven't set out to be alone; maybe that's just how your life has unfolded so far, and it can change soon. 

But maybe your alone-ness (is that a word???) is something you have sought for yourself.  Maybe having Moebius, having physical differences from others and perhaps speech differences, has made you shy.  Maybe you get sick of the staring, the at-times uncomfortable relationships we have with others we don't know.  Maybe you get tired of the fact people aren't used to your speech, and don't understand you (at first).  Maybe all these things, and other factors, make you sick of people.  I understand (I at times get sick of people too!)  And sometimes being alone is just fine.  I think many people NEED some alone time, some time to wind down and de-compress. 

But still--and this is the reason I present the below article--there are some things to beware of, some things that perhaps are not so good, about being alone too much.  For instance--it might not always be good for your health.  Read on:

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Do you like being alone? New research from Brigham Young University shows just how bad loneliness and social isolation, even for people who prefer their own company, can be for health.
The researchers analyzed data collected from 70 studies and more than 3.4 million people from 1980 to 2014. The studies, which followed people for about seven years on average, showed that people who were socially isolated, lonely or living alone had about a 30 percent higher chance of dying during a given study period than those who had regular social contact. Notably, the effect was greater for younger people than for those over 65, according to the report in Perspectives on Psychological Science.
Julianne Holt-Lunstad, the lead author, said the effect of loneliness and social isolation was as great a risk factor as obesity and should be taken seriously as a threat to public health.
“The key point that I hope others will get from this is the recognition that this is an important public health issue,” said Dr. Holt-Lunstad. “Social isolation significantly predicts risk for premature mortality comparable to other well established risk factors. Thus, we need to take our social relationships as seriously for our health as we do these other factors.”
The researchers noted that loneliness could take various forms. Some people with strong social networks may still feel lonely, even when surrounded by loved ones. Others choose social isolation and even prefer it.
Loneliness or living alone seemed to be particularly bad for middle-aged adults, compared with older people in the same situation. It may be that solitary middle-aged adults are more likely to engage in risky behaviors and less likely to seek medical treatment, whereas older people may pay more attention to their health. Or it may be that older adults are alone as a result of the death of a spouse, and have not necessarily experienced years of social isolation.
The study authors noted that affluent nations had the highest rates of individuals living alone, and that social isolation would reach epidemic proportions in the next two decades. “Although living alone can offer conveniences and advantages for an individual,” the authors wrote, “physical health is not among them.”

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Monday, March 16, 2015

AWARENESS WATCH

Wow, it's been a while since my last post.  Well, bad weather and then spring break can do that...
But meanwhile, here's a couple of positive developments recently when it comes to treating people, and considering people, with physical differences in a better light.  First, a trip to the zoo proves to be transformative:

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CHICAGO — In her 18 years, Zinyra Ross has lived two distinct lives.

In one, she was isolated by severe cognitive disabilities, stigmatized by teachers as stubborn and uncooperative, and bullied and beaten by classmates. In the other, more recent life, she’s a public speaking ambassador, outstanding student, role model and mentor.

A determined single mom and a suburban school with strong special education resources helped shepherd her from one life to the other.

But the transformation of Zinyra mostly occurred in a somewhat mysterious way: She volunteered at a zoo.

“It just brings tears of joy to my eyes,” said Danielle Reed, her former preschool teacher. “It’s amazing.”

Zinyra’s metamorphosis personifies a hotly debated, growing body of research into whether human-animal interaction can be used to treat an array of disorders, from autism and post-traumatic stress to insomnia and cardiovascular disease. But scientific links are inconclusive.

Still, for those who know Zinyra, the zoo’s impact was clear.

“Her life changed that day,” her mother, Myra Ross, recalled of the morning her daughter entered Brookfield Zoo, in the town outside Chicago. “Everything changed about her. The independence, the confidence, her social skills. She was the kid who was teased because of the way she talked — or because she couldn’t talk. This is a kid who walked with her head down all the time.”

After accumulating hundreds of hours as an exemplary Brookfield Zoo volunteer over four years, Zinyra was hired part time last summer as a greeter, guide and teacher at the institution’s popular Hamill Family Play Zoo. Last spring she received a standing ovation after speaking to more than 600 people at the Chicago Zoological Society’s black-tie fundraiser on the zoo grounds.

In May, the special education department at Waubonsie Valley High School in Aurora, Ill., chose her as its Outstanding Senior. In September she opened a news conference for then-Gov. Pat Quinn, who wrote this to the girl whom many know as Z:

“Zinyra — You are my hero! I love you!”

Early challenges

The disabilities in Z’s life are broad, overlapping and a little unclear. A Pediatric Developmental Center evaluation when she was 11 noted “mild retardation, sensory regulatory disorder and repetitive behaviors.” That same year, an evaluation at the Rehabilitation Institute of Chicago placed her IQ at 60 and noted that her mother reported that Z burned herself with boiling water and stuck herself with sharp objects.

Over the years, psychologists, teachers and occupational therapists have told Myra Ross that her daughter exhibits “autistic tendencies,” including spinning, flapping her hands and never making eye contact. Today her official list of challenges includes significant impairments in reading, writing and math, and apraxia of speech, a disruption of messages from the brain to the mouth.

On the carpet in her bedroom is a worn spot where she still spins to relax.

“This is just a mystery,” Ross said of her daughter’s challenges. “It’s a little bit of everything.”

Born in April 1996 in Chicago and raised on the South Side, Z began displaying disabilities — particularly an inability to speak — early. Ross, a single first-time mother, was unsure what she was seeing.

One clear trait was Z’s near-obsession with nature and animals. Her favorite TV networks were Animal Planet and Discovery. Although she couldn’t read, Z loved to look at animal pictures in books.

“We would be in Englewood,” Ross said. “A bunch of sidewalks, a lot of glass, a lot of rocks. Z would go to a park, in the dirt and she would dig it up until she would find worms or these little weird bugs and she would, like, take care of them.”

At 2 years old, Z enrolled in Taylor Day School in Chicago’s Auburn Gresham neighborhood. Evaluations from her early years make repeated references to Zinyra having a behavioral problem.

Teachers reported that she didn’t socialize well with other children, would flap her hands frequently and would rarely sit still. Z was unable to make eye contact and would cry for long periods, teachers said. Preschool teacher Reed said she “absolutely” thought Z was on the autism spectrum.

In an effort to find a suitable school environment for Zinyra after preschool, Ross over the next decade placed her in three city public schools and tried home schooling. She met regularly with school officials to create an individualized education plan and found additional reading, academic and therapy programs for the girl.

Yet Zinyra’s developmental issues persisted.

Her speech was gibberish that teachers were unable to understand. Letitia Douglas, Z’s second-, third- and fourth-grade teacher at Morgan Elementary School in Gresham, recalls that her special education classroom was a haven for Zinyra. But the girl experienced teasing and bullying in the lunchroom and gym class, Douglas said.

She calls the change in Zinyra “awesome. I’m telling you, Every time I look at her now, I cry.”

But in elementary school, Douglas said, Z would sob “and get hysterical” while being teased. “Then they would call down to me to come and get her.”

The teasing took such a toll that Z regularly would come home in tears, picking at her skin, Ross recalled. In fifth grade, a classmate at Z’s third school, Carter Elementary in Washington Park, beat her so severely that police were called and filed a charge of simple battery.

Throughout the abuse, Z never retaliated, teachers and her mother said. But the girl was “terrified” to go to school, Ross said.

Hope and inspiration

In seventh grade, a spark of hope appeared.

Myra Ross heard about Brookfield Zoo’s Youth Volunteer Corps and called supervisor Debra Kutska, who welcomed Z. She turned 13, the minimum age for volunteers in the program, and mother and daughter drove 45 minutes to the zoo from their South Side home.

When Z finished that afternoon, she was thrilled, Ross recalled. Her daughter said everyone was nice and she’d made a friend, something Z had done only once before in her life, in sixth grade.

Although she was shy her first few months at the zoo, Z connected with other kids in unassuming ways, Kutska said. Zinyra knew a great deal about animals and was hungry to learn more. Her confidence, social skills and elocution improved. Always cheerful, she volunteered for additional days, Kutska said.

As the months passed, Zinyra became a mentor to other kids, Kutska recalled, partly because she so openly shared her challenges. When other kids without disabilities saw how far Z had come, she became an inspiration to them, Kutska said.

“I doubt she ever knew that,” she added.

That experience seemed to dovetail into her high school journey.

After deciding against the city’s public school system for her daughter’s high school education, Ross researched high schools with strong special education programs, settling on Waubonsie Valley High School in Aurora. She and Z moved to an apartment there a few weeks before the 2010 school year.

She was drawn out by a supportive staff and the school’s array of programs for students with special needs.

“Zinyra grew more comfortable with who she was as an athlete and gained confidence in all that she was able to do,” Waubonsie Special Olympics coach Sarah Kemerly said in an email. After excelling on the school’s Special Olympics basketball, bowling and track teams, Z now competes in those sports with the school district’s Special Olympics program for alumni.

Social worker Gina Bogin, who managed stage productions for students with special needs, said Z at first was afraid to go onstage. In a few months, she played the Wicked Witch in “Wizard of Oz,” then Alice in “Alice in Wonderland” and the wicked mother in “Rapunzel,” Bogin said.

She became a public speaking ambassador for Special Olympics and Best Buddies, a nonprofit that promotes friendships, jobs and leadership training for people with intellectual and developmental disabilities.

In spring, Z completed four years at Waubonsie and is now enrolled in the school district’s post-high school transitional program that teaches life skills to special education students.

“I believe all of them helped her develop into the person she is today,” Kemerly said of Waubonsie’s programs. She called the zoo program “vital.”

Studying human-animal connection

How and whether animals helped unlock Z’s potential is a small part of a lively scientific debate that explores the broader topic of animals’ potential to help the human condition.

Celebrated author, speaker and animal behaviorist Temple Grandin is a central figure. She maintains that her autism helps her think like animals and that animals are a safe way for people with autism to interact socially.

Kutska, who spent nearly eight years working with the teen volunteer program before leaving Brookfield Zoo last summer, said she has witnessed the power of the human-animal connection many times.

“The ability to come in here and spend the day learning and talking about animals does allow for a lot of transformation and growth for those students,” she said. “I see it in most of the kids who came through, no matter what their ability is.”

Marguerite O’Haire, assistant professor at Purdue University’s Human-Animal Interaction Research group, has been studying the subject for about a decade. In a study she published in 2013, O’Haire concluded that children with autism spectrum disorder were more social in the presence of guinea pigs than in the presence of toys.

The study “demonstrates that the presence of an animal alone … can increase social interaction,” she wrote.

A 2010 study she noted suggested that children with autism experienced decreased stress when interacting with service dogs. O’Haire also pointed to a study in 2003 that indicated human interaction with animals releases oxytocin, known as “the love hormone,” in children without autism.

Scott Lilienfeld, a psychology professor at Emory University, has reviewed dolphin- and equine-assisted therapies and found the evidence “equivocal” on whether they yield long-term improvement in psychological conditions.

Studies suggesting an enduring improvement are “not too rigorous,” particularly in understanding control groups, Lilienfeld said.

An effective therapist can use a topic a patient is passionate about to spark favorable change, Lilienfeld said, and he suggested that Z’s work around animals may have “started her on a cascade” of other, favorable developments.

“We probably could never know what actually happened,” Lilienfeld said, “but I’m not opposed to thinking that (her involvement at the zoo) could have unlocked some things.”

A ‘miracle’ in action

Zinyra starts her shift as a play program assistant shortly before 9 a.m. Mondays and Tuesdays and works until 5 p.m.

At her post in the play zoo one snowy Monday morning last month, Zinyra played with a little girl near the kookaburra cage, then stepped over to the lemur exhibit and ushered two children close to the glass.

Z’s speech can be muffled and she sometimes struggles to form words, but that morning, children and adult guests easily engaged with her.

Zinyra said the zoo “is like a little comfortable cover for me where nobody judges you.” Her favorite part of the job is meeting people from all over the world, she said. Her dream is to become a veterinarian.

The experience has helped her talk to more people, Z said, “and sometimes I get to help them out too.”

That morning she was the picture of poise, something that so many who knew her years ago find astonishing. Even Kutska, who saw it unfold, said she still gets choked up when remembering Z receiving a standing ovation after speaking to commissioners of the Cook County Forest Preserve District about three years ago.

“She doesn’t realize,” Kutska said, “the miracle that she is.”

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Meanwhile; elsewhere, when a team cheerleader with Down's Syndrome was being heckled by some in the crowd, the basketball team for which she cheered decided to do something about it:

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When some in the crowd began taunting a cheerleader with special needs during a school basketball game, a group of players decided to put a stop to it.

Three players for the Lincoln Middle School team in Kenosha, Wis. walked off the court in the middle of their game to defend cheerleader Desiree Andrews, who has Down syndrome.

“The kids in the audience were picking on D, so we all stepped forward,” one of the players, Chase Vazquez, told WTMJ-TV in Milwaukee.

Since that game, the players and other students at the school have affectionately taken Andrews under their wing.

Moreover, the gymnasium where the incident went down is now known as “D’s House.”

Andrews, who will head to high school next year, called the name “sweet, kind, awesome, amazing.”

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There's a also a video at the link above; check it out.  And good for those players!

Tuesday, March 3, 2015

BULLYING AWARENESS: CYBERBULLYING, COLLEGE LIFE, AND A NEW STUDY

You should of course read the story below for yourself; it is both sad and fascinating.  What I take away from it is:  bullying isn't something that merely happens in middle school or high school; it extends into the college years.  It affects many college-aged women (perhaps as many as 25% of them).  Obviously it can cause the high-profile suicides that we have all heard of; and those are horrible.  But don't forget also that, more often, even if it doesn't lead to death, it still can lead to depression, both among those being bullied and those doing the bullying.  It is a serious problem and, clearly, it is not going away.  Read more below and at the link:

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"I hope she sees this and kills herself." - message to Amanda Todd
"The world would be a better place without you." - message to Megan Meier
Infamous quotes from famous cases of teenage cyberbullying, each ending tragically with the victim taking her life. Heartbreaking cases like these galvanized research and today much more is known about the damaging effects of cyberbullying among middle and high school students -- including an increased risk for depression, substance abuse, suicidal thoughts, hostility and delinquency.
What about college students? After all, they're the most frequent users of digital technology and social media sites. Will their increased maturity and experience keep them safe?
Not so much, according to a new study from the University of Wisconsin. Questioning 265 girls enrolled in four colleges, researchers found college-age females just as likely to suffer the negative effects of cyberbullying as younger adolescents.
"That's a jump off the page," said study co-author Dr. Megan Moreno. "This is the type of bullying that is going beyond those childhood and adolescent years and into young adulthood."
The study found college girls who reported being cyberbullied were three times more likely to meet clinical criteria for depression. And if the cyberbullying was connected to unwanted sexual advances, the odds of depression doubled.
"A six-fold increase in the odds for depression when there was fallout from unwanted sexual advances or fallout from a romantic relationship was very striking," said Moreno. "These are not innocuous actions. These are actions that really can trigger depression and really can lead to damage to the people who are involved. "
A 2014 survey about online harassment by the Pew Research Center found 26% of 18-24 year-old-women say they've been stalked online, while 25% say they were the target of online sexual harassment.
"Some people have hypothesized that cyberbullying in that context -- unwanted sexual advances — really starts to look like it should be on the spectrum of sexual violence rather than bullying," said Moreno.
Cyberbullies suffer too. Girls who bully have a four times higher risk for depression than those who don't. The study also found they're also more likely to have a drinking problem.
"For problem alcohol abuse, it was really the bullies that struggled, and not the victims," said Moreno.
The study didn't take a look at other mental health impacts, such as suicidal thoughts. Moreno says that was deliberate.
"Those cases are so extreme — and they are so horrible — but at the same time what we were hearing [from girls] in our studies is this is something that is happening all the time to a lot of us and we want to know what else can happen," said Moreno.
Mom's emotional advice on cyberbullying
"If we don't kill ourselves are we at risk for something else?" is a frequent question Moreno hears. "Is there something else bad that happens to me as a victim, or does something bad happen to that bully that's been picking on me?"
Girls who experience cyberbullying are encouraged to get help by visiting their college clinic to talk about their experience, their growing feelings of depression or their substance abuse.
"There are potential health impacts," says Moreno. "This should be in the public health arena. Girls should not feel like they can't go to clinic and talk about their feelings."
Atlanta advocate Helen Ho agrees. She's the founding director of Asian Americans Advancing Justice and spends a good deal of her time on cyberbullying issues. Research shows Asian Americans are digitally bullied at least four times as often as other ethnicities.
One of the frustrating things about being an advocate against cyberbullying," says Ho, "is that a lot of people don't realize how intense cyberbullying can be in this kind of high-technology age and the physical as well as mental impact it can have."
"For many of us who are adults and didn't grow up with online access, we can see that distinction between online and offline very clearly," adds Moreno. "But for youth, there isn't a distinction. We used to say either online or real world, and youth say 'No, no, you don't get it, online IS my real world'."

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Monday, March 2, 2015

FOR MOMS AND DADS, MOEBIUS AND OTHERWISE: CONTROVERSIAL COLUMN OF THE DAY

I think all moms and dads will find this column interesting; and certainly Moebius parents will too.  But you might also find that it inspires controversy.  Apparently a mom wrote a column last week in the Washington Post asking why dads don't seem to complain as much about parenting and its issues.  So today a dad wrote back; and argued that, yes, dads have the same struggles when it comes to parenting as do moms.  But he suggests that dads don't want to dwell on the complaints as much as some moms do (and of course hints that some moms maybe dwell too much on the negative).  True?  False?  What do you think?  Read it and see--it will definitely make you think:

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Last week, fellow On Parenting contributor Samantha Rodman wrote a piece entitled “Why don’t dads complain about parenthood like moms do?”As a hard working, always-striving-to-be-better proud poppa of a 2-year-old, these are fighting words.
Rodman begins by claiming, “I have yet to hear a dad complain this openly and honestly about his kids” and later says “If asked to commiserate about parenting…the average dad looks around like he’s on Candid Camera and gives a vague answer…”
Really? You’ve never heard a father say he’s had a tough morning with his kid, who wouldn’t stop throwing breakfast all over the dining room? Or that the little one kept him up all night and now he feels like he got run over by a truck? Or that he had to miss an important meeting to pick up his son at daycare because of a temperature? Or that he could use three fingers of scotch neat because he was worn down to a nub?
Perhaps dads don’t talk in the same way many mothers do, but we do talk about the problems we encounter as parents all the time. We talk to our partners, parents, friends and, yes, even our therapists. However, what we tend not to do is generally dwell on our problems, unless we’re looking to resolve an outstanding issue.
Here’s a recent example. I was talking to another dad, who mentioned it took forever to brush his child’s teeth because the kid wouldn’t sit still. We didn’t stand around working ourselves up into a lather. What’s the point? It solves nothing and I don’t think it makes anyone feel better either. Instead, we discussed potential new tactics for the father to try. And then we made plans to go out and get drinks.
Apparently, prolonged, multi-platform complaining about an issue without having any real desire to fix the problem is something to be encouraged and celebrated. Just read many of the blogs Rodman’s piece mentions, such asPeople I Want to Punch in the Throat and The Honest Toddler. Or even her own post, I’m Just Not That Into Toddlers, Including My Own. Why any parent would want to spend what little precious time they do have reading endless complaints from other parents is beyond me.
Rodman writes, “There needs to be a concurrent societal shift where men are encouraged not only to take on equal parenting responsibilities, but also to be able to openly discuss their flaws and weaknesses, their boredom, fatigue, and other complaints, without fearing castigation and categorical dismissal as bad, bumbling, or uninvolved dads.”
When I have the time to sit down with a fellow parent and catch up, I’d rather dwell on more uplifting topics. Parenting takes a lot of work, some of it admittedly tedious, so I’m looking for some escapism. Tell me about the great movie or engrossing novel I should be reading after my son goes to bed. Share a funny story about that weird guy at work who smells like liverwurst and has an action figure collection in his cubicle. Give me some ideas about where the family and I should go on our next vacation. Hell, let’s talk politics. Whatever we talk about, let’s not wallow in negativity.
One of the first things I learned about parenting is that both the people who love you the most and those who have never met you will judge you constantly. Being a mother or a father requires thick skin. If I took offense every time one of my parenting choices was questioned or criticized, I would probably be huddled in a corner sobbing. You can’t let those barbs destroy you or define you. Likewise, you can’t allow yourself to feel that being honest about the trials and tribulations of parenthood will make you look like a failure of a father. It will simply make you look human – and there’s nothing wrong with that.
Rodman ends her piece by writing, “If Daddy is going to be an equal parent, then Scary Daddy needs to be recognized and supported too.”
I don’t want to be Scary Daddy. That’s not the person who I want to be for my son or wife. I want to be Making It Work Daddy, Daddy Who Has His Stuff Together and Upbeat Through Good Times And Bad Daddy. I won’t succeed all the time – and sometimes I will fail spectacularly – but it sure beats complaining.
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