MOEBIUS SYNDROME IN THE NEWS
Read about little Cody, from the UK, and what his parents and others are trying to do for him--and others:
"CODY JAMES is clearly a happy little chap – but a rare condition means he will never smile or cry.
Nor will the 13-month-old frown or show any facial expression and he has to roll his eyes to keep them moist because he cannot blink.
Cody was born with Moebius syndrome, a rare condition that affects two in every million children.
His parents, Kim Eastwell and Talan James, of Helston, believed there were only 124 children with the condition in Britain.
It is present at birth affecting some cranial nerves, leaving sufferers unable to move their faces.
The left-hand side of Cody's body is also affected.
Clever
"He is so clever, and he is gorgeous," said Kim.
"My heart breaks that I will never see my son smile at me."
Now with the help of family and friends, the couple are embarking on a drive to help fund research into the condition.
Kim said: "The day we found out we were expecting a baby was the happiest day of our lives."
When Cody was born he did not scream or cry and, said Kim, she and Talan panicked.
Later he was placed in the neonatal unit. "All I could hear was the other babies crying, I cried myself to sleep that night," she added.
After a while Kim noticed his facial palsy was not improving, he was not supporting himself, or smiling.
It was not until the couple later saw an eye specialist – and after being told the problem was nerve damage which would repair itself – that Cody was diagnosed with the incurable syndrome.
"Cody doesn't sit up or crawl but he does roll and has one cheeky personality," said Kim.
Cheeky
"Even though he doesn't smile we all know he's happy with his dirty, cheeky little laugh. He's making so much progress, everything Cody does he has to work ten times harder for.
"At the end of the day you don't give up on your baby."
Now she and Talan are determined to help others by raising money for research.
Talan's employers, one2eleven at Flambards, and manager Kath Curnow have already raised money for Cody "and have done him proud". Other local businesses and individuals have also been helping.
On Saturday the Lizard Fundraising Fair near Kynance and signposted on the Helston to Lizard road, will be raising money for the Moebius Syndrome Foundation as well as Cornwall Air Ambulance Trust.
It runs from noon to 7pm and features music, a bar with real ales, felt-making and clay modelling workshops, and a mini-Lizard Olympics for children and adults."
But let me add this--yes, it is heartbreaking that Moebius Syndrome is incurable, and that Cody and others like him will never be able to smile. But remember--Cody has a bright future ahead of him, and he can have a great life and accomplish a lot.
How do one know this? All we have to do is to look at the community of persons all around the world with Moebius, who are now able to easily link up via social media and share their experiences. And look at all they have accomplished. Cody can do it, too.
“Let yourself be silently drawn by the strange pull of what you really love. It will not lead you astray."--Jalal ad-Din Rumi (1207-1273)
Thursday, May 31, 2012
Wednesday, May 30, 2012
BRAIN TALK DEPT
Did you know music can change your brain--and help it, for the good? Read on--parents of children with Moebius, you might be especially interested in this:
"Michael Jackson was on to something when he sang that "A-B-C" is "simple as 'Do Re Mi.'" Music helps kids remember basic facts such as the order of letters in the alphabet, partly because songs tap into fundamental systems in our brains that are sensitive to melody and beat.
Making music sound 'better'
“How people treat you is their karma; how you react is yours.”--Dr. Wayne Dyer
Did you know music can change your brain--and help it, for the good? Read on--parents of children with Moebius, you might be especially interested in this:
"Michael Jackson was on to something when he sang that "A-B-C" is "simple as 'Do Re Mi.'" Music helps kids remember basic facts such as the order of letters in the alphabet, partly because songs tap into fundamental systems in our brains that are sensitive to melody and beat.
That's not all: when you play music, you are exercising your brain in a unique way.
"I think there's enough evidence to say that musical experience, musical exposure, musical training, all of those things change your brain," says Dr. Charles Limb, associate professor of otolaryngology and head and neck surgery at Johns Hopkins University. "It allows you to think in a way that you used to not think, and it also trains a lot of other cognitive facilities that have nothing to do with music."
The connection between music and the brain is the subject of a symposium at the Association for Psychological Science conference in Chicago this weekend, featuring prominent scientists and Grammy-winning bassist Victor Wooten. They will discuss the remarkable ways our brains enable us to appreciate, remember and play music, and how we can harness those abilities in new ways.
There are more facets to the mind-music connection than there are notes in a major scale, but it's fascinating to zoom in on a few to see the extraordinary affects music can have on your brain.
Ear worms
Whether it's "Somewhere Over the Rainbow" or "Somebody That I Used to Know," or even "Bad Romance" or "Bohemian Rhapsody," it's easy to get part of a song stuck in your head, perhaps even a part that you don't particularly like. It plays over and over on repeat, as if the "loop" button got stuck on your music player.
Scientists think of these annoying sound segments as "ear worms." They don't yet know much about why they happen, but research is making headway on what's going on.
The songs that get stuck in people's heads tend to be melodically and rhythmically simple, says Daniel Levitin, a psychologist who studies the neuroscience of music at McGill University in Montreal, Quebec. It's usually just a segment of the song, not the entire thing from beginning to end. A common method of getting rid of an ear worm is to listen to a different song -- except, of course, that song might plant itself in your thoughts for awhile.
"What we think is going on is that the neural circuits get stuck in a repeating loop and they play this thing over and over again," Levitin said.
In rare cases, ear worms can actually be detrimental to people's everyday functioning, Levitin said. There are people who can't work, sleep or concentrate because of songs that won't leave their heads. They may even need to take the same anti-anxiety medications given to people with obsessive-compulsive disorder, drugs that relax the neural circuits that are stuck in an infinite loop.
How we evolved to remember music
Given how easily song snippets get stuck in our heads, music must be linked to some sort of evolutionary adaptation that helped our ancestors.
Bone flutes have been dated to about 40,000 to 80,000 years ago, so people were at least playing music. Experts assume that people were probably singing before they went to the trouble of fashioning this instrument, Levitin said. In Judaism, the Torah was set to music as a way to remember it before it was written down.
"The structures that respond to music in the brain evolved earlier than the structures that respond to language," Levitin said.
Levitin points out that many of our ancestors, before there was writing, used music to help them remember things, such as how to prepare foods or the way to get to a water source. These procedural tasks would have been easier to remember as songs. Today, we still use songs to teach children things in school, like the 50 states.
What about remembering how to play music?
When you sit down at the piano and learn how to play a song, your brain has to execute what's known as a "motor-action plan." It means that a sequence of events must unfold in a particular order, your fingers must hit a precise pattern of notes in order. And you rehearse those motor movements over and over, strengthening the neural circuits the more you practice.
But musicians who memorize how to play music often find they can't just begin a remembered piece at any point in the song. The brain has a certain number of entry nodes in the motor-action plan, so you can only access the information from particular points in the song.
"Even though it feels like it's in your fingers, it's not," Levitin said. "It's in the finger representation in your head."
Music and pleasure
Music is strongly associated with the brain's reward system. It's the part of the brain that tells us if things are valuable, or important or relevant to survival, said Robert Zatorre, professor of neurology and neurosurgery at Montreal Neurological Institute.
One brain structure in particular, called the striatum, releases a chemical called dopamine in response to pleasure-related stimuli. Imaging of the brain can reveal this process is similar to what happens in your brain in response to food or sex.
But unlike those activities, music doesn't have a direct biological survival value. "It's not obvious that it should engage that same system," Zatorre said.
Musicians can't see inside their own brains, but they're aware of moments of tension and release in pieces, and that's what arrangers of music do.
Zatorre and colleagues did an experiment where they used whatever music participants said gave them pleasure to examine this dopamine release. They excluded music with words in order to focus on the music itself rather than lyrics -- the melodic structure, for example.
At the point in a piece of music when people experience peak pleasure, part of the brain called the ventral striatum releases dopamine. But here's something even more interesting: Dopamine is released from a different brain area (the dorsal striatum) about 10 to 15 seconds before the moment of peak pleasure.
Why would we have this reaction before the most pleasurable part of the piece of music? The brain likes to investigate its environment and figure out what's coming next, Zatorre explains.
"As you're anticipating a moment of pleasure, you're making predictions about what you're hearing and what you're about to hear," he said. "Part of the pleasure we derive from it is being able to make predictions."
So if you're getting such a strong dopamine rush from music -- it could even be comparable to methamphetamines, Zatorre said -- why not make drug addicts listen to music? It's not quite that simple.
Neuroscientists believe there's basically one pleasure mechanism, and music is one route into it. Drugs are another. But different stimuli have different properties. And it's no easier to tell someone to replace drugs with music than to suggest eating instead of having sex -- these are all pleasurable activities with important differences.
Rocking to the beat
Did you know that monkeys can't tap their feet to songs, or recognize beats?
It appears that humans are the only primates who move to the beat of music. Aniruddh Patel at the Neurosciences Institute in San Diego, California, speculates that this is because our brains are organized in a different way than our close species relatives. Grooving to a beat may be related to the fact that no other primates can mimic complex sounds.
Snowball the cockatoo can dance to song beats, whereas monkeys cannot, says Aniruddh Patel.
Curiously, some birds can mimic what they hear and move to beats. Patel's research with a cockatoo suggests the beat responses may have originated as a byproduct of vocal mimicry, but also play a role in social bonding, Patel said. Armies train by marching to a beat, for instance. Group dancing is a social activity. There also are studies showing that when people move together to a beat, they're more likely to cooperate with each other in nonmusical tasks than if they're not in synch.
"Some people have theorized that that was the original function of this behavior in evolution: It was a way of bonding people emotionally together in groups, through shared movement and shared experience," Patel said.
Another exciting arena of research: Music with a beat seems to help people with motor disorders such as Parkinson's disease walk better than in the absence of music -- patients actually synchronize their movements to a beat, Patel said.
"That's a very powerful circuit in the brain," he said. "It can actually help people that have these serious neurological diseases."
There's also some evidence to suggest that music can help Alzheimer's patients remember things better, and that learning new skills such as musical instruments might even stave off dementia.
There still needs to be more research in these areas to confirm, but Limb is hopeful about the prospect of musical engagement as a way to prevent, or at least delay, dementia.
"That's a pretty amazing thing that, from sound, you can stimulate the entire brain," Limb said. "If you think about dementia as the opposite trend, of the brain atrophying, I think there's a lot of basis to it."
Music and emotions
You may associate particular songs with events in your life -- Green Day's "Good Riddance (Time of Your Life)" might remind you of your graduation day, if you had a graduation in the 1990s or 2000s, for example.
Despite variation in any given person's life experience, studies have shown that music listeners largely agree with one another when it comes to the emotions presented in a song. This may be independent of lyrics; musical sounds themselves may carry emotional meaning, writes Cornell University psychologist Carol Krumhansl in Current Directions in Psychological Science.
Educational shows such as "Sesame Street" have been tapping into the power of music to help youngsters remember things for decades. Even babies have been shown to be sensitive to beats and can recognize a piece of music that they've already heard.
Advertisers exploit music in many commercials to make you excited about products. As a result, you may associate songs with particular cars, for instance.
Here's one way you might not already be using music: Making a deliberate effort to use music to alter mood. Listen to something that makes you energetic at the beginning of the day, and listen to a soothing song after an argument, Levitin says.
Music as a language
Victor Wooten of Béla Fleck and the Flecktones isn't a scientist, but he has thought a lot about the process of learning to play music. For him, introducing a child to music shouldn't be different from the way a child begins speaking.
"I just approach music as a language, because it is," Wooten said. "It serves the same purpose. It's a form of expression. A way for me to express myself, convey feelings, and sometimes it actually works better than a written or verbal language."
Traditionally, a child learns to play music by being taught how an instrument works, and learning to play easy pieces that they practice over and over. They might also play music with other beginners. All the rules come first -- notes, chords, notation -- before they play.
But with language, young children never know that they're beginners, Wooten said. No one makes them feel bad when they say a word incorrectly, and they're not told to practice that word dozens of times. Why should it be different with music?
"If you think about trying to teach a toddler how to read, and the alphabet, and all that stuff, before they can speak, we'd realize how silly that really is," Wooten said. "Kids most of the time quit, because they didn't come there to learn that. They came to learn to play."
He remembers learning to play music in an immersive way, rather than in a formulaic sequence of lessons. When he was born, his four older brothers were already playing music and knew they needed a bass player to complete the band. "My brothers never said, 'This is what you're going to do,'" he said.
Wooten took this philosophy and created summer camps to get kids excited about music in a more natural way.
"It's rare that I ever meet a musician who doesn't agree that music is a language. But it's very rare to meet a musician that really treats it like one."
There you have it: Music that gets stuck in your head can be annoying, but it also serves a multitude of other purposes that benefit you. If you treat it like a language, as Wooten suggests, you might learn new skills and reap some of the brain health benefits that neurologists are exploring.
It's more complicated than "A, B, C," but that's how amazing the mind can be."
AND...TRY, TRY, TRY TO BE OUTGOING
"The more outgoing and optimistic you are, the longer you may live, a new study suggests. Researchers have found that personality traits like being outgoing, optimistic, easygoing, and enjoying laughter as well as staying engaged in activities may be an important part of the longevity genes mix.
"When I started working with centenarians, I thought we'd find that they survived so long in part because they were mean and ornery," study researcher Nir Barzilai, of the Albert Einstein College of Medicine, said in a statement. "But when we assessed the personalities of these 243 centenarians, we found qualities that clearly reflect a positive attitude towards life."“How people treat you is their karma; how you react is yours.”--Dr. Wayne Dyer
Friday, May 25, 2012
WHAT MEMORIAL DAY MEANS
With the Memorial Day weekend coming up, I thought today I'd share this essay, written last year, about the significance of the holiday. And get this--the below was written by an 11 year old girl. But she gets at the importance of things pretty well, doesn't she? Read on:
"When I think of Memorial Day, I think of laughter and parties, but also of those who risked their lives for our freedom. Memorial Day isn't just for fun and games, but to honor those brave veterans who gave up their lives for their country. Many people go to parades for food and a good time, but the real reason is to remember those who protected us.
To me, after a war is like having a broken wheel. It is broken because parts of the wheel have come off and gotten rusty. Though on Memorial Day, you don't think of the broken wheel, but you think of it and remember it when it was new and shiny. Before a war, the wheel is complete. During the war, we fight, and lose some parts of our wheel. After the war, our wheel is broken and dirty. On Memorial Day, I always think of the wheel when it was not broken. The parts that have been broken are all those brave soldiers who gave up their lives in various wars. The rusty parts are those who have fought in the war and survived. When we honor all these parts of the wheel, we remember what they did for us and that is what Memorial Day is to me.
All the parts of the wheel make a big difference. The spokes of the wheel are us. The outer part is the people keeping us safe from harm. We are also an important part of the wheel. Ester DeBert Reed collected money for soldiers. Mary Ludwig Hays, also known as Molly Pitcher, was a young woman during the Revolutionary War. She brought soldiers water at the Battle of Monmouth, and manned her husband's cannon when he was shot. We can also make a difference, as the spokes of the wheel. During many wars, various spokes are taken out. On Memorial Day, we also honor the spokes of the wheel, for they are as important as the outer rim.
During Memorial Day, we eat lots of food and hold parties to celebrate the lives of those who have fallen in battle. Most of them lost their lives trying to protect us. It shows how much they cared about their country, and that is why they thought it was worth dying for their country. It isn't an easy choice to make, considering all of the things that can happen to you. We are so lucky, to have soldiers that protect us from all the horrid things that can happen. That is why I always respect them, because if they didn't fight, I might not be here.
To me, Memorial Day is when we still have a broken, tattered wheel, but we are proud of it. We remember those who died, and honor them. That is what Memorial Day really means to me."
“It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure. ”--Joseph Campbell (1904-1987)
With the Memorial Day weekend coming up, I thought today I'd share this essay, written last year, about the significance of the holiday. And get this--the below was written by an 11 year old girl. But she gets at the importance of things pretty well, doesn't she? Read on:
"When I think of Memorial Day, I think of laughter and parties, but also of those who risked their lives for our freedom. Memorial Day isn't just for fun and games, but to honor those brave veterans who gave up their lives for their country. Many people go to parades for food and a good time, but the real reason is to remember those who protected us.
To me, after a war is like having a broken wheel. It is broken because parts of the wheel have come off and gotten rusty. Though on Memorial Day, you don't think of the broken wheel, but you think of it and remember it when it was new and shiny. Before a war, the wheel is complete. During the war, we fight, and lose some parts of our wheel. After the war, our wheel is broken and dirty. On Memorial Day, I always think of the wheel when it was not broken. The parts that have been broken are all those brave soldiers who gave up their lives in various wars. The rusty parts are those who have fought in the war and survived. When we honor all these parts of the wheel, we remember what they did for us and that is what Memorial Day is to me.
All the parts of the wheel make a big difference. The spokes of the wheel are us. The outer part is the people keeping us safe from harm. We are also an important part of the wheel. Ester DeBert Reed collected money for soldiers. Mary Ludwig Hays, also known as Molly Pitcher, was a young woman during the Revolutionary War. She brought soldiers water at the Battle of Monmouth, and manned her husband's cannon when he was shot. We can also make a difference, as the spokes of the wheel. During many wars, various spokes are taken out. On Memorial Day, we also honor the spokes of the wheel, for they are as important as the outer rim.
During Memorial Day, we eat lots of food and hold parties to celebrate the lives of those who have fallen in battle. Most of them lost their lives trying to protect us. It shows how much they cared about their country, and that is why they thought it was worth dying for their country. It isn't an easy choice to make, considering all of the things that can happen to you. We are so lucky, to have soldiers that protect us from all the horrid things that can happen. That is why I always respect them, because if they didn't fight, I might not be here.
To me, Memorial Day is when we still have a broken, tattered wheel, but we are proud of it. We remember those who died, and honor them. That is what Memorial Day really means to me."
“It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure. ”--Joseph Campbell (1904-1987)
Thursday, May 24, 2012
GIRL, SUSPENDED FOR MAKING AN ANTI-BULLYING VIDEO, IS REINSTATED
I'm really glad to see this--here was a young lady trying to raise awareness about the dangers of bullying, and she gets suspended because school administrators totally misinterpreted what she was doing. Ugh--but at least the wrong has been righted:
"Jessica Barba, the New York teen suspended from school for making a controversial anti-bullying video, is returning to school Thursday, NBC News reports.
A morning meeting with the Middle Island, N.Y. school district ended with the high school freshman's suspension removed from the record.
Jessica's father Michael Barba told NBC News that all went well. "I am the proudest father in the world."
Jessica made the six-minute video for a class at Longwood High School in Middle Island, N.Y. The assignment was to create a project about an important issue.
The video, posted on YouTube, tells the story of the fictional 12-year-old Hailey Bennett (played by Jessica), who lost her mother at age 3, is abused by her dad and is all alone after her only friend moves away. Hailey gets bullied at school daily, is mocked on her fake Facebook page, and ultimately, ends her life. The video and the Facebook page had disclaimers saying Hailey was a fictional character.
A school district spokeswoman says the district cannot comment and attorneys for the district say no one can give a statement in order to protect the privacy of the student. However, Barba says her video "accomplished more than I could have imagined.
"Bullying is 100 percent preventable," she says, adding that she thinks she deserves an "A" for the project."
If you don't know the whole story behind this, be sure and scroll through the entire piece--it also contains the original story which started all this. On the whole, what's important is that the spotlight on bullying and its negative aspects continues...
“Things that matter most must never be at the mercy of things that matter least.”--Johann Wolfgang von Goethe (1749-1832)
A poem:
Leavin’ The Old An’ Greetin’ The New
It’s kind of tough t’ have t’ leave
So many folks you’ve learned t’ know,
An’ have ‘em grip yer hand an’ tell
How much they hate t’ see you go!
It’s kinda tough t’ say goodbye
T’ friends you’ve seen day after day–
It’s hard t’ break the happy bonds
O’ comradeship, an’ move away.
It’s hard t’ pack up all yer things
An’ leave a cozy home behind–
The place where joys have come t’ you,
Where neighbors all have been so kind.
An’ when, at last, yer dearest pal
Is tryin’ hard t’ make a bluff
At bein’ brave, an’ breaks right down,
It’s kinda tough — it’s kinda tough!
But say! It’s great t’ find new friends
Just waitin’ fer a chance t’ show
How glad they are t’ have you come
An’ live with ‘em! It’s great t’ know
That folks ‘re jus’ about the same
No matter where you chance t’ roam,
An’ if you let ‘em have their way
You’ll soon be feelin’ right at home.
So, it’s a long farewell old friends, old friends;
May God be mighty good t’ you!
Across the miles an’ down the years
You’ll find my friendship always true.
An’ now I turn with eager heart
T’ meet whatever life extends –
T’ greet the folks that welcome me,
An’ try t’ make ‘em all my friends!
-Lawrence Hawthorne
I'm really glad to see this--here was a young lady trying to raise awareness about the dangers of bullying, and she gets suspended because school administrators totally misinterpreted what she was doing. Ugh--but at least the wrong has been righted:
"Jessica Barba, the New York teen suspended from school for making a controversial anti-bullying video, is returning to school Thursday, NBC News reports.
A morning meeting with the Middle Island, N.Y. school district ended with the high school freshman's suspension removed from the record.
Jessica's father Michael Barba told NBC News that all went well. "I am the proudest father in the world."
Jessica made the six-minute video for a class at Longwood High School in Middle Island, N.Y. The assignment was to create a project about an important issue.
The video, posted on YouTube, tells the story of the fictional 12-year-old Hailey Bennett (played by Jessica), who lost her mother at age 3, is abused by her dad and is all alone after her only friend moves away. Hailey gets bullied at school daily, is mocked on her fake Facebook page, and ultimately, ends her life. The video and the Facebook page had disclaimers saying Hailey was a fictional character.
A school district spokeswoman says the district cannot comment and attorneys for the district say no one can give a statement in order to protect the privacy of the student. However, Barba says her video "accomplished more than I could have imagined.
"Bullying is 100 percent preventable," she says, adding that she thinks she deserves an "A" for the project."
If you don't know the whole story behind this, be sure and scroll through the entire piece--it also contains the original story which started all this. On the whole, what's important is that the spotlight on bullying and its negative aspects continues...
“Things that matter most must never be at the mercy of things that matter least.”--Johann Wolfgang von Goethe (1749-1832)
A poem:
Leavin’ The Old An’ Greetin’ The New
It’s kind of tough t’ have t’ leave
So many folks you’ve learned t’ know,
An’ have ‘em grip yer hand an’ tell
How much they hate t’ see you go!
It’s kinda tough t’ say goodbye
T’ friends you’ve seen day after day–
It’s hard t’ break the happy bonds
O’ comradeship, an’ move away.
It’s hard t’ pack up all yer things
An’ leave a cozy home behind–
The place where joys have come t’ you,
Where neighbors all have been so kind.
An’ when, at last, yer dearest pal
Is tryin’ hard t’ make a bluff
At bein’ brave, an’ breaks right down,
It’s kinda tough — it’s kinda tough!
But say! It’s great t’ find new friends
Just waitin’ fer a chance t’ show
How glad they are t’ have you come
An’ live with ‘em! It’s great t’ know
That folks ‘re jus’ about the same
No matter where you chance t’ roam,
An’ if you let ‘em have their way
You’ll soon be feelin’ right at home.
So, it’s a long farewell old friends, old friends;
May God be mighty good t’ you!
Across the miles an’ down the years
You’ll find my friendship always true.
An’ now I turn with eager heart
T’ meet whatever life extends –
T’ greet the folks that welcome me,
An’ try t’ make ‘em all my friends!
-Lawrence Hawthorne
Wednesday, May 23, 2012
YOUR CHILD CAN'T SLEEP?
I know that for Moebius moms and dads--and really for all moms and dads--the question of getting your young child into bed...and making sure he/she stays there and gets a good night's sleep...can be a big one. And sometimes a taxing one. So what are some good tips to help us parents get the job done? After all, a good night's sleep is so important, especially for those of you parents who have children with Moebius--a child with special needs needs all the sleep and good health he/she can get! So here are some good tips I found:
"Problem: Your child gets up repeatedly after you've put him to bed, calling, “Mom, I need a glass of water.”
Why it happens: Kids make bedtime curtain calls for many reasons. Preschoolers may be asserting their independence: “You can't make me stay in bed!” Or they stall because they're afraid of the dark. The most common reason, though, is that you've slipped from a consistent routine you had when they were babies.
How to rest easy: Before-bed routines are important for children of all ages, says Lynn D'Andrea, M.D., director of the Pediatric Sleep Disorders Center at the Children's Hospital of Wisconsin, in Wauwatosa. “Kids start to think, I've done my routine―now it's bedtime,“ she says.
The evening ritual could be as simple as reading your child a story and wishing him a good night. Another tool is a bedtime pass, a card your child can turn in for one nighttime request. Preschoolers also benefit from rewards (like extra playground time) for staying put.
Problem: Your child is scared―of the boogeyman or even a house fire.
Why it happens: As kids wind down, it's normal for anxieties to surface. Your preschooler is apt to worry about what lurks in the shadows, while an older child may have relatively realistic fears―of robbers, for instance.
How to rest easy: A night-light to chase away gloom and a few squirts of anti-monster spray (tap water in a specially marked bottle) are often enough to settle down a young one. “These are imaginary fears, so imaginary solutions work well,” says Jodi Mindell, Ph.D., an associate director of the Children's Hospital of Philadelphia Sleep Center and a coauthor of Take Charge of Your Child's Sleep. Don't worry about reinforcing anxieties by acknowledging them.
If an older child is a worrier, ban scary movies and books at night. If he frets about intruders or natural disasters, chat with him about these issues well before bedtime. “For example, ask, 'What would you do if we had a fire?'” says D'Andrea. “Having an escape plan for an emergency could also help him relax.”
“Few things are impossible to diligence and skill. Great works are performed not by strength, but perseverance. ”---Dr. Samuel Johnson (1709-1784)
I know that for Moebius moms and dads--and really for all moms and dads--the question of getting your young child into bed...and making sure he/she stays there and gets a good night's sleep...can be a big one. And sometimes a taxing one. So what are some good tips to help us parents get the job done? After all, a good night's sleep is so important, especially for those of you parents who have children with Moebius--a child with special needs needs all the sleep and good health he/she can get! So here are some good tips I found:
"Problem: Your child gets up repeatedly after you've put him to bed, calling, “Mom, I need a glass of water.”
Why it happens: Kids make bedtime curtain calls for many reasons. Preschoolers may be asserting their independence: “You can't make me stay in bed!” Or they stall because they're afraid of the dark. The most common reason, though, is that you've slipped from a consistent routine you had when they were babies.
How to rest easy: Before-bed routines are important for children of all ages, says Lynn D'Andrea, M.D., director of the Pediatric Sleep Disorders Center at the Children's Hospital of Wisconsin, in Wauwatosa. “Kids start to think, I've done my routine―now it's bedtime,“ she says.
The evening ritual could be as simple as reading your child a story and wishing him a good night. Another tool is a bedtime pass, a card your child can turn in for one nighttime request. Preschoolers also benefit from rewards (like extra playground time) for staying put.
Problem: Your child is scared―of the boogeyman or even a house fire.
Why it happens: As kids wind down, it's normal for anxieties to surface. Your preschooler is apt to worry about what lurks in the shadows, while an older child may have relatively realistic fears―of robbers, for instance.
How to rest easy: A night-light to chase away gloom and a few squirts of anti-monster spray (tap water in a specially marked bottle) are often enough to settle down a young one. “These are imaginary fears, so imaginary solutions work well,” says Jodi Mindell, Ph.D., an associate director of the Children's Hospital of Philadelphia Sleep Center and a coauthor of Take Charge of Your Child's Sleep. Don't worry about reinforcing anxieties by acknowledging them.
If an older child is a worrier, ban scary movies and books at night. If he frets about intruders or natural disasters, chat with him about these issues well before bedtime. “For example, ask, 'What would you do if we had a fire?'” says D'Andrea. “Having an escape plan for an emergency could also help him relax.”
“Few things are impossible to diligence and skill. Great works are performed not by strength, but perseverance. ”---Dr. Samuel Johnson (1709-1784)
Tuesday, May 22, 2012
MOVIE TIPS
The other day on Facebook, my friend Chelsey Thomas mentioned a terrific movie she was watching, that would be of special interest to those of us in the Moebius community; it dealt with themes that we often encounter in our lives. That got me thinking--is it possible to find more movies that would be of special interest to us? Here's what I've found:
"Her Name is Sabine":
Here are some details and customer reviews:
"The famous French actress Sandrine Bonnaire paints a beautiful and moving cinematic portrait of her younger sister living with autism. France. French w/ Eng subtitles. Winner - FIPRESCI Award - Cannes Film Festival....
The other day on Facebook, my friend Chelsey Thomas mentioned a terrific movie she was watching, that would be of special interest to those of us in the Moebius community; it dealt with themes that we often encounter in our lives. That got me thinking--is it possible to find more movies that would be of special interest to us? Here's what I've found:
"Her Name is Sabine":
Here are some details and customer reviews:
"The famous French actress Sandrine Bonnaire paints a beautiful and moving cinematic portrait of her younger sister living with autism. France. French w/ Eng subtitles. Winner - FIPRESCI Award - Cannes Film Festival....
What is most remarkable about this movie is the contrast
between the earlier footage of Sabine's youth and the later footage of her after
being institutionalized and highly medicated. It seems that independent
integrated living for the disabled is as much a quandary in France as here. One
moment I liked is when the mother of one of Sabine's fellow residents describes
the effects of taking her son's medication by accident. There's also what struck
me as a sort of unusual definition of autism by one of Sabine's caseworkers. But
what is most unforgettable and makes this film a must see is a scene where
Sabine herself is shown the film of her earlier life."
"A powerful film directed by Emmy Award winner Janet Grillo (Autism: The
Musical), FLY AWAY narrates the story of Jeanne (Beth Broderick, Bonfire of the
Vanities, Sabrina the Teenage Witch) and her autistic teenage daughter, Mandy
(Ashley Rickards, One Tree Hill). Jeanne has cared for Mandy since the day she
was born, growing closer every day to a child who is charmingly offbeat one
moment and nearly impossible to manage the next. In the dog park, Jeanne
encounters Tom (Greg Germann, Ally McBeal, Friends with Money), an easygoing and
accepting neighbor who sparks a romantic interest, but she finds juggling
MandyÕs care and her own career leaves little room for a new man. As the
pressures of work and her childÕs needs increase, she must decide whether or not
to enroll Mandy in a therapeutic residential facility. Over the course of a few
weeks, Jeanne is confronted with the most difficult decision a parent can make:
to let go, allowing her child to grow, but also grow apart; or to hold on tight
and fall together."
"A heartfelt romantic comedy about a handsome but intriguing young man who has
all his life led a sheltered existence -- until he meets a beautiful,
cosmopolitan young woman who pulls him into the outside world, with funny,
touching and entirely unexpected results....
I cried during a lot of this movie....my young son has
Asperger Disorder, and this is the most accurate depiction of a person on the
Autism Spectrum that I've ever seen. I cried tears of joy that someone finally
"got it," and will make others aware of the challenges and gifts of persons
affected by Asperger's. I cried because I know my son's life will be more
difficult due to his Asperger's. I cried because the world will present
obstacles to him that I will not always be there to help him with. I cried
because when we left the theater, my son was staring thoughtfully and I asked
him to share his thoughts and he said...."Wow, I didn't realize that I would
still have Asperger's when I grow up." I hope this movie brings awareness of
autism to a large audience, and people will open themselves to getting to know a
person with the disability....to become friends....and to realize the beautiful
treasure that having a friend on the autism spectrum is. Too many people with
Asperger's are lonely, ignored, unemployed, rejected, teased, and bullied. I
hope this movie helps to change that in a small or big way, for my son and
others....This is a lovely movie - it's funny, romantic, hopeful, and a great
love story - you will never forget it."
"Starring Josh Hartnett and Radha Mitchell (Silent Hill, Man on Fire), Mozart and
the Whale is a heartwarming romantic drama inspired by the true story of two
people with Asperger's Syndrome (a form of autism)....
I attended a viewing of this movie with my daughter and my
friend. My reason for going was for my grandson, who has Aspergers. I found this
to be very uplifting, rewarding and a little sad at times. But it is a relief to
know that my grandson has a very bright future ahead of him. We also had a
chance to meet Jerry, who was very entertaining and really put my fears at ease.
I would suggest this movie for anyone, so they can become more informed on the
subject of Aspergers."
Those should give all of you a good start; see if you can find and share with us all great movies of your own...
“That's all a man can hope for during his lifetime- to set an example- and when he is dead, to be an inspiration for history.”--William McKinley (1843-1901)
Monday, May 21, 2012
GOOD NEWS ON THE EMPLOYMENT FRONT
Walgreens is trying to ramp up its efforts to hire persons with disabilities:
"The nation’s largest drugstore chain is dramatically increasing its efforts to hire people with disabilities.
Walgreens is trying to ramp up its efforts to hire persons with disabilities:
"The nation’s largest drugstore chain is dramatically increasing its efforts to hire people with disabilities.
Walgreens officials said they plan to implement a training program in every state by the end of 2013 that’s designed to help people with disabilities land jobs in the company’s retail stores.
The initiative is an expansion of a pilot program that began in Texas and currently operates at stores in New York and Connecticut as well.
Through the program, Walgreens partners with local disability service providers to identify and train prospective employees for jobs in retail environments. Upon successful completion of the program, individuals can apply for work at Walgreens or other retailers that rely on a similar skill set.
So far, 400 people with disabilities have participated in the training program, 46 percent of whom have subsequently been hired by Walgreens or other retailers, according to the company.
Walgreens plans to immediately expand its efforts to stores in Arizona, Florida, Illinois, Indiana, Iowa, Massachusetts, Minnesota, New York, Oregon, Pennsylvania, Washington and Wisconsin. The rest of the country is expected to participate in the program by the end of next year.
In addition to the retail initiative, at least 10 percent of the workforce at each of Walgreens’ 20 distribution centers is already comprised of people with disabilities. The company is looking to achieve a similar inclusion rate in its stores.
Walgreens’ efforts to expand disability employment have become a model for other employers as well. Last year, Proctor & Gamble said it would follow in the drugstore’s footsteps when they announced that at least 30 percent of employees at a new packaging facility in Maine would be people with physical or developmental disabilities.
Disability advocates say efforts to increase hiring of those with special needs are much needed. As of April, the U.S. Department of Labor said that the unemployment rate for people with disabilities was at 12.5 percent, significantly higher than the 8.1 percent rate faced by the general population."
Good for them!
“Hold fast to dreams. For if dreams die, life is a broken-winged bird that cannot fly.”
James Langston Hughes (1902-1967)
The initiative is an expansion of a pilot program that began in Texas and currently operates at stores in New York and Connecticut as well.
Through the program, Walgreens partners with local disability service providers to identify and train prospective employees for jobs in retail environments. Upon successful completion of the program, individuals can apply for work at Walgreens or other retailers that rely on a similar skill set.
So far, 400 people with disabilities have participated in the training program, 46 percent of whom have subsequently been hired by Walgreens or other retailers, according to the company.
Walgreens plans to immediately expand its efforts to stores in Arizona, Florida, Illinois, Indiana, Iowa, Massachusetts, Minnesota, New York, Oregon, Pennsylvania, Washington and Wisconsin. The rest of the country is expected to participate in the program by the end of next year.
In addition to the retail initiative, at least 10 percent of the workforce at each of Walgreens’ 20 distribution centers is already comprised of people with disabilities. The company is looking to achieve a similar inclusion rate in its stores.
Walgreens’ efforts to expand disability employment have become a model for other employers as well. Last year, Proctor & Gamble said it would follow in the drugstore’s footsteps when they announced that at least 30 percent of employees at a new packaging facility in Maine would be people with physical or developmental disabilities.
Disability advocates say efforts to increase hiring of those with special needs are much needed. As of April, the U.S. Department of Labor said that the unemployment rate for people with disabilities was at 12.5 percent, significantly higher than the 8.1 percent rate faced by the general population."
Good for them!
“Hold fast to dreams. For if dreams die, life is a broken-winged bird that cannot fly.”
James Langston Hughes (1902-1967)
Friday, May 18, 2012
ARE FACEBOOK USERS NARCISSISTS???
I don't really think so, not on the whole--and guess what, new research agrees:
"Last month, a study of 233 Facebook-using college students by researchers at the University of North Carolina Wilmington and the University of Hartford took a different approach. Were the students primarily writing self-promoting status updates? Or were they interested in others, clicking “likes” and posting comments on friends’ pages? How many Facebook friends did they collect?
In addition to measuring narcissism (Do you like being the center of attention or blending in with the crowd?), the researchers also measured a student’s sense of privacy. (Do you share information with a wide circle of friends or value your privacy?) The researchers found, to their surprise, that frequency of Facebook use, whether it was for personal status updates or to connect with friends, was not associated with narcissism. Narcissism per se was associated with only one type of Facebook user — those who amassed unrealistically large numbers of Facebook friends.
Instead, frequent Facebook users were more likely to score high on “openness” and were less concerned about privacy. So what seems like self-promoting behavior may just reflect a generation growing up in the digital age, where information — including details about personal lives — flows freely and connects us.
“It’s a huge oversimplification to say Facebook is for narcissists,” said Lynne Kelly, director of the school of communication at the University of Hartford and one of the study’s authors. “You share information about yourself on Facebook as a way to maintain relationships.”
The social medium of choice for the self-absorbed appears to be Twitter. The researchers found an association between tweeting about oneself and high narcissism scores. That finding alone, I think, is worth tweeting about."
I'm sure there are some on FB who are self-centered narcissists, who love to be the center of attention and who falsely make their life sound uber-wonderful in order to attract more attention.
But a lot of people aren't like that; and in the end, Facebook is what _you_ choose to make it. FB and the internet in general has been terrific for the Moebius Syndrome community, helping to connect us, to answer each others' questions and share experiences.
BRAIN TALK DEPT
A distracted mind can block pain signals; not a bad thing, maybe? Read more:
"Mental diversions have long been known to make pain easier to handle, and new research suggests that's more than just a psychological phenomenon.
A study in Current Biology claims a distracted mind may actually stop pain from reaching the central nervous system by setting off the release of opioid-based chemicals in the body.
In the study, subjects were asked to complete either a hard or easy memory task while undergoing an fMRI. During the test, a painful level of heat was applied to their arms.
Study participants perceived less pain when they were concentrating on the harder of the two memory tasks -- and what they felt was reflected in the fMRI results.
The researchers at University Medical Center Hamburg-Eppendorf observed that the pain signals were blocked from reaching the spinal cord in the scans of the study subjects performing the more difficult task.
In a follow-up study, the researchers performed the same experiment but gave half of the participants an opioid-blocking drug called naloxone. They found that the pain-relieving effects of distraction dropped by 40 percent among participants who were given the drug.
The finding suggests distraction helps trigger a release of endogenous opioids -- or compounds like endorphins that are naturally produced in the body -- to kill the pain.
"The results demonstrate that this phenomenon is not just a psychological phenomenon, but an active neuronal mechanism reducing the amount of pain signals ascending from the spinal cord to higher-order brain regions," said lead author Christian Sprenger."
“In matters of principle, stand like a rock; in matters of taste, swim with the current. ”--Thomas Jefferson (1743-1826)
I don't really think so, not on the whole--and guess what, new research agrees:
"Last month, a study of 233 Facebook-using college students by researchers at the University of North Carolina Wilmington and the University of Hartford took a different approach. Were the students primarily writing self-promoting status updates? Or were they interested in others, clicking “likes” and posting comments on friends’ pages? How many Facebook friends did they collect?
In addition to measuring narcissism (Do you like being the center of attention or blending in with the crowd?), the researchers also measured a student’s sense of privacy. (Do you share information with a wide circle of friends or value your privacy?) The researchers found, to their surprise, that frequency of Facebook use, whether it was for personal status updates or to connect with friends, was not associated with narcissism. Narcissism per se was associated with only one type of Facebook user — those who amassed unrealistically large numbers of Facebook friends.
Instead, frequent Facebook users were more likely to score high on “openness” and were less concerned about privacy. So what seems like self-promoting behavior may just reflect a generation growing up in the digital age, where information — including details about personal lives — flows freely and connects us.
“It’s a huge oversimplification to say Facebook is for narcissists,” said Lynne Kelly, director of the school of communication at the University of Hartford and one of the study’s authors. “You share information about yourself on Facebook as a way to maintain relationships.”
The social medium of choice for the self-absorbed appears to be Twitter. The researchers found an association between tweeting about oneself and high narcissism scores. That finding alone, I think, is worth tweeting about."
I'm sure there are some on FB who are self-centered narcissists, who love to be the center of attention and who falsely make their life sound uber-wonderful in order to attract more attention.
But a lot of people aren't like that; and in the end, Facebook is what _you_ choose to make it. FB and the internet in general has been terrific for the Moebius Syndrome community, helping to connect us, to answer each others' questions and share experiences.
BRAIN TALK DEPT
A distracted mind can block pain signals; not a bad thing, maybe? Read more:
"Mental diversions have long been known to make pain easier to handle, and new research suggests that's more than just a psychological phenomenon.
A study in Current Biology claims a distracted mind may actually stop pain from reaching the central nervous system by setting off the release of opioid-based chemicals in the body.
In the study, subjects were asked to complete either a hard or easy memory task while undergoing an fMRI. During the test, a painful level of heat was applied to their arms.
Study participants perceived less pain when they were concentrating on the harder of the two memory tasks -- and what they felt was reflected in the fMRI results.
The researchers at University Medical Center Hamburg-Eppendorf observed that the pain signals were blocked from reaching the spinal cord in the scans of the study subjects performing the more difficult task.
In a follow-up study, the researchers performed the same experiment but gave half of the participants an opioid-blocking drug called naloxone. They found that the pain-relieving effects of distraction dropped by 40 percent among participants who were given the drug.
The finding suggests distraction helps trigger a release of endogenous opioids -- or compounds like endorphins that are naturally produced in the body -- to kill the pain.
"The results demonstrate that this phenomenon is not just a psychological phenomenon, but an active neuronal mechanism reducing the amount of pain signals ascending from the spinal cord to higher-order brain regions," said lead author Christian Sprenger."
“In matters of principle, stand like a rock; in matters of taste, swim with the current. ”--Thomas Jefferson (1743-1826)
Thursday, May 17, 2012
SOME ODDS AND ENDS
As I finally get caught up on all my grading, final exams, etc etc...
Many of my Moebius friends love their coffee in the morning--and there's good news for them:
"Drinking a daily cup of coffee -- or even several cups -- isn't likely to harm your health, and it may even lower your risk of dying from chronic diseases such as diabetes and heart disease, a new study in the New England Journal of Medicine suggests."
Finally...something we like that ISN'T bad for you!
Meanwhile, isn't it amazing what technology can do these days for the disabled? Check out this story:
"The stroke that disconnected Cathy Hutchinson’s brain from her body has kept her silent and unable to move for more than 14 years. But science is starting to change all that.
Researchers have connected the 58-year-old woman’sbrain
to a computer that runs a robotic arm. As Hutchinson sits at a table staring at a bottled drink and imagining the robot grabbing the bottle and bringing it to her mouth, the robot arm begins to move.
The robot is running on signals detected by sensors implanted in the part of Hutchinson’s brain that would normally control the movements of her right arm. The sensors pick up the sparking of nerve cells and send the signals to the computer which then translates them into commands for the robotic arm. Suddenly Hutchinson is able to do something she could only dream of before: As she thinks about getting herself a drink, the arm reaches over to the bottle and brings it to her lips, where she is able to sip the drink from a straw."
And some with Moebius are also affected by autism. There's some news on that front:
"A simple nasal spray of a naturally-occurring hormone is showing tremendous promise in treating the socialization difficulties associated with autism.
Preliminary findings from a small, ongoing study of children ages 7 to 18 with autism indicate that a spray of oxytocin dramatically alters brain activity, particularly in the areas responsible for socialization.
“When we’re comparing days in which children come in and get an oxytocin spray versus days they come in and get a placebo spray, we’re seeing a huge difference in brain function,” said Ilanit Gordon of the Yale Child Study Center who presented the research Wednesday at the International Meeting for Autism Research in Toronto.
The differences are especially striking because they are apparent as kids perform a wide variety of tasks, Gordon said.
The research is the first double-blind, placebo-controlled study to look at the effects of oxytocin on kids with autism.
Often referred to as the “love hormone,” oxytocin occurs naturally in the body during childbirth and helps mothers bond with their babies, for example.
Though many unknowns remain about the potential for utilizing oxytocin with those who have autism, Gordon said she and her colleagues are optimistic.
“We’re hopeful that this will lead to better treatment for social dysfunction in ASD,” Gordon said."
Could be good news!
"Getting an idea should be like sitting down on a pin. It should make you jump up and do something." -E.L. Simpson
“To finish first, you must first finish. ”--Rick Mears (born 1951)
As I finally get caught up on all my grading, final exams, etc etc...
Many of my Moebius friends love their coffee in the morning--and there's good news for them:
"Drinking a daily cup of coffee -- or even several cups -- isn't likely to harm your health, and it may even lower your risk of dying from chronic diseases such as diabetes and heart disease, a new study in the New England Journal of Medicine suggests."
Finally...something we like that ISN'T bad for you!
Meanwhile, isn't it amazing what technology can do these days for the disabled? Check out this story:
"The stroke that disconnected Cathy Hutchinson’s brain from her body has kept her silent and unable to move for more than 14 years. But science is starting to change all that.
Researchers have connected the 58-year-old woman’s
The robot is running on signals detected by sensors implanted in the part of Hutchinson’s brain that would normally control the movements of her right arm. The sensors pick up the sparking of nerve cells and send the signals to the computer which then translates them into commands for the robotic arm. Suddenly Hutchinson is able to do something she could only dream of before: As she thinks about getting herself a drink, the arm reaches over to the bottle and brings it to her lips, where she is able to sip the drink from a straw."
And some with Moebius are also affected by autism. There's some news on that front:
"A simple nasal spray of a naturally-occurring hormone is showing tremendous promise in treating the socialization difficulties associated with autism.
Preliminary findings from a small, ongoing study of children ages 7 to 18 with autism indicate that a spray of oxytocin dramatically alters brain activity, particularly in the areas responsible for socialization.
“When we’re comparing days in which children come in and get an oxytocin spray versus days they come in and get a placebo spray, we’re seeing a huge difference in brain function,” said Ilanit Gordon of the Yale Child Study Center who presented the research Wednesday at the International Meeting for Autism Research in Toronto.
The differences are especially striking because they are apparent as kids perform a wide variety of tasks, Gordon said.
The research is the first double-blind, placebo-controlled study to look at the effects of oxytocin on kids with autism.
Often referred to as the “love hormone,” oxytocin occurs naturally in the body during childbirth and helps mothers bond with their babies, for example.
Though many unknowns remain about the potential for utilizing oxytocin with those who have autism, Gordon said she and her colleagues are optimistic.
“We’re hopeful that this will lead to better treatment for social dysfunction in ASD,” Gordon said."
Could be good news!
"Getting an idea should be like sitting down on a pin. It should make you jump up and do something." -E.L. Simpson
“To finish first, you must first finish. ”--Rick Mears (born 1951)
Wednesday, May 16, 2012
ANOTHER INSPIRATIONAL STORY
Some with Moebius have Asperger's Syndrome, too. So check out this story:
"Social skills don’t come naturally to Christopher Webster who has Asperger’s syndrome, but offering free hugs to strangers is helping the San Antonio man come out of his shell.
Nearly every Saturday for six years and counting, Webster, 27, has parked himself in downtown San Antonio bearing a cardboard sign that simply reads “free hugs.”
Passersby from all walks of life have taken Webster up on his offer. He estimates that he gives an average of 22 hugs each Saturday.
Aside from bringing happiness to strangers, those who know Webster say his weekly hug routine has allowed the man who also has bipolar disorder to open up. Once described as withdrawn, Webster now takes college courses.
“It was stepping out of my comfort zone,” Webster told the San Antonio Express-News. “Once I started, it became natural. Sometimes its boom, boom, boom; it’s mind-boggling.”
To read more, go here.
“When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.”
Alexander Graham Bell (1847-1922)
Some with Moebius have Asperger's Syndrome, too. So check out this story:
"Social skills don’t come naturally to Christopher Webster who has Asperger’s syndrome, but offering free hugs to strangers is helping the San Antonio man come out of his shell.
Nearly every Saturday for six years and counting, Webster, 27, has parked himself in downtown San Antonio bearing a cardboard sign that simply reads “free hugs.”
Passersby from all walks of life have taken Webster up on his offer. He estimates that he gives an average of 22 hugs each Saturday.
Aside from bringing happiness to strangers, those who know Webster say his weekly hug routine has allowed the man who also has bipolar disorder to open up. Once described as withdrawn, Webster now takes college courses.
“It was stepping out of my comfort zone,” Webster told the San Antonio Express-News. “Once I started, it became natural. Sometimes its boom, boom, boom; it’s mind-boggling.”
To read more, go here.
“When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.”
Alexander Graham Bell (1847-1922)
Tuesday, May 15, 2012
INSPIRATIONAL STORY OF THE DAY
A disabled mom is an inspiration to her TV-newscaster daughter. See why:
"I understood, intellectually, that mom was in a coma. Dad told me she was in a “chemically induced coma” several hours before. We knew it was coming. It was what she wanted. She wouldn’t be in pain after a twelve hour surgery to repair her spine.
But it didn’t really sink in until I was driving home after work late that night. She’s usually the only person awake, so I use my 25 minute commute to catch up with her. I wanted to tell her about my supportive colleagues and the outpouring of love from my community. The sheer volume of people who were praying for her -- strangers, friends, random Facebook friends -- was overwhelming. I wanted to share that with her, but I couldn’t.
She was in a coma.
The first part of her nine-level spinal fusion was over. To answer the inevitable questions of my journalist coworkers, I had a speech prepared: “Essentially, they are breaking and re-setting her spine. It’s extremely rare. Doctors usually don’t do fusions above three levels, because it destabilizes and strains the rest of the skeleton. Her discs had already ruptured and her vertebrae were fusing themselves together, pinching on her spinal cord. She had a lot of neurological symptoms, like paralysis and nerve pain. She physically could not stand up straight. She’s been disabled for most of my life.”
I kept driving, shaken, slower, my mind halfway across the country in a basement ICU. My parents ordered everybody to stay away from the hospital, except for mom’s sister, who alternated shifts with dad so someone was always by her side. My parents did not want their children to be there if something went wrong. Mom was convinced she would not survive the surgery. She had prepared her will, cleaned out closets, and simplified the family’s finances. My parents decided they wanted our last memory of her to be a living, happy one -- not flat lining in a hospital room.
Two days later, the doctors tried to rouse her from the chemical coma. She didn’t come around. Her eyes rolled back into her head, she didn’t respond to her name, she just... wasn’t. They ran all sorts of tests to rule out possible complications, but at the end of the day they had no explanation. She was due to have the second part of the surgery in less than 24 hours.
Dad consulted with the doctors and acted according to mom’s wishes: “If I’m still alive, finish it.” (Mom’s pretty tough.) They placed her into a chemical coma again and completed the second surgery in less than five hours. Doctors were confident it was successful and decided to let her spend another night in a coma before trying to wake her.
This time, she did come around.
First, she opened her eyes. A day later, she squeezed Dad’s hand. Still later, when a doctor came into the room and accidentally got a flash of her behind, she joked, “At least you’re seeing my best side!”
A week after she woke up, I sent her a picture of my cross-eyed cat, Boo, at 2:30 a.m. I was sad and I missed our late night conversations. I didn’t even know if she had her cell phone (or if she knew how to see text messages), but I figured she would get it eventually. She responded, “Ho Boo,” which is parent-text for “Hi Boo.” I immediately called her and we spoke for an hour. Her voice, which has comforted me for twenty seven years, has never sounded sweeter.
Nearly a month after the first cut, she came home. The first time I saw her stand straight up I cried. I couldn’t believe she was standing upright. Less than three months later, she is walking daily in the park behind our house. She can lay flat on a bed. The doctors hope she will be able to travel in a year.
I don’t really have the words to explain how significant this surgery has been. You have to understand, she hasn’t been able to move well in years. That means no college visits, no visits to CNN, not even going out to get our nails done -- nothing. If we wanted to see her, we had to go back to Minnesota. Choosing where to live -- something many people take for granted -- was an existential crisis for my siblings and me. Giving her back her spine, straight up, was like giving her her life back.
Since the surgery, mom’s grabbed life with a vengeance. She survived 20 years with an excruciating disability and most of the time, she’s handled it with grace. When she became too disabled to work, she cherished making breakfast for us in the morning. When she couldn’t do that anymore, she chose to undergo a very dangerous surgery with a year-long recovery. There was no guarantee she would be able to walk afterwards -- in fact, she was told it was possible she’d end up paralyzed or dead. She did it anyway.
Happy Mother’s Day, Mom! Not only do you impress me, you’ve inspired me. I love you."
"A human being is happiest and most successful when dedicated
to a cause outside his own individual, selfish satisfaction."
-Benjamin Spock
A disabled mom is an inspiration to her TV-newscaster daughter. See why:
"I understood, intellectually, that mom was in a coma. Dad told me she was in a “chemically induced coma” several hours before. We knew it was coming. It was what she wanted. She wouldn’t be in pain after a twelve hour surgery to repair her spine.
But it didn’t really sink in until I was driving home after work late that night. She’s usually the only person awake, so I use my 25 minute commute to catch up with her. I wanted to tell her about my supportive colleagues and the outpouring of love from my community. The sheer volume of people who were praying for her -- strangers, friends, random Facebook friends -- was overwhelming. I wanted to share that with her, but I couldn’t.
She was in a coma.
The first part of her nine-level spinal fusion was over. To answer the inevitable questions of my journalist coworkers, I had a speech prepared: “Essentially, they are breaking and re-setting her spine. It’s extremely rare. Doctors usually don’t do fusions above three levels, because it destabilizes and strains the rest of the skeleton. Her discs had already ruptured and her vertebrae were fusing themselves together, pinching on her spinal cord. She had a lot of neurological symptoms, like paralysis and nerve pain. She physically could not stand up straight. She’s been disabled for most of my life.”
I kept driving, shaken, slower, my mind halfway across the country in a basement ICU. My parents ordered everybody to stay away from the hospital, except for mom’s sister, who alternated shifts with dad so someone was always by her side. My parents did not want their children to be there if something went wrong. Mom was convinced she would not survive the surgery. She had prepared her will, cleaned out closets, and simplified the family’s finances. My parents decided they wanted our last memory of her to be a living, happy one -- not flat lining in a hospital room.
Two days later, the doctors tried to rouse her from the chemical coma. She didn’t come around. Her eyes rolled back into her head, she didn’t respond to her name, she just... wasn’t. They ran all sorts of tests to rule out possible complications, but at the end of the day they had no explanation. She was due to have the second part of the surgery in less than 24 hours.
Dad consulted with the doctors and acted according to mom’s wishes: “If I’m still alive, finish it.” (Mom’s pretty tough.) They placed her into a chemical coma again and completed the second surgery in less than five hours. Doctors were confident it was successful and decided to let her spend another night in a coma before trying to wake her.
This time, she did come around.
First, she opened her eyes. A day later, she squeezed Dad’s hand. Still later, when a doctor came into the room and accidentally got a flash of her behind, she joked, “At least you’re seeing my best side!”
A week after she woke up, I sent her a picture of my cross-eyed cat, Boo, at 2:30 a.m. I was sad and I missed our late night conversations. I didn’t even know if she had her cell phone (or if she knew how to see text messages), but I figured she would get it eventually. She responded, “Ho Boo,” which is parent-text for “Hi Boo.” I immediately called her and we spoke for an hour. Her voice, which has comforted me for twenty seven years, has never sounded sweeter.
Nearly a month after the first cut, she came home. The first time I saw her stand straight up I cried. I couldn’t believe she was standing upright. Less than three months later, she is walking daily in the park behind our house. She can lay flat on a bed. The doctors hope she will be able to travel in a year.
I don’t really have the words to explain how significant this surgery has been. You have to understand, she hasn’t been able to move well in years. That means no college visits, no visits to CNN, not even going out to get our nails done -- nothing. If we wanted to see her, we had to go back to Minnesota. Choosing where to live -- something many people take for granted -- was an existential crisis for my siblings and me. Giving her back her spine, straight up, was like giving her her life back.
Since the surgery, mom’s grabbed life with a vengeance. She survived 20 years with an excruciating disability and most of the time, she’s handled it with grace. When she became too disabled to work, she cherished making breakfast for us in the morning. When she couldn’t do that anymore, she chose to undergo a very dangerous surgery with a year-long recovery. There was no guarantee she would be able to walk afterwards -- in fact, she was told it was possible she’d end up paralyzed or dead. She did it anyway.
Happy Mother’s Day, Mom! Not only do you impress me, you’ve inspired me. I love you."
"A human being is happiest and most successful when dedicated
to a cause outside his own individual, selfish satisfaction."
-Benjamin Spock
Monday, May 14, 2012
MORE MOEBIUS SYNDROME IN THE NEWS
First, there's a great story about UK Moebius hero Jack Marshall, who once again has accomplished a major feat:
"Doctors said he'd never walk-but young Jack Marshall showed once again today what an inspiration he is by walking to the top of Scafell Pike, the highest mountain in England. Jack, 14, from Doncaster, has Moebius syndrome - a rare condition which affects his co-ordination, balance and speech.
He's also blind in one eye. But he's raised thousands of pounds to help other children he considers less fortunate than himself. Our reporter David Hirst filmed this footage for on his mobile phone."
Be sure and go to the link above, and check out the video of Jack's accomplishment--impressive!
Meanwhile, staying in the UK, check out the story of young Abbi Forester and her courageous family, as they seek to raise money to help them in their cause:
"THE FAMILY of a Kirkcaldy girl who can’t smile is appealing for help in raising money to allow more research into her rare condition.
Abbi Forrester (5) was diagnosed with Moebius Syndrome shortly after she was born - as well as other conditions - which means she is unable to move her face.
Her story comes just weeks after the Press reported on the case of Kirkcaldy tot Kianna Martin, who has a similar condition.
Abbi’s mum, Linda (38), told The Press that a scan at 20-weeks revealed Abbi had club feet.
Linda, who works as a machine operator, said: “I was able to deal with this because I thought it wasn’t life threatening - it could be fixed through operations - but we didn’t know she had Moebius Syndrome until after she was born. There isnt a pre-pregnancy test to show whether or not a baby has the condition.
“When she was two weeks old doctors started testing Abbi for epilepsy - they thought she was taking fits because her eyes were rolling, but she was actually blinking. We took her to the Sick Kids Hospital in Edinburgh and a doctor diagnosed her condition straight away.”
Facial paralysis
Abbi also has Pierre Robin sequence - meaning she has an underdeveloped jaw, an arched palate and abnormal tongue position - and CFZ syndrome, nonprogresseive muscle weakness.
The mum-of-two continued: “Abbi has facial paralysis - she can roll her eyes and stick out her tongue but there is no other movement. She can be treated with smile therapy but that’s more of a vanity thing, it’s not a cure.”
Linda said the family has been fundraising since 2006 to raise money to help pay for research into Moebius Syndrome.
She has organised race nights and a sponsored skydive, and this weekend, friends of the family, are taking part in fundraising events to boost the coffers.
Sponsored
Gary Thomson, work colleague, is doing a sponsored cycle from John O’Groats to Leven over three days from tomorrow (Friday), while Suzanne Lowe has signed up for the Ignis Asset Management Women’s 10K road race in Glasgow on Sunday.
Linda is hoping to raise as much as possible to help the Moebius Research Trust reach its target of £250,000.
She said: “I am just really pleased that Gary and Suzanne are doing this for us. We have raised almost £12,000 so far but are looking to keep adding to this. If people could make a donation we would be very grateful.”
Isn't it amazing that just recently not one, but two young children from that same small area have been found to have Moebius? It's a small world sometimes. And I think it's terrific that so many friends of the Forrester family are doing their best to help. Good for them.
“You know, I used to think the future was solid or fixed, something you inherited like an old building that you move into when the previous generation moves out or gets chased out. But it's not. The future is not fixed; it's fluid. You can build your own building, or hut or condo...the world is more malleable than you think and it's waiting for you to hammer it into shape.”---Bono (born 1960)
First, there's a great story about UK Moebius hero Jack Marshall, who once again has accomplished a major feat:
"Doctors said he'd never walk-but young Jack Marshall showed once again today what an inspiration he is by walking to the top of Scafell Pike, the highest mountain in England. Jack, 14, from Doncaster, has Moebius syndrome - a rare condition which affects his co-ordination, balance and speech.
He's also blind in one eye. But he's raised thousands of pounds to help other children he considers less fortunate than himself. Our reporter David Hirst filmed this footage for on his mobile phone."
Be sure and go to the link above, and check out the video of Jack's accomplishment--impressive!
Meanwhile, staying in the UK, check out the story of young Abbi Forester and her courageous family, as they seek to raise money to help them in their cause:
"THE FAMILY of a Kirkcaldy girl who can’t smile is appealing for help in raising money to allow more research into her rare condition.
Abbi Forrester (5) was diagnosed with Moebius Syndrome shortly after she was born - as well as other conditions - which means she is unable to move her face.
Her story comes just weeks after the Press reported on the case of Kirkcaldy tot Kianna Martin, who has a similar condition.
Abbi’s mum, Linda (38), told The Press that a scan at 20-weeks revealed Abbi had club feet.
Linda, who works as a machine operator, said: “I was able to deal with this because I thought it wasn’t life threatening - it could be fixed through operations - but we didn’t know she had Moebius Syndrome until after she was born. There isnt a pre-pregnancy test to show whether or not a baby has the condition.
“When she was two weeks old doctors started testing Abbi for epilepsy - they thought she was taking fits because her eyes were rolling, but she was actually blinking. We took her to the Sick Kids Hospital in Edinburgh and a doctor diagnosed her condition straight away.”
Facial paralysis
Abbi also has Pierre Robin sequence - meaning she has an underdeveloped jaw, an arched palate and abnormal tongue position - and CFZ syndrome, nonprogresseive muscle weakness.
The mum-of-two continued: “Abbi has facial paralysis - she can roll her eyes and stick out her tongue but there is no other movement. She can be treated with smile therapy but that’s more of a vanity thing, it’s not a cure.”
Linda said the family has been fundraising since 2006 to raise money to help pay for research into Moebius Syndrome.
She has organised race nights and a sponsored skydive, and this weekend, friends of the family, are taking part in fundraising events to boost the coffers.
Sponsored
Gary Thomson, work colleague, is doing a sponsored cycle from John O’Groats to Leven over three days from tomorrow (Friday), while Suzanne Lowe has signed up for the Ignis Asset Management Women’s 10K road race in Glasgow on Sunday.
Linda is hoping to raise as much as possible to help the Moebius Research Trust reach its target of £250,000.
She said: “I am just really pleased that Gary and Suzanne are doing this for us. We have raised almost £12,000 so far but are looking to keep adding to this. If people could make a donation we would be very grateful.”
Isn't it amazing that just recently not one, but two young children from that same small area have been found to have Moebius? It's a small world sometimes. And I think it's terrific that so many friends of the Forrester family are doing their best to help. Good for them.
“You know, I used to think the future was solid or fixed, something you inherited like an old building that you move into when the previous generation moves out or gets chased out. But it's not. The future is not fixed; it's fluid. You can build your own building, or hut or condo...the world is more malleable than you think and it's waiting for you to hammer it into shape.”---Bono (born 1960)
Friday, May 11, 2012
MOEBIUS SYNDROME IN THE NEWS
Dr. Ronald Zuker, a man very close to the Moebius Syndrome Foundation and probably best known to some of you as the guy who does the "smile surgery", is doing some terrific work on the international stage these days--check it out:
"Renowned international Plastic Surgeon Dr. Ronald Zuker from from Toronto, Canada is visiting the Operation Smile Comprehensive Cleft Care Center in Guwahati as part of an international educational exchange program. Between May 2 to 11, 2012 a multispecialty international team of experts led by Dr. Zuker from the Hospital of Sick Kids, Toronto will be working along with their local counterparts at the Operation Smile Center while exchanging valuable knowledge about various aspects of surgical treatment of cleft deformities.
The Operation Smile Comprehensive Cleft Care Center situated in Mahendra Mohan Choudhury Hospital in Panbazar, Guwahati is as an outcome of the unique Public Private Partnership between Operation Smile and the Government of Assam and supported by the Sir Dorabji Tata Trust & Allied Trusts. It is the most sophisticated, comprehensive cleft care facility in South East Asia.
Along with providing world class treatment and care to the people of Assam, one of the of the key focus areas of Operation Smile is to build and develop local capacity with the objective of ensuring long term sustainability. Dr. Ronald Zuker, who is internationally known for his specialization in facial animation, will provide the local medical team a great opportunity to work with him hands on and gain significant knowledge and skills enhancement through live demonstrations and case studies. Also part of the visiting team are Dr. Greg Borschel, Plastic Surgeon, Dr. Susan Organek, Speech Therapist and Ms. Gail Zuker, Occupational Therapist.
As part of the on-going educational exchange program in collaboration with the Hospital of Sick Kids, Toronto, Canada several medical staff members of the Operation Smile Center in Guwahati have already attended residential training and exposure programs in Canada. Through this program Operation Smile has been able to create opportunities of educational exchange that are considered invaluable and rare even in the biggest of hospitals in metro cities.
"Our current educational efforts are in keeping with the vision of developing our Guwahati Center into an international knowledge center for cleft care. The achievements of this center is already being talked about internationally and we have been receiving expressions of interest from various international experts and institutions to engage with us in knowledge exchange programs. We are delighted to have Dr. Zuker here", says Mr. Mahesh Deori, Director, Operation Smile Comprehensive Cleft Care Center, Guwahati."
Keep up the good work, Dr. Zuker--we're proud of you.
“A desire presupposes the possibility of action to achieve it; action presupposes a goal which is worth achieving. ”--Ayn Rand (1905-1982
“Excellence is never an accident; it is the result of high intention, sincere effort, intelligent direction, skillful execution and the vision to see obstacles as opportunities.”---Anonymous
Dr. Ronald Zuker, a man very close to the Moebius Syndrome Foundation and probably best known to some of you as the guy who does the "smile surgery", is doing some terrific work on the international stage these days--check it out:
"Renowned international Plastic Surgeon Dr. Ronald Zuker from from Toronto, Canada is visiting the Operation Smile Comprehensive Cleft Care Center in Guwahati as part of an international educational exchange program. Between May 2 to 11, 2012 a multispecialty international team of experts led by Dr. Zuker from the Hospital of Sick Kids, Toronto will be working along with their local counterparts at the Operation Smile Center while exchanging valuable knowledge about various aspects of surgical treatment of cleft deformities.
The Operation Smile Comprehensive Cleft Care Center situated in Mahendra Mohan Choudhury Hospital in Panbazar, Guwahati is as an outcome of the unique Public Private Partnership between Operation Smile and the Government of Assam and supported by the Sir Dorabji Tata Trust & Allied Trusts. It is the most sophisticated, comprehensive cleft care facility in South East Asia.
Along with providing world class treatment and care to the people of Assam, one of the of the key focus areas of Operation Smile is to build and develop local capacity with the objective of ensuring long term sustainability. Dr. Ronald Zuker, who is internationally known for his specialization in facial animation, will provide the local medical team a great opportunity to work with him hands on and gain significant knowledge and skills enhancement through live demonstrations and case studies. Also part of the visiting team are Dr. Greg Borschel, Plastic Surgeon, Dr. Susan Organek, Speech Therapist and Ms. Gail Zuker, Occupational Therapist.
As part of the on-going educational exchange program in collaboration with the Hospital of Sick Kids, Toronto, Canada several medical staff members of the Operation Smile Center in Guwahati have already attended residential training and exposure programs in Canada. Through this program Operation Smile has been able to create opportunities of educational exchange that are considered invaluable and rare even in the biggest of hospitals in metro cities.
"Our current educational efforts are in keeping with the vision of developing our Guwahati Center into an international knowledge center for cleft care. The achievements of this center is already being talked about internationally and we have been receiving expressions of interest from various international experts and institutions to engage with us in knowledge exchange programs. We are delighted to have Dr. Zuker here", says Mr. Mahesh Deori, Director, Operation Smile Comprehensive Cleft Care Center, Guwahati."
Keep up the good work, Dr. Zuker--we're proud of you.
“A desire presupposes the possibility of action to achieve it; action presupposes a goal which is worth achieving. ”--Ayn Rand (1905-1982
“Excellence is never an accident; it is the result of high intention, sincere effort, intelligent direction, skillful execution and the vision to see obstacles as opportunities.”---Anonymous
Thursday, May 10, 2012
INSPIRATIONAL STORY OF THE DAY
A young woman hit with paralysis gets herself back in the saddle:
"Ever since the age of four, I've been a horseback rider. It never occurred to me that a day might come when I wouldn’t be able to ride. But March 7, 2010, was that day.
It was a normal Sunday afternoon. As usual, I had woken up late. I was showering and started feeling some cramping in my lower back, which wasn’t uncommon because I was being treated for a stress fracture in my lumbar spine. I was out of the shower and partially dressed when it happened - the explosion of pain.
I screamed for help and my mother rushed in. She managed to help me up off the bathroom floor and helped me finish getting dressed. We made it down the stairs, into the kitchen and through the garage door before my legs started giving out. At this point, my parents had to half carry, half drag me out to our vehicle.
It was only a matter of minutes, but I had already lost the strength and feeling in my legs; my parents had to completely lift me into the truck.
As we drove the 40 minutes to the hospital, I remember constantly trying to move my legs and repeatedly being frustrated that they wouldn’t cooperate. At that point, I was still able to move and feel my toes, but nothing else below my waist. When we arrived at the hospital at around 4 p.m., I was immediately taken for X-rays and an MRI.
My diagnosis was a ruptured disk which bruised my spinal cord. A doctor explained that this was a very rare condition for a child or teenager and that surgery was needed to decompress my spine. By 5 a.m. on Monday, March 8, I was being wheeled into surgery. The surgeon was able to successfully decompress my spine, but it did not cure my paralysis.
I was tested numerous times to establish why my disk ruptured, but the cause was never determined. All they could tell me was that I was paralyzed from the waist down.
It was only 10 days before they transferred me to the Kennedy Krieger Institute in Baltimore, home of the International Center for Spinal Cord Injury. I spent nearly nine weeks as an inpatient, where – through intensive rehabilitation – I was taught how to be independent and through physical therapy, rebuild muscle strength and nervous system connections.
This is also where I learned that it might be possible to ride a horse again, even though I was paralyzed. That place was called Freedom Hills Therapeutic Riding Program, in Port Deposit, Maryland. Due to my surgery, I wasn't able to ride at the time, but I made sure to keep it in the back of my mind.
Five months after my injury, I went back to school for the first time. It was not without its challenges. Getting around the school on my own and talking with people was difficult. It was almost impossible for me to look people in the eye, and I got many stares on my first day. I managed, though, and each day it became a little easier.
By October, I had recovered enough to consider riding again. Freedom Hills offers a unique program called hippotherapy. It is a form of physical therapy using the characteristic movements of a horse to help a patient increase trunk strength and control, balance and overall posture strength and endurance. Two weeks later, I was on my way to Freedom Hills, feeling excited and nervous. I was nervous that my body wouldn’t be capable of physically doing what I wanted it to do.
Before, I was an accomplished horseback rider, and I didn’t give a single thought as to how different my life would be without the use of my legs. Now, I had to expect the impossible.
Almost immediately after arriving at the farm, I was thrown into the situation I feared the most - getting on the horse. It was tricky. I had to transfer straight from my chair onto the horse’s back, but once I was on, all of that nervousness went away. I was grinning from ear to ear.
For my first ride, someone led the horse and two people walked on either side of me for support. I was hooked on horses (again!) and began riding twice a week. I never imagined how much you could miss by simply not being able to control the lower half of your body, never mind a horse. I had never noticed how much I took for granted.
I continued to ride for five months before something amazing happened. I was at Kennedy Krieger for an evaluation of my recovery, and I was able to move my legs for the first time. I believe this small portion of recovery was brought about by the unique combination of innovative activity-based restorative therapy and the therapeutic horseback riding.
Now, a year and a half later, at the age of 16, I ride independently and compete year-round. I am also a volunteer at Freedom Hills. I love being able to share my passion and show people, that riding as a para-equestrian isn’t much different from riding as an able-bodied person. I also continue my rehabilitation at Kennedy Krieger.
Looking ahead, two of my goals are walking across the stage at my high school graduation from North East High School in North East, Maryland, as well as competing in the U.S. Paralympics for para-dressage.
I would also like to help and encourage others to live an active life in their wheelchairs. There are so many activities for people with disabilities including basketball, tennis, skiing, and archery.
Having a spinal cord injury doesn’t have to mean an end to the hobbies and sports that you love; it just means having a view from a different angle."
"The secret of discipline is motivation. When a man is
sufficiently motivated, discipline will take care of itself."
-Alexander Paterson
"Happiness is not a state to arrive at, but a manner of
traveling." -Margaret Lee Runbeck
A young woman hit with paralysis gets herself back in the saddle:
"Ever since the age of four, I've been a horseback rider. It never occurred to me that a day might come when I wouldn’t be able to ride. But March 7, 2010, was that day.
It was a normal Sunday afternoon. As usual, I had woken up late. I was showering and started feeling some cramping in my lower back, which wasn’t uncommon because I was being treated for a stress fracture in my lumbar spine. I was out of the shower and partially dressed when it happened - the explosion of pain.
I screamed for help and my mother rushed in. She managed to help me up off the bathroom floor and helped me finish getting dressed. We made it down the stairs, into the kitchen and through the garage door before my legs started giving out. At this point, my parents had to half carry, half drag me out to our vehicle.
It was only a matter of minutes, but I had already lost the strength and feeling in my legs; my parents had to completely lift me into the truck.
As we drove the 40 minutes to the hospital, I remember constantly trying to move my legs and repeatedly being frustrated that they wouldn’t cooperate. At that point, I was still able to move and feel my toes, but nothing else below my waist. When we arrived at the hospital at around 4 p.m., I was immediately taken for X-rays and an MRI.
My diagnosis was a ruptured disk which bruised my spinal cord. A doctor explained that this was a very rare condition for a child or teenager and that surgery was needed to decompress my spine. By 5 a.m. on Monday, March 8, I was being wheeled into surgery. The surgeon was able to successfully decompress my spine, but it did not cure my paralysis.
I was tested numerous times to establish why my disk ruptured, but the cause was never determined. All they could tell me was that I was paralyzed from the waist down.
It was only 10 days before they transferred me to the Kennedy Krieger Institute in Baltimore, home of the International Center for Spinal Cord Injury. I spent nearly nine weeks as an inpatient, where – through intensive rehabilitation – I was taught how to be independent and through physical therapy, rebuild muscle strength and nervous system connections.
This is also where I learned that it might be possible to ride a horse again, even though I was paralyzed. That place was called Freedom Hills Therapeutic Riding Program, in Port Deposit, Maryland. Due to my surgery, I wasn't able to ride at the time, but I made sure to keep it in the back of my mind.
Five months after my injury, I went back to school for the first time. It was not without its challenges. Getting around the school on my own and talking with people was difficult. It was almost impossible for me to look people in the eye, and I got many stares on my first day. I managed, though, and each day it became a little easier.
By October, I had recovered enough to consider riding again. Freedom Hills offers a unique program called hippotherapy. It is a form of physical therapy using the characteristic movements of a horse to help a patient increase trunk strength and control, balance and overall posture strength and endurance. Two weeks later, I was on my way to Freedom Hills, feeling excited and nervous. I was nervous that my body wouldn’t be capable of physically doing what I wanted it to do.
Before, I was an accomplished horseback rider, and I didn’t give a single thought as to how different my life would be without the use of my legs. Now, I had to expect the impossible.
Almost immediately after arriving at the farm, I was thrown into the situation I feared the most - getting on the horse. It was tricky. I had to transfer straight from my chair onto the horse’s back, but once I was on, all of that nervousness went away. I was grinning from ear to ear.
For my first ride, someone led the horse and two people walked on either side of me for support. I was hooked on horses (again!) and began riding twice a week. I never imagined how much you could miss by simply not being able to control the lower half of your body, never mind a horse. I had never noticed how much I took for granted.
I continued to ride for five months before something amazing happened. I was at Kennedy Krieger for an evaluation of my recovery, and I was able to move my legs for the first time. I believe this small portion of recovery was brought about by the unique combination of innovative activity-based restorative therapy and the therapeutic horseback riding.
Now, a year and a half later, at the age of 16, I ride independently and compete year-round. I am also a volunteer at Freedom Hills. I love being able to share my passion and show people, that riding as a para-equestrian isn’t much different from riding as an able-bodied person. I also continue my rehabilitation at Kennedy Krieger.
Looking ahead, two of my goals are walking across the stage at my high school graduation from North East High School in North East, Maryland, as well as competing in the U.S. Paralympics for para-dressage.
I would also like to help and encourage others to live an active life in their wheelchairs. There are so many activities for people with disabilities including basketball, tennis, skiing, and archery.
Having a spinal cord injury doesn’t have to mean an end to the hobbies and sports that you love; it just means having a view from a different angle."
"The secret of discipline is motivation. When a man is
sufficiently motivated, discipline will take care of itself."
-Alexander Paterson
"Happiness is not a state to arrive at, but a manner of
traveling." -Margaret Lee Runbeck
Wednesday, May 9, 2012
A DEBATE OVER BODY IMAGE
And I think any such debate can be a good thing--it's good to have the media and society question themselves over the obsession with a certain form of body image, and to question the exclusivity of the way we use the term "beauty." Read on as to what caused the latest dustup:
"To many, Ashley Judd is the picture of beauty. But, as CBS News reported, recent "puffy faced" appearances of the actress while she was promoting her new television series "Missing" has lead many to speculate that she either had work done or gained too much weight.
Judd fired back at the media and public critics in a column on the Daily Beast that blatantly called out people for following society's views on beauty. The actress wrote that media outlets did not give her a chance to explain her face -- the result of being on steroids after battling a sinus infection -- and even worse, they ridiculed her apparent change in looks as a botched plastic surgery attempt. She was accused of having wrinkles removed and even was told she was facing the possibility of losing her husband because her weight gain was making him "(look) for his second wife."
But, it wasn't only the media outlets that took cheap shots at Judd. Her fans joined in, making comments about the work she had done and how she had ruined her looks.
"This abnormal obsession with women's faces and bodies has become so normal that we (I include myself at times--I absolutely fall for it still) have internalized patriarchy almost seamlessly. We are unable at times to identify ourselves as our own denigrating abusers, or as abusing other girls and women," Judd wrote.
This obsession with what is considered beautiful -- and why Judd's puffy face was such a big media discussion -- is what creates many issues for women of all ages.
"In terms of establishing body images, there tends to be three primary influences: peers, family and the media," Dr. Andrea Vazzana, clinical assistant professor of child and adolescent psychiatry and psychiatry at NYU Langone Medical Center said to HealthPop. "We know that people use the media as a source of information to show them what's in fashion and what they're supposed to look like."
Vazzana points out that perception of what is beautiful has changed. Twenty-five years ago, the average model weighed eight percent less than the average person. Now, they weigh 23 percent less. Back in the 1950s and 1960s, being more curvacious was lauded; today, we have the "thin ideal" to look up to. The trend can also be noticed in the Miss America pageants, where research has shown that the contestants are growing skinnier by the year.
"The standards of beauty are becoming more unrealistic. The discrepancy between the every day person and the celebrity has grown in size," Vazzana said.
Twenty-four million Americans suffer from an eating disorder, according to the National Association of Anorexia Nervosa and Associated Disorders Inc. Currently, eating disorders have the highest mortality rate of any mental disorder. One in 200 women in the U.S. suffers from anorexia, and two to three out of 100 women will have bulimia, the South Carolina Department of Mental Health reported.
That doesn't include other psychological disorders like body dysmorphic disorder, where people obsesses over perceived flaws in their appearance. This disorder can lead to depression, disability and suicide. Exposure to the "thin ideal" can also increase risk factors for developing depression and self-esteem shifts.
Dr. Joanna Dolgoff, a pediatrician, family obesity specialist and author of "Red Light, Green Light, Eat Right" told HealthPop that these critical portrayals of women in the media often leads to problems with young girls and how they perceive themselves.
"When a young girl looks at herself and sees Ashley Judd, who is beautiful, and sees that they are calling her fat, she starts to think I must be ugly," she explained.
"They feel bad about themselves, and they start eating more. They think, 'I'll never be good enough,' and they start starving themselves," she added.
It's not only the kids that are getting the messed-up messages from the media: They're getting it from their mothers. Dolgoff said that when normal weight mothers try to diet down to an unrealistic size their daughters get the message that unhealthy body images are okay. Girls often stop by and ask why they can't be as skinny as their friends, even though they are at a normal weight for their frame and height.
Dolgoff has even had normal weight girls brought into her office by their mothers, who demand that their "fat" daughters need to lose weight. One case that shocked her involved a size 0 mother and her skinny, hourglass shaped daughter.
"She smacked her daughters butt and said, 'Look how it jiggles! Look how it jiggles!' The girl was completely a normal weight," Dolgoff recalled, adding that the family spent a lot of time in counseling speaking about what is healthy and what an appropriate goal is.
The problem is not all women can attain that stick thin figure that is shoved in everyone's face as the epitome of beauty. Even with diet and exercise, body shape can't change that dramatically. Vazzana said some people are naturally born with apple shapes, and others have a pear body. Very few have that natural asparagus shape, she pointed out.
"Parents need to point out there is as problem with society. It's not okay what these people are writing. A lot of kids need to hear their parents ay this is not okay, this woman is health and she looks wonderful. We need healthy bodies and healthy hearts," Dolgoff said."
“It's not what you look at that matters, it's what you see. ”--Henry David Thoreau (1817-1862)
"If I am anything, which I highly doubt, I have made myself so by hard work." -Sir Isaac Newton
And I think any such debate can be a good thing--it's good to have the media and society question themselves over the obsession with a certain form of body image, and to question the exclusivity of the way we use the term "beauty." Read on as to what caused the latest dustup:
"To many, Ashley Judd is the picture of beauty. But, as CBS News reported, recent "puffy faced" appearances of the actress while she was promoting her new television series "Missing" has lead many to speculate that she either had work done or gained too much weight.
Judd fired back at the media and public critics in a column on the Daily Beast that blatantly called out people for following society's views on beauty. The actress wrote that media outlets did not give her a chance to explain her face -- the result of being on steroids after battling a sinus infection -- and even worse, they ridiculed her apparent change in looks as a botched plastic surgery attempt. She was accused of having wrinkles removed and even was told she was facing the possibility of losing her husband because her weight gain was making him "(look) for his second wife."
But, it wasn't only the media outlets that took cheap shots at Judd. Her fans joined in, making comments about the work she had done and how she had ruined her looks.
"This abnormal obsession with women's faces and bodies has become so normal that we (I include myself at times--I absolutely fall for it still) have internalized patriarchy almost seamlessly. We are unable at times to identify ourselves as our own denigrating abusers, or as abusing other girls and women," Judd wrote.
This obsession with what is considered beautiful -- and why Judd's puffy face was such a big media discussion -- is what creates many issues for women of all ages.
"In terms of establishing body images, there tends to be three primary influences: peers, family and the media," Dr. Andrea Vazzana, clinical assistant professor of child and adolescent psychiatry and psychiatry at NYU Langone Medical Center said to HealthPop. "We know that people use the media as a source of information to show them what's in fashion and what they're supposed to look like."
Vazzana points out that perception of what is beautiful has changed. Twenty-five years ago, the average model weighed eight percent less than the average person. Now, they weigh 23 percent less. Back in the 1950s and 1960s, being more curvacious was lauded; today, we have the "thin ideal" to look up to. The trend can also be noticed in the Miss America pageants, where research has shown that the contestants are growing skinnier by the year.
"The standards of beauty are becoming more unrealistic. The discrepancy between the every day person and the celebrity has grown in size," Vazzana said.
Twenty-four million Americans suffer from an eating disorder, according to the National Association of Anorexia Nervosa and Associated Disorders Inc. Currently, eating disorders have the highest mortality rate of any mental disorder. One in 200 women in the U.S. suffers from anorexia, and two to three out of 100 women will have bulimia, the South Carolina Department of Mental Health reported.
That doesn't include other psychological disorders like body dysmorphic disorder, where people obsesses over perceived flaws in their appearance. This disorder can lead to depression, disability and suicide. Exposure to the "thin ideal" can also increase risk factors for developing depression and self-esteem shifts.
Dr. Joanna Dolgoff, a pediatrician, family obesity specialist and author of "Red Light, Green Light, Eat Right" told HealthPop that these critical portrayals of women in the media often leads to problems with young girls and how they perceive themselves.
"When a young girl looks at herself and sees Ashley Judd, who is beautiful, and sees that they are calling her fat, she starts to think I must be ugly," she explained.
"They feel bad about themselves, and they start eating more. They think, 'I'll never be good enough,' and they start starving themselves," she added.
It's not only the kids that are getting the messed-up messages from the media: They're getting it from their mothers. Dolgoff said that when normal weight mothers try to diet down to an unrealistic size their daughters get the message that unhealthy body images are okay. Girls often stop by and ask why they can't be as skinny as their friends, even though they are at a normal weight for their frame and height.
Dolgoff has even had normal weight girls brought into her office by their mothers, who demand that their "fat" daughters need to lose weight. One case that shocked her involved a size 0 mother and her skinny, hourglass shaped daughter.
"She smacked her daughters butt and said, 'Look how it jiggles! Look how it jiggles!' The girl was completely a normal weight," Dolgoff recalled, adding that the family spent a lot of time in counseling speaking about what is healthy and what an appropriate goal is.
The problem is not all women can attain that stick thin figure that is shoved in everyone's face as the epitome of beauty. Even with diet and exercise, body shape can't change that dramatically. Vazzana said some people are naturally born with apple shapes, and others have a pear body. Very few have that natural asparagus shape, she pointed out.
"Parents need to point out there is as problem with society. It's not okay what these people are writing. A lot of kids need to hear their parents ay this is not okay, this woman is health and she looks wonderful. We need healthy bodies and healthy hearts," Dolgoff said."
“It's not what you look at that matters, it's what you see. ”--Henry David Thoreau (1817-1862)
"If I am anything, which I highly doubt, I have made myself so by hard work." -Sir Isaac Newton
Tuesday, May 8, 2012
MOEBIUS SYNDROME IN THE NEWS
You all may have seen this story already, but just in case you haven't, check out the story of Lea Dozois and her child with Moebius Syndrome. It shows how just one person can make a difference:
"Lea Dozois struggled with the idea when a Dunedin woman insisted on putting together a fundraiser for her special-needs infant daughter.
The young mother felt awkward being on the receiving end of so much generosity.
Eventually, she embraced the idea, after she realized saying no would effectively deny the joy of giving to the Dunedin woman, a recent breast cancer survivor who wanted to pay forward good deeds others had done for her.
Lea's change of heart helped her realize “you just have to take care of your family and not care what anyone else thinks.”
Family Came Together Sooner Than Expected
Lea, a 2004 Dunedin High School grad, said she and boyfriend Joel Lacey didn’t expect to get pregnant last October.
Lea, 25, had every intention of being a singer, and the music scene in downtown St. Pete seemed like a good place to start. So she transferred from her job at Earth Origins health food store in Palm Harbor to one in downtown St. Pete after graduating in 2009 from the University of South Florida. "I didn’t know what I wanted," she said.
That’s where she met and quickly fell in love with her Earth Origins co-worker, Joel, 23, a Vermont native whose mother has a passion for holistic living.
Their excitement of being first-time parents took an unexpected turn just three days after Lily Laceywas born on July 2.
Infant Lily couldn’t suck, making feeding difficult, and one of her eyes had a tendency to roll backward. The doctors quickly determined Lily had a rare birth defect called Moebius syndrome, which is caused by an absence or underdevelopment of specific nerves that control eye movement and facial expression.
Doctors were telling Lea the worst: Her baby could be deaf, blind, mentally disabled or autistic. Between 30 and 40 percent of children with Moebius syndrome have a form of autism, according to the National Institute for Neurological Disorders and Stroke.
As children with Moebius syndrome get older, other symptoms become more apparent, such as speech impediments and an inability to move the eyes back and forth, according to NINDS, but the most dominant symptom is permanent facial paralysis.
Mom and Dad Are Learning Along with Lily
“I couldn’t handle it in the beginning,” Lea said as she tearfully recounted the days after Lily was born. “You see pictures some of the kids who have this and your heart just drops.” You worry, “is she gonna be that kid that everybody picks on?”
Joel told her, “'We’ll deal with it as it comes',” she said. “He brought me back.”
As the weeks passed, the extent of Lily’s condition became clearer. Her face is only partially paralyzed (on the left side), she suffers from moderate hearing loss in one ear, and her motor development is delayed. At 4 months, she still behaved like an infant, Lea said. At 8 months, she was just beginning to hold her head up. Now at 10 months, she recently began to roll on her side and has figured out how to put her thumb in her mouth.
Lea and Joel celebrate baby's first moments that many parents take for granted.
“The first time she followed a toy with her eyes, we were ... !" Lea raised her arms in mock excitement.
To help her catch up, Joel’s mom, a massage therapist, suggested craniosacral therapy, a type of massage that focuses on the membranes and fluid surrounding the skull and spine. Lea also takes Lily to occupational therapy and physical therapy sessions three times a week, which employ techniques such as joint compressions and body scrubbing to help stimulate Lily's nerves.
“She was a totally different baby,” Lea said. "Within a couple weeks, she wasn't hitting herself as much — just, with her coordination."
For a time, the couple shared one car between them. They struggle but they plan ahead, and with Joel’s employee discount on groceries, WIC, Medicaid and an understanding employer (Lea now works as a leasing consultant in the same apartment complex where she lives), they manage to make ends meet and remain grateful.
“I wouldn’t want another baby who doesn’t have any problems over having her. Now I actually have a purpose. She’s giving me a purpose,” Lea said.
Good Samaritan's Tragedy Derails Fundraiser
A fundraiser for Lily was all set for May 3 at Maurice Jewelry Design with the intention of helping to raise $3,200 for Lily to attend a five-day intensive Integrative Intentions therapy program, which was recommended by her craniosacral therapist Anne Wister of St. Petersburg. People who have attended past intensive programs report miraculous results, Lea said.
That fundraiser was canceled recently when the Dunedin organizer learned her cancer had returned with a vengeance, this time to her bones. “I am so very sorry, I tried to get someone to take it over but it is just too late,” she wrote to Lea in an email.
But with the next weeklong therapy program in Florida coming up in November, Lea is trying to figure out how to make it work.
As Lea's father always taught her: "Everything in life is about perspective."
“This happening was probably the hardest thing I had to deal with,” Lea said, sitting at a Starbucks with 8-month-old Lily sleeping in a carrier nearby. “But I’m glad it happened to us.”
So far, she's raised $495."
“The person who makes a success of living is the one who sees his goal steadily and aims for it unswervingly. That is dedication. ”--Cecil B. DeMille (1881-1959)
“Ideas are like stars; you will not succeed in touching them with your hands. But like the seafaring man on the desert of waters, you choose them as your guides, and following them you will reach your destiny. ”--Carl Schurz (1829-1906)
You all may have seen this story already, but just in case you haven't, check out the story of Lea Dozois and her child with Moebius Syndrome. It shows how just one person can make a difference:
"Lea Dozois struggled with the idea when a Dunedin woman insisted on putting together a fundraiser for her special-needs infant daughter.
The young mother felt awkward being on the receiving end of so much generosity.
Eventually, she embraced the idea, after she realized saying no would effectively deny the joy of giving to the Dunedin woman, a recent breast cancer survivor who wanted to pay forward good deeds others had done for her.
Lea's change of heart helped her realize “you just have to take care of your family and not care what anyone else thinks.”
Family Came Together Sooner Than Expected
Lea, a 2004 Dunedin High School grad, said she and boyfriend Joel Lacey didn’t expect to get pregnant last October.
Lea, 25, had every intention of being a singer, and the music scene in downtown St. Pete seemed like a good place to start. So she transferred from her job at Earth Origins health food store in Palm Harbor to one in downtown St. Pete after graduating in 2009 from the University of South Florida. "I didn’t know what I wanted," she said.
That’s where she met and quickly fell in love with her Earth Origins co-worker, Joel, 23, a Vermont native whose mother has a passion for holistic living.
Their excitement of being first-time parents took an unexpected turn just three days after Lily Laceywas born on July 2.
Infant Lily couldn’t suck, making feeding difficult, and one of her eyes had a tendency to roll backward. The doctors quickly determined Lily had a rare birth defect called Moebius syndrome, which is caused by an absence or underdevelopment of specific nerves that control eye movement and facial expression.
Doctors were telling Lea the worst: Her baby could be deaf, blind, mentally disabled or autistic. Between 30 and 40 percent of children with Moebius syndrome have a form of autism, according to the National Institute for Neurological Disorders and Stroke.
As children with Moebius syndrome get older, other symptoms become more apparent, such as speech impediments and an inability to move the eyes back and forth, according to NINDS, but the most dominant symptom is permanent facial paralysis.
Mom and Dad Are Learning Along with Lily
“I couldn’t handle it in the beginning,” Lea said as she tearfully recounted the days after Lily was born. “You see pictures some of the kids who have this and your heart just drops.” You worry, “is she gonna be that kid that everybody picks on?”
Joel told her, “'We’ll deal with it as it comes',” she said. “He brought me back.”
As the weeks passed, the extent of Lily’s condition became clearer. Her face is only partially paralyzed (on the left side), she suffers from moderate hearing loss in one ear, and her motor development is delayed. At 4 months, she still behaved like an infant, Lea said. At 8 months, she was just beginning to hold her head up. Now at 10 months, she recently began to roll on her side and has figured out how to put her thumb in her mouth.
Lea and Joel celebrate baby's first moments that many parents take for granted.
“The first time she followed a toy with her eyes, we were ... !" Lea raised her arms in mock excitement.
To help her catch up, Joel’s mom, a massage therapist, suggested craniosacral therapy, a type of massage that focuses on the membranes and fluid surrounding the skull and spine. Lea also takes Lily to occupational therapy and physical therapy sessions three times a week, which employ techniques such as joint compressions and body scrubbing to help stimulate Lily's nerves.
“She was a totally different baby,” Lea said. "Within a couple weeks, she wasn't hitting herself as much — just, with her coordination."
For a time, the couple shared one car between them. They struggle but they plan ahead, and with Joel’s employee discount on groceries, WIC, Medicaid and an understanding employer (Lea now works as a leasing consultant in the same apartment complex where she lives), they manage to make ends meet and remain grateful.
“I wouldn’t want another baby who doesn’t have any problems over having her. Now I actually have a purpose. She’s giving me a purpose,” Lea said.
Good Samaritan's Tragedy Derails Fundraiser
A fundraiser for Lily was all set for May 3 at Maurice Jewelry Design with the intention of helping to raise $3,200 for Lily to attend a five-day intensive Integrative Intentions therapy program, which was recommended by her craniosacral therapist Anne Wister of St. Petersburg. People who have attended past intensive programs report miraculous results, Lea said.
That fundraiser was canceled recently when the Dunedin organizer learned her cancer had returned with a vengeance, this time to her bones. “I am so very sorry, I tried to get someone to take it over but it is just too late,” she wrote to Lea in an email.
But with the next weeklong therapy program in Florida coming up in November, Lea is trying to figure out how to make it work.
As Lea's father always taught her: "Everything in life is about perspective."
“This happening was probably the hardest thing I had to deal with,” Lea said, sitting at a Starbucks with 8-month-old Lily sleeping in a carrier nearby. “But I’m glad it happened to us.”
So far, she's raised $495."
“The person who makes a success of living is the one who sees his goal steadily and aims for it unswervingly. That is dedication. ”--Cecil B. DeMille (1881-1959)
“Ideas are like stars; you will not succeed in touching them with your hands. But like the seafaring man on the desert of waters, you choose them as your guides, and following them you will reach your destiny. ”--Carl Schurz (1829-1906)
Monday, May 7, 2012
A REMINDER OF HOW HUMAN, AND HOW VALUABLE, WE ALL ARE
From a recent column in the Washington Post, from a noted political columnist, that I think in this case need not make any of us take political sides. Rather, it reminds us of something all of us with Moebius appreciate--the value of all human life, no matter how not "normal" or "worthwhile" some might see that life. Here are some of the best excerpts from the column:
"When Jonathan Frederick Will was born 40 years ago — on May 4, 1972,
his father’s 31st birthday — the life expectancy for people with Down
syndrome was about 20 years. That is understandable.
The day after Jon was born, a doctor told Jon’s parents that the first
question for them was whether they intended to take Jon home from the
hospital. Nonplussed, they said they thought that is what parents do
with newborns. Not doing so was, however, still considered an
acceptable choice for parents who might prefer to institutionalize or
put up for adoption children thought to have necessarily bleak
futures. Whether warehoused or just allowed to languish from lack of
stimulation and attention, people with Down syndrome, not given early
and continuing interventions, were generally thought to be incapable
of living well, and hence usually did not live as long as they could
have.
Down syndrome is a congenital condition resulting from a chromosomal
defect — an extra 21st chromosome. It causes varying degrees of mental
retardation and some physical abnormalities, including small stature,
a single crease across the center of the palms, flatness of the back
of the head, a configuration of the tongue that impedes articulation,
and a slight upward slant of the eyes. In 1972, people with Down
syndrome were still commonly called Mongoloids.
Now they are called American citizens, about 400,000 of them, and
their life expectancy is 60. Much has improved. There has, however,
been moral regression as well....So today science enables what the ethos ratifies, the
choice of killing children with Down syndrome before birth. That is
what happens to 90 percent of those whose parents receive a Down
syndrome diagnosis through prenatal testing.
Which is unfortunate, and not just for them. Judging by Jon, the world
would be improved by more people with Down syndrome, who are quite
nice, as humans go. It is said we are all born brave, trusting and
greedy, and remain greedy. People with Down syndrome must remain brave
in order to navigate society’s complexities. They have no choice but
to be trusting because, with limited understanding, and limited
abilities to communicate misunderstanding, they, like Blanche DuBois
in “A Streetcar Named Desire,” always depend on the kindness of
strangers. Judging by Jon’s experience, they almost always receive it.
Two things that have enhanced Jon’s life are the Washington subway
system, which opened in 1976, and the Washington Nationals baseball
team, which arrived in 2005. He navigates the subway expertly, riding
it to the Nationals ballpark, where he enters the clubhouse a few
hours before game time and does a chore or two. The players, who have
climbed to the pinnacle of a steep athletic pyramid, know that
although hard work got them there, they have extraordinary aptitudes
because they are winners of life’s lottery. Major leaguers, all of
whom understand what it is to be gifted, have been uniformly and
extraordinarily welcoming to Jon, who is not.
Except he is, in a way. He has the gift of serenity, in this sense:
The eldest of four siblings, he has seen two brothers and a sister
surpass him in size, and acquire cars and college educations. He,
however, with an underdeveloped entitlement mentality, has been
equable about life’s sometimes careless allocation of equity. Perhaps
this is partly because, given the nature of Down syndrome, neither he
nor his parents have any tormenting sense of what might have been.
Down syndrome did not alter the trajectory of his life; Jon was Jon
from conception on.
This year Jon will spend his birthday where every year he spends 81
spring, summer and autumn days and evenings, at Nationals Park, in his
seat behind the home team’s dugout. The Phillies will be in town, and
Jon will be wishing them ruination, just another man, beer in hand,
among equals in the republic of baseball."
“Light yourself on fire with passion and people will come from miles to watch you burn.”---John Wesley (1703-1791
From a recent column in the Washington Post, from a noted political columnist, that I think in this case need not make any of us take political sides. Rather, it reminds us of something all of us with Moebius appreciate--the value of all human life, no matter how not "normal" or "worthwhile" some might see that life. Here are some of the best excerpts from the column:
"When Jonathan Frederick Will was born 40 years ago — on May 4, 1972,
his father’s 31st birthday — the life expectancy for people with Down
syndrome was about 20 years. That is understandable.
The day after Jon was born, a doctor told Jon’s parents that the first
question for them was whether they intended to take Jon home from the
hospital. Nonplussed, they said they thought that is what parents do
with newborns. Not doing so was, however, still considered an
acceptable choice for parents who might prefer to institutionalize or
put up for adoption children thought to have necessarily bleak
futures. Whether warehoused or just allowed to languish from lack of
stimulation and attention, people with Down syndrome, not given early
and continuing interventions, were generally thought to be incapable
of living well, and hence usually did not live as long as they could
have.
Down syndrome is a congenital condition resulting from a chromosomal
defect — an extra 21st chromosome. It causes varying degrees of mental
retardation and some physical abnormalities, including small stature,
a single crease across the center of the palms, flatness of the back
of the head, a configuration of the tongue that impedes articulation,
and a slight upward slant of the eyes. In 1972, people with Down
syndrome were still commonly called Mongoloids.
Now they are called American citizens, about 400,000 of them, and
their life expectancy is 60. Much has improved. There has, however,
been moral regression as well....So today science enables what the ethos ratifies, the
choice of killing children with Down syndrome before birth. That is
what happens to 90 percent of those whose parents receive a Down
syndrome diagnosis through prenatal testing.
Which is unfortunate, and not just for them. Judging by Jon, the world
would be improved by more people with Down syndrome, who are quite
nice, as humans go. It is said we are all born brave, trusting and
greedy, and remain greedy. People with Down syndrome must remain brave
in order to navigate society’s complexities. They have no choice but
to be trusting because, with limited understanding, and limited
abilities to communicate misunderstanding, they, like Blanche DuBois
in “A Streetcar Named Desire,” always depend on the kindness of
strangers. Judging by Jon’s experience, they almost always receive it.
Two things that have enhanced Jon’s life are the Washington subway
system, which opened in 1976, and the Washington Nationals baseball
team, which arrived in 2005. He navigates the subway expertly, riding
it to the Nationals ballpark, where he enters the clubhouse a few
hours before game time and does a chore or two. The players, who have
climbed to the pinnacle of a steep athletic pyramid, know that
although hard work got them there, they have extraordinary aptitudes
because they are winners of life’s lottery. Major leaguers, all of
whom understand what it is to be gifted, have been uniformly and
extraordinarily welcoming to Jon, who is not.
Except he is, in a way. He has the gift of serenity, in this sense:
The eldest of four siblings, he has seen two brothers and a sister
surpass him in size, and acquire cars and college educations. He,
however, with an underdeveloped entitlement mentality, has been
equable about life’s sometimes careless allocation of equity. Perhaps
this is partly because, given the nature of Down syndrome, neither he
nor his parents have any tormenting sense of what might have been.
Down syndrome did not alter the trajectory of his life; Jon was Jon
from conception on.
This year Jon will spend his birthday where every year he spends 81
spring, summer and autumn days and evenings, at Nationals Park, in his
seat behind the home team’s dugout. The Phillies will be in town, and
Jon will be wishing them ruination, just another man, beer in hand,
among equals in the republic of baseball."
“Light yourself on fire with passion and people will come from miles to watch you burn.”---John Wesley (1703-1791
Friday, May 4, 2012
SOME ODDS AND ENDS FROM HERE AND THERE
For example--are you a stressed-out Moebius mom/dad? You're not alone; here are some tips:
"I adore my four little (but lively) children, but they stress me out. How can I better handle the stress of raising children, along with everything else that I have to do?
This is a very common concern among parents. You need to find ways to relax and reduce your anxiety, whether it’s having a glass of wine (but not 3 or 4!), going to the gym, talking to a friend or meditating. Take time to remind yourself of the purpose of what you are doing, says Belsky. There is nothing more important than taking care of your children.
There are also ways to make life with children less stressful. For example, institute a quiet time during some part of the day, when each family member goes someplace and does an activity by him or herself, like reading or listening to music.
Learn how to set good boundaries, suggests Orloff. Set aside time alone to replenish because you cannot keep going non-stop. Mini-breaks can do wonders.
Sinha recommends seeking family and social support, when possible. This also benefits children, who love to interact with and hear stories from other family members, like grandparents. Sinha also emphasizes the importance of taking breaks."
Meanwhile, the need to continue to build awareness is made clear day after day--for example, today in Canada we see disabled parents having to fight to keep their newborn child, even though it seems clear they are able to care for him:
"A disabled couple in Mississauga are fighting to keep their newborn son after social workers threatened to take the boy away unless he receives round-the-clock care from an “able-bodied attendant.”
Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.
However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.
The boy’s mother told CBC that she and her partner do not want to lose their son.
"We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. "We both wanted to be parents and now we are, and we don't want do give anyone control of our family."
So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William's birth.
Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.
“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.
However, he said, it is possible matters will become more challenging as William grows, but that doesn’t mean she won’t be able to look after her son."
And--once again today, Moebius Syndrome is in the news; read about little Kevin Nievesmassol, who has Moebius, and how some of his wishes:
"The excitement shown on 5-year-old Kevin Nievesmassol's face and that of his 3-year-old brother, Connor, told the whole story.
Together they enjoyed the new playground, which included a swing set and playhouse, in the backyard at his home near this mountain community, courtesy of the Kids Wish Network.
Little Kevin, who was born with Moebius Syndrome, a rare congenital disorder that makes it difficult for the facial muscles to move, was chosen as a "Wish Kid" and given a choice of gifts from the network.
Kevin has low muscle tone and is unable to speak or walk, so he made his choice from a picture book, opting for the playground equipment over such options as a trip to the beach, a cruise or even a hot tub.
“It is hard to explain," his father, Carlos Nievesmassol, said of his son's selection. "He chose this swing set but can’t walk yet, so it’s something that will be there for life for him.”
Once Kevin made his choice, Kids Wish, which is based in Florida, used several resources in Colorado to carry out the project.
Backyard Adventures Colorado donated the entire playground, which is complete with the playhouse, swing set and monkey bars.
Members of American Legion Young Guns, Post 115 in Rye, volunteered to install the equipment.
Scott Sexton, commander of Post 115, rallied troops and brought along George McGoff, post adjutant, Jerry McClure, senior vice-commander and members Ron Rybicki, and Mike Davis to help out.
“Kevin has had a rough life, but hopefully we brought great joy to him today,” said Sexton, who emphasized that helping youth is one of the four pillars of the American Legion values.
McGoff said, “It was a day well spent. Our post has never done anything like this, so when we got here, it was nice to see Kevin and Connor so excited.”
“Kevin has known it is a special day for him, and we love to see him happy," the youngster's parents, Kacie and Carlos Nievesmassol, said of their son who requires occupational, speech and physical therapy."
“Nothing contributes so much to tranquilize the mind as a steady purpose- a point on which the soul may fix its intellectual eye.”--Mary Shelley (1797-1851)
For example--are you a stressed-out Moebius mom/dad? You're not alone; here are some tips:
"I adore my four little (but lively) children, but they stress me out. How can I better handle the stress of raising children, along with everything else that I have to do?
This is a very common concern among parents. You need to find ways to relax and reduce your anxiety, whether it’s having a glass of wine (but not 3 or 4!), going to the gym, talking to a friend or meditating. Take time to remind yourself of the purpose of what you are doing, says Belsky. There is nothing more important than taking care of your children.
There are also ways to make life with children less stressful. For example, institute a quiet time during some part of the day, when each family member goes someplace and does an activity by him or herself, like reading or listening to music.
Learn how to set good boundaries, suggests Orloff. Set aside time alone to replenish because you cannot keep going non-stop. Mini-breaks can do wonders.
Sinha recommends seeking family and social support, when possible. This also benefits children, who love to interact with and hear stories from other family members, like grandparents. Sinha also emphasizes the importance of taking breaks."
Meanwhile, the need to continue to build awareness is made clear day after day--for example, today in Canada we see disabled parents having to fight to keep their newborn child, even though it seems clear they are able to care for him:
"A disabled couple in Mississauga are fighting to keep their newborn son after social workers threatened to take the boy away unless he receives round-the-clock care from an “able-bodied attendant.”
Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.
However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.
The boy’s mother told CBC that she and her partner do not want to lose their son.
"We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. "We both wanted to be parents and now we are, and we don't want do give anyone control of our family."
So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William's birth.
Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.
“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.
However, he said, it is possible matters will become more challenging as William grows, but that doesn’t mean she won’t be able to look after her son."
And--once again today, Moebius Syndrome is in the news; read about little Kevin Nievesmassol, who has Moebius, and how some of his wishes:
"The excitement shown on 5-year-old Kevin Nievesmassol's face and that of his 3-year-old brother, Connor, told the whole story.
Together they enjoyed the new playground, which included a swing set and playhouse, in the backyard at his home near this mountain community, courtesy of the Kids Wish Network.
Little Kevin, who was born with Moebius Syndrome, a rare congenital disorder that makes it difficult for the facial muscles to move, was chosen as a "Wish Kid" and given a choice of gifts from the network.
Kevin has low muscle tone and is unable to speak or walk, so he made his choice from a picture book, opting for the playground equipment over such options as a trip to the beach, a cruise or even a hot tub.
“It is hard to explain," his father, Carlos Nievesmassol, said of his son's selection. "He chose this swing set but can’t walk yet, so it’s something that will be there for life for him.”
Once Kevin made his choice, Kids Wish, which is based in Florida, used several resources in Colorado to carry out the project.
Backyard Adventures Colorado donated the entire playground, which is complete with the playhouse, swing set and monkey bars.
Members of American Legion Young Guns, Post 115 in Rye, volunteered to install the equipment.
Scott Sexton, commander of Post 115, rallied troops and brought along George McGoff, post adjutant, Jerry McClure, senior vice-commander and members Ron Rybicki, and Mike Davis to help out.
“Kevin has had a rough life, but hopefully we brought great joy to him today,” said Sexton, who emphasized that helping youth is one of the four pillars of the American Legion values.
McGoff said, “It was a day well spent. Our post has never done anything like this, so when we got here, it was nice to see Kevin and Connor so excited.”
“Kevin has known it is a special day for him, and we love to see him happy," the youngster's parents, Kacie and Carlos Nievesmassol, said of their son who requires occupational, speech and physical therapy."
“Nothing contributes so much to tranquilize the mind as a steady purpose- a point on which the soul may fix its intellectual eye.”--Mary Shelley (1797-1851)
Thursday, May 3, 2012
TOP REASONS TO ATTEND THE MOEBIUS SYNDROME CONFERENCE THIS SUMMER
1. It will be hosted at a cool hotel in downtown Philadelphia, so you'll get to see all the cool historical and cultural sites there.
2. Those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
3. You moms and dads who have children with Moebius will get to pick the brains of other moms and dads in the same situation as you. It can help you make your child's life better.
4. Conference sessions led by knowledgeable medical professionals will address medical issues related to Moebius.
5. You'll have a chance to buy Moebius T-shirts and other cool souvenirs.
6. You'll get to hear Roland Bienvenu's latest Cajun jokes (if he has any). :+)
7. There's a great Saturday night dinner. Plua a talent show!
8. There will be conference sessions designed just for moms and dads of children who have Moebius.
9. There will be conference sessions designed just for adults who have Moebius.
10. Those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
11. There will be child care for those of you with young children.
12. There will be activities designed for Moebius teens.
13. You might get to find out why Roland Bienvenu calls Leslie Dhaseleer "Shortcake."
14. Come to think of it, you might get to find out all of the other nicknames Roland has come up with. But beware of the character named "RoPaul." :+)
15. You'll get a big hug from Vick McCarrell.
16. You might get to meet famous people who've been on TV--like Chelsey Thomas.
17. The Sheraton hotel in downtown Philly is really nice; there are still rooms available at the conference rate.
18. You'll hear a keynote speaker named Rick Guidotti, and you'll get to find out why he is so important to movements like ours.
19. Those of you with children who have Moebius can sign up for medical consults.
20. Have I mentioned this? Those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
21. You don't have to worry about the weather; it's pretty much guaranteed to be warm in Philadelphia in July.
22. Maybe Kathleen Bogart will share with us more of her yummy food recipes.
23. You'll meet people connected to Moebius from different countries--from Israel, Great Britain, South America, etc. And of course don't forget our strong Canadian contingent.
24. Speaking of our Canadian friends, maybe Kelsey Ferrill will explain to us what happened to her Ducks this year. :+)
25. You might get to meet Lisa Smant, and Ethan, and Sophie--the only children we know of born to two parents both of whom have Moebius (and of course neither Ethan or Sophie have Moebius themselves!)
26. And remember--those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
27. You can finally make contact with all the folks on Facebook whom you've friended because they too have something to do with Moebius, but whom you've never actually met in person.
28. Why do people with Moebius Syndrome have a great advantage when it comes to playing poker? Find out!!!
29. Why can the attempt to take the group picture of those with Moebius, on the last day of the conference, truly be compared to pur chaos? Find out!!!
30. Because if you attend, you'll never forget it. See you in Philly...
1. It will be hosted at a cool hotel in downtown Philadelphia, so you'll get to see all the cool historical and cultural sites there.
2. Those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
3. You moms and dads who have children with Moebius will get to pick the brains of other moms and dads in the same situation as you. It can help you make your child's life better.
4. Conference sessions led by knowledgeable medical professionals will address medical issues related to Moebius.
5. You'll have a chance to buy Moebius T-shirts and other cool souvenirs.
6. You'll get to hear Roland Bienvenu's latest Cajun jokes (if he has any). :+)
7. There's a great Saturday night dinner. Plua a talent show!
8. There will be conference sessions designed just for moms and dads of children who have Moebius.
9. There will be conference sessions designed just for adults who have Moebius.
10. Those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
11. There will be child care for those of you with young children.
12. There will be activities designed for Moebius teens.
13. You might get to find out why Roland Bienvenu calls Leslie Dhaseleer "Shortcake."
14. Come to think of it, you might get to find out all of the other nicknames Roland has come up with. But beware of the character named "RoPaul." :+)
15. You'll get a big hug from Vick McCarrell.
16. You might get to meet famous people who've been on TV--like Chelsey Thomas.
17. The Sheraton hotel in downtown Philly is really nice; there are still rooms available at the conference rate.
18. You'll hear a keynote speaker named Rick Guidotti, and you'll get to find out why he is so important to movements like ours.
19. Those of you with children who have Moebius can sign up for medical consults.
20. Have I mentioned this? Those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
21. You don't have to worry about the weather; it's pretty much guaranteed to be warm in Philadelphia in July.
22. Maybe Kathleen Bogart will share with us more of her yummy food recipes.
23. You'll meet people connected to Moebius from different countries--from Israel, Great Britain, South America, etc. And of course don't forget our strong Canadian contingent.
24. Speaking of our Canadian friends, maybe Kelsey Ferrill will explain to us what happened to her Ducks this year. :+)
25. You might get to meet Lisa Smant, and Ethan, and Sophie--the only children we know of born to two parents both of whom have Moebius (and of course neither Ethan or Sophie have Moebius themselves!)
26. And remember--those of you with Moebius will get to meet and exchange ideas and experiences with others who have Moebius. It will change your life.
27. You can finally make contact with all the folks on Facebook whom you've friended because they too have something to do with Moebius, but whom you've never actually met in person.
28. Why do people with Moebius Syndrome have a great advantage when it comes to playing poker? Find out!!!
29. Why can the attempt to take the group picture of those with Moebius, on the last day of the conference, truly be compared to pur chaos? Find out!!!
30. Because if you attend, you'll never forget it. See you in Philly...
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