Last week's record: 10-3. Woot!
Record for the year: 69-44.
Here we go!
COLLEGE PICKS
Clemson at N.C. State. My pick: TIGERS. Many people are waiting for undefeated Clemson to fall. I don't think they will here; they have what you need: speed!
Notre Dame at Temple. My pick: FIGHTING IRISH. Temple is a great story; they have done a great to be undefeated still. But--ND will have too many athletes.
NFL PICKS
Detroit vs Kansas City (in London). My pick: CHIEFS 24-14. The Lions' biggest problem: their offensive line is a mess. It's not fixed yet...
Tampa Bay at Atlanta. My pick: FALCONS 28-14. Atlanta has struggled a bit lately. Here's a chance to get back on track at home; I think they will.
Arizona at Cleveland. My pick: CARDINALS 26-17. The only reason to hesitate on this one: sometimes AZ struggles when they have to come east. But--the Browns have QB issues, and I think the Cardinals' talent will win out.
San Francisco at St. Louis. My pick: RAMS 26-13. The Niners have struggled horribly in so many ways both at home and on the road. The Rams played solid last week; there's no reason to think they won't again.
NY Giants at New Orleans. My pick: SAINTS 27-24. The Saints seem to have righted themselves a bit, and Drew Brees is playing well. I look for the Saints to keep their momentum at home.
Minnesota at Chicago. My pick: VIKINGS 20-17. This is a tough one. The Bears are rested and at home. But--I predict a long Adrian Peterson run will make the difference in a close game.
San Diego at Baltimore. My pick: RAVENS 27-20. Hmmm. Two teams expected to be better than they are meet in a "two teams in trouble" battle. Hard to pick! My guess: Joe Flacco and the Ravens finally find a way to win one; and, given the Chargers' off-field turmoil (will they move? etc) I get the feeling the Bolts are not in a good place mentally.
Cincinnati at Pittsburgh. My pick: BENGALS 28-26. Again, hard to pick; two tough teams...in Pittsburgh...Big Ben to be back. My gut though says take Cincy--Big Ben might be rusty; meanwhile the Bengals are rested and all their big guns appear to be healthy.
Tennessee at Houston. My pick: TEXANS 24-14. Both teams with big problems. The key--Houston has Brian Hoyer and he is serviceable, and at home. Meanwhile, Marcus Mariota is banged up.
NY Jets at Oakland. My pick: RAIDERS 17-13. The Jets are an improved team. But--they are coming off a tough divisional loss to the Patriots on the road. Now they have to go cross-country; and play an improved Raiders team. Tough. Look for Oakland to keep their momentum.
Seattle at Dallas. My pick: SEAHAWKS 23-14. Why? Because...the Cowboys still don't have Tony Romo. And they will continue to miss him until he comes back; he makes that much of a difference.
Green Bay at Denver. My pick: PACKERS 27-21. Two good teams; but...the Broncos' offense still isn't where it needs to be yet; and the Pack...well, they have Aaron Rodgers.
Indianapolis at Carolina. My pick: PANTHERS. Time to take this Carolina team seriously. Meanwhile...the Colts appear to be in kind of a mess.
Saturday, October 31, 2015
Wednesday, October 28, 2015
BE EMPOWERED. TAKE A SELFIE.
Huh? But I think it's true, and the opinion piece below explains it well...and even though the below isn't talking about Moebius Syndrome (it is referring more to reasons of gender and culture) still I think it applies to us. The author below says it is good that her daughter has the freedom to take a selfie; in some countries and in some cultures, women don't have that freedom. But her daughter does. She has choices. It's something to celebrate.
I think there's a similar point to make for those of us with Moebius. Yes, take a selfie--because you have the freedom to do so; and because you are beautiful, you are handsome, you smile with your heart and with your whole being, and that should be preserved! So be empowered. Know you're beautiful; take a selfie! Read on--the opinion piece below is an interesting one:
**********************
My 9-year-old daughter pauses in the middle of our walk together and asks for my iPhone. Then she requests I take a selfie with her.
I start to dismiss her question and turn it into a teaching lesson, as I usually do, encouraging her to pay attention to her surroundings while pointing the iPhone toward the cerulean sky, blazing sunset or a pink bougainvillea. But before I finish my sentence, she places the phone in front of our faces and snaps the picture, her full smile and my cautious half-grin spreading across the screen. I scold her for disobeying my wishes, hoping my words will outweigh her enthusiasm the next time she sinks into a self-indulgent moment.
The selfie movement is controversial and I will admit: it makes me uncomfortable. Celebrities tend to promote it, with books, Instagram pics and of course, the famous line “Do You Wanna Take a Selfie?” which birthed the eponymous song “#Selfie.” Other people discourage the narcissistic concept of an image uploaded to Facebook or Twitter with a rapt audience liking the posted picture. I tend to fall in the latter category and have discouraged my daughter from engaging in this practice.
But a few months ago my Facebook feed broadcasted Prime Minister of India Narendra Modi’s appeal to parents to post selfies with their daughters to combat the inequality between Indian girls and boys and to elevate the relevance of women in a culture which tends to discount the value of a female. This call to action is an important one for Indian women, daughters and mothers across the world who suffer a multitude of injustices from gang rapes and domestic violence to a higher rate of abortions of girls.
Before Modi’s proclamation, I never contemplated the power of a random selfie in my parenting and cultural experience. Afterward, I reflected on a singular belief: geography is destiny and it impacts my experiences as a daughter and as a mother.
My father, with $7 in his pocket, made the choice to migrate to the United States almost 50 years ago from a small village in India. Two years later my mother joined him. On a September morning in 1973, I was born in a hospital in Texas. My birthplace automatically guaranteed opportunities I most likely wouldn’t have had if I’d been born in a village in India.
As my parents tried to assimilate into the American culture, they emphasized the importance of education and pursuit of confidence-building activities, imploring me to interact with the world and engage with people inside and outside of my culture.
I tried out for the tennis team, took piano lessons and hung out at the mall with my friends – all very American experiences. As a Texas teen, I didn’t grasp my immigrant parents’ shaky leap into the melting pot. As a teen and woman, my identity as a girl never resonated as an obstacle. After college, I attended law school; my parents never squashed my pursuit of a career deemed as something traditionally for males, or not appropriate for a woman of Indian descent. The idea of limitations because of my sex and culture rarely entered our discussions.
The same pulse will thrum in my daughter’s childhood and foray into adulthood. She is born to second-generation Indian parents in the United States whose upbringing is entirely American. So it is unlikely she will feel the stigma young girls face in India.
When I reevaluated my daughter’s need to take a selfie under this lens, my opinion of her act altered from thinking it was self-indulgent to realizing it was empowering. While Modi requested parents to take selfies with their children to make a political statement, my daughter took the initiative to take a snapshot of both of us without giving it any thought, because this is simply part of her cultural context.
My daughter’s selfie reflects a narrative distinct from her counterpart living in a small city in the middle of India. For my daughter, the selfie isn’t a beginning, but a way of life. She is inundated with choices, from choosing the clothes she wants to wear to deciding whether she wants to play with Legos or color her nails bright blue.
As for the other girl with a different geography, her parents may not own a smartphone or perhaps she stays at home to take care of her younger siblings and as a result isn’t allowed an education. Her upbringing is shaded by the need to care for the communal, whereas my daughter’s experience is more about furthering her individual ambitions.
So the next time my daughter asks me to be in the picture with her, I will participate with a newfound enthusiasm. I’ve shifted my perspective, because I realize a selfie is no longer just a selfie.
I’ve learned it forever represents freedom, for me, and for my daughter, too.
Rudri Bhatt Patel is an attorney turned writer and editor. She writes her personal musings on her blog, Being Rudri. She is working on a memoir which explores Hindu culture, grief and appreciating life’s ordinary graces. Connect with her on Twitter or Facebook.
*********************************
I think there's a similar point to make for those of us with Moebius. Yes, take a selfie--because you have the freedom to do so; and because you are beautiful, you are handsome, you smile with your heart and with your whole being, and that should be preserved! So be empowered. Know you're beautiful; take a selfie! Read on--the opinion piece below is an interesting one:
**********************
My 9-year-old daughter pauses in the middle of our walk together and asks for my iPhone. Then she requests I take a selfie with her.
I start to dismiss her question and turn it into a teaching lesson, as I usually do, encouraging her to pay attention to her surroundings while pointing the iPhone toward the cerulean sky, blazing sunset or a pink bougainvillea. But before I finish my sentence, she places the phone in front of our faces and snaps the picture, her full smile and my cautious half-grin spreading across the screen. I scold her for disobeying my wishes, hoping my words will outweigh her enthusiasm the next time she sinks into a self-indulgent moment.
The selfie movement is controversial and I will admit: it makes me uncomfortable. Celebrities tend to promote it, with books, Instagram pics and of course, the famous line “Do You Wanna Take a Selfie?” which birthed the eponymous song “#Selfie.” Other people discourage the narcissistic concept of an image uploaded to Facebook or Twitter with a rapt audience liking the posted picture. I tend to fall in the latter category and have discouraged my daughter from engaging in this practice.
But a few months ago my Facebook feed broadcasted Prime Minister of India Narendra Modi’s appeal to parents to post selfies with their daughters to combat the inequality between Indian girls and boys and to elevate the relevance of women in a culture which tends to discount the value of a female. This call to action is an important one for Indian women, daughters and mothers across the world who suffer a multitude of injustices from gang rapes and domestic violence to a higher rate of abortions of girls.
Before Modi’s proclamation, I never contemplated the power of a random selfie in my parenting and cultural experience. Afterward, I reflected on a singular belief: geography is destiny and it impacts my experiences as a daughter and as a mother.
My father, with $7 in his pocket, made the choice to migrate to the United States almost 50 years ago from a small village in India. Two years later my mother joined him. On a September morning in 1973, I was born in a hospital in Texas. My birthplace automatically guaranteed opportunities I most likely wouldn’t have had if I’d been born in a village in India.
As my parents tried to assimilate into the American culture, they emphasized the importance of education and pursuit of confidence-building activities, imploring me to interact with the world and engage with people inside and outside of my culture.
I tried out for the tennis team, took piano lessons and hung out at the mall with my friends – all very American experiences. As a Texas teen, I didn’t grasp my immigrant parents’ shaky leap into the melting pot. As a teen and woman, my identity as a girl never resonated as an obstacle. After college, I attended law school; my parents never squashed my pursuit of a career deemed as something traditionally for males, or not appropriate for a woman of Indian descent. The idea of limitations because of my sex and culture rarely entered our discussions.
The same pulse will thrum in my daughter’s childhood and foray into adulthood. She is born to second-generation Indian parents in the United States whose upbringing is entirely American. So it is unlikely she will feel the stigma young girls face in India.
When I reevaluated my daughter’s need to take a selfie under this lens, my opinion of her act altered from thinking it was self-indulgent to realizing it was empowering. While Modi requested parents to take selfies with their children to make a political statement, my daughter took the initiative to take a snapshot of both of us without giving it any thought, because this is simply part of her cultural context.
My daughter’s selfie reflects a narrative distinct from her counterpart living in a small city in the middle of India. For my daughter, the selfie isn’t a beginning, but a way of life. She is inundated with choices, from choosing the clothes she wants to wear to deciding whether she wants to play with Legos or color her nails bright blue.
As for the other girl with a different geography, her parents may not own a smartphone or perhaps she stays at home to take care of her younger siblings and as a result isn’t allowed an education. Her upbringing is shaded by the need to care for the communal, whereas my daughter’s experience is more about furthering her individual ambitions.
So the next time my daughter asks me to be in the picture with her, I will participate with a newfound enthusiasm. I’ve shifted my perspective, because I realize a selfie is no longer just a selfie.
I’ve learned it forever represents freedom, for me, and for my daughter, too.
Rudri Bhatt Patel is an attorney turned writer and editor. She writes her personal musings on her blog, Being Rudri. She is working on a memoir which explores Hindu culture, grief and appreciating life’s ordinary graces. Connect with her on Twitter or Facebook.
*********************************
Monday, October 26, 2015
MOEBIUS SYNDROM IN THE NEWS: CONGRATULATIONS TO THE HAPPY COUPLE!
In case you had not yet seen this: two people got married recently. No big deal, you say; happens all the time. True. But it is not every day that two people get married...and they both have Moebius. Read on:
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Gareth
and Emma, who were born with a very rare condition called Moebius
syndrome, which means they struggle to make facial expressions, blink or
move their eyes laterally. Photograph: Alan Betson
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*******************************
Gareth
and Emma, who were born with a very rare condition called Moebius
syndrome, which means they struggle to make facial expressions, blink or
move their eyes laterally. Photograph: Alan Betson
Before he met Emma, Gareth Roberts’s life in Wales was quite lonely.
Comfortable, he says, but lonely. He struggled to make friends and had
never had a real romantic relationship. He felt most at ease at home
with his parents. When he met people for the first time, Roberts would
ask himself: should I let them know about my condition straight away or
casually drop it into the conversation?
He never imagined that he would meet and fall in love with an Irish woman who, like him, suffered from Moebius syndrome
“If someone had said to me five or six years ago that I’d be here . . .
Not in my wildest dreams did I think I’d actually meet someone to have a
relationship with. What makes this a special relationship is because I
think we appreciate it more, because things have come together in quite a
unique way.”
Within minutes of meeting Roberts and his wife, Emma Donnelly, it
becomes clear that the newlyweds are very happy. After they met in 2009,
Roberts moved to Dublin to be closer to Donnelly. In June 2015, the
couple exchanged vows in Cappoquin, Co Waterford, surrounded by a small group of close friends and family.
The story of how this couple met is far from your average love match.
Moebius syndrome is an extremely rare congenital disorder that means
they are unable to make facial expressions, blink or move their eyes
laterally. About 200 people in the UK and only a handful of Irish people
have the condition.
As a child, Donnelly’s parents treated her exactly like her twin
sister, who doesn’t suffer from the condition. The family only
discovered she had Moebius syndrome when she was 12, even though Emma
later discovered through her medical record that doctors were aware of
her condition at birth.
Roberts, an only child, was brought up in the town of Wrexham, north
Wales, by loving parents who did “their absolute best” to give their son
a happy childhood.
“I have found it hard for most of my life to make friends. I’m not one
that would pin all that on my condition, but I think people do take for
granted facial expressions, and that’s understandable because it’s like
breathing: something so natural.
“When you’re talking to someone, you expect to see certain facial
expressions, and when you don’t see those indicators – like a frown, or a
grimace or whatever – then it’s hard for that person to relate to the
other person. I’m not saying that barrier is insurmountable but it’s
definitely a hard barrier for people to overcome.”
Met on the internet
The couple first made contact in 2008 through an internet forum set up by the Moebius Research
Trust. Roberts had only ever met one person with the condition before
and he walked away from that experience feeling a bit “spooked”.
“She had the condition a bit more severe than myself, so I found it
quite a shock to be honest,” he says. Some people with Moebius have
intellectual disabilities while others can suffer from symptoms of
autism, he says. “You know no different and then you see someone else
with the facial paralysis, so to speak, and it’s a bit unnerving.”
After chatting online with Donnelly for a few months, he arranged to
travel to Dublin to meet her. She spent a few days showing him around
the city. She was surprised when he called a few weeks later to say he
would like to visit again. Like Roberts, she had never been in a
relationship before.
“Because I’d had no experience of relationships, I didn’t really know
what I was feeling, emotions-wise,” says Roberts. “Was I having an
attraction because Emma had the same condition as me, or was it because
Emma was a friend?”
After his second trip, he wrote her a letter spelling out his true
feelings for her. By September 2009 the couple were “in a relationship”,
and in early 2010 he decided to move to Dublin after a job opened up
for a fraud analyst in a gaming company.
“I had no real commitments and was still living with my parents. My job
in the UK was quite secure, but if our relationship was to progress, at
some point someone was going to have to move.”
The couple were nervous about taking such a big step relatively early
on in the relationship. “Because it was my first relationship, was I
taking too big a step? But on the other hand, was this opportunity ever
going to come around again?”
“The phone bills were getting very high,” says Donnelly. “We got
together not because of our condition but because we fell in love with
each other.”
Roberts had expected Ireland
to be quite similar to his home in the UK. “Because we speak the same
language, there would be a lot of British shops and British TV, so from
my perspective there are a lot of home comforts. But there is a
definitely a difference. I know it’s a cliche but the people here are so
friendly and generous.”
Definitely Irish
Now that he has married to an Irish woman, Roberts says he considers Ireland his home.
“Last year on budget day, I was waiting for a bus on Kildare Street and
this guy with a microphone comes up to us. I ended up on the BBC World
Service talking about the Irish budget, so I thought, I’m definitely
Irish now.”
Roberts is fascinated by Irish history and has taken the time to read
about the Easter rising ahead of the 2016 centenary celebrations. “The
history of Ireland, growing up in the UK, the only thing you’d hear
about in the news would be Northern Ireland and the Troubles. I’ve
really enjoyed learning about the whole history of Ireland.”
Roberts and Donnelly are now eager to create a greater awareness of
Moebius Syndrome. “We want to give hope to the parents of children who
have recently been diagnosed with Moebius, that your children can have a
happy and fulfilling life.”
*******************************
Friday, October 23, 2015
FRIDAY FOOTBALL PICKS
It is that time again!
Last week's record: 10-6.
For the year I am: 59-41.
NFL PICKS
Buffalo at Jacksonville. My pick: JAGUARS 24-17. The Jags are probably due; and...more importantly...the Bills have a ton of injuries.
Tampa Bay at Washington. My pick: REDSKINS 24-14. I don't really think either team is very good; but the Skins at home, with that running attack, with Jameis Winston's penchant for making mistakes, should prevail.
Atlanta at Tennessee. My pick: FALCONS 31-14. Atlanta has had 10 days to stew over its first loss. The Titans, reeling a bit anyway, will be the ones to suffer for it.
New Orleans at Indianapolis. My pick: COLTS 31-24. Indy lost last week to the Pats, partly thanks to that crazy punt call; but they played the Pats tough and seem to be improving.
Minnesota at Detroit. My pick: LIONS 24-23. Maybe the Lions have a tiny bit of momentum now; what really helps them is that they've realized they've got to get the ball deep to Calvin Johnson.
Pittsburgh at Kansas City. My pick: CHIEFS 20-13. Mainly because I don't believe the Chiefs are as bad as their record; and...if Landry Jones really has to play the whole game for the Steelers, he will have a tough time.
Cleveland at St. Louis. My pick: RAMS 26-13. Both teams are kind of Jekyll and Hyde. My prediction: the good Rams show up, with a tough defense.
Houston at Miami. My pick: DOLPHINS 23-13. The Dolphins have some momentum; look for the Dolphins' front to pressure Brian Hoyer a great deal.
NY Jets at New England. My pick: PATRIOTS 28-10. The Jets have a good defense, but...its nothing Brady hasn't seen before.
Oakland at San Diego. My pick: CHARGERS 24-21. The Chargers lost vs Green Bay but played respectably; this time they'll get the win.
Dallas at NY Giants. My pick: GIANTS 21-14. I'm just not convinced that Matt Cassel is the savior; meanwhile, no way Eli Manning plays as poorly in this game as he did Monday night.
Philadelphia at Carolina. My pick: PANTHERS 30-27. Its surprising that Carolina remains undefeated, but...look for the party to continue at least one more week. I still don't think the Philly offense is in sync.
Baltimore at Arizona. My pick: CARDINALS 31-21. That Ravens' secondary is a mess; look for the Cardinals to exploit it big-time.
Last week's record: 10-6.
For the year I am: 59-41.
NFL PICKS
Buffalo at Jacksonville. My pick: JAGUARS 24-17. The Jags are probably due; and...more importantly...the Bills have a ton of injuries.
Tampa Bay at Washington. My pick: REDSKINS 24-14. I don't really think either team is very good; but the Skins at home, with that running attack, with Jameis Winston's penchant for making mistakes, should prevail.
Atlanta at Tennessee. My pick: FALCONS 31-14. Atlanta has had 10 days to stew over its first loss. The Titans, reeling a bit anyway, will be the ones to suffer for it.
New Orleans at Indianapolis. My pick: COLTS 31-24. Indy lost last week to the Pats, partly thanks to that crazy punt call; but they played the Pats tough and seem to be improving.
Minnesota at Detroit. My pick: LIONS 24-23. Maybe the Lions have a tiny bit of momentum now; what really helps them is that they've realized they've got to get the ball deep to Calvin Johnson.
Pittsburgh at Kansas City. My pick: CHIEFS 20-13. Mainly because I don't believe the Chiefs are as bad as their record; and...if Landry Jones really has to play the whole game for the Steelers, he will have a tough time.
Cleveland at St. Louis. My pick: RAMS 26-13. Both teams are kind of Jekyll and Hyde. My prediction: the good Rams show up, with a tough defense.
Houston at Miami. My pick: DOLPHINS 23-13. The Dolphins have some momentum; look for the Dolphins' front to pressure Brian Hoyer a great deal.
NY Jets at New England. My pick: PATRIOTS 28-10. The Jets have a good defense, but...its nothing Brady hasn't seen before.
Oakland at San Diego. My pick: CHARGERS 24-21. The Chargers lost vs Green Bay but played respectably; this time they'll get the win.
Dallas at NY Giants. My pick: GIANTS 21-14. I'm just not convinced that Matt Cassel is the savior; meanwhile, no way Eli Manning plays as poorly in this game as he did Monday night.
Philadelphia at Carolina. My pick: PANTHERS 30-27. Its surprising that Carolina remains undefeated, but...look for the party to continue at least one more week. I still don't think the Philly offense is in sync.
Baltimore at Arizona. My pick: CARDINALS 31-21. That Ravens' secondary is a mess; look for the Cardinals to exploit it big-time.
Wednesday, October 21, 2015
MOEBIUS SYNDROME IN THE NEWS: UK EDITION
You may have seen this already. But just in case you have not--read up on the story of young Moebius hero Isaac Hughes:
*********************************
Joker Isaac Hughes loves to tease and make fun of his pals – even though he was born with a condition that means he can’t smile.
The eight-year-old was diagnosed with rare Moebius Syndrome after leaving doctors baffled for the first months of his life. It affects just 200 people in the UK.
“Isaac couldn’t feed properly and there were a few bits and bobs that indicated something was not right,” mum-of-two Ceridwen, from Mold, said.
Doctors initially thought Isaac – which means ‘he will laugh’ in Hebrew – might just be unusual.
“They did genetic testing but that only picks up certain conditions,” photographer Ceridwen said.
“Moebius is incredibly rare so there is no genetic test for it at the moment.
“Because it is so rare most doctors have not seen it before.
“What happens is that they have eye problems, because they cannot move their eyes left or right.
“Isaac also had a really severe squint.”
At six months Ceridwen and Isaac’s dad, Philip, found out what was wrong.
“Like any parents we wanted to know what to do for the best.
“We did research into it and we telephoned around and spoke to different consultants to see if they had seen anyone with this condition.
“Luckily I spoke to one of the consultants at Alder Hey, in Liverpool, who said he was happy to speak to us.”
Isaac had low muscle tone when he was born.
“He could not crawl until he was one, one-and-a-half, and he did not walk until he was two-and-a-half, three,” Ceridwen said.
“Then he used a walking aid. He was walking independently by about four.”
The youngster also has verbal dyspraxia.
“Because of that he could not speak well,” Ceridwen said.
“He could say very little before he was about six-and-a-half. He can speak much better now but not necessarily always very clearly.
“But he is clever at being able to communicate.”
He likes to make fun.
“He teases people and makes jokes,” Ceridwen said.
“I don’t know how he does it. Because if you have a face mask on how on how do you communicate?
“He has got a really good sense of humour. He likes the same things most boys do.
“Even though he could not talk he could tell a story. He is just really good at using the tools that he has. He might mime or use sign. He could probably draw a picture. He is incredible tenacious.”
Sometimes people feign understanding what Isaac has said.
“One of the most important things with Moebius, or anything, is that is that you do not pretend that you know what someone means when you don’t have a clue,” his mum said.
“Give him a chance to make it clear. He is an intelligent boy and will know if you do not understand.”
Ceridwen was worried people could not get past Isaac’s problems to see how bright he is.
“People make judgements because he looks different and could not speak,” she said.
“People perhaps make an assumption that he perhaps has a learning disability, which he doesn’t.
“It is difficult when you think people are judging people on the way you look.”
So the 46-year-old set up not-for-profit organisation Same But Different to encourage people to see beyond looks.
“I set up Same But Different in May this year after having spoken to a few families with rare conditions,” she said.
Ceridwen embarked on a project to take photographs of youngsters with disabilities.
“There are a lot of preconceived ideas and people do not necessarily want to ask, ‘What is wrong with your child?’ she said.
“We wanted to break down barriers and give people a way of finding out about conditions.”
Ceridwen took images of children including Isabel Gardner, who has encephalitis, and Matthew Hogg, who has Crouzon Syndrome.
Encephalitis is an inflammation of the brain while Crouzon Syndrome causes a child’s skull and facial bones to fuse early in development.
“They show the real person and hopefully the beauty within,” Ceridwen said.
“We are using those images to hold exhibitions and put them in different places like hairdressers and restaurants and cafes.
“There is a back story with each image, a small amount of information to find out about the person and not just the condition.”
Isaac’s condition is not terminal but Moebius Syndrome can lead to other complications.
“When you are first given a diagnosis about something all of your ideas and thoughts about how life is going to pan out change,” Ceridwen said.
“In a way you almost mourn the person you thought your child was going to be.
“But as time goes by you realise that while life is not as you expected it to be it brings you a lot of joy for the small things.”
*To find out more about Same But Different visit www.samebutdifferentcic.org.uk or email Ceridwen directly at ceri@samebutdifferentcic.org.uk
**************************
*********************************
Joker Isaac Hughes loves to tease and make fun of his pals – even though he was born with a condition that means he can’t smile.
The eight-year-old was diagnosed with rare Moebius Syndrome after leaving doctors baffled for the first months of his life. It affects just 200 people in the UK.
“Isaac couldn’t feed properly and there were a few bits and bobs that indicated something was not right,” mum-of-two Ceridwen, from Mold, said.
Doctors initially thought Isaac – which means ‘he will laugh’ in Hebrew – might just be unusual.
“They did genetic testing but that only picks up certain conditions,” photographer Ceridwen said.
“Moebius is incredibly rare so there is no genetic test for it at the moment.
“Because it is so rare most doctors have not seen it before.
“What happens is that they have eye problems, because they cannot move their eyes left or right.
“Isaac also had a really severe squint.”
At six months Ceridwen and Isaac’s dad, Philip, found out what was wrong.
“Like any parents we wanted to know what to do for the best.
“We did research into it and we telephoned around and spoke to different consultants to see if they had seen anyone with this condition.
“Luckily I spoke to one of the consultants at Alder Hey, in Liverpool, who said he was happy to speak to us.”
Isaac had low muscle tone when he was born.
“He could not crawl until he was one, one-and-a-half, and he did not walk until he was two-and-a-half, three,” Ceridwen said.
“Then he used a walking aid. He was walking independently by about four.”
The youngster also has verbal dyspraxia.
“Because of that he could not speak well,” Ceridwen said.
“He could say very little before he was about six-and-a-half. He can speak much better now but not necessarily always very clearly.
“But he is clever at being able to communicate.”
He likes to make fun.
“He teases people and makes jokes,” Ceridwen said.
“I don’t know how he does it. Because if you have a face mask on how on how do you communicate?
“He has got a really good sense of humour. He likes the same things most boys do.
“Even though he could not talk he could tell a story. He is just really good at using the tools that he has. He might mime or use sign. He could probably draw a picture. He is incredible tenacious.”
Sometimes people feign understanding what Isaac has said.
“One of the most important things with Moebius, or anything, is that is that you do not pretend that you know what someone means when you don’t have a clue,” his mum said.
“Give him a chance to make it clear. He is an intelligent boy and will know if you do not understand.”
Ceridwen was worried people could not get past Isaac’s problems to see how bright he is.
“People make judgements because he looks different and could not speak,” she said.
“People perhaps make an assumption that he perhaps has a learning disability, which he doesn’t.
“It is difficult when you think people are judging people on the way you look.”
So the 46-year-old set up not-for-profit organisation Same But Different to encourage people to see beyond looks.
“I set up Same But Different in May this year after having spoken to a few families with rare conditions,” she said.
Ceridwen embarked on a project to take photographs of youngsters with disabilities.
“There are a lot of preconceived ideas and people do not necessarily want to ask, ‘What is wrong with your child?’ she said.
“We wanted to break down barriers and give people a way of finding out about conditions.”
Ceridwen took images of children including Isabel Gardner, who has encephalitis, and Matthew Hogg, who has Crouzon Syndrome.
Encephalitis is an inflammation of the brain while Crouzon Syndrome causes a child’s skull and facial bones to fuse early in development.
“They show the real person and hopefully the beauty within,” Ceridwen said.
“We are using those images to hold exhibitions and put them in different places like hairdressers and restaurants and cafes.
“There is a back story with each image, a small amount of information to find out about the person and not just the condition.”
Isaac’s condition is not terminal but Moebius Syndrome can lead to other complications.
“When you are first given a diagnosis about something all of your ideas and thoughts about how life is going to pan out change,” Ceridwen said.
“In a way you almost mourn the person you thought your child was going to be.
“But as time goes by you realise that while life is not as you expected it to be it brings you a lot of joy for the small things.”
*To find out more about Same But Different visit www.samebutdifferentcic.org.uk or email Ceridwen directly at ceri@samebutdifferentcic.org.uk
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Monday, October 19, 2015
AWARENESS WATCH: ENCOURAGING NEWS
Federal employment of those with disabilities hits a new record:
Employment of people with disabilities by the U.S. government is at an all-time high, according to a new federal report.
At the close of fiscal year 2014, Uncle Sam employed more people with disabilities and these individuals represented a larger share of the workforce than at any other time since such record keeping began 34 years ago, the Office of Personnel Management said.
The news comes in an annual report to President Barack Obama issued this month that tracks disability hiring. Overall, the report found that federal offices hired 20,615 people with disabilities in 2014, bringing the total number of workers with disabilities to 247,608.
Of them, 1,424 new hires had targeted disabilities, a category that includes intellectual disabilities, epilepsy, deafness, blindness, paralysis, missing extremities, dwarfism and psychiatric disabilities.
In 2010, Obama issued an executive order pledging to increase hiring of people with disabilities by the federal government — the nation’s largest employer — by 100,000 within five years.
Four years in, the government is “on track” to meet that goal with 72,000 full-time employees with disabilities having been added, according to Beth Cobert, acting director of the Office of Personnel Management.
“We are committed to ensuring that the federal government remains a model employer for people with disabilities. I look forward to achieving that goal and reporting back to you on our results,” Cobert wrote in her report to Obama.
Beyond hiring, Cobert said her office is working with federal agencies to ensure that workers with disabilities are provided training, mentoring and the reasonable accommodations they need.
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Employment of people with disabilities by the U.S. government is at an all-time high, according to a new federal report.
At the close of fiscal year 2014, Uncle Sam employed more people with disabilities and these individuals represented a larger share of the workforce than at any other time since such record keeping began 34 years ago, the Office of Personnel Management said.
The news comes in an annual report to President Barack Obama issued this month that tracks disability hiring. Overall, the report found that federal offices hired 20,615 people with disabilities in 2014, bringing the total number of workers with disabilities to 247,608.
Of them, 1,424 new hires had targeted disabilities, a category that includes intellectual disabilities, epilepsy, deafness, blindness, paralysis, missing extremities, dwarfism and psychiatric disabilities.
In 2010, Obama issued an executive order pledging to increase hiring of people with disabilities by the federal government — the nation’s largest employer — by 100,000 within five years.
Four years in, the government is “on track” to meet that goal with 72,000 full-time employees with disabilities having been added, according to Beth Cobert, acting director of the Office of Personnel Management.
“We are committed to ensuring that the federal government remains a model employer for people with disabilities. I look forward to achieving that goal and reporting back to you on our results,” Cobert wrote in her report to Obama.
Beyond hiring, Cobert said her office is working with federal agencies to ensure that workers with disabilities are provided training, mentoring and the reasonable accommodations they need.
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Friday, October 16, 2015
FRIDAY FOOTBALL PICKS!
Last week, I was 9-7.
My record for the season: 49-35. Got to do better!
NFL PICKS
Washington at NY Jets. My pick: JETS 24-14. That Jets defense is really good. Look for Kirk Cousins to have a rough time.
Arizona at Pittsburgh. My pick: CARDINALS 26-21. Always tough to pick against the Steelers at home. But--Big Ben likely will not play; and the Steelers' offense still struggles under Mike Vick...the two late TDs to win at San Diego should not obscure how ineffective it was for much of the game. And the Cardinals are good.
Kansas City at Minnesota. My pick: VIKINGS 27-17. The Vikings play well at home. And they have Adrian Peterson; the Chief will not have Jamaal Charles.
Cincinnati at Buffalo. My pick: BILLS 21-18. I think Cincy is the better team. BUT--this is a classic trap game for the Bengals. They beat Seattle last week in a big game with a big comeback; but now they have to go on the road against a capable opponent. Mentally, that's tough. And the Bills defense is good enough to help spring the upset.
Chicago at Detroit. My pick: BEARS 24-17. I can't believe the Lions are favored in this game. The Bears have won 2 in a row and feel confident. The Lions are a mess and the atmosphere in Detroit is not just negative, its toxic.
Denver at Cleveland. My pick: BRONCOS 24-20. The Browns are a young, improving team on offense. But historically they have had a hard time putting 2 good games together; and that will be even tougher here against the very good Denver D, plus against Peyton Manning, who knows a thing or two about winning on the road. Plus the Browns have a hard time stopping the run; which is exactly what the Broncos like to do.
Houston at Jacksonville. My pick: TEXANS 20-17. Very hard game to pick; both teams with problems--the Texans at QB, the Jags with limiting the mistakes of their young player. I'm guessing here that J.J. Watt will make a big defensive play that will put Houston over the top in this one.
Miami at Tennessee. My pick: DOLPHINS 24-22. Miami does have some talent; and now they have a new coach, and all of that I suspect will give them a lift.
Carolina at Seattle. My pick: SEAHAWKS 21-10. The Seahawks just have too much talent to continue to struggle; and the Panthers, while an improved team, still have had trouble executing on offense. That can be trouble vs Seattle.
San Diego at Green Bay. My pick: PACKERS 34-21. Some of the Chargers' defensive woes were exploited big-time late in the game vs the Steelers this past Monday night. You don't think Aaron Rodgers will exploit them too? Philip Rivers will try to use the short-passing game to keep the ball away from the Pack, but the Green Bay defense is improved, too.
Baltimore at San Francisco. My pick: RAVENS 31-27. So often this season the Ravens have had late leads; only to have their defense unable to hold it. Joe Flacco has not played poorly. Well, this week look for Flacco to again give his team the lead; and this time they will find a way.
New England at Indianapolis. My pick: PATRIOTS 34-24. I bet Andrew Luck will play; but this Patriot team is very good...and the eye test suggests that they are certainly better than the Colts at this point. Not to mention the fact that Brady will be highly motivated for the game, don't you think?
NY Giants at Philadelphia. My pick: GIANTS 28-27. Just a feeling here, based on 2 things: 1] the Eagles have had a hard time so far putting 2 good games together; and 2] I suspect Eli Manning will use the short passing game, as he did last week, to get his offense moving again.
COLLEGE PICKS
Alabama at Texas A&M. My pick: CRIMSON TIDE. Alabama perhaps is on its way to fixing some of its problems. Bad news for the rest of the SEC. Plus: the Aggies have yet this year to play a team of Bama's caliber. Its hard to make that step up so quickly.
Michigan State at Michigan. My pick: SPARTANS. Man! I love Michigan and I hate to pick against them. But here's what worries me: yes, Michigan is much improved, and its great. But suddenly so many have anointed them as practically Big Ten champs. Yet they have not played a team of MSU's caliber yet, plus now the Spartans can play with a chip on their shoulder claiming to have been disrespected. That can give State a mental edge. State has beaten U-M something like 6 of the past 7 times. They might do so, just barely, again.
Florida at LSU. My pick: TIGERS. Florida is much improved. But--this game is in the Tigers' home bayou, and they have the great running back Fournette. Hold that Tiger...
My record for the season: 49-35. Got to do better!
NFL PICKS
Washington at NY Jets. My pick: JETS 24-14. That Jets defense is really good. Look for Kirk Cousins to have a rough time.
Arizona at Pittsburgh. My pick: CARDINALS 26-21. Always tough to pick against the Steelers at home. But--Big Ben likely will not play; and the Steelers' offense still struggles under Mike Vick...the two late TDs to win at San Diego should not obscure how ineffective it was for much of the game. And the Cardinals are good.
Kansas City at Minnesota. My pick: VIKINGS 27-17. The Vikings play well at home. And they have Adrian Peterson; the Chief will not have Jamaal Charles.
Cincinnati at Buffalo. My pick: BILLS 21-18. I think Cincy is the better team. BUT--this is a classic trap game for the Bengals. They beat Seattle last week in a big game with a big comeback; but now they have to go on the road against a capable opponent. Mentally, that's tough. And the Bills defense is good enough to help spring the upset.
Chicago at Detroit. My pick: BEARS 24-17. I can't believe the Lions are favored in this game. The Bears have won 2 in a row and feel confident. The Lions are a mess and the atmosphere in Detroit is not just negative, its toxic.
Denver at Cleveland. My pick: BRONCOS 24-20. The Browns are a young, improving team on offense. But historically they have had a hard time putting 2 good games together; and that will be even tougher here against the very good Denver D, plus against Peyton Manning, who knows a thing or two about winning on the road. Plus the Browns have a hard time stopping the run; which is exactly what the Broncos like to do.
Houston at Jacksonville. My pick: TEXANS 20-17. Very hard game to pick; both teams with problems--the Texans at QB, the Jags with limiting the mistakes of their young player. I'm guessing here that J.J. Watt will make a big defensive play that will put Houston over the top in this one.
Miami at Tennessee. My pick: DOLPHINS 24-22. Miami does have some talent; and now they have a new coach, and all of that I suspect will give them a lift.
Carolina at Seattle. My pick: SEAHAWKS 21-10. The Seahawks just have too much talent to continue to struggle; and the Panthers, while an improved team, still have had trouble executing on offense. That can be trouble vs Seattle.
San Diego at Green Bay. My pick: PACKERS 34-21. Some of the Chargers' defensive woes were exploited big-time late in the game vs the Steelers this past Monday night. You don't think Aaron Rodgers will exploit them too? Philip Rivers will try to use the short-passing game to keep the ball away from the Pack, but the Green Bay defense is improved, too.
Baltimore at San Francisco. My pick: RAVENS 31-27. So often this season the Ravens have had late leads; only to have their defense unable to hold it. Joe Flacco has not played poorly. Well, this week look for Flacco to again give his team the lead; and this time they will find a way.
New England at Indianapolis. My pick: PATRIOTS 34-24. I bet Andrew Luck will play; but this Patriot team is very good...and the eye test suggests that they are certainly better than the Colts at this point. Not to mention the fact that Brady will be highly motivated for the game, don't you think?
NY Giants at Philadelphia. My pick: GIANTS 28-27. Just a feeling here, based on 2 things: 1] the Eagles have had a hard time so far putting 2 good games together; and 2] I suspect Eli Manning will use the short passing game, as he did last week, to get his offense moving again.
COLLEGE PICKS
Alabama at Texas A&M. My pick: CRIMSON TIDE. Alabama perhaps is on its way to fixing some of its problems. Bad news for the rest of the SEC. Plus: the Aggies have yet this year to play a team of Bama's caliber. Its hard to make that step up so quickly.
Michigan State at Michigan. My pick: SPARTANS. Man! I love Michigan and I hate to pick against them. But here's what worries me: yes, Michigan is much improved, and its great. But suddenly so many have anointed them as practically Big Ten champs. Yet they have not played a team of MSU's caliber yet, plus now the Spartans can play with a chip on their shoulder claiming to have been disrespected. That can give State a mental edge. State has beaten U-M something like 6 of the past 7 times. They might do so, just barely, again.
Florida at LSU. My pick: TIGERS. Florida is much improved. But--this game is in the Tigers' home bayou, and they have the great running back Fournette. Hold that Tiger...
Wednesday, October 14, 2015
FOR MOEBIUS MOMS AND DADS: PARENTING AND CLOCK MANAGEMENT
And who among us hasn't wished for more time to get more things done? But--maybe the key isn't time; maybe the key is managing your energy. Read on:
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About a month or so into our relationship, Phil took the meaningful next step of asking me to meet one of his best friends. They had a kind of friendship that spanned from childhood to adulthood, and came with its own language and shorthand.
Soon, they started talking about clock management. It was a throwback reference to the hours they would spend in front of the NBA as children, watching teams manage the final minutes and seconds of the game. Are you ahead or behind? Do you hold the ball and use the clock to your advantage, slowing the game down, or are you eager to make up points and try to race the clock while time seems to speed up and away? I had not spent my formative years watching the NBA or on a court. The concept of manipulating time in this way was as foreign to me as their secret bromance language with each other.
Now, nearly 10 years later, I think often about that conversation and how acutely aware I am of clock management. This house is my court, and I am working those minutes on the clock every day. Am I ahead or behind? Time is the one thing I just can’t seem to get my arms around.
Time.
My relationship with time has never been as complicated as it is now. The days are short and yet so long. All I want is for everyone to go to bed and then they do, and there is still more to get done. I trip across a box of baby clothes that everyone has outgrown. It makes me long for that time. But I’m too busy packing lunches to spend too much time being nostalgic for what’s already been lost at my feet. I seem to spend my day both trying to stop it and speed it up simultaneously.
But I finally see that I really can’t do anything about any of it. I will never be able to squeeze more minutes out of this day. And in fact, it is this rather singular focus on it – the fastness, the slowness – that is exhausting me. But I can control and renew my energy.
This mind shift is the central argument of an old Harvard Business Review article that I’ve been rereading recently called “Manage Your Energy, Not Your Time.” This quote in particular is the one turning over and over in my head: “The core problem with working longer hours is that time is a finite resource. Energy is a different story.” As the authors describe, “… energy comes from four main wellsprings in human beings: the body, emotions, mind, and spirit.”
I think about what I store on any given day toward my energy stockpile. When Hope was born, I promised myself that I would start every day with a shower and a cup of coffee. I would make sure I had those precious sips or that three minute shower each day. No matter how much I needed to slow the clock or speed it up, I would find this time to give my body and mind the jolt it needed to launch myself into the day.
My emotional and spiritual buckets are trickier and more difficult to wrap my head around. I have a harder time connecting concrete actions to things that renew and nurture messy things like feelings. Also, these are the two that are legitimately always easier for me to de-prioritize. I need to get to the grocery store, change that diaper, do that load of laundry or pick everyone up from school. I’ll prioritize my spirit later.
But what the authors argue is that if you legitimately find ways to prioritize and renew yourself in each area on a daily basis, you will actually be infinitely more productive. They contend that the key to being productive and successful has everything to do with the investments we make toward becoming our most well rested, happiest, healthiest and generally well rounded versions of ourselves, and little or no correlation with how much time we spend or try to spend on our to-dos.
It is a stunning takeaway, this idea that the key to clock management might have little or nothing to do with the clock at all. Perhaps the question was never, “Am I ahead or behind?” but rather, “How am I?”
If I take time to write, it might mean I miss playing Super Mario with my daughter. But if I give myself these 30 minutes now, the next four in the shower and two more with my coffee, what will that investment mean on the whole for the day? Maybe it will mean I have the energy or strength to face as much of the inevitable transactional and task-oriented stuff life throws at me. Or maybe it means I will be happy enough to not care whether or not I get it all done. Either way, it beats the heck out of trying to beat that clock.
So this morning it’s 9:32. My precious cup of coffee is still warm but mostly empty. The baby is taking a morning power nap while the older two indulge in weekend Wii time. Daddy is at the gym and I am alone with my thoughts and laptop. I visualize filling up some of my buckets. The shower is next. I know that by 10 a.m. the baby will be up and the video games will be off and we will all be thrust into the hustle and bustle of our day. I whisper a silent prayer for the opportunity to renew and recharge. I’ve got my coffee, my softest bathrobe, a fresh towel and at least 28 minutes of uninterrupted showering/thinking time coming at me.
And let us say, Amen.
Jennifer Meer is a mother and writer who lives and works in Connecticut. You can find her on twitter @JennMeer and My Jenn-eration.
**********************************
**********************
About a month or so into our relationship, Phil took the meaningful next step of asking me to meet one of his best friends. They had a kind of friendship that spanned from childhood to adulthood, and came with its own language and shorthand.
Soon, they started talking about clock management. It was a throwback reference to the hours they would spend in front of the NBA as children, watching teams manage the final minutes and seconds of the game. Are you ahead or behind? Do you hold the ball and use the clock to your advantage, slowing the game down, or are you eager to make up points and try to race the clock while time seems to speed up and away? I had not spent my formative years watching the NBA or on a court. The concept of manipulating time in this way was as foreign to me as their secret bromance language with each other.
Now, nearly 10 years later, I think often about that conversation and how acutely aware I am of clock management. This house is my court, and I am working those minutes on the clock every day. Am I ahead or behind? Time is the one thing I just can’t seem to get my arms around.
Time.
My relationship with time has never been as complicated as it is now. The days are short and yet so long. All I want is for everyone to go to bed and then they do, and there is still more to get done. I trip across a box of baby clothes that everyone has outgrown. It makes me long for that time. But I’m too busy packing lunches to spend too much time being nostalgic for what’s already been lost at my feet. I seem to spend my day both trying to stop it and speed it up simultaneously.
But I finally see that I really can’t do anything about any of it. I will never be able to squeeze more minutes out of this day. And in fact, it is this rather singular focus on it – the fastness, the slowness – that is exhausting me. But I can control and renew my energy.
This mind shift is the central argument of an old Harvard Business Review article that I’ve been rereading recently called “Manage Your Energy, Not Your Time.” This quote in particular is the one turning over and over in my head: “The core problem with working longer hours is that time is a finite resource. Energy is a different story.” As the authors describe, “… energy comes from four main wellsprings in human beings: the body, emotions, mind, and spirit.”
I think about what I store on any given day toward my energy stockpile. When Hope was born, I promised myself that I would start every day with a shower and a cup of coffee. I would make sure I had those precious sips or that three minute shower each day. No matter how much I needed to slow the clock or speed it up, I would find this time to give my body and mind the jolt it needed to launch myself into the day.
My emotional and spiritual buckets are trickier and more difficult to wrap my head around. I have a harder time connecting concrete actions to things that renew and nurture messy things like feelings. Also, these are the two that are legitimately always easier for me to de-prioritize. I need to get to the grocery store, change that diaper, do that load of laundry or pick everyone up from school. I’ll prioritize my spirit later.
But what the authors argue is that if you legitimately find ways to prioritize and renew yourself in each area on a daily basis, you will actually be infinitely more productive. They contend that the key to being productive and successful has everything to do with the investments we make toward becoming our most well rested, happiest, healthiest and generally well rounded versions of ourselves, and little or no correlation with how much time we spend or try to spend on our to-dos.
It is a stunning takeaway, this idea that the key to clock management might have little or nothing to do with the clock at all. Perhaps the question was never, “Am I ahead or behind?” but rather, “How am I?”
If I take time to write, it might mean I miss playing Super Mario with my daughter. But if I give myself these 30 minutes now, the next four in the shower and two more with my coffee, what will that investment mean on the whole for the day? Maybe it will mean I have the energy or strength to face as much of the inevitable transactional and task-oriented stuff life throws at me. Or maybe it means I will be happy enough to not care whether or not I get it all done. Either way, it beats the heck out of trying to beat that clock.
So this morning it’s 9:32. My precious cup of coffee is still warm but mostly empty. The baby is taking a morning power nap while the older two indulge in weekend Wii time. Daddy is at the gym and I am alone with my thoughts and laptop. I visualize filling up some of my buckets. The shower is next. I know that by 10 a.m. the baby will be up and the video games will be off and we will all be thrust into the hustle and bustle of our day. I whisper a silent prayer for the opportunity to renew and recharge. I’ve got my coffee, my softest bathrobe, a fresh towel and at least 28 minutes of uninterrupted showering/thinking time coming at me.
And let us say, Amen.
Jennifer Meer is a mother and writer who lives and works in Connecticut. You can find her on twitter @JennMeer and My Jenn-eration.
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Monday, October 12, 2015
AWARENESS WATCH
Some with Moebius Syndrome are also affected by autism. And certainly those with autism are often, by society, seen as "different", just as those with Moebius are. So this upcoming documentary to be shown on HBO promises to be very interesting. Read all about it:
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A film following a group of young women on the spectrum as they prepare for the social challenges of attending a dance is set to air on HBO later this month.
The documentary “How to Dance in Ohio” focuses on three Columbus, Ohio women with autism who work with a psychologist for 12 weeks leading up to a spring formal.
Marideth, 16, Caroline, 19, and Jessica, 22, open up in therapy sessions, work on their social skills and learn to dance ahead of the big day. Detailed preparations include reviewing the layout of the venue, understanding how to accept an invitation to dance and learning to touch another person.
“For many of them, there’s like a giant wall between them and
everybody else,” said psychologist Emilio Amigo of Amigo Family
Counseling who helped the women prepare. “And the simple task of
learning how to say hello, make eye contact, be in a back-and-forth
conversation, can be incredibly difficult, if not crippling.”
HBO picked up the film just prior to its world premiere at the Sundance Film Festival in January.
“How to Dance in Ohio” will debut on the cable channel Oct. 26 at 9 p.m. ET.
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A film following a group of young women on the spectrum as they prepare for the social challenges of attending a dance is set to air on HBO later this month.
The documentary “How to Dance in Ohio” focuses on three Columbus, Ohio women with autism who work with a psychologist for 12 weeks leading up to a spring formal.
Marideth, 16, Caroline, 19, and Jessica, 22, open up in therapy sessions, work on their social skills and learn to dance ahead of the big day. Detailed preparations include reviewing the layout of the venue, understanding how to accept an invitation to dance and learning to touch another person.
“How to Dance in Ohio” follows three young women with autism leading up to a spring formal. (Laela Kilbourn)
HBO picked up the film just prior to its world premiere at the Sundance Film Festival in January.
“How to Dance in Ohio” will debut on the cable channel Oct. 26 at 9 p.m. ET.
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Friday, October 9, 2015
FRIDAY FOOTBALL PICKS
Last week's record: 10-6.
Record so far for the year: 40-28. Here we go!
COLLEGE PICKS
Northwestern at Michigan. My pick: WILDCATS. Ugh! I am a huge Michigan fan and hate to pick against them. BUT--I worry that Jake Rudock will make the big mistake here, in a close game, and give NU the edge. He's made too many turnovers this year.
Chicago at Kansas City. My pick: CHIEFS 24-14. These are two struggling teams; but look for the Chiefs to begin to right themselves here at home. They are the stronger team.
Seattle at Cincinnati. My pick: BENGALS 21-13. The Bengals are healthy, and have a lot of weapons...and the Seahawks are not yet playing their best football; not even close.
Washington at Atlanta. My pick: FALCONS 30-14. The Falcons are hot, and playing well. No reason to think they will slow down this week.
Jacksonville at Tampa Bay. My pick: JAGUARS 24-17. Blake Bortles has more experience than Jameis Winston; that will show. And the Bucs are not a good home team.
New Orleans at Philadelphia. My pick: EAGLES 34-31. Philly's offense to finally get back on track.
Cleveland at Baltimore. My pick: RAVENS 30-20. Now that the Ravens and Joe Flacco got that first win under their belt, look for them to make a run.
St. Louis at Green Bay. My pick: PACKERS 38-20. Who will slow down Aaron Rodgers? Perhaps nobody.
Buffalo at Tennessee. My pick: BILLS 27-14. Buffalo has been an on -again, off-again team; one week looking great, the next looking not so great. Time for them to look great again (and get some injured players back).
Arizona at Detroit. My pick: LIONS 20-17. Upset alert! This is the Lions...they look terrible; they are winless; but at home...as big underdogs in a game like this...in the past, they've had strange ways of coming up big. They played better last week. They are due to break through.
New England at Dallas. My pick: PATRIOTS 34-17. It is just impossible to imagine Brandon Weeden keeping up with Tom Brady.
Denver at Oakland. My pick: BRONCOS 24-13. Last week the Raiders showed vs the Bears that they are still, kind of, the old Raiders. And the Broncos' defense is really good.
San Francisco at NY Giants. My pick: GIANTS 24-7. The Niners are in a mess; they just can't move the ball.
Pittsburgh at San Diego. My pick: CHARGERS 28-21. Philip Rivers with a significant advantage over Michael Vick.
Record so far for the year: 40-28. Here we go!
COLLEGE PICKS
Northwestern at Michigan. My pick: WILDCATS. Ugh! I am a huge Michigan fan and hate to pick against them. BUT--I worry that Jake Rudock will make the big mistake here, in a close game, and give NU the edge. He's made too many turnovers this year.
Chicago at Kansas City. My pick: CHIEFS 24-14. These are two struggling teams; but look for the Chiefs to begin to right themselves here at home. They are the stronger team.
Seattle at Cincinnati. My pick: BENGALS 21-13. The Bengals are healthy, and have a lot of weapons...and the Seahawks are not yet playing their best football; not even close.
Washington at Atlanta. My pick: FALCONS 30-14. The Falcons are hot, and playing well. No reason to think they will slow down this week.
Jacksonville at Tampa Bay. My pick: JAGUARS 24-17. Blake Bortles has more experience than Jameis Winston; that will show. And the Bucs are not a good home team.
New Orleans at Philadelphia. My pick: EAGLES 34-31. Philly's offense to finally get back on track.
Cleveland at Baltimore. My pick: RAVENS 30-20. Now that the Ravens and Joe Flacco got that first win under their belt, look for them to make a run.
St. Louis at Green Bay. My pick: PACKERS 38-20. Who will slow down Aaron Rodgers? Perhaps nobody.
Buffalo at Tennessee. My pick: BILLS 27-14. Buffalo has been an on -again, off-again team; one week looking great, the next looking not so great. Time for them to look great again (and get some injured players back).
Arizona at Detroit. My pick: LIONS 20-17. Upset alert! This is the Lions...they look terrible; they are winless; but at home...as big underdogs in a game like this...in the past, they've had strange ways of coming up big. They played better last week. They are due to break through.
New England at Dallas. My pick: PATRIOTS 34-17. It is just impossible to imagine Brandon Weeden keeping up with Tom Brady.
Denver at Oakland. My pick: BRONCOS 24-13. Last week the Raiders showed vs the Bears that they are still, kind of, the old Raiders. And the Broncos' defense is really good.
San Francisco at NY Giants. My pick: GIANTS 24-7. The Niners are in a mess; they just can't move the ball.
Pittsburgh at San Diego. My pick: CHARGERS 28-21. Philip Rivers with a significant advantage over Michael Vick.
Wednesday, October 7, 2015
FOR MOEBIUS MOMS AND DADS: YOUR CHILD MAY BE AN INTROVERT; AND IT IS NOTHING TO WORRY ABOUT
Maybe when you were a child, you were an extrovert; you were gregarious, you had lots of friends, you always had something going on. But now you have a child with Moebius. And so now there's a chance your child is different--he/she might be an introvert (when I was a child, I certainly was).
But there's nothing wrong with that. The piece below is simply about introverted children and their parents; it is not about Moebius. However, I think many of the points it makes apply to this community too; give it a read and see what you think:
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You’re confused by your kid. She doesn’t act the way you did when you were growing up. She’s hesitant and reserved. Instead of diving in to play, she’d rather stand back and watch the other kids. She talks to you in fits and starts—sometimes she rambles on, telling you stories, but other times, she’s silent, and you can’t figure out what’s going on in her head. She spends a lot of time alone in her bedroom. Her teacher says he wishes she’d participate more in class. Her social life is limited to two people. Even weirder, she seems totally okay with that.
Congratulations: you’ve got an introvert.
It’s not unusual for extroverted parents to worry about their introverted children and even wonder if their behavior is mentally and emotionally healthy. Of course, children can suffer from anxiety and depression, just as adults can. It’s important to be aware of the symptoms of childhood depression; sometimes withdrawal from friends and family and low energy signal something more than introversion.
Many introverted children, however, are not depressed or anxious at all. They behave in the way they do because of their innate temperament. The more you embrace their natural introverted nature, the happier your child will be.
How to care for your introverted child
1. Know that there is nothing unusual or shameful about being an introvert
Introverts are hardly a minority. Numbers vary based on a study, but introverts make up 30-50 percent of the U.S. population. Some of our most successful leaders, entertainers, and entrepreneurs, such as Bill Gates, Emma Watson, Warren Buffett, Courteney Cox, Christina Aguilera, J.K. Rowling, Abraham Lincoln, Mother Teresa, and Mahatma Gandhi, have been introverts.
2. Understand that your child’s temperament is due to biology
Think your child can just “get over” hating raucous birthday parties? Think again. Introverts’ and extroverts’ brains are “wired” differently, according to Dr. Marti Olsen Laney, author of The Hidden Gifts of the Introverted Child. She writes that children’s temperaments are innate (although parents play an important role in nurturing that temperament).
Introverts’ and extroverts’ brains use different neurotransmitter pathways, and introverts and extroverts use different “sides” of their nervous systems (introverts prefer the parasympathetic side, which is the “rest and digest” system as opposed to the sympathetic, which triggers the “fight, flight, or freeze” response). Furthermore, a study published in the Journal of Neuroscience found that introverts have larger, thicker gray matter in their prefrontal cortices, which is the area of the brain associated with abstract thought and decision-making. If your child tends to be more cautious and reserved than her extroverted peers, rest assured that there’s a biological reason for it.
3. Introduce your child to new people and situations slowly
Introverts often feel overwhelmed or anxious in new environments and around new people. If you’re attending a social event, don’t expect your child to jump into the action and chat with other children right away. If possible, arrive early so your child can get comfortable in that space and feel like other people are entering a space she already “owns.”
Another option is to have your child stand back from the action at a comfortable distance—perhaps near you, where she feels safe—and simply watch the event for a few minutes. Quietly observing will help her process things.
If arriving early or observing isn’t possible, discuss the event ahead of time with your child, talking about who will be there, what will likely happen, how she might feel, and what she could say to start a conversation.
If your child is nervous about starting a new school year, visit your child’s classroom, introduce her to her teacher, and find the bathroom, the lunchroom, and her locker before the hustle and bustle of the first day of classes.
No matter what new experience you’re getting him accustomed to, remember: go slowly, but don’t not go. “Don’t let him opt out, but do respect his limits, even when they seem extreme,” writes Susan Cain about introverted children. “Inch together toward the thing he’s wary of.”
4. Remind your child that she can take breaks from socializing if she feels overwhelmed or tired
While extroverts feel energized by socializing, introverts can feel drained. If your child is older, she can excuse herself to a quieter part of the room or a different location such as the bathroom or outside. If she’s younger, she might not notice when she’s tapped out, so you’ll have to watch her for signs of fatigue.
5. Praise your child when she takes a social risk
Let her know you admire what she did. Say something like, “Yesterday, I saw you talking to that new boy. I know that was hard for you, but I’m proud of what you did.”
6. Point out when she ends up enjoying something she was initially afraid of
Say, “You thought you were going to have a miserable time at the birthday party, but you ended up making some new friends.” With positive reinforcement like this, over time, she’ll be more likely to be able to self-regulate her feelings of nervousness and dread.
7. Help your child cultivate her passions
Your child may have intense—and maybe even unique—interests. Give her opportunities to pursue those interests, says Christine Fonseca, author of Quiet Kids: Help Your Introverted Child Succeed in an Extroverted World. Softball and Girl Scouts may work well for some children, but don’t forget to look off the beaten path and consider writing classes or science camps. Intense engagement in an activity can bring happiness, well-being, and confidence (think Mihaly Csikszentmihalyi’s state of flow), but it also gives your child opportunities to socialize with other children who have similar passions (and perhaps similar temperaments).
8. Talk to your child’s teachers about her introversion
This will help your child’s teachers know how to interpret her behavior. Some teachers mistakenly assume that introverted children don’t speak up much in class because they’re disinterested or not paying attention.
On the contrary, introverted students can be quite attentive in class, but they often prefer to listen and observe rather than actively participate.
Also, if the teacher knows about your child’s introversion, the teacher may be able to gently help her navigate things like interactions with friends, participation in group work, or presenting in class.
9. Teach your child to stand up for herself
Teach her to say stop or no in a loud voice when another child tries to take her toy from her. If she’s being bullied or treated unfairly at school, encourage her to speak up to an adult or the perpetrator. “It starts with teaching introverted children that their voice is important,” Fonseca says.
10. Make sure your child feels “heard”
Listen to your child, and ask questions to draw her out. Many introverts—children and adults—struggle with feeling “heard” by others. Introverts “live internally, and they need someone to draw them out,” writes Dr. Laney in her book. “Without a parent who listens and reflects back to them, like an echo, what they are thinking, they can get lost in their own minds.”
11. Be aware that your child might not ask for help
Introverts tend to internalize problems. Your child might not talk to you about a difficult situation she’s dealing with at school or with a friend although she wishes for and/or could benefit from some adult guidance. Again, ask questions and truly listen—but don’t pry or make your questions feel like an interrogation.
12. Don’t label your child as “shy”
“Shy” is a word that carries a negative connotation. If your introverted child hears the word “shy” enough times, she may start to believe that her discomfort around people is a fixed trait, not a feeling she can learn to control. Furthermore, “shy” focuses on the inhibition she experiences, and it doesn’t help her understand the true source of her quietness—her introverted temperament.
13. Don’t worry if your child only has one or two close friends
Introverts seek depth in relationships, not breadth. They prefer a small circle of friends and usually aren’t interested in being “popular.”
14. Don’t take it personally when your child needs time alone
Anything that pulls your child out of her inner world—like going to school, socializing, or even navigating a new routine—will drain her. Don’t be hurt or think your child doesn’t enjoy being with the family when she spends time alone in her room, perhaps reading a book, playing on the computer, or playing an imagination game. Most likely, once she has recharged, she’ll want to spend time with the family again.
15. Celebrate your child’s temperament
“Don’t just accept your child for who she is; treasure her for who she is,” writes Cain. “Introverted children are often kind, thoughtful, focused, and very interesting company, as long as they’re in settings that work for them.”
This article originally appeared on QuietRev.com.
But there's nothing wrong with that. The piece below is simply about introverted children and their parents; it is not about Moebius. However, I think many of the points it makes apply to this community too; give it a read and see what you think:
*********************************
You’re confused by your kid. She doesn’t act the way you did when you were growing up. She’s hesitant and reserved. Instead of diving in to play, she’d rather stand back and watch the other kids. She talks to you in fits and starts—sometimes she rambles on, telling you stories, but other times, she’s silent, and you can’t figure out what’s going on in her head. She spends a lot of time alone in her bedroom. Her teacher says he wishes she’d participate more in class. Her social life is limited to two people. Even weirder, she seems totally okay with that.
Congratulations: you’ve got an introvert.
It’s not unusual for extroverted parents to worry about their introverted children and even wonder if their behavior is mentally and emotionally healthy. Of course, children can suffer from anxiety and depression, just as adults can. It’s important to be aware of the symptoms of childhood depression; sometimes withdrawal from friends and family and low energy signal something more than introversion.
Many introverted children, however, are not depressed or anxious at all. They behave in the way they do because of their innate temperament. The more you embrace their natural introverted nature, the happier your child will be.
How to care for your introverted child
1. Know that there is nothing unusual or shameful about being an introvert
Introverts are hardly a minority. Numbers vary based on a study, but introverts make up 30-50 percent of the U.S. population. Some of our most successful leaders, entertainers, and entrepreneurs, such as Bill Gates, Emma Watson, Warren Buffett, Courteney Cox, Christina Aguilera, J.K. Rowling, Abraham Lincoln, Mother Teresa, and Mahatma Gandhi, have been introverts.
2. Understand that your child’s temperament is due to biology
Think your child can just “get over” hating raucous birthday parties? Think again. Introverts’ and extroverts’ brains are “wired” differently, according to Dr. Marti Olsen Laney, author of The Hidden Gifts of the Introverted Child. She writes that children’s temperaments are innate (although parents play an important role in nurturing that temperament).
Introverts’ and extroverts’ brains use different neurotransmitter pathways, and introverts and extroverts use different “sides” of their nervous systems (introverts prefer the parasympathetic side, which is the “rest and digest” system as opposed to the sympathetic, which triggers the “fight, flight, or freeze” response). Furthermore, a study published in the Journal of Neuroscience found that introverts have larger, thicker gray matter in their prefrontal cortices, which is the area of the brain associated with abstract thought and decision-making. If your child tends to be more cautious and reserved than her extroverted peers, rest assured that there’s a biological reason for it.
3. Introduce your child to new people and situations slowly
Introverts often feel overwhelmed or anxious in new environments and around new people. If you’re attending a social event, don’t expect your child to jump into the action and chat with other children right away. If possible, arrive early so your child can get comfortable in that space and feel like other people are entering a space she already “owns.”
Another option is to have your child stand back from the action at a comfortable distance—perhaps near you, where she feels safe—and simply watch the event for a few minutes. Quietly observing will help her process things.
If arriving early or observing isn’t possible, discuss the event ahead of time with your child, talking about who will be there, what will likely happen, how she might feel, and what she could say to start a conversation.
If your child is nervous about starting a new school year, visit your child’s classroom, introduce her to her teacher, and find the bathroom, the lunchroom, and her locker before the hustle and bustle of the first day of classes.
No matter what new experience you’re getting him accustomed to, remember: go slowly, but don’t not go. “Don’t let him opt out, but do respect his limits, even when they seem extreme,” writes Susan Cain about introverted children. “Inch together toward the thing he’s wary of.”
4. Remind your child that she can take breaks from socializing if she feels overwhelmed or tired
While extroverts feel energized by socializing, introverts can feel drained. If your child is older, she can excuse herself to a quieter part of the room or a different location such as the bathroom or outside. If she’s younger, she might not notice when she’s tapped out, so you’ll have to watch her for signs of fatigue.
5. Praise your child when she takes a social risk
Let her know you admire what she did. Say something like, “Yesterday, I saw you talking to that new boy. I know that was hard for you, but I’m proud of what you did.”
6. Point out when she ends up enjoying something she was initially afraid of
Say, “You thought you were going to have a miserable time at the birthday party, but you ended up making some new friends.” With positive reinforcement like this, over time, she’ll be more likely to be able to self-regulate her feelings of nervousness and dread.
7. Help your child cultivate her passions
Your child may have intense—and maybe even unique—interests. Give her opportunities to pursue those interests, says Christine Fonseca, author of Quiet Kids: Help Your Introverted Child Succeed in an Extroverted World. Softball and Girl Scouts may work well for some children, but don’t forget to look off the beaten path and consider writing classes or science camps. Intense engagement in an activity can bring happiness, well-being, and confidence (think Mihaly Csikszentmihalyi’s state of flow), but it also gives your child opportunities to socialize with other children who have similar passions (and perhaps similar temperaments).
8. Talk to your child’s teachers about her introversion
This will help your child’s teachers know how to interpret her behavior. Some teachers mistakenly assume that introverted children don’t speak up much in class because they’re disinterested or not paying attention.
On the contrary, introverted students can be quite attentive in class, but they often prefer to listen and observe rather than actively participate.
Also, if the teacher knows about your child’s introversion, the teacher may be able to gently help her navigate things like interactions with friends, participation in group work, or presenting in class.
9. Teach your child to stand up for herself
Teach her to say stop or no in a loud voice when another child tries to take her toy from her. If she’s being bullied or treated unfairly at school, encourage her to speak up to an adult or the perpetrator. “It starts with teaching introverted children that their voice is important,” Fonseca says.
10. Make sure your child feels “heard”
Listen to your child, and ask questions to draw her out. Many introverts—children and adults—struggle with feeling “heard” by others. Introverts “live internally, and they need someone to draw them out,” writes Dr. Laney in her book. “Without a parent who listens and reflects back to them, like an echo, what they are thinking, they can get lost in their own minds.”
11. Be aware that your child might not ask for help
Introverts tend to internalize problems. Your child might not talk to you about a difficult situation she’s dealing with at school or with a friend although she wishes for and/or could benefit from some adult guidance. Again, ask questions and truly listen—but don’t pry or make your questions feel like an interrogation.
12. Don’t label your child as “shy”
“Shy” is a word that carries a negative connotation. If your introverted child hears the word “shy” enough times, she may start to believe that her discomfort around people is a fixed trait, not a feeling she can learn to control. Furthermore, “shy” focuses on the inhibition she experiences, and it doesn’t help her understand the true source of her quietness—her introverted temperament.
13. Don’t worry if your child only has one or two close friends
Introverts seek depth in relationships, not breadth. They prefer a small circle of friends and usually aren’t interested in being “popular.”
14. Don’t take it personally when your child needs time alone
Anything that pulls your child out of her inner world—like going to school, socializing, or even navigating a new routine—will drain her. Don’t be hurt or think your child doesn’t enjoy being with the family when she spends time alone in her room, perhaps reading a book, playing on the computer, or playing an imagination game. Most likely, once she has recharged, she’ll want to spend time with the family again.
15. Celebrate your child’s temperament
“Don’t just accept your child for who she is; treasure her for who she is,” writes Cain. “Introverted children are often kind, thoughtful, focused, and very interesting company, as long as they’re in settings that work for them.”
This article originally appeared on QuietRev.com.
Tuesday, October 6, 2015
INSPIRATIONAL STORY OF THE DAY
Ever hear of Tim Howard? He was the goalkeeper on the US men's national soccer team in the World Cup; he also plays big-time soccer in Europe. But did you know--he too has a neurological syndrome? But, just like us, he has found ways to deal. Read on:
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Many Americans know Tim Howard as the star goalie of the United States men’s national soccer team, whose dramatic saves in last year’s World Cup
in Brazil led to a tournament record. But fewer know about his
struggles off the field with a neurological disorder that is fairly
common but widely misunderstood.
The first symptoms
crept up on him when he was 10, when he developed intrusive thoughts and
compulsive behaviors. He blinked obsessively, constantly cleared his
throat, and often found himself shrugging his shoulders and rolling his
eyes repetitively to relieve anxious thoughts. A doctor diagnosed Tourette syndrome,
marked by tics and repetitive movements, and obsessive-compulsive
disorder, an anxiety disorder. The conditions are closely related and
often occur together.
Mr. Howard felt
powerless to control his tics and obsessive thoughts, but sports gave
him an outlet: On the field, his symptoms would subside as he focused
all his energy on stopping the soccer balls whizzing toward him.
Today, Mr. Howard is a goalkeeper for the English Football Club Everton
and an outspoken advocate for greater awareness and research into
Tourette syndrome, which affects roughly one out of every 160
school-aged children in the United States. Last year, the Tourette
Association of America gave him its “Champion of Hope Award,” calling him the most notable person in the world with the condition.
Recently, we caught up
with Mr. Howard to discuss growing up with compulsive behaviors, the
Tourette misconceptions he is trying to dispel, and whether soccer fans
can expect to see him in goal at the next World Cup. Here’s an edited
version of our conversation.
Q.
I was surprised to learn that Tourette syndrome affects so many children. Why do you think it does not get more attention?
A.
I don’t have the
answer, but it affects a lot more people than we’re all aware of. It’s
something that is not as openly discussed and talked about among
educators, doctors and health professionals as it should be. Creating
awareness is the mountain we are trying to climb.
Q.
What was it like growing up with this condition?
A.
I had a great
childhood. From the age of 6 I was playing soccer and baseball. I had
great friends. I used to run around the neighborhood and cause havoc on
my bicycle. I had a normal childhood. But at some point in there, when I
was around 10 or 11 years old, Tourette syndrome crept up on me with
the O.C.D. and the tics. Obviously I knew something was different. But
none of the other stuff wavered. I still had good friends. I still
enjoyed and excelled at sports. But there was this point in time where
this strange thing was going on with me.
As a kid I recognized
it, but on my list of priorities it was very low. On my mom’s list of
priorities, however, it was very high. She saw me, her youngest child,
with these tics that didn’t seem normal, and she was very concerned.
Q.
What did your mother do?
A.
It was very
frustrating. She did a lot of reading up on it and then took me to see a
doctor. The doctor wanted to prescribe a drug. But my mother was
against it. So we tried other things. I had a lot of trouble just
sitting still most of the time, and my mother would often send me
outdoors to play.
Q.
Did sports help you manage some of your symptoms?
A.
Sports certainly gave
me relief. They gave me another focus. I didn’t just go to school and
then come home and sit in my room and ponder life. Sports gave me this
outlet that I needed because I had all this pent up energy from trying
to suppress my tics. I was trying to get through an entire school day
without looking different from all the other kids and I was unsuccessful
at that.
So it was great for me
to be able to participate in sports every day — to be a kid who was
active. In all this chaos that was going on inside my body and inside my
brain, trying to figure it all out as a young teenager, I always had
soccer or baseball or basketball. That was what I looked forward to. It
gave me something that I could focus on and enjoy.
Q.
What are some of the misconceptions you are trying to dispel?
A.
Hollywood has so much
power, and any time they portray someone with Tourette syndrome in a
movie or on a television show it’s always some kid or some person
cursing. That may be laughable to some people, but it’s a misconception.
That kind of behavior affects only a low percentage of the Tourette
community – only about 10 percent. For the most part, we in the Tourette
community are as normal as anyone else.
Q.
Many people with Tourette syndrome today look up to you. Who did you look up to as a child?
A.
Way back when I was a
child, the only person I knew of that had Tourette syndrome was Chris
Jackson, who played basketball for the Denver Nuggets and later changed
his name to Mahmoud Abdul-Rauf. At the time there was absolutely zero
literature on Tourette syndrome that I could find because the Internet
was still in its infancy. Then I saw a program with Chris Jackson on
television one night documenting his journey. And so here I was this
young kid, wide eyed and thinking, “Holy cow, not only is he like me,
but TS doesn’t matter! This guy made it to the NBA, the pinnacle of
basketball.”
Q.
It sounds like seeing him had a lasting impact on you.
A.
It changed my life.
And that’s how I see it today: I want to be him to all the other kids
with Tourette syndrome. I want them to see me and think: “Yeah, he has
TS. But he wanted to play in the Premier League and he did it. He wanted
to play in the World Cup and he did it – because of, or in spite of,
having TS.’
Q.
Has your success in soccer made it easier to bring attention to your cause?
A.
I’m a walking
billboard. I’ve always said I have such an easy job creating awareness
because I have no choice. Saturday morning comes and there are a billion
sets of eyeballs watching the world’s beautiful game and I’m at the
forefront of it. So I feel like I’ve got an easy job raising awareness.
Q.
What is one message you would like to convey to the public about Tourette syndrome?
A.
There are so many
messages. But I think it’s time for everyone to understand that research
needs to increase. It’s not O.K. for doctors to slap a blanket
medication over this condition and tell people to come back in a couple
months. It really needs to be looked at and studied in much finer detail
than it is today.
Q.
Your performance in
the World Cup last year was widely celebrated and turned you into an
Internet sensation. Can we expect to see you in goal again at the 2018
World Cup?
A.
If my body holds up
and the manager selects me, then I would most certainly want to be
there. That would be awesome. That’s my goal, and that’s certainly the
carrot that I have in front of me and that’s something I would love to
do. I would love to be part of a team that goes to Russia because the
U.S. team is young, it’s exciting, and it has a lot to prove.
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Monday, October 5, 2015
PLAYGROUNDS AND YOUR CHILDREN
Does your child have autism? (Studies show that some children with Moebius have some autism too, but by no means does every child with Moebius have autism) If he/she does, do you crave an empty playground?? What can we do about playgrounds? Read on, Moebius moms and dads:
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Every morning this summer while on vacation in Rehoboth Beach, Del., I strapped my two boys into their car seats and drove the mile from our house to the little Lake Gerar playground near the northernmost end of the boardwalk. And every morning as we approached, I said my usual little prayer. “Please, let it be empty. Please, please, please, let it be empty.”
The Lake Gerar Tot Lot is the smallest of the three public playgrounds in Rehoboth Beach. It is nothing special. But I like it because it’s completely fenced-in and because it is almost an afterthought in a resort town that tries hard to get my children’s attention, with kite shop employees who stand outside blowing giant bubbles, a bookstore with free balloons and of course, Funland, the ringing, dinging boardwalk gallery of rides and games. I like the Lake Gerar playground because if I go before 8 a.m., it is usually empty, and I don’t have to worry if my autistic 3-year-old throws wood chips or if he wants everyone, including his baby brother, to stay off the swings so he can push the empty seats and race back and forth in front of them.
No one has better articulated my love-hate relationship with playgrounds than Yetta Myrick, a mother of an 11-year-old autistic boy and the executive director of DC Autism Parents. “The playground can be a nightmare for parents of children with autism because it is one of the places where we truly see the differences between our children and neurotypical children,” she told me.
On the playground, many autistic children prefer to play by themselves, uninterested in engaging with other children who are there. They can be easily overstimulated by noises that don’t bother other children. Some autistic children have meltdowns in the sandbox because it overloads their system. Others throw sand for stimulation. Or run into the other children because they aren’t paying attention. “And we cannot forget to mention the stares from other parents and their children because there is something wrong with our child,” Myrick said.
I want to love playgrounds. I want to be the kind of mother who doesn’t care what other people think. I have a beautiful, interesting child who loves Elmo, hugs, silly songs and wagon rides and can easily recite the alphabet in both English and Arabic. I also have a child who fusses a lot and yells if his world gets disordered, which it easily does. It doesn’t help that my little guy looks older than he actually is. People see a misbehaving 5-year-old with a temper instead of a frustrated autistic 3-year-old who is still unraveling both of the languages he speaks. For my kid on the spectrum, his disability is invisible, until it is not.
On a recent visit to his grandmother in Central Illinois, I took my son to a playground near her house. I spent the entire 20 minutes there chasing him, shouting for him to stay on the playground and finally threatening to leave if he kept dashing off. Twice, he ran down a small embankment toward a drainage ditch because he loves the sensation of free-falling down a hill. After the second time, I picked him up, strapped him crying into the wagon and left because I didn’t feel like I could keep him safe. Frankly, I also was frustrated. A playground is supposed to be a carefree place. Given the choice, I’d rather take both my kids to Target than to the playground. I know how crazy that sounds, but at least at the store, I can strap them in to keep them safe and hand the older one my smartphone to distract him. If he gets upset, nobody pays much attention. It’s Target. You almost expect to find at least one howling child per visit. Playgrounds, on the other hand, are supposed to be happy places, and although kids throw fits, and 3-year-olds act 3 whether they are on the spectrum or not, there’s something about a meltdown at the playground that seems to attract more attention.
And yet I know that playgrounds are important places for my son to learn how to play and to interact, which is not intuitive for him, as one of the directors at the camp he attended this summer at St. Joseph’s University in Philadelphia reminded me.
“Developing social interactions is something that most people take for granted as part of childhood,” said Lindsey DelCarlino, assistant director of programs for the Kinney Center for Autism Education and Support. “For those with a diagnosis of ASD, social interaction may be difficult and recognizing the importance of developing relationships and the ability to generalize that behavior is critically important to development.”
But, she added, “Knowing what situations work best for your child is the most important thing.”
For me, that is a playground with a fence.
My 3-year-old loves to run more than he likes to play on the equipment, and he is fast, really fast. I didn’t realize how few playgrounds had fences until I started looking for the ones that did. Without a fence, a playground is not accessible to many young autistic children, and it’s a shame more park planners don’t get that. If I had a call to arms in this journey that is parenting an autistic child, it would be this: Playgrounds need fences.
On our drive back to our home in Chicago the first week in August, I decided to stay near Akron, Ohio. I researched playgrounds first and found one in neighboring Fairlawn that was rated one of the best in north Ohio. Several Web sites described it as enclosed. Elated, I chose a hotel within a five-minute drive. But when we pulled into the parking lot at Griffith’s Park, I saw immediately that the playground was only partially fenced. My 3-year-old needed to get out of the car, and I had been talking it up, so we went anyway, but I had to wear his brother in a wrap and stand near the opening so he wouldn’t dash off, his little legs eager for a good sprint after more than six hours in the car. I was anxious the entire time, and we only stayed about a half hour before I scooped up my crying child who didn’t want to leave yet and carried him back to the car.
For some autistic children, the best playgrounds are ones with special equipment that suits their sensory needs, which many have. The Montgomery County Department of Parks is adding an egg-shaped cocoon at Fernwood Local Park in Bethesda that will provide a spot for overstimulated autistic children to take a break. However, the playground, like many, is not enclosed.
Kaneen Geiger, program director for the Autism Elementary/Middle Program at the Ivymount School in Rockville, said she often advises parents to go to a public school playground on the weekends because they are generally enclosed, particularly in an urban area.
She said it’s also good for parents of autistic children to go when it isn’t crowded to practice appropriate play like taking turns and sharing. Some autistic children, for example, may have a favorite swing or spot in the playground and get upset if someone else is in it, she said.
“They can practice taking turns with their child to get practice in the moment,” she said.
She said autistic kids who get good at practicing with adults may still have difficulty with other children, making it a good idea to bring a slightly older child along to help.
Parents also should have an exit plan. “I would make sure to go when you have a plan for how you can leave quickly when it becomes too difficult,” Geiger said. “Don’t have the first time being when you are bringing 10 kids. Just you and your child with autism … the first time so you can stop it as soon as possible when it all becomes too difficult. Maybe bring some of those comfort items like a favorite toy they can play with to take some breaks from kids so they can come back when they’re ready.”
She acknowledged that it can be challenging for parents to manage their own worries. “But I think also practicing when the playground is a little more quiet can help the parents see that it is going to be okay, that their child can learn to tolerate new things as long as we continue,” she said. “It is very scary situation.”
One morning at the Lake Gerar playground in Rehoboth, a woman with five children showed up shortly after we arrived. Although I willed them to keep walking when I saw them coming up the path, they all came into the playground.
Two of the children immediately got on the swings. My son watched them without saying anything and then started running in front of them, within inches of their feet. I called for him to be careful, but he insisted on running in front of the swings. I put his brother back in the car seat carrier so I’d have both arms free to intervene, and grabbed a peach from my bag in case I needed a bribe to lure him away.
I walked closer to watch and tried to explain to the woman why my little guy didn’t seem to care or notice that he could get clobbered by swinging feet. “He’s autistic,” I told her, hoping that would be enough.
“Oh!” she said. “I wondered.”
We both watched him for a few minutes. “He’s created his own obstacle course,” she said. “That’s really neat.”
I looked over at her in surprise and also grateful. We stayed that morning longer than usual. Nobody left in tears.
Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now an assistant professor of journalism at Columbia College Chicago, a correspondent for Columbia Journalism Review and the mother of two boys.
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Every morning this summer while on vacation in Rehoboth Beach, Del., I strapped my two boys into their car seats and drove the mile from our house to the little Lake Gerar playground near the northernmost end of the boardwalk. And every morning as we approached, I said my usual little prayer. “Please, let it be empty. Please, please, please, let it be empty.”
The Lake Gerar Tot Lot is the smallest of the three public playgrounds in Rehoboth Beach. It is nothing special. But I like it because it’s completely fenced-in and because it is almost an afterthought in a resort town that tries hard to get my children’s attention, with kite shop employees who stand outside blowing giant bubbles, a bookstore with free balloons and of course, Funland, the ringing, dinging boardwalk gallery of rides and games. I like the Lake Gerar playground because if I go before 8 a.m., it is usually empty, and I don’t have to worry if my autistic 3-year-old throws wood chips or if he wants everyone, including his baby brother, to stay off the swings so he can push the empty seats and race back and forth in front of them.
No one has better articulated my love-hate relationship with playgrounds than Yetta Myrick, a mother of an 11-year-old autistic boy and the executive director of DC Autism Parents. “The playground can be a nightmare for parents of children with autism because it is one of the places where we truly see the differences between our children and neurotypical children,” she told me.
On the playground, many autistic children prefer to play by themselves, uninterested in engaging with other children who are there. They can be easily overstimulated by noises that don’t bother other children. Some autistic children have meltdowns in the sandbox because it overloads their system. Others throw sand for stimulation. Or run into the other children because they aren’t paying attention. “And we cannot forget to mention the stares from other parents and their children because there is something wrong with our child,” Myrick said.
I want to love playgrounds. I want to be the kind of mother who doesn’t care what other people think. I have a beautiful, interesting child who loves Elmo, hugs, silly songs and wagon rides and can easily recite the alphabet in both English and Arabic. I also have a child who fusses a lot and yells if his world gets disordered, which it easily does. It doesn’t help that my little guy looks older than he actually is. People see a misbehaving 5-year-old with a temper instead of a frustrated autistic 3-year-old who is still unraveling both of the languages he speaks. For my kid on the spectrum, his disability is invisible, until it is not.
On a recent visit to his grandmother in Central Illinois, I took my son to a playground near her house. I spent the entire 20 minutes there chasing him, shouting for him to stay on the playground and finally threatening to leave if he kept dashing off. Twice, he ran down a small embankment toward a drainage ditch because he loves the sensation of free-falling down a hill. After the second time, I picked him up, strapped him crying into the wagon and left because I didn’t feel like I could keep him safe. Frankly, I also was frustrated. A playground is supposed to be a carefree place. Given the choice, I’d rather take both my kids to Target than to the playground. I know how crazy that sounds, but at least at the store, I can strap them in to keep them safe and hand the older one my smartphone to distract him. If he gets upset, nobody pays much attention. It’s Target. You almost expect to find at least one howling child per visit. Playgrounds, on the other hand, are supposed to be happy places, and although kids throw fits, and 3-year-olds act 3 whether they are on the spectrum or not, there’s something about a meltdown at the playground that seems to attract more attention.
And yet I know that playgrounds are important places for my son to learn how to play and to interact, which is not intuitive for him, as one of the directors at the camp he attended this summer at St. Joseph’s University in Philadelphia reminded me.
“Developing social interactions is something that most people take for granted as part of childhood,” said Lindsey DelCarlino, assistant director of programs for the Kinney Center for Autism Education and Support. “For those with a diagnosis of ASD, social interaction may be difficult and recognizing the importance of developing relationships and the ability to generalize that behavior is critically important to development.”
But, she added, “Knowing what situations work best for your child is the most important thing.”
For me, that is a playground with a fence.
My 3-year-old loves to run more than he likes to play on the equipment, and he is fast, really fast. I didn’t realize how few playgrounds had fences until I started looking for the ones that did. Without a fence, a playground is not accessible to many young autistic children, and it’s a shame more park planners don’t get that. If I had a call to arms in this journey that is parenting an autistic child, it would be this: Playgrounds need fences.
On our drive back to our home in Chicago the first week in August, I decided to stay near Akron, Ohio. I researched playgrounds first and found one in neighboring Fairlawn that was rated one of the best in north Ohio. Several Web sites described it as enclosed. Elated, I chose a hotel within a five-minute drive. But when we pulled into the parking lot at Griffith’s Park, I saw immediately that the playground was only partially fenced. My 3-year-old needed to get out of the car, and I had been talking it up, so we went anyway, but I had to wear his brother in a wrap and stand near the opening so he wouldn’t dash off, his little legs eager for a good sprint after more than six hours in the car. I was anxious the entire time, and we only stayed about a half hour before I scooped up my crying child who didn’t want to leave yet and carried him back to the car.
For some autistic children, the best playgrounds are ones with special equipment that suits their sensory needs, which many have. The Montgomery County Department of Parks is adding an egg-shaped cocoon at Fernwood Local Park in Bethesda that will provide a spot for overstimulated autistic children to take a break. However, the playground, like many, is not enclosed.
Kaneen Geiger, program director for the Autism Elementary/Middle Program at the Ivymount School in Rockville, said she often advises parents to go to a public school playground on the weekends because they are generally enclosed, particularly in an urban area.
She said it’s also good for parents of autistic children to go when it isn’t crowded to practice appropriate play like taking turns and sharing. Some autistic children, for example, may have a favorite swing or spot in the playground and get upset if someone else is in it, she said.
“They can practice taking turns with their child to get practice in the moment,” she said.
She said autistic kids who get good at practicing with adults may still have difficulty with other children, making it a good idea to bring a slightly older child along to help.
Parents also should have an exit plan. “I would make sure to go when you have a plan for how you can leave quickly when it becomes too difficult,” Geiger said. “Don’t have the first time being when you are bringing 10 kids. Just you and your child with autism … the first time so you can stop it as soon as possible when it all becomes too difficult. Maybe bring some of those comfort items like a favorite toy they can play with to take some breaks from kids so they can come back when they’re ready.”
She acknowledged that it can be challenging for parents to manage their own worries. “But I think also practicing when the playground is a little more quiet can help the parents see that it is going to be okay, that their child can learn to tolerate new things as long as we continue,” she said. “It is very scary situation.”
One morning at the Lake Gerar playground in Rehoboth, a woman with five children showed up shortly after we arrived. Although I willed them to keep walking when I saw them coming up the path, they all came into the playground.
Two of the children immediately got on the swings. My son watched them without saying anything and then started running in front of them, within inches of their feet. I called for him to be careful, but he insisted on running in front of the swings. I put his brother back in the car seat carrier so I’d have both arms free to intervene, and grabbed a peach from my bag in case I needed a bribe to lure him away.
I walked closer to watch and tried to explain to the woman why my little guy didn’t seem to care or notice that he could get clobbered by swinging feet. “He’s autistic,” I told her, hoping that would be enough.
“Oh!” she said. “I wondered.”
We both watched him for a few minutes. “He’s created his own obstacle course,” she said. “That’s really neat.”
I looked over at her in surprise and also grateful. We stayed that morning longer than usual. Nobody left in tears.
Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now an assistant professor of journalism at Columbia College Chicago, a correspondent for Columbia Journalism Review and the mother of two boys.
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Friday, October 2, 2015
FRIDAY FOOTBALL PICKS!!
Last week: record of 12-6; better! I am 30-22 for the year.
On to this week!
COLLEGE PICKS
Notre Dame at Clemson. My pick: TIGERS. Two good teams, but...note: ND plays this one on the road, and their only road game so far (Virginia), though a win, wasn't pretty for them. Clemson to win at home.
Alabama at Georgia. My pick: BULLDOGS. Not a lot of trust in 'Bama's QB situation.
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NFL PICKS
NY Jets at Miami. My pick: JETS by 3. A good defense vs a struggling offense; defense usually wins.
Jacksonville at Indianapolis. My pick: COLTS by 7. The Colts still have problems, but they have dominated the Jags for years; here's a chance for them to work out some more kinks.
NY Giants at Buffalo. My pick: BILLS by 3. Tyrod Taylor is turning out to be a good choice for the Bills at QB.
Carolina at Tampa Bay. My pick: PANTHERS by 10. The only way the Bucs can win is to get turnovers (as they did at New Orleans); I don't think Carolina will give them any.
Philadelphia at Washington. My pick: EAGLES by 7. They don't have their offense in sync yet, but you beat the Redskins if you shut down their run game, and Philly has a good defensive front.
Oakland at Chicago. My pick: RAIDERS by 5. This scares me a bit, as traditionally the Raiders have not been good on the east coast, let alone for 2 weeks in a row. But the Bears have too many problems, and the Raiders are better.
Houston at Atlanta. My pick: FALCONS by 12. J.J. Watt is good, but he can't cover Julio Jones; no one can.
Kansas City at Cincinnati. My pick: BENGALS by 8. Have the Bengals finally turned the corner; are they becoming elite? Time will tell, but they are playing well and are the stronger team here.
Cleveland at San Diego. My pick: CHARGERS by 4. The Chargers are beat up, but it's hard to see a Browns team that could not win vs Oakland at home going out and beating Philip Rivers in his backyard.
Green Bay at San Francisco. My pick: PACKERS by 17. Need we say much here? The 49ers are a mess; Aaron Rodgers looks set up to have perhaps his greatest year.
St. Louis at Arizona. My pick: CARDINALS by 9. I think Arizona is absolutely for real; lots of speed and talent.
Minnesota at Denver. My pick: BRONCOS by 4. Intriguing matchup; a key--the Vikings win when AP can run the ball...but the Broncos have a good defense and will, I predict, hold him down.
Dallas at New Orleans. My pick: COWBOYS by 3. If the Cowboys stick to the run and their O-line performs, there is no reason Brandon Weeden can't lead them to a win vs a weak Saints defense.
Detroit at Seattle. My pick: SEAHAWKS by 14. The Lions are in a mess, with an offensive line that can't protect. Not good in Seattle with the loud crowd.
On to this week!
COLLEGE PICKS
Notre Dame at Clemson. My pick: TIGERS. Two good teams, but...note: ND plays this one on the road, and their only road game so far (Virginia), though a win, wasn't pretty for them. Clemson to win at home.
Alabama at Georgia. My pick: BULLDOGS. Not a lot of trust in 'Bama's QB situation.
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NFL PICKS
NY Jets at Miami. My pick: JETS by 3. A good defense vs a struggling offense; defense usually wins.
Jacksonville at Indianapolis. My pick: COLTS by 7. The Colts still have problems, but they have dominated the Jags for years; here's a chance for them to work out some more kinks.
NY Giants at Buffalo. My pick: BILLS by 3. Tyrod Taylor is turning out to be a good choice for the Bills at QB.
Carolina at Tampa Bay. My pick: PANTHERS by 10. The only way the Bucs can win is to get turnovers (as they did at New Orleans); I don't think Carolina will give them any.
Philadelphia at Washington. My pick: EAGLES by 7. They don't have their offense in sync yet, but you beat the Redskins if you shut down their run game, and Philly has a good defensive front.
Oakland at Chicago. My pick: RAIDERS by 5. This scares me a bit, as traditionally the Raiders have not been good on the east coast, let alone for 2 weeks in a row. But the Bears have too many problems, and the Raiders are better.
Houston at Atlanta. My pick: FALCONS by 12. J.J. Watt is good, but he can't cover Julio Jones; no one can.
Kansas City at Cincinnati. My pick: BENGALS by 8. Have the Bengals finally turned the corner; are they becoming elite? Time will tell, but they are playing well and are the stronger team here.
Cleveland at San Diego. My pick: CHARGERS by 4. The Chargers are beat up, but it's hard to see a Browns team that could not win vs Oakland at home going out and beating Philip Rivers in his backyard.
Green Bay at San Francisco. My pick: PACKERS by 17. Need we say much here? The 49ers are a mess; Aaron Rodgers looks set up to have perhaps his greatest year.
St. Louis at Arizona. My pick: CARDINALS by 9. I think Arizona is absolutely for real; lots of speed and talent.
Minnesota at Denver. My pick: BRONCOS by 4. Intriguing matchup; a key--the Vikings win when AP can run the ball...but the Broncos have a good defense and will, I predict, hold him down.
Dallas at New Orleans. My pick: COWBOYS by 3. If the Cowboys stick to the run and their O-line performs, there is no reason Brandon Weeden can't lead them to a win vs a weak Saints defense.
Detroit at Seattle. My pick: SEAHAWKS by 14. The Lions are in a mess, with an offensive line that can't protect. Not good in Seattle with the loud crowd.
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