And again, this is thanks to Alex Barker--who has not allowed himself to be intimidated. Read on:
*********************
A disabled man who claimed staff at a Westcountry pub refused to serve him after mistaking his condition for drunkenness has completed a 300-mile "pub crawl", including Exeter, to raise awareness.
Alex Barker, 43, who has Moebius Syndrome which causes facial paralysis, stumbled as he walked into the Cutty Sark pub in Falmouth two weeks ago, and was then refused service as staff believed him to be ‘under the influence’.
His experience led to national media coverage and a social media campaign led by the charity Changing Faces in which pubs were asked to commit to ‘#ServeAlex’.
After leaving Coventry on Friday, Alex called at pubs in Worcester, Bristol, Exeter, Bodmin and Truro before reaching Falmouth on Saturday nght], where he visited a number of pubs and bars.In Exeter Alex visited The Old Firehouse, The Oddfellows and The Prospect.
“I’ve had a fantastic welcome from all the pubs I’ve visited on the way,” said Alex. “I’d never been refused service before, and it’s restored my faith that so many pubs are clearly very welcoming to all their customers. All licensees need to make sure they and their staff are aware of their legal obligations to treat all customers fairly and equally."
He’s hoping to raise £10,000 for Changing Faces and Facial Palsy UK, two charities that have supported him, to help them raise awareness of the problem. “I’ve raised more than £700 so far, and have to say a huge thanks to the Old Windmill in Coventry, and The Prospect in Exeter, who handed me cash donations when I arrived,” said Alex.
“Alex’s experience highlights a real problem that we hear about week in, week out,” said Dr James Partridge OBE, chief executive of Changing Faces. “We hear of people being thrown out of pubs and clubs when they’re completely sober but a mistake has been made. We’ve got a big job to do working with the hospitality industry to helpthem ensure all customers are made to feel welcome, regardless of their appearance."
*********************
Monday, July 27, 2015
Tuesday, July 21, 2015
MOEBIUS SYNDROME IN THE NEWS: UK VERSION
This is an amazing story. Good for you, Richard Savage. Read on:
****************
For years, Richard Savage suffered horrendous abuse about his looks.
He suffers from Moebius Syndrome, a rare neurological disorder which paralyses the facial muscles, affecting a person's looks and speech.
Throughout his life he has endured cruel taunts, being bullied at school, called 'retarded by a doctor' and even turned down for a job after the interviewer said he was 'too ugly.'
The insults eroded his self-esteem to such an extent that he began to retreat into himself, developing agoraphobia.
He became terrified of leaving the house, suffering panic attacks at the thought of going outside, and spent two entire years indoors, unable to work or socialise.
But after an intensive course of hypnotherapy, the 43-year-old has stepped out of his home for the first time since the summer of 2013.
Mr Savage, a trained chef who lives in Birmingham, said: 'Can you imagine living a life where you are frightened to go out the door?
'I never left my house. It was terrible. I had to get a doctor's note and wasn't able to work.
'I have a genetic condition which means I can't move the muscles in my face. It affects my speech.
'I was never able to fit in with society and at school I was badly bullied. People said I was retarded and ugly. I felt worthless.
'I became very dejected and withdrew. In my mind, leaving the house was too risky because almost every time I went outside I suffered prejudice.'
Moebius syndrome is a rare disorder present from birth, affecting the nerves that lead to the brain.
Those with the condition are unable to move their faces, meaning they can't smile, frown, suck, grimace or blink their eyes.It can also cause respiratory problems, difficulty swallowing, sleep disorders, weak upper body strength, and, as in Mr Savage's case, problems with speech.
While he suffered abuse his entire life, he says the most shocking example was when he was verbally abused by a doctor he went to see while studying at university.
He added: 'I was 22 when I went to see the doctor for a routine appointment.
'The first thing he said, the first comment he made, was that I was "retarded".
'He left the room, I sat there and waited and I knew instantly what was going on. It was prejudice.'
When the doctor came back into the room, he began pressing and moving Mr Savage's face, without asking.
Another time, he was turned down for a job as the interviewee said he was 'too ugly'.
He continued: 'I turned up in the room and sat in front of the panel.
'After all the questions, they came out in the end and said "We are so sorry, we can't accept you because, from our point of view, you are far too ugly".
'After that, I felt so small, I felt so intimidated and worthless. I was locked away for two years because I was so frightened to go out into society.'
He began to suffer panic attacks whenever he thought he had to leave the house, and so staying inside became a habit.
Mr Savage finally turned his life around after having home visits from a cognitive behavioural hypnotherapist.
He said: 'A friend suggested I try and get help with my agoraphobia so I had one two-hour session.
'I was very sceptical but I drifted off naturally, like a good night's sleep.
'It was like I had gone through a fog and there were no more worries, no more anxiety and no panicking.
'It is almost like you peel away years of anxiety and that is a big, dramatic change.'
He says leaving his house for the first time was 'amazing'.'I just walked out the front door and down the street. It was a small thing to do but a huge step for me,' he said.
'I am now more confident and I am more alert and aware. I was a nervous wreck before. I achieve more now.'
Mr Savage is now planning to write his childhood memoirs in a book to inspire others.
David Kilmurry, a hypnotherapist in Coventry who treated Mr Savage, said: 'Richard came out of the hypnosis session bright eyed and bubbly like a different person.
'Things dramatically improved. Since the session Richard has already told me that he would like to be an activist for discriminated people to help society to view people with differences as equal.
'I can vouch for him that he is extremely intelligent and articulate and in every way a beautiful person that deserves a chance to tell his story of darkness to light.
'I personally think that all of us can benefit and take strength from this gentleman's struggle. It is nothing short of biblical.'
***********************
****************
For years, Richard Savage suffered horrendous abuse about his looks.
He suffers from Moebius Syndrome, a rare neurological disorder which paralyses the facial muscles, affecting a person's looks and speech.
Throughout his life he has endured cruel taunts, being bullied at school, called 'retarded by a doctor' and even turned down for a job after the interviewer said he was 'too ugly.'
The insults eroded his self-esteem to such an extent that he began to retreat into himself, developing agoraphobia.
He became terrified of leaving the house, suffering panic attacks at the thought of going outside, and spent two entire years indoors, unable to work or socialise.
But after an intensive course of hypnotherapy, the 43-year-old has stepped out of his home for the first time since the summer of 2013.
Mr Savage, a trained chef who lives in Birmingham, said: 'Can you imagine living a life where you are frightened to go out the door?
'I never left my house. It was terrible. I had to get a doctor's note and wasn't able to work.
'I have a genetic condition which means I can't move the muscles in my face. It affects my speech.
'I was never able to fit in with society and at school I was badly bullied. People said I was retarded and ugly. I felt worthless.
'I became very dejected and withdrew. In my mind, leaving the house was too risky because almost every time I went outside I suffered prejudice.'
Moebius syndrome is a rare disorder present from birth, affecting the nerves that lead to the brain.
Those with the condition are unable to move their faces, meaning they can't smile, frown, suck, grimace or blink their eyes.It can also cause respiratory problems, difficulty swallowing, sleep disorders, weak upper body strength, and, as in Mr Savage's case, problems with speech.
While he suffered abuse his entire life, he says the most shocking example was when he was verbally abused by a doctor he went to see while studying at university.
He added: 'I was 22 when I went to see the doctor for a routine appointment.
'The first thing he said, the first comment he made, was that I was "retarded".
'He left the room, I sat there and waited and I knew instantly what was going on. It was prejudice.'
When the doctor came back into the room, he began pressing and moving Mr Savage's face, without asking.
Another time, he was turned down for a job as the interviewee said he was 'too ugly'.
He continued: 'I turned up in the room and sat in front of the panel.
'After all the questions, they came out in the end and said "We are so sorry, we can't accept you because, from our point of view, you are far too ugly".
'After that, I felt so small, I felt so intimidated and worthless. I was locked away for two years because I was so frightened to go out into society.'
He began to suffer panic attacks whenever he thought he had to leave the house, and so staying inside became a habit.
Mr Savage finally turned his life around after having home visits from a cognitive behavioural hypnotherapist.
He said: 'A friend suggested I try and get help with my agoraphobia so I had one two-hour session.
'I was very sceptical but I drifted off naturally, like a good night's sleep.
'It was like I had gone through a fog and there were no more worries, no more anxiety and no panicking.
'It is almost like you peel away years of anxiety and that is a big, dramatic change.'
He says leaving his house for the first time was 'amazing'.'I just walked out the front door and down the street. It was a small thing to do but a huge step for me,' he said.
'I am now more confident and I am more alert and aware. I was a nervous wreck before. I achieve more now.'
Mr Savage is now planning to write his childhood memoirs in a book to inspire others.
David Kilmurry, a hypnotherapist in Coventry who treated Mr Savage, said: 'Richard came out of the hypnosis session bright eyed and bubbly like a different person.
'Things dramatically improved. Since the session Richard has already told me that he would like to be an activist for discriminated people to help society to view people with differences as equal.
'I can vouch for him that he is extremely intelligent and articulate and in every way a beautiful person that deserves a chance to tell his story of darkness to light.
'I personally think that all of us can benefit and take strength from this gentleman's struggle. It is nothing short of biblical.'
***********************
Thursday, July 16, 2015
AWARENESS UPDATE: A REMINDER OF WHY WE NEED MORE OF IT...
Because look at what happened to my friend Alex Barker. He lives in Great Britain. Simply because of his physical condition, a pub decided he was drunk. But Alex has stood up for himself. You can see that here:
********************
A man with a facial palsy says he was refused service in a pub after staff mistook his symptoms for drunkenness.
Alex Barker, 43, from Coventry, has Moebius Syndrome, which means he cannot smile and slurs his speech.
He said he tried to explain his symptoms to the barwoman at the Cutty Sark pub in Falmouth, but she was unwilling to listen or apologise.
He said the experience made him upset, embarrassed and angry. The pub has refused to comment.
*********************
And here:
*********************
A disabled man was ordered to leave a Falmouth pub after a barmaid mistook his facial disfigurement for being drunk.
Holidaymaker Alex Barker, 43, had only drank one bottle of beer when he was booted out of the boozer on Saturday evening.
Staff at the Cutty Sark pub, in Falmouth, told the charity worker they could not serve him because he appeared to be "under the influence."
He suffers from Moebius Syndrome and facial palsy - meaning his face does not show expressions and his speech can appear slurred.
Mortified Alex was forced to leave the busy pub in front of shocked customers and went back to his hotel room feeling "humiliated".Today he urged people to be more aware of similar conditions to avoid the embarrassing incident from happening to anyone else.
Alex, from Coventry, said: "I went down to Falmouth at the weekend as I went to university there and thought it would be nice to revisit my old haunts.
"I went to one pub and had a beer no problem but when I went over the road to another a girl in her 20s behind the bar refused to serve me.
"She said I was too drunk and I had obviously had far too much. I couldn't believe it.
"I was just shocked into silence, I didn't know what to say - I only had one bottle of beer that was about 500ml.
"In 25 years I have never been refused a pint. I believe it was because I am disabled and my face didn't fit."
Humiliated Alex left the pub and went back to his hotel room but decided to return to the bar the next day to confront staff.
He added: "I made a hasty exit but that night I put something on Facebook and all my friends thought it was disgraceful.
"I went back the following day and asked them to explain themselves but at first the staff said the girl wasn't working and refused to talk to me.
"Eventually she appeared and I asked her to justify her actions.
"She said she didn't need to and had the right to refuse permission if someone if under the influence.
"She did say there may have been a misunderstanding but she was just doing her job.
"I understand mistakes are made but I didn't care for the attitude."
Alex volunteers part-time for Facial Palsy UK, a charity that supports people suffering with facial paralysis.
He added: "I just want to raise awareness of people who may not know about the condition.
"I also have mishapen hands but I live a happy, independent and fulfilling life.
"But it was quite embarrassing for me and could be for other people if they go through the same.
"It put a seed of doubt in my mind whether I should not go to places that I am fully entitled to go to.
"There's a nagging doubt but I don't want to change my life because of different attitudes.
"I just don't want it to happen to anyone else."
Dr James Partridge, chief executive of Changing Faces, a charity that supports people with conditions or injuries that affect their appearance, said the pub had to "face up to its responsibilities".
He added: "The pub's management and the wider hospitality and business community in Cornwall have a responsibility to make sure that everyone is made to feel welcome."
************************
And here, sad to say, is the no-apology apology from the woman who runs the pub:
*************************
The landlady of a Falmouth Pub at the centre of a row over refusing service to a disabled man has issued an apology, but still stands by her decision.
Jess Stunell, the landlady of the Cutty Sark, said in a statement that she wished to apologise to Alex Barker, who has Moebius Syndrome and facial palsy, and claims he was refused a drink after a barmaid mistook his disability for signs of drunkenness.
Mr Barker told press earlier in the week that he had only had one beer before going to the pub, and he left after being refused service, but when he decided to go back the next day and confront staff they were unapologetic.
However, Ms Stunell has said that she thought he was drunk before even seeing his face as she saw him stumble on the way into the pub, and that was when she looked at the bar staff and told them not to serve him.
She said: "They said 'you've had enough' and he said 'ok' and left."
Ms Stunell, said she has CCTV footage of Mr Barker in the pub, and also claims to have seen several pictures on Facebook of him drinking during the day.
She said: "He came in the next day to complain and claimed it was because of how he looked, and she replied it was simply because he had had enough, at which point he became quite loud and aggressive and "stormed off."
In a statement of apology, she wrote: "The Cutty Sark would like to apologise for any undue distress caused to Mr Barker on his visit.
"Alex stumbled on his way into the pub, after having a meal and alcohol at another establishment, and the decision was made to refuse service.
"There were a number of customers in the bar that day and an evaluation needed to be made considering the safety of both Alex and the other patrons.
"Staff have to make an instant decision over service, to ensure the safety of all customers based on their perception of the potential risk.
"The Cutty Sark has numerous customers with additional requirements and we aim to assist our customers in the best way we can.
"This was not out of any discrimination, but out of a genuine concern for the safety and welfare of all our customers.
"We operate a zero tolerance policy against discrimination of any kind and will continue to do so."
Since the story of the ban on Mr Barker went national, friends of Ms Stunnel say that she has received hate mail and been targetted on social media.
**************************
She should not be receiving any hate mail.
But this "apology" is rather shameful.
Still--kudos to Alex and to Changing Faces for standing up and speaking out on this. Discrimination must not be tolerated.
********************
A man with a facial palsy says he was refused service in a pub after staff mistook his symptoms for drunkenness.
Alex Barker, 43, from Coventry, has Moebius Syndrome, which means he cannot smile and slurs his speech.
He said he tried to explain his symptoms to the barwoman at the Cutty Sark pub in Falmouth, but she was unwilling to listen or apologise.
He said the experience made him upset, embarrassed and angry. The pub has refused to comment.
*********************
And here:
*********************
A disabled man was ordered to leave a Falmouth pub after a barmaid mistook his facial disfigurement for being drunk.
Holidaymaker Alex Barker, 43, had only drank one bottle of beer when he was booted out of the boozer on Saturday evening.
Staff at the Cutty Sark pub, in Falmouth, told the charity worker they could not serve him because he appeared to be "under the influence."
He suffers from Moebius Syndrome and facial palsy - meaning his face does not show expressions and his speech can appear slurred.
Mortified Alex was forced to leave the busy pub in front of shocked customers and went back to his hotel room feeling "humiliated".Today he urged people to be more aware of similar conditions to avoid the embarrassing incident from happening to anyone else.
Alex, from Coventry, said: "I went down to Falmouth at the weekend as I went to university there and thought it would be nice to revisit my old haunts.
"I went to one pub and had a beer no problem but when I went over the road to another a girl in her 20s behind the bar refused to serve me.
"She said I was too drunk and I had obviously had far too much. I couldn't believe it.
"I was just shocked into silence, I didn't know what to say - I only had one bottle of beer that was about 500ml.
"In 25 years I have never been refused a pint. I believe it was because I am disabled and my face didn't fit."
Humiliated Alex left the pub and went back to his hotel room but decided to return to the bar the next day to confront staff.
He added: "I made a hasty exit but that night I put something on Facebook and all my friends thought it was disgraceful.
"I went back the following day and asked them to explain themselves but at first the staff said the girl wasn't working and refused to talk to me.
"Eventually she appeared and I asked her to justify her actions.
"She said she didn't need to and had the right to refuse permission if someone if under the influence.
"She did say there may have been a misunderstanding but she was just doing her job.
"I understand mistakes are made but I didn't care for the attitude."
Alex volunteers part-time for Facial Palsy UK, a charity that supports people suffering with facial paralysis.
He added: "I just want to raise awareness of people who may not know about the condition.
"I also have mishapen hands but I live a happy, independent and fulfilling life.
"But it was quite embarrassing for me and could be for other people if they go through the same.
"It put a seed of doubt in my mind whether I should not go to places that I am fully entitled to go to.
"There's a nagging doubt but I don't want to change my life because of different attitudes.
"I just don't want it to happen to anyone else."
Dr James Partridge, chief executive of Changing Faces, a charity that supports people with conditions or injuries that affect their appearance, said the pub had to "face up to its responsibilities".
He added: "The pub's management and the wider hospitality and business community in Cornwall have a responsibility to make sure that everyone is made to feel welcome."
************************
And here, sad to say, is the no-apology apology from the woman who runs the pub:
*************************
The landlady of a Falmouth Pub at the centre of a row over refusing service to a disabled man has issued an apology, but still stands by her decision.
Jess Stunell, the landlady of the Cutty Sark, said in a statement that she wished to apologise to Alex Barker, who has Moebius Syndrome and facial palsy, and claims he was refused a drink after a barmaid mistook his disability for signs of drunkenness.
Mr Barker told press earlier in the week that he had only had one beer before going to the pub, and he left after being refused service, but when he decided to go back the next day and confront staff they were unapologetic.
However, Ms Stunell has said that she thought he was drunk before even seeing his face as she saw him stumble on the way into the pub, and that was when she looked at the bar staff and told them not to serve him.
She said: "They said 'you've had enough' and he said 'ok' and left."
Ms Stunell, said she has CCTV footage of Mr Barker in the pub, and also claims to have seen several pictures on Facebook of him drinking during the day.
She said: "He came in the next day to complain and claimed it was because of how he looked, and she replied it was simply because he had had enough, at which point he became quite loud and aggressive and "stormed off."
In a statement of apology, she wrote: "The Cutty Sark would like to apologise for any undue distress caused to Mr Barker on his visit.
"Alex stumbled on his way into the pub, after having a meal and alcohol at another establishment, and the decision was made to refuse service.
"There were a number of customers in the bar that day and an evaluation needed to be made considering the safety of both Alex and the other patrons.
"Staff have to make an instant decision over service, to ensure the safety of all customers based on their perception of the potential risk.
"The Cutty Sark has numerous customers with additional requirements and we aim to assist our customers in the best way we can.
"This was not out of any discrimination, but out of a genuine concern for the safety and welfare of all our customers.
"We operate a zero tolerance policy against discrimination of any kind and will continue to do so."
Since the story of the ban on Mr Barker went national, friends of Ms Stunnel say that she has received hate mail and been targetted on social media.
**************************
She should not be receiving any hate mail.
But this "apology" is rather shameful.
Still--kudos to Alex and to Changing Faces for standing up and speaking out on this. Discrimination must not be tolerated.
Wednesday, July 15, 2015
HEALTH UPDATE: HOW INSOMNIA THERAPY CAN HELP WITH OTHER PROBLEMS
Many people have trouble sleeping. Sleep problems are not confined to those with Moebius; that is a certainty. But persons with Moebius Syndrome can have special problems with sleep--some for example suffer from night terrors. So for anyone who struggles with sleep--just what can be done? Here are some ideas; from the Health section in today's NY Times:
**********************
**********************
It’s a Catch-22 that even those with a common cold experience: Illness disrupts sleep. Poor sleep makes the symptoms of the illness worse.
What’s true for a cold also holds for more serious conditions that co-occur with insomnia. Depression, post-traumatic stress disorder, alcohol dependence, fibromyalgia, cancer and chronic pain often give rise to insomnia, just as sleeplessness
exacerbates the symptoms of these diseases. Historically, insomnia was
considered a symptom of other diseases. Today it is considered an
illness in its own right and recognized as an amplifier of other mental and physical ailments. When a person is chronically tired, pain can be more painful, depression deeper, anxiety heightened.
What
should doctors address first, insomnia or the co-occurring condition?
How about both at the same time? A new study suggests that a therapy
that improves sleep also reduces symptoms of other illnesses that often
disrupt it.
The study published in JAMA Internal Medicine
examined the effect of cognitive behavioral therapy for insomnia in
patients with serious mental and physical conditions. As its name
suggests, C.B.T.-I. is a treatment that works through the mind. As I
wrote about a few weeks ago, the therapy treats insomnia without medications, combining good sleep hygiene
techniques with more consistent wake times, relaxation techniques and
positive sleep attitudes and thoughts. Several clinical trials have
shown that C.B.T.-I. provides as good or better relief
of symptoms of insomnia than prescription drugs, with improvements in
sleep that are more durable. C.B.T.-I. can usually be delivered
relatively inexpensively through an online course costing about $40.
Compared
with those who didn’t receive C.B.T.-I., patients who did increased the
time asleep in bed by about 12 percentage points, fell asleep about 25
minutes faster and decreased the amount of time awake in the middle of
the night by about 45 minutes, according to Jade Wu, lead study author
and a Boston University doctoral student in psychology.
The
study also found that slightly more than one in three patients who
received C.B.T.-I. recovered from insomnia, compared with only about one
in six in control groups who did not receive C.B.T.-I. As medical
treatments go, this is an exceedingly high cure rate. Reflecting its strong performance in clinical trials, C.B.T.-I. is recommended by the American Academy of Sleep Medicine as the first-line treatment for insomnia.
Analyzing data across 2,189 patients, collected in 37 randomized trials, the researchers found
that C.B.T.-I. is also helpful for those with chronic mental or
physical illnesses. The researchers found that when insomnia is treated
with C.B.T.-I., symptoms of some other illnesses abate, too, at least
somewhat. It was found to reduce alcohol use in alcoholics, decrease symptoms of depression, reduce severity of P.T.S.D. symptoms, alleviate fatigue in breast cancer patients and reduce chronic pain.
For those who are both chronically tired and chronically sick, the route to additional relief of both may be through the mind.
*****************************
Tuesday, July 14, 2015
ON PARENTING: "POSITIVE" THINGS WE SAY TO KIDS...THAT MIGHT NOT BE THE RIGHT THING TO SAY
This is a very interesting and challenging piece. I don't know that I agree with all of it, but it is worth considering. The keys to it: do we focus too much on performance...and not enough on learning? Do we focus so much on being positive...that we don't allow real feelings to be expressed? the piece is in today's Washington Post; it was written by the noted education author Alfie Kohn. Read on:
*********************
We live in a smiley-face, keep-your-chin-up, look-on-the-bright-side culture. At the risk of being labeled a professional party pooper, I’d like to suggest that accentuating the positive isn’t always a wise course of action where children are concerned. I say that not because I’ve joined the conservative chorus whose refrain is that kids today have it too damn easy and ought to be made to experience more failure (and show more “grit”).[1] Rather, my point is that some things that sound positive and upbeat turn out not to be particularly constructive.
Praise.
The most salient feature of a positive judgment is not that it’s positive but that it’s a judgment. And in the long run, people rarely thrive as a result of being judged. Praise is the mirror image of criticism, not its opposite. Both are ways of doing things to kids as opposed to working with them. Verbal rewards are often more about manipulating than encouraging — a form of sugar-coated control. The main practical effect of offering a reward, whether it’s tangible, symbolic, or verbal, is to provide a source of extrinsic motivation (for example, trying to please the rewarder), and this, according to a considerable body of research, tends to undermine intrinsic motivation (a commitment to the activity or value itself).
While “Good job!” may seem like a supportive thing to say, that support is actually made conditional on the child’s doing what we ask or impressing us. What kids most need from adults, apart from nonjudgmental feedback and guidance, is unconditional support: the antithesis of a patronizing pat on the head for having jumped through our hoops. The solution, therefore, isn’t as simple as praising children’s effort instead of their ability, because the problem isn’t a function of what’s being praised — or, for that matter, how often praise is offered — but of praise itself.[2]
Automatic reassurance.
Deborah Meier once remarked that if a child says one of her classmates doesn’t like her, we need to resist reassuring her that it’s not true and getting the classmate to confirm it; then we must ask ourselves what has led to this idea. Probably there is truth to the cry for help, and our refusal to admit it may simply lead the child to hide her hurt more deeply. Do we do too much reassuring – ‘It doesn’t hurt,’ ‘It’ll be okay’ – and not enough exploring, joining with the child’s queries, fears, thoughts?[3]
A reflexive tendency to say soothing things to children in distress may simply communicate that we’re not really listening to them. Perhaps we’re offering reassurance more because that’s what we need to say than because it’s what they need to hear.
Happiness as the primary goal.
How can we help children grow up to be happy? That’s an important question, but here’s another one: How can we help children grow up to be concerned about whether other people are happy? We don’t want our kids to end up as perpetually miserable social activists, but neither should we root for them to become so focused on their own well-being that they’re indifferent to other people’s suffering. Happiness isn’t a good thing if it’s purchased at the price of being unreflective, complacent, or self-absorbed.
Moreover, as the psychologist Ed Deci reminds us, anger and sadness are sometimes appropriate responses to things that happen to us (and around us). “When people want only happiness, they can actually undermine their own development,” he said, “because the quest for happiness can lead them to suppress other aspects of their experience. . . .The true meaning of being alive is not just to feel happy, but to experience the full range of human emotions.”[4]
***
And here are four specific cheerful-sounding utterances or slogans that I believe also merit our skepticism:
“High(er) expectations.”
This phrase, typically heard in discussions about educating low-income or minority students, issues from policy makers with all the thoughtfulness of a sneeze. It derives most of its appeal from a simplistic contrast with low expectations, which obviously no one prefers. But we need to ask some basic questions: Are expectations being raised to the point that students are more demoralized than empowered? Are these expectations being imposed on students rather than developed with them? And most fundamentally: High expectations to do what, exactly? Produce impressive scores on unimpressive tests?The school reform movement driven by slogans such as “tougher standards,” “accountability,” and “raising the bar” arguably lowers meaningful expectations insofar as it relies on dubious indicators of progress — thereby perpetuating a “bunch o’ facts” model of learning. Expecting poor children to fill in worksheets more accurately just causes them to fall farther behind affluent kids who are offered a more thoughtful curriculum. Indeed, as one study found, such traditional instruction may be associated with lower expectations on the part of their teachers.[5]
“Ooh, you’re so close!” (in response to a student’s incorrect answer).
My objection here is not, as traditionalists might complain, that we’re failing to demand absolute accuracy. Quite the contrary. The problem is that we’re more focused on getting students to produce right answers than on their understanding of what they’re doing. Even in math, one student’s right answer may not signify the same thing as another’s. The same is true of two wrong answers. A student’s response may have been only one digit off from the correct one, but she may have gotten there by luck (in which case she wasn’t really “close” in a way that matters). Conversely, a student who’s off by an order of magnitude may grasp the underlying principle but have made a simple calculation error.
“If you work hard, I’m sure you’ll get a better grade next time.”
Again, we may have intended to be encouraging, but the actual message is that what matters in this classroom isn’t learning but performance. It’s not about what kids are doing but how well they’re doing it. Decades’ worth of research has shown that these two emphases tend to pull in opposite directions. Thus, the relevant distinction isn’t between a good grade and a bad grade; it’s leading kids to focus on grades versus inviting them to engage with ideas.
Similarly, if we become preoccupied with effort as opposed to ability as the primary determinant of high marks, we miss the crucial fact that marks are inherently destructive. Like demands to “raise expectations,” a growth mindset isn’t a magic wand. In fact, it can distract us from the harmfulness of certain goals — and of certain ways of teaching and assessing — by suggesting that more effort, like more rigor, is all that’s really needed. Not only is it not sufficient; when the outcome is misconceived, it isn’t even always desirable.[6]Only Positive Attitudes Allowed Beyond This Point.”
I’ve come across this poster slogan in a number of schools, and each time I see it, my heart sinks. Its effect isn’t to create a positive atmosphere but to serve notice that the expression of negative feelings is prohibited: “Have a nice day . . . or else.” It’s a sentiment that’s informative mostly for what it tells us about the needs of the person who put up the poster. It might as well say “My Mental Health Is So Precarious That I Need All of You to Pretend You’re Happy.”
Kids don’t require a classroom that’s relentlessly upbeat; they require a place where it’s safe to express whatever they’re feeling, even if at the moment that happens to be sadness or fear or anger. Bad feelings don’t vanish in an environment of mandatory cheer — they just get swept under the rug where people end up tripping over them, so to speak. Furthermore, students’ “negativity” may be an entirely apt response to an unfair rule, an authoritarian environment, or a series of tasks that seem pointless. To focus on students’ emotions in order to manufacture a positive climate (or in the name of promoting “self-regulation” skills) is to pretend that the problem lies exclusively with their responses rather than with what we may have done that elicited them.[7]
NOTES
In fact, I challenge that position at some length in a new book called The Myth of the Spoiled Child (Boston: Da Capo Press, 2014).
For more on the problems with praise — and the research that supports this critique — see my books Unconditional Parenting (New York: Atria, 2005) and Punished by Rewards (Boston: Houghton Mifflin, 1993).
Deborah Meier, “For Safety’s Sake,” Educational Horizons 83 (2004): 59.
Edward L. Deci, Why We Do What We Do (New York: Grosset, 1995), p. 192.
Teachers in traditional classrooms of low-income kindergarteners “were more likely to expect less of students from families with discrepant values. . . [whereas] children in student-centered classrooms were less likely to be disadvantaged by low expectations based on teachers’ perceptions of parents’ value differences.” See Penny Hauser-Cram, Selcuk R. Sirin, and Deborah Stipek, “When Teachers’ and Parents’ Values Differ: Teachers’ Ratings of Academic Competence in Children from Low-Income Families,” Journal of Educational Psychology 95 (2003): 813-20.
For more on the distinction between a learning orientation and a performance (or achievement) orientation, see the research cited in my book, The Schools Our Children Deserve (Boston: Houghton Mifflin, 1999), chapter 2. I discuss grades in particular in “The Case Against Grades,” Educational Leadership, November 2011: 28-33.
Item number 7 is adapted from an article called “Bad Signs,” Kappa Delta Pi Record, Fall 2010: 4-9, which also takes a dim view of “No Whining” signs and inspirational posters.
****************
*********************
We live in a smiley-face, keep-your-chin-up, look-on-the-bright-side culture. At the risk of being labeled a professional party pooper, I’d like to suggest that accentuating the positive isn’t always a wise course of action where children are concerned. I say that not because I’ve joined the conservative chorus whose refrain is that kids today have it too damn easy and ought to be made to experience more failure (and show more “grit”).[1] Rather, my point is that some things that sound positive and upbeat turn out not to be particularly constructive.
Praise.
The most salient feature of a positive judgment is not that it’s positive but that it’s a judgment. And in the long run, people rarely thrive as a result of being judged. Praise is the mirror image of criticism, not its opposite. Both are ways of doing things to kids as opposed to working with them. Verbal rewards are often more about manipulating than encouraging — a form of sugar-coated control. The main practical effect of offering a reward, whether it’s tangible, symbolic, or verbal, is to provide a source of extrinsic motivation (for example, trying to please the rewarder), and this, according to a considerable body of research, tends to undermine intrinsic motivation (a commitment to the activity or value itself).
While “Good job!” may seem like a supportive thing to say, that support is actually made conditional on the child’s doing what we ask or impressing us. What kids most need from adults, apart from nonjudgmental feedback and guidance, is unconditional support: the antithesis of a patronizing pat on the head for having jumped through our hoops. The solution, therefore, isn’t as simple as praising children’s effort instead of their ability, because the problem isn’t a function of what’s being praised — or, for that matter, how often praise is offered — but of praise itself.[2]
Automatic reassurance.
Deborah Meier once remarked that if a child says one of her classmates doesn’t like her, we need to resist reassuring her that it’s not true and getting the classmate to confirm it; then we must ask ourselves what has led to this idea. Probably there is truth to the cry for help, and our refusal to admit it may simply lead the child to hide her hurt more deeply. Do we do too much reassuring – ‘It doesn’t hurt,’ ‘It’ll be okay’ – and not enough exploring, joining with the child’s queries, fears, thoughts?[3]
A reflexive tendency to say soothing things to children in distress may simply communicate that we’re not really listening to them. Perhaps we’re offering reassurance more because that’s what we need to say than because it’s what they need to hear.
Happiness as the primary goal.
How can we help children grow up to be happy? That’s an important question, but here’s another one: How can we help children grow up to be concerned about whether other people are happy? We don’t want our kids to end up as perpetually miserable social activists, but neither should we root for them to become so focused on their own well-being that they’re indifferent to other people’s suffering. Happiness isn’t a good thing if it’s purchased at the price of being unreflective, complacent, or self-absorbed.
Moreover, as the psychologist Ed Deci reminds us, anger and sadness are sometimes appropriate responses to things that happen to us (and around us). “When people want only happiness, they can actually undermine their own development,” he said, “because the quest for happiness can lead them to suppress other aspects of their experience. . . .The true meaning of being alive is not just to feel happy, but to experience the full range of human emotions.”[4]
***
And here are four specific cheerful-sounding utterances or slogans that I believe also merit our skepticism:
“High(er) expectations.”
This phrase, typically heard in discussions about educating low-income or minority students, issues from policy makers with all the thoughtfulness of a sneeze. It derives most of its appeal from a simplistic contrast with low expectations, which obviously no one prefers. But we need to ask some basic questions: Are expectations being raised to the point that students are more demoralized than empowered? Are these expectations being imposed on students rather than developed with them? And most fundamentally: High expectations to do what, exactly? Produce impressive scores on unimpressive tests?The school reform movement driven by slogans such as “tougher standards,” “accountability,” and “raising the bar” arguably lowers meaningful expectations insofar as it relies on dubious indicators of progress — thereby perpetuating a “bunch o’ facts” model of learning. Expecting poor children to fill in worksheets more accurately just causes them to fall farther behind affluent kids who are offered a more thoughtful curriculum. Indeed, as one study found, such traditional instruction may be associated with lower expectations on the part of their teachers.[5]
“Ooh, you’re so close!” (in response to a student’s incorrect answer).
My objection here is not, as traditionalists might complain, that we’re failing to demand absolute accuracy. Quite the contrary. The problem is that we’re more focused on getting students to produce right answers than on their understanding of what they’re doing. Even in math, one student’s right answer may not signify the same thing as another’s. The same is true of two wrong answers. A student’s response may have been only one digit off from the correct one, but she may have gotten there by luck (in which case she wasn’t really “close” in a way that matters). Conversely, a student who’s off by an order of magnitude may grasp the underlying principle but have made a simple calculation error.
“If you work hard, I’m sure you’ll get a better grade next time.”
Again, we may have intended to be encouraging, but the actual message is that what matters in this classroom isn’t learning but performance. It’s not about what kids are doing but how well they’re doing it. Decades’ worth of research has shown that these two emphases tend to pull in opposite directions. Thus, the relevant distinction isn’t between a good grade and a bad grade; it’s leading kids to focus on grades versus inviting them to engage with ideas.
Similarly, if we become preoccupied with effort as opposed to ability as the primary determinant of high marks, we miss the crucial fact that marks are inherently destructive. Like demands to “raise expectations,” a growth mindset isn’t a magic wand. In fact, it can distract us from the harmfulness of certain goals — and of certain ways of teaching and assessing — by suggesting that more effort, like more rigor, is all that’s really needed. Not only is it not sufficient; when the outcome is misconceived, it isn’t even always desirable.[6]Only Positive Attitudes Allowed Beyond This Point.”
I’ve come across this poster slogan in a number of schools, and each time I see it, my heart sinks. Its effect isn’t to create a positive atmosphere but to serve notice that the expression of negative feelings is prohibited: “Have a nice day . . . or else.” It’s a sentiment that’s informative mostly for what it tells us about the needs of the person who put up the poster. It might as well say “My Mental Health Is So Precarious That I Need All of You to Pretend You’re Happy.”
Kids don’t require a classroom that’s relentlessly upbeat; they require a place where it’s safe to express whatever they’re feeling, even if at the moment that happens to be sadness or fear or anger. Bad feelings don’t vanish in an environment of mandatory cheer — they just get swept under the rug where people end up tripping over them, so to speak. Furthermore, students’ “negativity” may be an entirely apt response to an unfair rule, an authoritarian environment, or a series of tasks that seem pointless. To focus on students’ emotions in order to manufacture a positive climate (or in the name of promoting “self-regulation” skills) is to pretend that the problem lies exclusively with their responses rather than with what we may have done that elicited them.[7]
NOTES
In fact, I challenge that position at some length in a new book called The Myth of the Spoiled Child (Boston: Da Capo Press, 2014).
For more on the problems with praise — and the research that supports this critique — see my books Unconditional Parenting (New York: Atria, 2005) and Punished by Rewards (Boston: Houghton Mifflin, 1993).
Deborah Meier, “For Safety’s Sake,” Educational Horizons 83 (2004): 59.
Edward L. Deci, Why We Do What We Do (New York: Grosset, 1995), p. 192.
Teachers in traditional classrooms of low-income kindergarteners “were more likely to expect less of students from families with discrepant values. . . [whereas] children in student-centered classrooms were less likely to be disadvantaged by low expectations based on teachers’ perceptions of parents’ value differences.” See Penny Hauser-Cram, Selcuk R. Sirin, and Deborah Stipek, “When Teachers’ and Parents’ Values Differ: Teachers’ Ratings of Academic Competence in Children from Low-Income Families,” Journal of Educational Psychology 95 (2003): 813-20.
For more on the distinction between a learning orientation and a performance (or achievement) orientation, see the research cited in my book, The Schools Our Children Deserve (Boston: Houghton Mifflin, 1999), chapter 2. I discuss grades in particular in “The Case Against Grades,” Educational Leadership, November 2011: 28-33.
Item number 7 is adapted from an article called “Bad Signs,” Kappa Delta Pi Record, Fall 2010: 4-9, which also takes a dim view of “No Whining” signs and inspirational posters.
****************
Monday, July 13, 2015
INSPIRATIONAL STORY OF THE DAY
The young man in the story below does not have Moebius; he has another rare condition--spina bifida. But we can learn from him. Read on:
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A 9-year-old boy with two conditions that affect his brain and spinal cord has not let either diagnosis or the 20 surgeries he’s had prevent him from dreaming big.
Tyler Bois, who was born with spina bifida and a Chiari malformation, a congenital defect in which the back parts of the brain slip into the spinal cord, underwent his first surgery at Children’s Hospital of Orange County to close the lesion on his back when he was just one day old, according to Boston Children’s Hospital.
“His surgeons there [Children’s Hospital of Orange County] performed his first six surgeries and saved his life,” Tyler’s mother, Amy, said in a news release. Tyler also underwent a tracheostomy at six months old to help him breathe and reduce pressure on his vocal cords.
“People don’t often say it, but the trace was a blessing,” Amy said in the news release. Tyler was able to eat by mouth, and the family, which also includes dad Steve, normalized it as best they could by encouraging everyday activities like swimming.
The Bois family relocated to Vermont when Tyler was 1 and transferred his care to Boston Children’s Spina Bifida Center, where his subsequent surgeries have taken place under the care of neurosurgeon Dr. Michael Scott and Dr. Ben War, neurosurgery director of the spina bifida clinic.
“Before we moved here, Dr. Scott and Tyler’s new team at Boston Children’s consulted his doctors in California. We felt like they knew him before they even met,” Amy said, according to the release.
When he was 3, Dr. Roger Nuss, an otolaryngologist, performed a three-surgery procedure to remove the trach and transfer cartilage from Tyler’s rib cage to enlarge his airway so he could breathe independently.
“Tyler is thriving. Every time I see him he’s breathing well without ventilation or oxygen, and his voice and speech have improved,” Nuss said in the release.
“The day Tyler’s trace was removed was the best day,” Amy said in the release. Tyler’s improvements didn’t stop there, as he started telling his parents he wanted to walk more and play with his friends.
The next step was for Tyler, who is getting ready for Cub Scout camp with his friends, to undergo a series of elective procedures with the goal of walking using forearm crutches and low-level braches.
Dr. Lawrence Karlin, an orthopedic surgeon at Boston Children's, has performed numerous surgeries on Tyler to correct club foot, hip realignment and tendon releases to help straighten his femur.
Tyler’s parents said that encouraging their son by reminding him they will help him achieve his goals and that they are all in it together helps with the recovery process.
“Dr. Karlin told me about a patient with spina bifida who walked down the aisle at her wedding. He said, ‘She made it that far because her mother pushed her when she needed it. You’re doing the same for Tyler. It will pay off in the end.’ That really made my day,” Amy said in the release.
*********************
********************
A 9-year-old boy with two conditions that affect his brain and spinal cord has not let either diagnosis or the 20 surgeries he’s had prevent him from dreaming big.
Tyler Bois, who was born with spina bifida and a Chiari malformation, a congenital defect in which the back parts of the brain slip into the spinal cord, underwent his first surgery at Children’s Hospital of Orange County to close the lesion on his back when he was just one day old, according to Boston Children’s Hospital.
“His surgeons there [Children’s Hospital of Orange County] performed his first six surgeries and saved his life,” Tyler’s mother, Amy, said in a news release. Tyler also underwent a tracheostomy at six months old to help him breathe and reduce pressure on his vocal cords.
“People don’t often say it, but the trace was a blessing,” Amy said in the news release. Tyler was able to eat by mouth, and the family, which also includes dad Steve, normalized it as best they could by encouraging everyday activities like swimming.
The Bois family relocated to Vermont when Tyler was 1 and transferred his care to Boston Children’s Spina Bifida Center, where his subsequent surgeries have taken place under the care of neurosurgeon Dr. Michael Scott and Dr. Ben War, neurosurgery director of the spina bifida clinic.
“Before we moved here, Dr. Scott and Tyler’s new team at Boston Children’s consulted his doctors in California. We felt like they knew him before they even met,” Amy said, according to the release.
When he was 3, Dr. Roger Nuss, an otolaryngologist, performed a three-surgery procedure to remove the trach and transfer cartilage from Tyler’s rib cage to enlarge his airway so he could breathe independently.
“Tyler is thriving. Every time I see him he’s breathing well without ventilation or oxygen, and his voice and speech have improved,” Nuss said in the release.
“The day Tyler’s trace was removed was the best day,” Amy said in the release. Tyler’s improvements didn’t stop there, as he started telling his parents he wanted to walk more and play with his friends.
The next step was for Tyler, who is getting ready for Cub Scout camp with his friends, to undergo a series of elective procedures with the goal of walking using forearm crutches and low-level braches.
Dr. Lawrence Karlin, an orthopedic surgeon at Boston Children's, has performed numerous surgeries on Tyler to correct club foot, hip realignment and tendon releases to help straighten his femur.
Tyler’s parents said that encouraging their son by reminding him they will help him achieve his goals and that they are all in it together helps with the recovery process.
“Dr. Karlin told me about a patient with spina bifida who walked down the aisle at her wedding. He said, ‘She made it that far because her mother pushed her when she needed it. You’re doing the same for Tyler. It will pay off in the end.’ That really made my day,” Amy said in the release.
*********************
Friday, July 10, 2015
GOOD ATTITUDE
Below is the kind of attitude we with Moebius need to have more often. In the case below, the woman in question is talking about body weight and shape; in our case, our focus is on how society is prejudicial against those with physical differences and those who cannot smile. But still--we need more attitudes like those of Rachel Taylor. Read on:
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Rachel Taylor turned tears into triumph recently in an Old Navy store.
On Friday, the Louisiana photographer posted a picture of herself wearing a flag tank top in an Old Navy dressing room to the company's Facebook page. In the post, Taylor thanks Old Navy for "having adorable clothes for all shapes & sizes" and describes what she says was an upsetting incident she witnessed in the store.
"Today I was shopping in Old Navy, standing in between a teenage girl and her mom," Taylor wrote. "The girl picked up a plus-size tank top, showed it to her mom and said, 'Look! Me and So-and-so can fit in this tank top!' Her mom laughed and said, 'Yeah, you could! That thing is huge!'
"I couldn't help it; I started crying," Taylor added.
She went on to say that the tears continued after her husband walked her out of the store, but she decided to go back and buy the tank top to wear for the Fourth of July, as she looked "fierce" in it.
"Be kind," the post concludes. "Think about others before you speak. And if someone hurts you, you have to move on."
The posting has been shared more than 11,000 times and received more than 236,000 likes. It moved Old Navy to respond on Facebook, "Rachel, you are amazing. We want to celebrate your fierce style by sending you a gift card. Please keep an eye out for a message from us!" Others have also applauded Taylor for her stance against fat-shaming.
But not everyone was blown away by Taylor's selfie. A few have questioned whether the incident actually happened, and some say it is much ado about nothing.
Taylor defended herself on Facebook, saying her posting was not an invitation to be criticized or an attempt to receive free merchandise. She merely wanted to "share my story with Old Navy because I love my new top and appreciate them having cute clothes in all sizes," she said.
"Now I'm refusing to delete it because people should know that they are not alone in their struggles, and even if they seem silly to someone else, their feelings are still valid," she wrote. "As my Mama always says, 'If you can't say anything nice, then don't say anything at all.' "
******************
**********************
Rachel Taylor turned tears into triumph recently in an Old Navy store.
On Friday, the Louisiana photographer posted a picture of herself wearing a flag tank top in an Old Navy dressing room to the company's Facebook page. In the post, Taylor thanks Old Navy for "having adorable clothes for all shapes & sizes" and describes what she says was an upsetting incident she witnessed in the store.
"Today I was shopping in Old Navy, standing in between a teenage girl and her mom," Taylor wrote. "The girl picked up a plus-size tank top, showed it to her mom and said, 'Look! Me and So-and-so can fit in this tank top!' Her mom laughed and said, 'Yeah, you could! That thing is huge!'
"I couldn't help it; I started crying," Taylor added.
She went on to say that the tears continued after her husband walked her out of the store, but she decided to go back and buy the tank top to wear for the Fourth of July, as she looked "fierce" in it.
"Be kind," the post concludes. "Think about others before you speak. And if someone hurts you, you have to move on."
The posting has been shared more than 11,000 times and received more than 236,000 likes. It moved Old Navy to respond on Facebook, "Rachel, you are amazing. We want to celebrate your fierce style by sending you a gift card. Please keep an eye out for a message from us!" Others have also applauded Taylor for her stance against fat-shaming.
But not everyone was blown away by Taylor's selfie. A few have questioned whether the incident actually happened, and some say it is much ado about nothing.
Taylor defended herself on Facebook, saying her posting was not an invitation to be criticized or an attempt to receive free merchandise. She merely wanted to "share my story with Old Navy because I love my new top and appreciate them having cute clothes in all sizes," she said.
"Now I'm refusing to delete it because people should know that they are not alone in their struggles, and even if they seem silly to someone else, their feelings are still valid," she wrote. "As my Mama always says, 'If you can't say anything nice, then don't say anything at all.' "
******************
Wednesday, July 8, 2015
I JUST THOUGHT THIS WAS INTERESTING DEPT: FIVE PHRASES TO AVOID
From the Huffington Post. Why avoid the phrases below? Because they signal you might be making a bad choice:
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Sometimes deep down, we're aware that the choice we're about to make isn't the best decision. Yet rather than change course, we offer excuses to justify what we're about to do.
Instead of preventing ourselves from heading down the wrong path -- or admitting we made a mistake -- we defensively attempt to rationalize our behavior. Ultimately, we keep digging ourselves deeper.
Although it sounds a bit ridiculous, everyone behaves impulsively, gives into immediate gratification, or overlooks risk sometimes. Here are five statements we try to use to justify our poor choices:
1. "I deserve to be happy."
Whether someone raises an eyebrow at a friend's latest love interest, or a business coach warns a client about taking on more debt, a reluctant listener often responds by saying, "But I deserve to be happy!" While you certainly deserve the right to pursue a happy, healthy lifestyle, this statement often gets thrown around by someone who is about to sabotage their chances of achieving long-term happiness.
When you find yourself demanding that you deserve happiness, make sure you aren't chasing fleeting feelings of happiness. Keeping your goals and values in mind can prevent you from exchanging momentary pleasure for long-term satisfaction.
2. "I'd rather beg for forgiveness than ask for permission."
When we're about the break the rules on purpose, or push the boundaries a bit too far, it's tempting to have this mindset. But if you really believe you're doing what's best, why would you need to ask for forgiveness? It's often a passive-aggressive way to avoid confrontation.
Thoughtfully consider the potential consequences of your behavior, including how it could damage a relationship, before you move forward. If you believe in something strongly enough, move forward with the confidence that there will be no need to fake an apology at a later date.
3. "You only live once."
Ironically, YOLO is usually uttered right before someone puts their life in jeopardy. Should we really jump off this cliff into the rocky water below? YOLO. It's also used to justify immediate gratification. Should I really eat a second piece of cake? YOLO.
A rich and full life requires a delicate balance between risk and long-term rewards. Calculate risk and take time to consider how this type of thinking could derail you over the long-term.
4. "I'm just being honest."
Sometimes, when called out on impolite and unkind words, people claim their insensitivity stems from their desire to be truthful. And while the truth really does hurt sometimes, there's no need to be overly harsh. Honesty doesn't have to come at the expense of someone else's feelings.
Before delivering criticism or negative feedback, balance your desire to be direct with the other person's right to be treated with respect. Whether you're masking your insecurity by putting someone else down, or you're lashing out because you're upset, you're disrespectful demeanor will speak more about your character than your claims of taking the moral high ground.
5. "I don't care what anybody thinks."
While it's healthy to avoid trying to please everyone, that doesn't mean you shouldn't care what anyone thinks. In fact, a complete disregard for anyone else's feelings is usually indicative of a personality disorder. The truth is, we should care what some people think.
While there's no need to take a poll to ensure your loved ones agree with all your decisions, if people express concerns about your decision-making, be willing to listen. Set aside your defenses and take a moment to hear about any potential pitfalls or risks you may be overlooking.
Amy Morin is a psychotherapist, keynote speaker, and the author of 13 Things Mentally Strong People Don't Do, a best-selling book that is being translated into more than 20 languages.
************************
**************************
Sometimes deep down, we're aware that the choice we're about to make isn't the best decision. Yet rather than change course, we offer excuses to justify what we're about to do.
Instead of preventing ourselves from heading down the wrong path -- or admitting we made a mistake -- we defensively attempt to rationalize our behavior. Ultimately, we keep digging ourselves deeper.
Although it sounds a bit ridiculous, everyone behaves impulsively, gives into immediate gratification, or overlooks risk sometimes. Here are five statements we try to use to justify our poor choices:
1. "I deserve to be happy."
Whether someone raises an eyebrow at a friend's latest love interest, or a business coach warns a client about taking on more debt, a reluctant listener often responds by saying, "But I deserve to be happy!" While you certainly deserve the right to pursue a happy, healthy lifestyle, this statement often gets thrown around by someone who is about to sabotage their chances of achieving long-term happiness.
When you find yourself demanding that you deserve happiness, make sure you aren't chasing fleeting feelings of happiness. Keeping your goals and values in mind can prevent you from exchanging momentary pleasure for long-term satisfaction.
2. "I'd rather beg for forgiveness than ask for permission."
When we're about the break the rules on purpose, or push the boundaries a bit too far, it's tempting to have this mindset. But if you really believe you're doing what's best, why would you need to ask for forgiveness? It's often a passive-aggressive way to avoid confrontation.
Thoughtfully consider the potential consequences of your behavior, including how it could damage a relationship, before you move forward. If you believe in something strongly enough, move forward with the confidence that there will be no need to fake an apology at a later date.
3. "You only live once."
Ironically, YOLO is usually uttered right before someone puts their life in jeopardy. Should we really jump off this cliff into the rocky water below? YOLO. It's also used to justify immediate gratification. Should I really eat a second piece of cake? YOLO.
A rich and full life requires a delicate balance between risk and long-term rewards. Calculate risk and take time to consider how this type of thinking could derail you over the long-term.
4. "I'm just being honest."
Sometimes, when called out on impolite and unkind words, people claim their insensitivity stems from their desire to be truthful. And while the truth really does hurt sometimes, there's no need to be overly harsh. Honesty doesn't have to come at the expense of someone else's feelings.
Before delivering criticism or negative feedback, balance your desire to be direct with the other person's right to be treated with respect. Whether you're masking your insecurity by putting someone else down, or you're lashing out because you're upset, you're disrespectful demeanor will speak more about your character than your claims of taking the moral high ground.
5. "I don't care what anybody thinks."
While it's healthy to avoid trying to please everyone, that doesn't mean you shouldn't care what anyone thinks. In fact, a complete disregard for anyone else's feelings is usually indicative of a personality disorder. The truth is, we should care what some people think.
While there's no need to take a poll to ensure your loved ones agree with all your decisions, if people express concerns about your decision-making, be willing to listen. Set aside your defenses and take a moment to hear about any potential pitfalls or risks you may be overlooking.
Amy Morin is a psychotherapist, keynote speaker, and the author of 13 Things Mentally Strong People Don't Do, a best-selling book that is being translated into more than 20 languages.
************************
Monday, July 6, 2015
AWARENESS UPDATES
First: a new law requires cameras be placed in classrooms serving students with disabilities upon request:
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In what’s believed to be a first, a new law in Texas will require schools to install cameras upon request in classrooms serving students with disabilities.
The law signed by Gov. Greg Abbott earlier this month mandates that school districts and open-enrollment charter schools in the state employ video cameras if they are requested by a parent, trustee or staff member.
Under the measure, such requests can only be made for self-contained classrooms and other environments where the majority of students are receiving special education services.
“We heard testimony from students with special needs and parents whose lives have been forever changed by mistreatment in the classroom,” state Sen. Eddie Lucio, Jr., who authored the legislation, told Disability Scoop. “It is my intention that the presence of cameras in these students’ classrooms will provide evidence in cases of abuse, and will also protect teachers who face wrongful accusations.”
According to the law, cameras are to be used exclusively “in order to promote student safety.” Cameras cannot be placed inside bathrooms or other areas where students change clothes, but should be able to record video and audio of all other areas of the classroom. The measure includes limits on who may view recordings and the circumstances in which such footage can be reviewed.
Several school districts and groups representing educators had opposed the bill, telling local media they had concerns about cost and the effectiveness of cameras in improving student safety.
Nonetheless, Abbott signed the legislation without comment.
The new law will take effect with the start of the 2016-2017 school year.
***********************
And: research finds that a rare speech disorder may affect up to 2/3 of kids with autism:
************************
New research suggests that an otherwise rare speech disorder may affect nearly two-thirds of kids with autism, a finding that’s prompting calls for greater screening.
The condition called apraxia is estimated to affect just one or two out of every 1,000 children, but a study finds that 64 percent of children with autism may also have the speech disorder.
“Children with apraxia have difficulty coordinating the use of their tongue, lips, mouth and jaw to accurately produce speech sounds, so that each time they say the same word, it comes out differently, and even their parents have difficulty understanding them,” said Cheryl Tierney, an associate professor of pediatrics at the Penn State College of Medicine, who led the study published online in the Journal of Developmental & Behavioral Pediatrics.
Researchers looked at a group of 30 kids ages 15 months to 5 years who were referred for evaluations due to concerns about speech, language or autism. Of the children initially diagnosed with autism, nearly 2 out of 3 also had apraxia, the study found. Meanwhile, among those first flagged with apraxia, 36.8 percent were also found to have autism.
The findings are significant, researchers said, because symptoms of autism and apraxia can both be improved with early intervention, but the techniques used to address the conditions are different, making accurate diagnosis critical.
Tierney said that based on the study findings children diagnosed with autism or apraxia should be screened for the other condition until the time they start talking.
******************
In what’s believed to be a first, a new law in Texas will require schools to install cameras upon request in classrooms serving students with disabilities.
The law signed by Gov. Greg Abbott earlier this month mandates that school districts and open-enrollment charter schools in the state employ video cameras if they are requested by a parent, trustee or staff member.
Under the measure, such requests can only be made for self-contained classrooms and other environments where the majority of students are receiving special education services.
“We heard testimony from students with special needs and parents whose lives have been forever changed by mistreatment in the classroom,” state Sen. Eddie Lucio, Jr., who authored the legislation, told Disability Scoop. “It is my intention that the presence of cameras in these students’ classrooms will provide evidence in cases of abuse, and will also protect teachers who face wrongful accusations.”
According to the law, cameras are to be used exclusively “in order to promote student safety.” Cameras cannot be placed inside bathrooms or other areas where students change clothes, but should be able to record video and audio of all other areas of the classroom. The measure includes limits on who may view recordings and the circumstances in which such footage can be reviewed.
Several school districts and groups representing educators had opposed the bill, telling local media they had concerns about cost and the effectiveness of cameras in improving student safety.
Nonetheless, Abbott signed the legislation without comment.
The new law will take effect with the start of the 2016-2017 school year.
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And: research finds that a rare speech disorder may affect up to 2/3 of kids with autism:
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New research suggests that an otherwise rare speech disorder may affect nearly two-thirds of kids with autism, a finding that’s prompting calls for greater screening.
The condition called apraxia is estimated to affect just one or two out of every 1,000 children, but a study finds that 64 percent of children with autism may also have the speech disorder.
“Children with apraxia have difficulty coordinating the use of their tongue, lips, mouth and jaw to accurately produce speech sounds, so that each time they say the same word, it comes out differently, and even their parents have difficulty understanding them,” said Cheryl Tierney, an associate professor of pediatrics at the Penn State College of Medicine, who led the study published online in the Journal of Developmental & Behavioral Pediatrics.
Researchers looked at a group of 30 kids ages 15 months to 5 years who were referred for evaluations due to concerns about speech, language or autism. Of the children initially diagnosed with autism, nearly 2 out of 3 also had apraxia, the study found. Meanwhile, among those first flagged with apraxia, 36.8 percent were also found to have autism.
The findings are significant, researchers said, because symptoms of autism and apraxia can both be improved with early intervention, but the techniques used to address the conditions are different, making accurate diagnosis critical.
Tierney said that based on the study findings children diagnosed with autism or apraxia should be screened for the other condition until the time they start talking.
Thursday, July 2, 2015
ON PARENTING: A MOM WHO SLOWLY FOUND HER WAY
This mom doesn't have a child with Moebius Syndrome; but she does have a child with special needs. And I just bet that some of you will be identify with her challenges, and get something from what she learned from them. Read on:
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“Your child’s diagnosis is fairly straightforward,” said Dr. Gabby, our developmental pediatrician, as she handed me a one-page report. It was a chilly gray morning, not long after my first child’s third birthday. The thin paper I held could have been a white cape to wrap around my neck, with a label permanently attached: ADHD (observations of anxiety, sensory processing disorder, maybe PTSD, not yet able to diagnose at such a young age).
I was now officially branded as a special needs parent, ready to blast off into the complicated tornado of treatment plans. I was relieved to have a more clearly defined word to describe our preschooler’s struggle and some explanation for the ungodly stress I’d been experiencing.
I had known for a while that our son was different. He had open-heart surgery as an infant, and afterwards had developed a life threatening arrhythmia treated with toxic medications. We’d spent a lot of time in hospitals. But when he reached 12 months, his heart had healed, and the doctors said he was healthy. I was seven months pregnant with our second boy, and my husband and I were ready to start a “normal” family life.
At 13 months, our boy began walking, and over my pregnant belly, I witnessed an alarming transformation: he became defiant, hyperactive, and highly sensitive around sounds, transitions, and certain environments. Just as my second son arrived, the chaos really began.
I tried to describe (or maybe validate) my new anxious life to friends and relatives, he throws objects at my infant, destroys everything destroyable, clears every surface, tantrums throughout the day. He runs from everywhere, from everything! I wasn’t sleeping. The stress chewed at my gut, pumping my reflexes to jolt when he moved. My eyes darted like radar watching for the next disaster. “He’s just a boy… I’m sure you’ll get the hang of it,” people replied before disappearing. (I read this as, “You’re a wimp, I’m sure you’ll toughen up one day.”)
With an infant in my arms, I ran after my unregulated toddler through playgrounds, past chatting moms sipping lattes, and I felt ashamed. Why could I not do better— like them?
I had no choice but to learn how to survive parenting my special kid. And in a nutshell, here’s how I found my way:
I admitted my child was different, and I needed help. I got rid of my mommy pride and called a local parenting center, then Easter Seals, then an occupational therapist, a psychotherapist, and eventually a developmental pediatrician. I told them everything. I learned that my son wouldn’t qualify for public services because he had no remaining physical disabilities, but private therapy might help.
I hired a nanny with special needs experience to help daily. I interviewed preschools and found a structured, Montessori program where he could attend five days a week. They said they understood his challenges.
I tried to become patient. I mean really patient. A clock lived inside of my child’s head that often broke or exploded if required to conform to my plans. I had to recognize my new time teller, letting go of the goal to reach the grocery store, the park, or the friend’s house on time. I needed to slow down my speech, my movements, and inhale diaper-scented air when my plans were suffocating. I had to become content sitting in the dark brown hallway by the garage knowing we might never make it to the car. I had to accept arriving late, with a barefoot fist-flying boy who had thrown his shoes at me in the car. When I was patient, my boy felt a little calmer, and I could see more clearly through the mayhem.
I learned quickly that finding good dependable help for a challenging child also takes patience. The day after my third C-section, I took the call in my hospital bed from the new preschool with my third baby in my arms. “He can’t come back tomorrow, or ever. He just doesn’t fit here,” they said. Six weeks later, our new nanny quit. The one after that lasted a couple of months. I had to cry, breathe, cry, breathe, talk to the therapist, and breathe.
I educated myself. I read books and articles (a great use of breastfeeding time) about my boy’s diagnosis and his behavioral and treatment options. I visited and called all sorts of professionals and schools. I tried altering his diet and using various supplements. I learned that creating daily routine, structure, and using behavioral reinforcements were essential. I searched for other parents with similar children, but found few. Later I learned that many of them were hiding in their homes or therapy offices trying to cope, or living in complete denial. (The well-dressed, well-behaved children and moms I had seen at the parks, stores and music classes could not relate to my world. At all.)
I stayed connected to (and in love with) my husband. My husband Lynn was working a stressful, full-time job, and I was at home parenting and trying to remain sane full time, so communication was critical. It would have been easy for us to grow apart. But he valued every bit of information I found about helping our boy. He called me often, coming home early when possible, taking days off when I was shaking with exhaustion. Lynn became my arms, my legs, and the sturdy platform upon which I remained upright. He loved me through the confusion, the exhaustion, and the isolation. I learned that marriages can grow stronger through big challenges.I didn’t hide. After experiencing countless embarrassing mommy moments with public tantrums, toddler aggression and more, I made a conscious decision to start wearing my new special needs parent cape proudly. I stopped expecting my son to fit in, and started educating others about his differences. If I hid, then my son would have to hide. If I hid, then I might miss all kinds of people and opportunities to help him. If I hid, I’d prevent educators and therapists from helping him effectively. If I hid, then I’d be demonstrating that special needs are shameful. So I started talking and writing about our struggles. And, lo and behold, other parents started talking too! I wasn’t so alone after all.
I recognized our limitations. When Type-A me stopped placing us in unrealistic (treacherous) situations, our lives got easier: I stopped visiting stores like Baby Gap where my shrieking, hyperactive boy grabbed hangers and threw merchandise; I started ordering clothes online. I stopped visiting crowded parks with unlatched gates where he would tantrum or run toward the busy parking lot; I went to quiet parks or stayed home. I stopped attending parties where he’d grab toys from confused toddlers before gobbling every sugar-filled item within reach; we met friends individually in quiet settings. Finally, we ended terrifying tantrums in planes and airports by ceasing most long distance travel. Friends and family members could travel to see us.
I captured snippits of time for me. I booked a sitter (or two) so Lynn and I could date weekly, and I occasionally escaped for a moms’ night out. I took my jogging shoes everywhere and found ways to run as often as possible, even if behind a double stroller with a crying child or two inside. I often joked that running was my anxiety medication. I escaped the house most every day, sometimes to acquire a latte or simply capture a nose full of fresh air. I’d try to be grateful for the peaceful moments— they were my treasures, no matter how tiny.
I admitted the journey will never end, and I embraced it. Moms have called me for advice just after receiving their child’s diagnosis with a disorder of some sort. And almost always they’ve asked in so many words if I could define exactly how long it takes for kids to be healed. I’ve explained that the challenges of a special needs child, as far as I can tell, do not end with any magical formula— not a medication, a therapist, a school, a church, or a cool device.
The peace has come when my eyes have simply looked into those of my boy’s, rather than squinting over him, trying to see the end to the journey. When I have pressed my feet firmly into the ground beside him, walking down with him into valleys, through deserts, and then upward, over smooth peaks— only then have I found healing.My son is now 9, and tonight he had a tantrum after dinner. I still don’t have perfect answers for how to help him (and believe me, I want them). But as I write this, I’m certain that my struggles to parent him have transformed me into a kinder, less judgmental, more patient, and more forgiving human being. I’m eternally grateful for the peaks and valleys we have traveled together, and for the blessing of being his mother.
Amy Aves Challenger writes and paints from her home in Fairfield, Connecticut, and is currently working on her first novel about a special needs boy and his family’s struggles and triumphs. You can follow her on Twitter @amychallenger.
************************
*********************
“Your child’s diagnosis is fairly straightforward,” said Dr. Gabby, our developmental pediatrician, as she handed me a one-page report. It was a chilly gray morning, not long after my first child’s third birthday. The thin paper I held could have been a white cape to wrap around my neck, with a label permanently attached: ADHD (observations of anxiety, sensory processing disorder, maybe PTSD, not yet able to diagnose at such a young age).
I was now officially branded as a special needs parent, ready to blast off into the complicated tornado of treatment plans. I was relieved to have a more clearly defined word to describe our preschooler’s struggle and some explanation for the ungodly stress I’d been experiencing.
I had known for a while that our son was different. He had open-heart surgery as an infant, and afterwards had developed a life threatening arrhythmia treated with toxic medications. We’d spent a lot of time in hospitals. But when he reached 12 months, his heart had healed, and the doctors said he was healthy. I was seven months pregnant with our second boy, and my husband and I were ready to start a “normal” family life.
At 13 months, our boy began walking, and over my pregnant belly, I witnessed an alarming transformation: he became defiant, hyperactive, and highly sensitive around sounds, transitions, and certain environments. Just as my second son arrived, the chaos really began.
I tried to describe (or maybe validate) my new anxious life to friends and relatives, he throws objects at my infant, destroys everything destroyable, clears every surface, tantrums throughout the day. He runs from everywhere, from everything! I wasn’t sleeping. The stress chewed at my gut, pumping my reflexes to jolt when he moved. My eyes darted like radar watching for the next disaster. “He’s just a boy… I’m sure you’ll get the hang of it,” people replied before disappearing. (I read this as, “You’re a wimp, I’m sure you’ll toughen up one day.”)
With an infant in my arms, I ran after my unregulated toddler through playgrounds, past chatting moms sipping lattes, and I felt ashamed. Why could I not do better— like them?
I had no choice but to learn how to survive parenting my special kid. And in a nutshell, here’s how I found my way:
I admitted my child was different, and I needed help. I got rid of my mommy pride and called a local parenting center, then Easter Seals, then an occupational therapist, a psychotherapist, and eventually a developmental pediatrician. I told them everything. I learned that my son wouldn’t qualify for public services because he had no remaining physical disabilities, but private therapy might help.
I hired a nanny with special needs experience to help daily. I interviewed preschools and found a structured, Montessori program where he could attend five days a week. They said they understood his challenges.
I tried to become patient. I mean really patient. A clock lived inside of my child’s head that often broke or exploded if required to conform to my plans. I had to recognize my new time teller, letting go of the goal to reach the grocery store, the park, or the friend’s house on time. I needed to slow down my speech, my movements, and inhale diaper-scented air when my plans were suffocating. I had to become content sitting in the dark brown hallway by the garage knowing we might never make it to the car. I had to accept arriving late, with a barefoot fist-flying boy who had thrown his shoes at me in the car. When I was patient, my boy felt a little calmer, and I could see more clearly through the mayhem.
I learned quickly that finding good dependable help for a challenging child also takes patience. The day after my third C-section, I took the call in my hospital bed from the new preschool with my third baby in my arms. “He can’t come back tomorrow, or ever. He just doesn’t fit here,” they said. Six weeks later, our new nanny quit. The one after that lasted a couple of months. I had to cry, breathe, cry, breathe, talk to the therapist, and breathe.
I educated myself. I read books and articles (a great use of breastfeeding time) about my boy’s diagnosis and his behavioral and treatment options. I visited and called all sorts of professionals and schools. I tried altering his diet and using various supplements. I learned that creating daily routine, structure, and using behavioral reinforcements were essential. I searched for other parents with similar children, but found few. Later I learned that many of them were hiding in their homes or therapy offices trying to cope, or living in complete denial. (The well-dressed, well-behaved children and moms I had seen at the parks, stores and music classes could not relate to my world. At all.)
I stayed connected to (and in love with) my husband. My husband Lynn was working a stressful, full-time job, and I was at home parenting and trying to remain sane full time, so communication was critical. It would have been easy for us to grow apart. But he valued every bit of information I found about helping our boy. He called me often, coming home early when possible, taking days off when I was shaking with exhaustion. Lynn became my arms, my legs, and the sturdy platform upon which I remained upright. He loved me through the confusion, the exhaustion, and the isolation. I learned that marriages can grow stronger through big challenges.I didn’t hide. After experiencing countless embarrassing mommy moments with public tantrums, toddler aggression and more, I made a conscious decision to start wearing my new special needs parent cape proudly. I stopped expecting my son to fit in, and started educating others about his differences. If I hid, then my son would have to hide. If I hid, then I might miss all kinds of people and opportunities to help him. If I hid, I’d prevent educators and therapists from helping him effectively. If I hid, then I’d be demonstrating that special needs are shameful. So I started talking and writing about our struggles. And, lo and behold, other parents started talking too! I wasn’t so alone after all.
I recognized our limitations. When Type-A me stopped placing us in unrealistic (treacherous) situations, our lives got easier: I stopped visiting stores like Baby Gap where my shrieking, hyperactive boy grabbed hangers and threw merchandise; I started ordering clothes online. I stopped visiting crowded parks with unlatched gates where he would tantrum or run toward the busy parking lot; I went to quiet parks or stayed home. I stopped attending parties where he’d grab toys from confused toddlers before gobbling every sugar-filled item within reach; we met friends individually in quiet settings. Finally, we ended terrifying tantrums in planes and airports by ceasing most long distance travel. Friends and family members could travel to see us.
I captured snippits of time for me. I booked a sitter (or two) so Lynn and I could date weekly, and I occasionally escaped for a moms’ night out. I took my jogging shoes everywhere and found ways to run as often as possible, even if behind a double stroller with a crying child or two inside. I often joked that running was my anxiety medication. I escaped the house most every day, sometimes to acquire a latte or simply capture a nose full of fresh air. I’d try to be grateful for the peaceful moments— they were my treasures, no matter how tiny.
I admitted the journey will never end, and I embraced it. Moms have called me for advice just after receiving their child’s diagnosis with a disorder of some sort. And almost always they’ve asked in so many words if I could define exactly how long it takes for kids to be healed. I’ve explained that the challenges of a special needs child, as far as I can tell, do not end with any magical formula— not a medication, a therapist, a school, a church, or a cool device.
The peace has come when my eyes have simply looked into those of my boy’s, rather than squinting over him, trying to see the end to the journey. When I have pressed my feet firmly into the ground beside him, walking down with him into valleys, through deserts, and then upward, over smooth peaks— only then have I found healing.My son is now 9, and tonight he had a tantrum after dinner. I still don’t have perfect answers for how to help him (and believe me, I want them). But as I write this, I’m certain that my struggles to parent him have transformed me into a kinder, less judgmental, more patient, and more forgiving human being. I’m eternally grateful for the peaks and valleys we have traveled together, and for the blessing of being his mother.
Amy Aves Challenger writes and paints from her home in Fairfield, Connecticut, and is currently working on her first novel about a special needs boy and his family’s struggles and triumphs. You can follow her on Twitter @amychallenger.
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Wednesday, July 1, 2015
MOEBIUS SYNDROME IN THE NEWS: AN UPDATE
Remember our young UK Moebius hero, Jacob Rowan? Here's an update on he, his family, and their fund-raising efforts:
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Two-year-old Jacob Rowan was born with Moebius Syndrome which prevents him from smiling or making facial expressions.
His older cousins, Matthew and Erin Roberts, and friend Bethany Molloy sold loom band bracelets and home baking at the St Eunan’s School Fayre last week in a bid to raise funds for the trust, which is funding vital research into the condition.
Also organising a raffle, the youngsters were given a range of prizes from Clydebank businesses including a sweet hamper by Samantha Sweet Creations, a free cut and blow dry from Linsay Hair, free spray tan from Glow by Danielle and a personalised frame from Jo from Picture Perfect.
Jacob’s mother Leanne Orr said: “The kids managed to raise £201.01 for Moebius Research Trust. We are so delighted with everyone’s efforts.”
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Two-year-old Jacob Rowan was born with Moebius Syndrome which prevents him from smiling or making facial expressions.
His older cousins, Matthew and Erin Roberts, and friend Bethany Molloy sold loom band bracelets and home baking at the St Eunan’s School Fayre last week in a bid to raise funds for the trust, which is funding vital research into the condition.
Also organising a raffle, the youngsters were given a range of prizes from Clydebank businesses including a sweet hamper by Samantha Sweet Creations, a free cut and blow dry from Linsay Hair, free spray tan from Glow by Danielle and a personalised frame from Jo from Picture Perfect.
Jacob’s mother Leanne Orr said: “The kids managed to raise £201.01 for Moebius Research Trust. We are so delighted with everyone’s efforts.”
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