Another reason why we must Always presume intelligence,even in the apparent absence of it.
By JOHN MCKENZIE
Feb. 19, 2008
Carly Fleischman has severe autism and is unable to speak a word. But thanks to years of expensive and intensive therapy, this 13-year-old has made a remarkable breakthroughan has severe autism and is unable to speak a word. But thanks to years of expensive and intensive therapy, this 13-year-old has made a remarkable breakthrough.
Two years ago, working with pictures and symbols on a computer keyboard, she started typing and spelling out words. The computer became her voice.
"All of a sudden these words started to pour out of her, and it was an exciting moment because we didn't realize she had all these words," said speech pathologist Barbara Nash. "It was one of those moments in my career that I'll never forget."
Then Carly began opening up, describing what it was like to have autism and why she makes odd noises or why she hits herself.
"It feels like my legs are on first and a million ants are crawling up my arms," Carly said through the computer.
Carly writes about her frustrations with her siblings, how she understands their jokes and asks when can she go on a date.
"We were stunned," Carly's father Arthur Fleischmann said. "We realized inside was an articulate, intelligent, emotive person that we had never met. This was unbelievable because it opened up a whole new way of looking at her." This is what Carly wants people to know about autism.
"It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can't talk or I act differently than them. I think people get scared with things that look or seem different than them." "Laypeople would have assumed she was mentally retarded or cognitively impaired. Even professionals labelled her as moderately to severely cognitively impaired. In the old days you would say mentally retarded, which means low IQ and low promise and low potential," Arthur Fleischman said.
Therapists say the key lesson from Carly's story is for families to never give up and to be ever creative in helping children with autism find their voice.
"If we had done what so many people told us to do years ago, we wouldn't have the child we have today. We would have written her off. We would have assumed the worst. We would have never seen how she could write these things —
how articulate she is, how intelligent she is," the grateful father added.
Video
"I asked Carly to come to my work to talk to speech pathologists and other therapists about autism," said Nash. "What would you like to tell them? She wrote, 'I would tell them never to give up on the children that they work with.' That kind of summed it up."
Carly had another message for people who don't understand autism.
"Autism is hard because you want to act one way, but you can't always do that. It's sad that sometimes people don't know that sometimes I can't stop myself and they get mad at me. If I could tell people one thing about autism it would be that I don't want to be this way. But I am, so don't be mad. Be understanding."
# # #
Saturday, February 23, 2008
Thursday, December 13, 2007
Do you believe in miracles?
I do. I do. I do believe in miracles. And this year, I got one for Christmas at a time when our family needed it most.
Last week, my son painted the picture you see posted above. As far as I know, he had never picked up a paintbrush before, much less exercised such skill with paints.
For any child, I'd find the painting remarkable, but this child, this budding artist too soon to become a young man, also happens to have autism. Until recently, his education has been erected on a long line of "can't" and "will never." That's the way it is in Florida--which is why we're dropping everything and leaving,even if that move breaks us financially.
If you're a doctor, teacher, therapist, or any other person interacting with persons with autism, and you believe that those on the spectrum--even the severely affected--are without hope, value, and depth of emotion, then I beg you to think again. As you approach these amazing human beings in your work, please strive to keep your "cants" and "will nevers" to yourself. Dare to presume intelligence, even in the apparent absence of it.
I have two sons with autism, and a daughter teetering on the edge. Because of them, I believe in miracles. I want you to know that my children aren't a curse. Their autism is not a scourge to be erased from the face of the planet. They aren't a hardship, although some days I moan and whine because their struggles overwhelm me, and I am terrified what will become of their lives when I am gone.
Those daily struggles are seldom about them as human beings, or their autism. They are instead centered on the battles involved in jousting with....well, educators, politicians, and health care professionals who just can't...or perhaps won't...see beyond the DSM lV to discover the capabilities of the person behind the label.
As the years have ticked by, I have come to see that these children, as strange, complex and maddening as they are, are perfect just as they came to me. They have filled my life, my heart and my dreams for the future in ways I never dreamed possible. Because of them, this world is a better place.
If you have looked at the picture my son painted, and you still don't understand why we must presume intelligence, even in the apparent absence of it, and you still can't see how important it is to leave a space open for miracles in approaching this population, then I beg you to consider another career.
This Christmas I am taking time to thank God for my children, and the little chain of miracles that brought them into my life. I hope you will join me.
May miracles breath life into your Christmas season as they have mine. May you also come to believe in miracles. Because, you see, miracles don't discriminate. They believe in all of God's children. Even the ones with autism.
Merry Christmas.
Friday, September 28, 2007
The Naked Truth
100 Women Get Naked In The Name Of Autism
September 24th, 2007 by Kerry
In Sections: News
A child or adult diagnosed with an autistic spectrum disorder will have challenges in the same 3 developmental areas.
Autism is usually diagnosed in a child before they are 3 years old so when your child is born you don’t know they are autistic because it does not have any physical symptoms. It is called the ‘autistic spectrum’ because you can be affected by these difficulties to various degrees from mild to severe.
The areas of difficulty are :
1. Communication
2. Social interaction and
3. Imagination
Which are sometimes called the ‘triad of impairments’.
My son who has just turned 4 in July has a form of Autism but he has not yet been diagnosed properly because there are so many types of it out there. My son has communication difficulties as he can not yet talk which does affect his social interaction with other children but this has not stopped him starting mainstream school this September and all the children are really nice to him which is great and with his one to one support I know he will develop at his own pace but alongside other children his age that except him for who he is.
The Autistic spectrum is very broad. You may meet a person with Downs syndrome with autistic tendencies or a grown man or woman with a family who only received a diagnosis in their adult life. You can be mildly or severely affected by all of the areas described in the triad, or have more difficulty in one area, and less in others. Therefore every person on the autistic spectrum is unique with their own very specific challenges abilities and gifts.
The amount of people diagnosed with autism has in the last 20 years gone up from 1 in 10,000 to 1 in 150. That is a huge increase and it’s prompted a debate and extensive research to determine why there is such a dramatic increase in such a short length of time. Some say it is down to doctors being better able to make a diagnosis.
There is of course the MMR debate and some say that there is a clear link between diet and nutrition and the increased serge of autism. Others say there is a Genetic link.
Here is one story about a delightful little girl called Rosie who is just 5 years old and is affected by severe autism requiring a one-to-one, intensive education program that’s specially designed for her needs.
This of course costs money, and her family and friends have been fundraising in a variety of spectacular ways.
To raise money for Rosie a campaign was launched to get 100 women to pose naked in a field forming the word AUTISM for the front cover of the calendar. By the end of the first week they had 78 women signed up.
They have had 3,000 calendars printed, and if they sell all of them they will raise £26,000 for Rosie, and there fundraising burden will be lifted for nearly 2 years.
Please buy this calendar today, and help change the life of our wonderful little girl.
Check out the clip below
To purchase one of these calendars and to find out more click here
September 24th, 2007 by Kerry
In Sections: News
A child or adult diagnosed with an autistic spectrum disorder will have challenges in the same 3 developmental areas.
Autism is usually diagnosed in a child before they are 3 years old so when your child is born you don’t know they are autistic because it does not have any physical symptoms. It is called the ‘autistic spectrum’ because you can be affected by these difficulties to various degrees from mild to severe.
The areas of difficulty are :
1. Communication
2. Social interaction and
3. Imagination
Which are sometimes called the ‘triad of impairments’.
My son who has just turned 4 in July has a form of Autism but he has not yet been diagnosed properly because there are so many types of it out there. My son has communication difficulties as he can not yet talk which does affect his social interaction with other children but this has not stopped him starting mainstream school this September and all the children are really nice to him which is great and with his one to one support I know he will develop at his own pace but alongside other children his age that except him for who he is.
The Autistic spectrum is very broad. You may meet a person with Downs syndrome with autistic tendencies or a grown man or woman with a family who only received a diagnosis in their adult life. You can be mildly or severely affected by all of the areas described in the triad, or have more difficulty in one area, and less in others. Therefore every person on the autistic spectrum is unique with their own very specific challenges abilities and gifts.
The amount of people diagnosed with autism has in the last 20 years gone up from 1 in 10,000 to 1 in 150. That is a huge increase and it’s prompted a debate and extensive research to determine why there is such a dramatic increase in such a short length of time. Some say it is down to doctors being better able to make a diagnosis.
There is of course the MMR debate and some say that there is a clear link between diet and nutrition and the increased serge of autism. Others say there is a Genetic link.
Here is one story about a delightful little girl called Rosie who is just 5 years old and is affected by severe autism requiring a one-to-one, intensive education program that’s specially designed for her needs.
This of course costs money, and her family and friends have been fundraising in a variety of spectacular ways.
To raise money for Rosie a campaign was launched to get 100 women to pose naked in a field forming the word AUTISM for the front cover of the calendar. By the end of the first week they had 78 women signed up.
They have had 3,000 calendars printed, and if they sell all of them they will raise £26,000 for Rosie, and there fundraising burden will be lifted for nearly 2 years.
Please buy this calendar today, and help change the life of our wonderful little girl.
Check out the clip below
To purchase one of these calendars and to find out more click here
Friday, September 14, 2007
I do, I do, I do believe in miracles...
Too beautiful for words, a story of promise, hope, and validating. A must watch.
Saturday, September 01, 2007
Wednesday, June 06, 2007
Changing the World One Word at a Time
Those of you who know me at all understand that there are two subjects in this world that are near and dear to my heart. My children, who have Autism and related disorders and writing. Yes, in that order. So when the two events come together to benefit my children's peers, my head snaps to attention. When my first son was diagnosed with autism, the rate was .5 in 10,000 children. Today, that rate is recognized by the CDC as 1 in 150.
In most states, medical insurance does not cover the only therapies proven to improve autism's lifelong outlook. In most states, medical insurers incorrectly classify autism as a "mental disorder" in order to sharply cap benefits. This means it is left to families to fund their children's treatment at an average cost of 50 thousand dollars per year.
As I cannot personally attend the event listed below, I am donating all proceeds from my book Turn Around, Bright Eyes: Snapshots from a Voyage out of Autism's Silence, and my Amazon short, Imprint in the Ice to Autism One for the next six months. It's not a lot, but since I'm broke from providing for my children's overwhelming therapeutic needs, this and my big mouth is all I've got to help make a difference. :)
~
Writers Reading on Autism: Tales of The "Fastest Evolving Disorder In
Medical Science"
By Barbara Fischkin on the Huffington Post Blog.
http://tinyurl.com/2dvvcp
The First Annual Writers on Autism reading will be held in New York
City this week on Thursday, June 7, at 7p.m. at the Lifespire Education and
Conference Center on the third floor of the Empire State Building.
Eight "diverse" -- and this reading may give that term new meaning --
writers, both accomplished and up-and-coming, will read from their published
and unpublished works which are either about autism or of importance to the
autism community. Four mothers of autistic individuals -- representing a
total of eight sons and daughters on the autism spectrum -- will read. Two
individuals who are on the spectrum themselves will also read.
With one in 150 individuals now being diagnosed with autism, those of
us who have autism -- or who are relatives or teachers or friends or
therapists or doctors of individuals with autism -- are a historic community
whether we like being lumped together or not.
Perhaps one of our responsibilities as members of that community is to
make sure that there is a body of literature that illuminates who we are: A
compilation of our very-true and not-entirely-true tales, our controversies,
our novels and short stories, our tall and short tales, our hopes, myths and
miracles.
A body of work, in short, to help those who come after us understand
us.
Those of us who are writers can do this by writing and by reading our
works. Those of us who are readers can do this by listening, asking
questions and supporting the writing of autism by purchasing books by those
who have published them.
We have, as they say in show business, a great line-up.
* Kim Stagliano, who blogs here frequently and is writing an autism
novel. She is the mother of three girls with autism and is planning on
reading her essay "Crapisode," a rendition of life with autism now
considered a classic in the community.
* John Robison whose new memoir, Look Me in the Eye: My Life with
Asperger's, is sure to be a bestseller in the fall. He is also Augusten
Burroughs' brother and writes about life in that well-known family from his
own perspective.
* Sheila Kohler, a beloved, respected and renowned New York City
novelist who will read a real-life tale about being the parent of a disabled
young woman. Sheila Kohler's latest novel is Bluebird, The Invention of
Happiness.
* Landon J. Napoleon, author of the classic autism novel ZigZag, in
which a young man with autism is a protagonist who defies the stereotypes
and whose every emotion we feel ourselves. A book ahead of its time and a
worthy companion to The Curious Incident of the Dog in Nighttime.
* Michele Pierce Burns, whose forthcoming book, I Love Everything
About You, was inspired by her son Danson Mandela Wambua, 8, who has autism.
Many will surely remember the writer in her days as a young actress on The
Cosby Show. More recently she has written for Essence and Ebony , has
appeared in the Autism Speaks documentary, Autism Every Day.
* Michele Iallonardi, the mother of three boys with autism and a
journalist who has written for The Autism Perspective (TAP) magazine, Autism
Spectrum Quarterly and Exceptional Parent. She was also in Autism Every Day.
* Rachel Kaplan, a matriculating student at Hofstra University, who
has autism and is traditionally nonverbal. As a graduate of Locust Valley
High School on Long Island she won a coveted writing award and, as an
acknowledged pioneer in the practice of facilitated communication, she now
types independently
* I will read too, either from my autism novel, Confidential Sources,
or from my nonfiction work-in-progress: Dan in the World: One of the First
Victims of the Autism Epidemic Grows Up, Moves On and Moves Out.
Please come. The event is free and open to the public. No RSVPs are
required.
For more about this event please listen to Maverick Mama on
Autismone.org Internet Radio.
In most states, medical insurance does not cover the only therapies proven to improve autism's lifelong outlook. In most states, medical insurers incorrectly classify autism as a "mental disorder" in order to sharply cap benefits. This means it is left to families to fund their children's treatment at an average cost of 50 thousand dollars per year.
As I cannot personally attend the event listed below, I am donating all proceeds from my book Turn Around, Bright Eyes: Snapshots from a Voyage out of Autism's Silence, and my Amazon short, Imprint in the Ice to Autism One for the next six months. It's not a lot, but since I'm broke from providing for my children's overwhelming therapeutic needs, this and my big mouth is all I've got to help make a difference. :)
~
Writers Reading on Autism: Tales of The "Fastest Evolving Disorder In
Medical Science"
By Barbara Fischkin on the Huffington Post Blog.
http://tinyurl.com/2dvvcp
The First Annual Writers on Autism reading will be held in New York
City this week on Thursday, June 7, at 7p.m. at the Lifespire Education and
Conference Center on the third floor of the Empire State Building.
Eight "diverse" -- and this reading may give that term new meaning --
writers, both accomplished and up-and-coming, will read from their published
and unpublished works which are either about autism or of importance to the
autism community. Four mothers of autistic individuals -- representing a
total of eight sons and daughters on the autism spectrum -- will read. Two
individuals who are on the spectrum themselves will also read.
With one in 150 individuals now being diagnosed with autism, those of
us who have autism -- or who are relatives or teachers or friends or
therapists or doctors of individuals with autism -- are a historic community
whether we like being lumped together or not.
Perhaps one of our responsibilities as members of that community is to
make sure that there is a body of literature that illuminates who we are: A
compilation of our very-true and not-entirely-true tales, our controversies,
our novels and short stories, our tall and short tales, our hopes, myths and
miracles.
A body of work, in short, to help those who come after us understand
us.
Those of us who are writers can do this by writing and by reading our
works. Those of us who are readers can do this by listening, asking
questions and supporting the writing of autism by purchasing books by those
who have published them.
We have, as they say in show business, a great line-up.
* Kim Stagliano, who blogs here frequently and is writing an autism
novel. She is the mother of three girls with autism and is planning on
reading her essay "Crapisode," a rendition of life with autism now
considered a classic in the community.
* John Robison whose new memoir, Look Me in the Eye: My Life with
Asperger's, is sure to be a bestseller in the fall. He is also Augusten
Burroughs' brother and writes about life in that well-known family from his
own perspective.
* Sheila Kohler, a beloved, respected and renowned New York City
novelist who will read a real-life tale about being the parent of a disabled
young woman. Sheila Kohler's latest novel is Bluebird, The Invention of
Happiness.
* Landon J. Napoleon, author of the classic autism novel ZigZag, in
which a young man with autism is a protagonist who defies the stereotypes
and whose every emotion we feel ourselves. A book ahead of its time and a
worthy companion to The Curious Incident of the Dog in Nighttime.
* Michele Pierce Burns, whose forthcoming book, I Love Everything
About You, was inspired by her son Danson Mandela Wambua, 8, who has autism.
Many will surely remember the writer in her days as a young actress on The
Cosby Show. More recently she has written for Essence and Ebony , has
appeared in the Autism Speaks documentary, Autism Every Day.
* Michele Iallonardi, the mother of three boys with autism and a
journalist who has written for The Autism Perspective (TAP) magazine, Autism
Spectrum Quarterly and Exceptional Parent. She was also in Autism Every Day.
* Rachel Kaplan, a matriculating student at Hofstra University, who
has autism and is traditionally nonverbal. As a graduate of Locust Valley
High School on Long Island she won a coveted writing award and, as an
acknowledged pioneer in the practice of facilitated communication, she now
types independently
* I will read too, either from my autism novel, Confidential Sources,
or from my nonfiction work-in-progress: Dan in the World: One of the First
Victims of the Autism Epidemic Grows Up, Moves On and Moves Out.
Please come. The event is free and open to the public. No RSVPs are
required.
For more about this event please listen to Maverick Mama on
Autismone.org Internet Radio.
Sunday, February 11, 2007
Dreams Don't Die, They Simply Evolve
As the mother of two boys with autism, I sometimes tire of hearing about dashed hopes and broken dreams. While the struggles that families such as mine face are painfully real, and should never be trivialized, joy has not forsaken us.
Neither has hope.
Those of you who have kept in touch with me since the release of my book, "Turn Around, Bright Eyes", know that I have always dreamed of writing fiction. However, having two boys with such serious diagnoses gave me a million wonderful reasons to tweak that dream a little.
It only made sense to me, as I realized how unprepared the world was to receive children like my sons, that I would use my only God-given talent to help pave the way for a good future for my children and their peers. I turned to nonfiction, all of it autism related.
I can honestly say that I've never regretted my choice to write "for the cause" for one moment.
There is no substitute for effective advocacy and advancing awareness, and I hope that I have managed to contribute, in some small way, to the enrichment of the lives of persons with autism.
As my beautiful boys have grown, and my understanding of the children they are has evolved, and as many of the barriers in their lives have come crashing down, I have found myself turning back to my original dream--to write (publishable) fiction.
But the strangest thing has happened. I've changed as a writer. These days, when I sit down at my keyboard and allow myself to dream, people with differences invariably populate the landscapes in my imagination. While such diverse characters aren't often the stuff of block-busting best sellers, I must believe that there is a place for them in mainstream fiction.
Today, in a small way, my vision for creating compelling stories that positively portray persons with autism and the families who love them came true with the publication of my Amazon short, "Imprint in the Ice".
According to William Stillman, author of Autism and the God Connection, "The poignant prose with which Liane Gentry Skye crafts her uncommon love story makes Imprint in the Ice a vignette about not only the universality of love but the inextinguishable bonds we forge with one another no matter the variation of our human experience."
I hope you will choose to read this story, which began as a waking dream for a brighter future for my children--for all of our children. I hope that the characters move into your heart and allow you to experience autism in a new and beautiful way.
In this small way, perhaps I can show the mothers and the fathers who wonder if they can really go on for one more day that saying "no, not now" to our personal dreams doesn't mean "no, never."
Most of all, I hope to bring you a really good read, because when it comes to fiction, I must always remember that a compelling story is everything.
Allow love to rule in your lives,
Liane
Neither has hope.
Those of you who have kept in touch with me since the release of my book, "Turn Around, Bright Eyes", know that I have always dreamed of writing fiction. However, having two boys with such serious diagnoses gave me a million wonderful reasons to tweak that dream a little.
It only made sense to me, as I realized how unprepared the world was to receive children like my sons, that I would use my only God-given talent to help pave the way for a good future for my children and their peers. I turned to nonfiction, all of it autism related.
I can honestly say that I've never regretted my choice to write "for the cause" for one moment.
There is no substitute for effective advocacy and advancing awareness, and I hope that I have managed to contribute, in some small way, to the enrichment of the lives of persons with autism.
As my beautiful boys have grown, and my understanding of the children they are has evolved, and as many of the barriers in their lives have come crashing down, I have found myself turning back to my original dream--to write (publishable) fiction.
But the strangest thing has happened. I've changed as a writer. These days, when I sit down at my keyboard and allow myself to dream, people with differences invariably populate the landscapes in my imagination. While such diverse characters aren't often the stuff of block-busting best sellers, I must believe that there is a place for them in mainstream fiction.
Today, in a small way, my vision for creating compelling stories that positively portray persons with autism and the families who love them came true with the publication of my Amazon short, "Imprint in the Ice".
According to William Stillman, author of Autism and the God Connection, "The poignant prose with which Liane Gentry Skye crafts her uncommon love story makes Imprint in the Ice a vignette about not only the universality of love but the inextinguishable bonds we forge with one another no matter the variation of our human experience."
I hope you will choose to read this story, which began as a waking dream for a brighter future for my children--for all of our children. I hope that the characters move into your heart and allow you to experience autism in a new and beautiful way.
In this small way, perhaps I can show the mothers and the fathers who wonder if they can really go on for one more day that saying "no, not now" to our personal dreams doesn't mean "no, never."
Most of all, I hope to bring you a really good read, because when it comes to fiction, I must always remember that a compelling story is everything.
Allow love to rule in your lives,
Liane
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