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.

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

I do, I do, I do believe in miracles...

Too beautiful for words, a story of promise, hope, and validating. A must watch.

Rock on, baby

Sometimes a person just has to stim

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.

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

Full Spectrum's Best of the Best, Entry #1

Aside from being the first entry on our Full Spectrum 2007 "Best of the Best" list of autism friendly products and services, the odd looking device pictured above is known as the Gaiam Balance Ball Chair

A standard, 52 cm. balance ball is safely housed in a durable, plastic chair frame. Well-mounted casters make moving the ball from setting to setting simple, and allow the child another form of unobtrusive and acceptable wiggle room.

In sensory integration focused classrooms and occupational therapy settings, the balance ball chair is also called the "ball chair" or "sitting ball". Teachers who have first hand experience with students using the balance ball chair report that this wiggle friendly replacement for the standard, hard-backed school seating is certainly worth the "old college try" with fidget prone students.

Implementing the device to a student who has extreme difficulty sitting still long enough to tend to tasks could potentially delay or even circumvent more intrusive interventions such as prescription medications. I know it saved one of my children from a seemingly inevitable prescription for Ritalin.

To fully reap the benefit of the chair's benefits, all the student need do is sit on it. His body will naturally do the rest. Designed around the concept of "active sitting", the student who sits in this chair must spend a substantial amount of energy in simply staying centered and upright.

For the child with autism or another sensory integration dysfunction, the chair provides just enough sensory feedback to allow the student to better gain control of their motor facilities. The chair also addresses the tendency of the developmentally disabled to experience low tone in the musculature of the torso and spinal erectors. A student better in control of sensory challenges is simply more comfortable inside of his own skin. The struggling student becomes more able to tend to task.

For our son, who has a tendency to seek sensory feedback by "bouncing" in his chair, or slamming against the back of a desk seat, the Gaiam Balance Ball Chair has made the difference between his spending a measly two minutes successfully sitting and working, and being able to sit and tend to work tasks for thirty to forty minutes.

Is your child one of those students who simply cannot sit still? Does he/she bounce and slam against the back of his chair frequently? Does he fidget, and squirm constantly? If so, the ball chair might be an effective tool to assist the student to meet IEP goals related to increasing time spent "on task."

If you are interested in a trial with a "ball chair", review your child's IEP document and any related therapy goals. Ask your teacher to document how much time your child is able to stay on task without excessive fidgeting. Ask what the goal for staying on task for a typically developing student your child's age is. If you perceive a substantial deficit, and your child is reported as hyper and fidgety, check in with your child's pediatrician and occupational therapist. If they are in agreement that the ball chair represents a valid intervention for your squirmy student, ask your child's IEP team to consider implementing simple and cost effective interventions such as the ball chair. Many students who do not respond to the more mainstream "chair wedges" find success using the balance ball chair.

Prices for the Gaiam ball chair range from 79.00-139.00. The chair is sturdy and well built, and should provide years of full time use. It is easily cleaned with a germicidal spray and a damp cloth.

A student who is initially exposed to the balance ball chair will predictably respond to the built in "fun factor". For this reason, it is best to introduce active sitting devices during activities that don't require great amounts of concentration, then slowly move it into the general classroom experience.

Full Spectrum's 2007 Best of the Best

Coming tomorrow!

Entry #1 in Full Spectrum's 2007 Best of the Best Autism Friendly Products and Services.

Until then, have fun guessing just what the crazy contraption pictured above is for and why this product has earned it's place on my list of must haves.

Baby, Its Cold Out There

Note: Well, in the words of Sally Field, they like me, they like me, they really, really like me! This blog will be moving to Revolution Health in the near future.

In the meantime, I'll be cross posting with a link to the new site.


Athos said: "We must carry each other. If we don't have this, what are we?" (Anne Micheals)

Lately, I live in fear for my sons. I don't know who will carry them when I'm gone. You see, David and Jamie have autism. Their early intervention years are over. Yes, they have improved. No, barring a miracle, they will never live fully independent lives.

I frequent a lot of message boards, and talk about autism to anyone who will listen to me--family members, friends, politicians, journalists. Even strangers aren't safe.

I used to find mostly polite receptions to my efforts to educate and build awareness. But the winds seem to be turning.

Lately, when it comes to discussions about developmental disabilities, I find myself defending my children's rights to exist. In increasing numbers, all people choose to see when they observe children like mine is a price tag. And they aren't careful to mince their words when they tell me that children like mine have no business stealing resources from children like theirs.

Ouch.

More and more, I hear people labelling children like mine as "drains on society." Their lives are devalued to the status of ones which never should have been at all. They are deemed bottomless pits who exist for no better reason that consume resources.

Those people don't live here, in my house. In spite of my extending open and frequent invitations, they don't bother to visit here. They are not privvy to the joys to be found in caring for people with autism.

They don't spend time with children like mine, nor do they want to. They haven't met the lives changed for the better, or the futures set onto a new path as a result of having known children like my sons.

People who harbor such hateful, elitist notions certainly can't stop to reckon the rich, spiritual treasures that are born from years of caring for a child you brought into the world who will likely never leave your side.

Most of all, I am feeling increasingly afraid because my baby boys aren't babies any more. They're turning into young men. And I am growing older.

Someday I will die.

I will leave two helpless dependents in a world that doesn't very much want them.

I've not been an idle parent. As an advocate, I had the priveledge of teaming with five other moms, and between us we did a lot to help build effective early intervention programs in SC.
Sadly, by the time those programs were in place and running well, my boys had left the years where such programs are deemed most effective.

People forget that their children's successes were built from my children's pain. And yet, I cannot begrudge those families, those children the joy they must feel in knowing they will walk away from the worst of autism's impact. I'd likely have done the same.

For my boys, early intervention has done all it will. I am satisfied that my children's legal struggles paved the way for other people's children to flourish. And I hate myself for hoping that these parents will choose to give back to the community that, but for the grace of God, could have been their children's.

My beautiful sons are pushing into their teen years. The odd behaviors and "oops" moments aren't so easily passed off as "cute" anymore. I worry about arrests. I worry about accidents. I worry about their odd actions being mistaken for assaults or violence or drug induced behavior. I worry about what happens when a sudden impulse moves into the realm of deadly action.

Most of all, I worry about who will love them when I'm not here.


Through the years, my sons have carved their niches into my heart as my prides and my joys. I've come to terms with my boy's differences. They are the growing into the young men their twin destinies deemed they must be.

But the world has not made this leap into reverent acceptance with me. My babies aren't defined as "autistic" in my mind anymore. They're just my sons.

And if, as others say, my hands are full with their care, then Iwill answer back that full hands are seldom idle ones.

Because my children have autism, I must change a world and make it ready to recieve them.


Why not join me on the journey?