Presuming Intelligence....more support

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."

# # #

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?

10 Things I wish every Special Education Teacher Knew

If some rare breath of magic came along and blew open the doors to communication, and I could lay aside the silent fear of educational retribution against my children, I'd have so many things to tell my son's teachers.

1) First, I'd say that I truly believe that we are both good, hard-working and well-meaning people. I'd promise you that we want the both want the same thing--for my struggling child to make educational progress.

We have more in common than you might think. We are both working towards the goal of helping my child acheive "measurable educational benefit" within the framework of woefully under-funded legislation, known as the Individuals With Disabilities Education Act (IDEA, rev. 2004).

Because that legislation remains under-funded by our lawmakers, you and I are forced to work towards an identical goal, but from opposing sides. Because you are too often not given the funds with which to implement my child's IEP, I am forced to seek advocates and lawyers should I disagree with those services my child does receive.

2) I'd remind you of how our roles in my child's education differ. Your job with my child is retroactive. You are charged with implementing the goals as set forth in my child's individual education plan. (IEP)

My job is proactive. I had to both anticipate the goals that came to you with my child, and I had to I had to push hard to provide you with sufficient resources and related services to help my child meet those goals.

By the time my child ever gets to you, I am probably already exhausted from the long and bumpy ride that brought him to your care.

Where you struggle to address the varying needs of many students every day, our lawmakers have made it my job to advocate for the needs of one student--my child. Very often, bitter struggles have ensued before you ever entered my child's life.

The law has handed me a lousy and often lonely place to advocate from. But that law provide me with the only foothold I've got to help me open the doors of knowledge a little wider for my child.

I do hope that I remember to be respectful during those inevitable panic attacks that arise every time I look at the numbered days of my child's educational life ticking by. I ask that you would show me the same respect when you react to my inevitable concerns.

2) When I disagree with you, I want you to know that it doesn't mean I'm angry with you. It means I'm frustrated. My concerns do not mean that I think you're incompetent. It means that I feel my child's individual needs aren't being met successfully.

Please know that during those inevitable moments when I lash out at you, it doesn't mean I don't like you. It simply means that I'm feeling the same frustration that you do.

It makes me sad to say that the laws written to insure my child a free and appropriate public education have left it up to me insure that you will have the resources and funds made available to you so that you may, in turn, educate my child appropriately. Sometimes, I have to put up an ugly fight when the district which employs you does not give you what you need to do your job.


3)Living with a contentious relationship is exhausting. I don't like being the watchdog anymore than you like having me be one. I didn't make you the first person in line in the hierchy of whom I must address when I have concerns about my child's educational progress.

Your school district did.

When I come to you with an educational concern, I am coming to you within the parameters of proper procedure. Next to me, you know my child better than anyone else sitting at the IEP table. I need you there to give the team an honest and informed appraisal of my child's struggles. I need your honest suggestions of what you feel my child needs in order to progress. In order to get you there, I have to tell you that something isn't working. I'm very sorry that procedure so often divides us.

4) I wish you would remember to tell me something good about my child everyday, no matter how miniscule that something might be. I hear plenty of bad news. Often, a rare glimpse at the good things is all that gets me out of bed in the mornings.

On the flip side, I recognize that I must remember to tell you when my child does something wonderful at home that reflects your ongoing efforts on his behalf. As a parent, perhaps I don't do that enough. I wish that in spite of the inevitable struggles, we could agree to do this for each other at least once a week.

5) Please don't say anything around my child that you don't want him to repeat back to me. Even if he's nonverbal. You'd be amazed how many children report that they understood, and remembered, much of what was said around them long before they could indicate that they comprehended our words.

6) Presume every student's intellect. Assume that my child possesses intelligence even in the apparent absence of higher functioning. Remember, twenty years ago we presumed all persons with CP were unable to comprehend general academics.

Augmented communications has done much to prove how very sadly misplaced that assumption was. There is absolutely no harm in reading an age-appropriate story now and again to a child you think has no way of understanding the words. If nothing else, your time and attention will show him how much he is valued. His behavior may just improve as a result of knowing you care about the child within while you strive to work with the measurable limitations of the child before you.

7) If my child is having a bad day, please stop for a moment and put yourself in his shoes. Somedays, I find myself having to do this myself.

At quitting time, you can walk away from the struggles my child brings to your class.

Those struggles and frustrations are with my child for a lifetime. Stop for a moment and just imagine the sometimes unbearable enormity of living with his challenges. Forever.

8) We are a team. Please do let me know how I can help you transfer skills my that child my child learned at school to his home and community environments. Urge your District to invite me to trainings and inservices that might help me better help my child learn. If I don't know that Johnny is tolerating hair brushing at school, then I won't know to hold him accountable for those skills at home. Help me to help you help my child.

9) Acknowledge that I am sometimes the prevailing expert on my child. If I say "it's not working", I'm not saying so to just to be difficult. I'm saying this to help you understand that the approaches we thought might work aren't working. Even though the goals your preferred approach address are still a very valid ones, sometimes a mother's insight is priceless at backing into those goals from another direction.

I have known this child since the day he was born. I will live with him, his successes, and his failures, long after your job is done.

10) Consider meeting me in a goal that we can both get behind and advocate for.

Before you ever met my child, I have likely engaged in years spent advocating for him. I have yelled, screamed, written to lawmakers, and filed complaint after complaint to help you help my child within an unfunded piece of legislation. Its sad, but its true.

You tell me you want to help. Consider uniting with special ed parents, and jointly lobby for the full funding of IDEA.

Until then, our educational system will either continue to deny critical services, or go broke in trying to award them. An unfunded IDEA works only to insure that parent/educator relationships will remain contentious, and that the children of families who choose to litigate will win the best services.

The prevailing system is all about survival of the fittest parent adovcate.

Nobody wins.

Children lose.

God is Watching...

From USA today:

UNIONTOWN, Pa. (AP) — A youth baseball coach accused of offering an 8-year-old money to bean an autistic teammate so he couldn't play was sentenced Thursday to one to six years in prison.

Fayette County Judge Ralph Warman sentenced 29-year-old Mark R. Downs Jr. of Dunbar, Pa. to consecutive six-to-36-month sentences for corruption of minors and criminal solicitation to commit simple assault. A jury convicted Downs in September.

Warman revoked Downs' bond and sent him to prison.

Downs didn't speak at the sentencing but told reporters "I didn't do nothing" as he was led out of the courtroom.

His attorney, Thomas Shaffer, said Downs was upset and looked forward to appealing the verdict. Downs was ordered Thursday to undergo a mental health evaluation and barred from coaching any youth league sport while on parole.

Authorities said Downs offered to pay one of his players $25 to hit Harry Bowers, a mildly autistic teammate, with a ball while warming up before a June 2005 playoff game. Prosecutors said Downs wanted the 9-year-old out of the game, because the boy didn't play as well as his teammates.

Player Keith Reese Jr. said he purposely threw a ball that hit Bowers in the groin and another that hit Bowers in the ear, on Downs' instructions. Downs denied offering to pay Reese to hurt Bowers.

"These acts are extremely outrageous and extremely reprehensible since the defendant was involved in the coaching of a youth league," Warman said.

Bowers' mother, Jennifer Bowers, said Thursday that since her son was hit, she has struggled to get him to try new activities. She said the boy fears that he would get hurt again.

Downs was acquitted on a more serious charge of criminal solicitation to commit aggravated assault. Jurors deadlocked on a charge of reckless endangerment. The judge declared a mistrial on the endangerment charge, and prosecutors said they wouldn't retry him.

Copyright 2006 The Associated Press.

Never Land is a Dangerous Place...

Here are ten things I was told my severely autistic son would never do:

1) Your son will never speak if he doesn't have functional language by the age of five.

Done, at age 12. He uses new words daily.

2) Your son will never come home if he ever goes to a residential treatment program.

Done at age 11. I have to admit though, that we dragged him home after he was sexually abused and half starved there. He actually got worse there, behaviorally speaking.

So we trained ourselves to provide education and treatment, and tailored our goals for David aroundwho David is, and what David might wish to learn. Then, we directed our son's treatment at the cost of 140,000 and growing.

It was the best thing we ever did for our child.

3) David will never communicate meaningfully.

Done at age 11.5

4) David will never learn to read.

Done.

David does not read like most people do. He spells his answers and communicates on a letter board or keyboard. He learned to read letter by letter instead of in the "sight word" method most of us use.

5) David will never show understanding beyond a 2 year old's level.

You be the judge.

David's favorite book is Stephen Hawking's "A Brief History of Time."

David just passed a grade level science test with a grade of 95. In spite of the fact that he's nonverbal and severely motor impaired.

6) David will never be able to dress himself, cook a meal, use household appliances.

Sigh. Done, done, and again, so done. And my little hunk is very adept at putting together well coordinated outfits.

7) David will never be able to control violent outbursts or aggressions.

Done, done,and done again.

8) David will probably never be able to write his name

Done. He types it, too.

9) David will never have an original idea.

David wrote a stunning and insightful poem in response to Bill Stillman's book, Autism and the God Connection. Mr. Stillman was so moved by it that he mentioned it in the foreward to his upcoming title, Heart Savants.

10) David will never learn a meaningful vocation.

See the stunning necklace at the head of this post?

David has made necklaces like these and dozens of others equally as beautiful. All because we knew to things David could do. String a bead on a cord and imitate patterns.

So, why is it that were we so successful in helping our son progress when multiple experts failed to help our child?

First, we never took that one way trip to Neverland, even when things our son's future looked hopeless.

Second, while experts were so busy telling me what my son could not do, I started by working with the things that I knew he COULD do.

Nobody can do everything. Nearly everyone can do something.

By standard measures, David still tests as severely retarded and is deemed unable to live a "productive" life.

Whatever.

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For Ryan

Ryan Didn't Have to Die

The developmentally challenged child in the video link above killed himself as the result of "Mean Girl Syndrome". This beautifuly boy looks and carries himself so much like my youngest son. Today's entry is for Ryan.

I hope more parents will begin to realize that "net nannies" and keyloggers are not only powerful tools--they can save lives. Use them before it's too late.

Hippocrates is Crying

Too many people with autism die at the hands of the people who love them. Contributing to this travesty are those medical professionals who perpetuate the outdated belief that there is no help to be had for an autistic person enduring neurological agonies.

There are certain places in every parent's heart that they would prefer to remain buried. These are dark places, populated by bits and fragments of memories that do not fit with our conceptions of ourselves, of our devotion to our families, of the sometimes overwhelming force of our love for our children, and of our duty to keep them safe from harm. Dangerous places, even--places born from moments of pervasive exhaustion, strained hopes and desperate circumstances.

I remember a time, a fleeting glimmer of a second, when I pondered the possibility that my first born son might be better off dead. I remember that the thought struck me at the end of a day exactly like the two-hundred and some odd days before it, when my little boy would bang his head so often and with such vehement fury that the blood would course from his nose. I remember that his doctors, his teachers, my in-laws, and my friends really didn't believe me when I told them that someone in my home might well die if help did not come soon.

I remember a day when I sat in my new home with every stitch of furniture upturned, the mirrors shattered, the pictures fallen, and every visible expanse of wall punched through with hole after gaping hole. I remember watching my son shove his hand inside of one of those holes to examine the underpinnings of his world, and drawing back a fist full of blood. I worried and fretted over what would happen to my family when the din of my son's duress caused a concerned neighbor to summon social services, realizing that no court in the world would believe me when I told them that a fifty-five pound child inflicted this most recent adrenaline induced cataclysm within the space of a night. It's not like I didn't try to tell anyone who would listen---its just that nobody could realistically conceive of such a thing. So, I took videotape, snapped pictures, and made recordings documenting our visit to Hell--just in case. Truth was, none of that painfully gathered evidence could accurately portray the misery my beautiful son, his siblings and I lived through during that year.

Then came the night when my belief that most doctors are good and dedicated professionals died. I remember leaning against the outside of my locked bedroom door at three o'clock in the morning, curled up in fetal position to fend off my son's blows, and with blood running out my nostrils and my mouth. I stood sentinel there because that door was all that protected my two other children from the thrashing, biting, wraith that had possessed my son. I remember the frightened sobs of his siblings who cowered together on the other side of that door because they feared that their brother would strike out in his agony and kill either them, or me.

That was the night when my son's doctor quit answering our distress calls as there was nothing more he felt he could do for my son. I remember the next morning when I counted out eleven pills, each of them designed to help my son control his behavior, and falling to my knees begging God to grant my baby boy just one hour of something that might pass for peace. I remember the bottomless ocean of guilt I drowned in as I doped my child for his own safety. With each pill I forced down his resisting throat, I wondered how long his little body could withstand the pharmacological battle for control raging inside of his little brain.

I remember what the bowels of Hell sound like. I can't forget my son's agonized shrieks which came so shrill and incessant that my eardrums vibrated in protest. I despaired at my utter inability to do simplest of things that mothers do to comfort children when they are ill. I could not hold my child, sing to him, or simply be near him, because it seemed my every breath served only to stoke the flames of his fury.

I remember the desperate efforts of my aged mother and father, trying so hard to help when nobody else would. Together, we tried to hold this little writhing boy down as he seemed dead set on orchestrating his own demise. I remember staring into the bottomless black pools of my baby's dilated pupils as they consumed the familiar blue rings of his irises.

I think I nearly understood that day why some have wrongly mistaken autism for demonic possession, for many of the reported hallmarks are the same--the flaring nostrils, the trembling hands, the thrashing limbs that struck out at horrors which none but my child could see, and the likes of which only Hell's darkest demons could conjure.

Most of all I remember the day when my youngest boy, also autistic, fell down a spiral staircase at his big brother's hand. I remember holding my flailing,rage-driven son basket style in my arms to keep him from throwing himself through a window while my other child screamed in frightened horror. I remember my little girl running for the phone to call her Grandma and Grandpa back over. "Help, Mimi, help us....". My little girl hadn't even turned ten years old yet.

I remember thinking during the cacophonic din of this incessant misery, that we could not go on. I remember thinking that if death was all that could bring an end to my baby's suffering, then so be it. If sending my child back tot he God who made him meant I must walk into Eternity behind him, then I would, for I could not conceive of living on knowing I had harmed my own child.

But for the grace of God, the sun finally rose, and my son fell asleep for the first time in five days. My black moment of hopelessness lifted. I found a doctor to medicate me for my depression, and eventually we found a doctor who cared enough about her autistic patients to look into the medical reasons behind why my son seemed to see and hear horrors that we could not fathom.

For the first time in my son's life, he was hooked up to an EEG, even though he'd been treated randomly with various epileptic drugs all of his life. With an unusual temporal lobe background pattern identified in the exact location where intense auditory and visual hallucinations can be triggered, we found a part of our son's autism that could be treated.

Most days now, David is a happy boy. He's on less medication than he's taken since he was five years old. For the first time since he was eight years old, the medical and the educational therapies he enjoys are working well together. While David is still mostly nonverbal, and struggles greatly with auditory pain, we are finally beginning to catch very real glimpses of his intellect, his passion for knowledge, and his sweet personality.

My son's absence of a voice does not pain me so much as my inability to completely discover the captivating individual who is my son. But we have time. We are finally learning that David does comprehend, and always has, understood much of what is said around him.

Thank God, I always had enough respect for my son to never speak of the strains his autism placed on me within his earshot.

Somedays, as I watch my son joyfully discovering his world, I stop to murmer a prayer of thanks. Had I taken to heart an uncaring doctor's decision that my son's condition was "intractable and untreatable", I could well have become desperate enough to end both of our lives.

Paradigm Shifts

...if I ever go looking for my heart's desire again, I won't look any further than my own back yard. Because if it isn't there, I never really lost it to begin with!... (Dorothy, The Wizard of Oz)

Recently, I was asked to provide a blurb for Bill Stillman's upcoming book, Heart Savants.

I was surprised, and quite flattered, that anyone would ask me what I thought. The first article I ever wrote in Angels on Earth Magazine, dealt with my journey towards accepting the gift of my son's autism during a time when the rest of the world was awfully busy trying to eradicate it. Exploring the spiritual gifts to be had in raising a severely impaired child wasn't a popular stance back then.


Bill's follow up manuscript to Autism and the God Connection is so sensitively handled, and its message so luminous, that I had to stop several times during my initial reading to indulge in a good old fashioned cry.

It troubles me that we as a culture tend to regard neurologically unique human beings as less worthy of life than the average convicted serial killer. So far, the most notable invention rising from a billion or so years of neurotypical human evolution is weapons of mass destruction. I can't think of one thing we, as a species, have done to improve the planet, or simply become a better people.

Bill's new book,"Heart Savants", reaffirms the truth of what my sons with autism have been quietly teaching those who love them for years. If you want to see God at work, look no further than obstacles he places in your path. My children are here for a reason. My children are miracles in the making.

I for one think that the worth of a culture can be best judged by how it cares for its most vulnerable members. If the words my nonverbal son, David, wrote in response to Mr. Stillman's first book are any indication, the man is on the right track:

When you look into the night

The stars are all you'll ever see.

I have chosen instead to see

The possibilities lying in between.

(DMP, 11 yr old boy with severe autism, c. 2006)

Minions Man Gates of Hope for Special Students

The name of the game is to let as few children through the gate as possible

I swear, one of these days I'm going to write me another book. That's right. I'm going to compile a book of essays written by the parents of spec. ed kids. My, what a tawdry tale we will weave.

I could tell you about a dozen school district induced nervous breakdowns, beginning with the one I had in 2003. I could tell you tales of broken marriages, and lives laid to waste. Such horrors were not inspired by the toils of caregiving, but rather by the grueling rigors of educational advocacy.

When the book is done, I'm going to give it a snazzy title like "The Boy in the Closet; 101 True Tales of Schoolhouse Terror .

I'll bet you a thousand bucks I can't find a publisher in the world willing to touch it. Because the truth is, America really doesn't want to know. Persons with developmental delays are the last bastion of socially acceptable bigotry in this country.

The rules of the educational game aren't about educating special needs children. They never have been. There is probably a good reason behind the fact that parents and educators seldom see eye to eye when it comes to the costs involved in helping special needs students become as independent and socially functional as possible. It's called the Individual's With Disabilities Education Act (IDEA). This brilliantly concieved piece of legislation has never been fully funded by our lawmakers. Further, the act failed to include procedures and funds for local and state level monitoring.

So we have another lovely paper tiger from Capital Hill which cost taxpayers a fortune and did little to help disabled students. Without access to critical funding, schools have no choice other than to work hard at denying their most vulnerable students appropriate educations to the maximum extent possible, and/or without ending up in a federal penitentiary. Educating special needs children in a meaningful fashion costs a lot of money.

Once again, the Darwin rule applies. Only the parents who best survive the rigors of the educational hoop jumping contest manage to access appropriate educations for their special needs children. Sadly, by the time the Districts realize they may have to either settle valid disputes, or risk going to court, the child's early intervention years have already passed.

Ugh. Somebody bury me in a mountain of Godiva sea shells. Hopefully by the time I chew my way out, I'll be grinning again. At least until I have cause to come face to face with my own butt in a three-way mirror.

It's my party, (and I'll write if I wanna!)

I have absolutely nothing useful to say regarding autism today. At least not in any "factual" way. But its my blog, and you're my readers, so I'm going to indulge myself in a random (and I swear on my hoop skirt, uncharacteristic) act of conceit.

I'm going to tell you a story. It's a bit of a waking dream for my sons.

I had no idea how hard it would be to write believable characters who live with developmental differences. But I think this one story is starting to "work". So, read on if you care to. Or click the little "x" up yonder and to the right. But don't tell me if you do!

In Clara's Keep

Snowflakes sparkle about the dark swag of Clara's hair. Her pale, moon face bears a raw, scarlet flush. Her excited blush bleeds into the tightly drawn cord of her sweatshirt collar as she falls back into the snow to stare up at the sagging canopy of palm fronds.

Adam wonders if that flush makes its way to her tiny, up-turned breasts. He pictures himself pressing lips to rosy skin, drawing the heat of her into himself. He feels so cold. The frigid air causes tears to rush to his eyes—another unaccustomed sensation. The emotions that stir others to tears have always baffled him.

A shimmering fountain of snow sprays upward as the pale blanket gives way under her weight. In grudging deference to the law of gravity, it falls about her again, dropping snow-diamonds on her lashes. She spreads her arms upward in the snow, then back down. "Look, Adam, I’m a snow angel!" The youthful sound of her laughter belies her forty years.

Adam stands in the shelter of the wide porch, hands shoved in armpits, grasping for warmth. His face is washed with amazement and terror. He reminds himself that his fear of the snow isn't born of logic . Just the old obsessions of the Autism rearing their ugly head , he thinks.
Logic doesn't soothe. Yesterday's lush slopes of sand and sea oats have retreated, leaving everything familiar entombed under drifting snow. Adam pictures himself standing in the kitchen and drawing the blinds, blotting out the white shroud that swathes the seaside. Inside, he could believe the world was as it should be. He could dry his eyes and feel safe.

Her voice is insistent, shaking him from his vision. Security visions, she’s come fond of calling them. "C’mon, Adam. Isn't it pretty?"

He wipes his eyes and shakes his head "no".

Clara’s face melts into a petulant pout.

He sees that he's hurt her. He forces a smile. "No," he says, marveling at the flat sound of his voice. A trick of acoustics, surely. The snow absorbs the excess sounds. He shivers, then remembers she's asked him a question. “Adam will watch you."

Adam can't see the clouds of disappointment that surely dull her up-tilted, black eyes, but his photographic memory paints the appropriate picture. He'll have to do something kind for her later. To make up.

She's taught him well.
~
"I'm going for some tape," she announces in her Minnie Mouse voice as she unwinds her scarf from its designated hook by the back door. She sounds breathless, as if she's been running for a long time.

"Tape?" Adam is addled. This isn't the normal routine. He shakes off the approaching dizziness, and starts as if he is peering down an uncertain cliff-edge into a deep chasm.

"Yes, tape." Her watchful gaze takes in his apparent confusion. "For the Christmas presents, Adam."

"Oh. Yes, Christmas." Adam crosses to the latticed window and peers outside. So dark, he thinks. Prematurely so. And still snowing—an unusual event for the island. The newness of it still shakes him. "What about the snow?"

She chucks his arm with her mitten-shrouded knuckle.

He guesses that she is trying to clear his apprehension.

"It's just fluffy rain," she says, still panting with what he takes for her normal holiday excitement.

Adam doesn't feel soothed. "It’s—different."

"Different doesn't mean bad. How many times have we talked about this?" Her hands are perched on rounded hip bones and she tries to appear stern.

Her orchestrated scowl amuses him. Adam smiles, picking up on her exaggerated social cue.

"You want an exact number?"

"You know the ‘xact number?"

"Seven-thousand, three-hundred and two times since New Year’s."

"Then you should know it by heart. Now what are you s'posed to do?" She stands beneath him, and directly beneath the mistletoe which bobs over the door frame. Her face is turned up to his. Full lips pucker and her mouth corners tremble on the edge of a smile.

Adam enjoys her antics and wonders briefly what it must feel like to truly understand the rituals of love.

Adam knows the kiss-prompt she offers well, and is soothed by the familiar routine. He kisses the translucent velvet of her closed lids, then brushes his lips against hers. He bids her to take care. Just as they'd practiced so many times since he was a boy. She'd been his salvation
back then. And he hers, so she claims. But he suspects that Clara would have flourished anywhere in spite of the mild retardation that limited her academic abilities.

Clara opens the door. As if in afterthought, she turns back at the threshold and kisses him on the nose. "I'll miss you." One rebellious tear brims in the corner of her right eye.

"Clara is just going for tape."

Her hand flies to her heart and she sighs, deeply. "I'll still miss you. Pretend you'll miss me and kiss me again?"

Adam complies. He is rewarded by her smile, which he thinks the most beautiful thing about her. A warm rush of blood pumps towards his groin, and he thinks of asking her to go upstairs. But it doesn't fit with the routine which has already been mangled by her insistence on leaving the house at this atrocious hour.

"I love you," she whispers as she burrows deeper into her sweatshirt. Then she puts her finger over his lips. "Don't say it back. Not ‘til you mean it."

Adam nods his head. Whatever words he has uttered in response have already drifted away, irrecoverable. He watches her breath turns to clouds, dangling in the chilled air. He is reminded of the word balloons that comic strip characters use to express themselves. He laughs. It takes him a bit to shake the obsession and realize that Clara is gone, taking whatever words he’d uttered in response to her endless affirmations of love with her.
~
Adam closes the door and immediately sets about the comforting tedium of his work—he proofs technical manuals for computer manufacturers. He is grateful for his job’s unending sameness tonight. Adam is known for his flawless attention to detail and his ability to present in concrete terms what often seems unexplainable. His job also requires little contact with people, and Adam takes comfort in this. He's not good at socializing--he leaves that to Clara, who is a natural at planning parties and get-togethers and programming him with the right thing to say at the right times.

As Adam sets about his work, he vows not to glance at the clock before Clara returns. But the caged shadows of the Autism claw at the backs of his eyes, bidding him to look.
~
One hour passes, and then two. At the chime of the third hour, Adam cannot concentrate on anything beyond Clara’s absence. The routine she designed to navigate him through his days so many years ago has careened off course. He won't rest until she bursts back through the door, brimming with murmured reassurances that different doesn't always mean bad.
Adam sits, rocking on the kitchen chair, eyes firmly planted on the clock that ticks determinedly onward.
~
A knock at the door comes at half past midnight.
The police officer stands on the front porch, his mussed head bowed and wringing his cap in his hands. He looks alarmed as his eyes search Adam's face. "Mr. Adkins?"
Adam nods.
"There's been an accident."
“Accident?"
"Your wife—Miss Clara. She collapsed in a snowdrift out back of Singleton’s Pharmacy. The plow had just been through. It was a while before anyone found her."
"Clara is hurt?"
"Mr. Adkins, I'm sorry. Miss Clara is dead."
"Adam is sorry, too." And he is sorry, but he can’t find the words to say just why. He’s sorry she’s gone, sorry he has no tears to mourn her, and sorry that he doesn't understand yet what life will be like with her gone.
~
Adam wanders through the motions of identifying her, as he is supposed to do. His mind conjures her squeaky little voice. Another security vision, he imagines, prompting him as if she were standing right behind him.

He marvels at the clarity of her image on the viewing screen. They must have washed her face, he thinks. It is still flushed and red.

"Her heart simply gave out. She struck her head when she fell," the coroner says. "There was no pain. Will you be wanting an autopsy?"

Adam shakes his head no. Clara was dead. They’d known it was a possibility for some time now. He saw no need to dissect to define the obvious.

"Surely, the redness will dissipate before the funeral," the officer says.

"Surely," Adam says. He clears his throat, stalling, trying to script the social niceties such a situation requires.

"When you don't know what to say, just echo what is said to you," Clara's voice says, prompting him, leading him through as it always has. The screen flickers off and her florid face is replaced with static. White snow and meaningless buzzing.
~

"Will you be O.K.," the officer asks as he hands him her possessions, all safely entombed in a white plastic bag bearing her name. White plastic, white static, all of it as bleak and without color as the snow that has consumed everything in sight.

The officer steps toward Adam, as if he might be thinking of hugging him.

Adam backs away. "Yes, going to be O.K. Adam will be going now. There are arrangements to be made." It is the appropriate response, he believes.
~
Adam emerges from the policeman's car, grateful for his offer of the ride home. He stands for a moment looking at the dark house, remembering that Clara would have had him turn on the Christmas lights before he left. His arms are full of her things, and he struggles to remember what she would have him say now.

"When someone has done you a service," Clara says in his mind's ear, "you must say thank-you."

"Thank-you..." Adam's empty word cloud dangles before his face, a growing expanse of whiteness that hovers in expectation. Clara's voice doesn’t give him the words to fill it, so Adam simply nods to the officer and turns toward the house.
~
He doesn't know how long he's stood here, staring at the angel Clara pressed into the snow.

Long enough for the icy air to crust my nostril hairs. Adam’s hands have long since ceased to burn from the cold. A part of him stands outside himself, reminding him he should go inside, but as he stares at Clara's imprint, he is haunted by a memory from many years past.

~
Clara came across the swan's egg on one of the guided picnics that the Charleston Home for Retarded Children allowed them each week.

Adam watched as she put it in her pocket. He wondered why she'd do such a rediculous thing. Surely it was against the rules. And didn't she know what a mess a broken egg would cause?
She caught his surprised stare. "Don't tell, ‘K?"

"Don't tell, ‘K.? Why, don't tell, ‘K.," he'd asked.

Adam's command of spontaneous language at the age of ten wasn't good, but as always, Clara gently corrected him. "Why not. That's all you gotta say."

"Why not?"

" ‘Cause they won't let me keep it."

"Why keep?"

"I wanna hatch it."

Adam stood silent. He saw no good reason for further comment.

"Say ‘K.," she asked. "Say you won't tell?"

"Say ‘K.," Adam said, after a long while. "Say you won't tell."

She rolled her eyes. "Don't say the "say" part, ‘K.? And look-a-me when you talk."
~
Sometimes Clara's hovering presence annoyed Adam, but other times he had felt thankful for it. Once, when he didn't see her for six days, he went to the girl's ward to check on her. He'd had a hard time of it, trying to communicate his needs to the attendants without Clara there to translate. In spite of her habit of incessant chatter, things went along better for Adam when Clara was around.

Now he stood, hands flapping in frustration by her bed, struggling for the words he needed to find out why she'd been laid up in a sick bed for the better part of a week.

"Hi Adam," she said, smiling sloppily.

"Hi Adam," he answered.

"No, you say Hi Clara."

"You say Hi Clara. Clara sick?"

She giggled, hands to mouth, as if she knew a joke that Adam didn't understand the punch line to. Clara lifted her blanket to reveal a nest of clothing wadded between her thighs. In its center lay the swan's egg. "Look, it's hatching!"

They sat there for hours while the wet hatchling struggle into their world. Clara watched the egg, and Adam watched Clara's face, wondering if he would ever solve the Chinese puzzle of emotions that poured so easily from her.
~
Clara's hatchling consumed so much of her time that its dramatic discovery proved inevitable. In reward for her defiance, she'd been forced to commit the cygnet back to the pond where she'd found it. No amount of tantrums could change the dire fate of her little charge.
But there was little anyone could do about the fact that every time Clara ventured outside, the cygnet fell into step behind her, mimicking her every move.

"He's ‘printed on me," she told Adam once.

"Printed on me," Adam repeated, forming the inflection that would make his statement a question.

"I'm the first thing he saw. He needs me. Like I need you."

The mystery of Clara’s attachment to him finally began to make sense to Adam. He was the first person she saw when she'd been deposited at the home five years ago.

The newly discovered logic of her immutable fidelity soothed him. He assumed responsibility for Clara at that moment. She had no one else, and he didn't like to picture her set to aimless wandering like the cygnet.

It was, as Clara said, the way things were s'posed to be. They would be together forever.
~

Bone shattering tremors shake Adam from his fugue. He ventures inside, depositing Clara's things on the table. For lack of not knowing what else to do he sits in his designated ladder-back chair and sifts through the contents of Clara's purse.
~

Clara's bag reveals a large, red envelope addressed to Adam. Her childish scrawl dictates that he is to open it tomorrow morning. There is a gold letter-sized box with a scarlet ribbon wound haphazardly around it, and a white chocolate angel, encased in purple cellophane. She's printed on the candy's label: a snow angel 4 Adam.

And there is, of course, the roll of tape that led Clara to her demise.

How kind that she meant the angel for me, Adam thinks. The gold box is a gift, he surmises. For Christmas, he suspects.

He imagines she would have him put it under the tree, and save it for Christmas Day.
~

A sensation much like falling washes over Adam as he lays his present with the others under the tree. Desperate to regain control, Adam retreats to the kitchen and rocks on the edge of his chair, eye's darting, searching for any semblance of order.

Again, Clara has saved him from the ritualistic behaviors that once drove his life. The carefully scrawled schedule that she keeps hanging on the refrigerator indicates that he's missed dinner.

On cue, his gut rolls over and roars in protest. Adam picks up the angel. It will make as good a dinner as any.

Rocking back and forth, and reeling from his up-ended day, Adam opens the sugary treat. As the last crackling remnants of cellophane fall from his trembling fingers and flutter toward the floor, he recognizes that this is the last time he will eat something offered by Clara.

Adam chews slowly, mouth closed, as she had reminded him daily. He relishes every morsel of the rare confection. With the last crumbs consumed, he bends to the floor, picks up the wrapper, and licks it clean of the remnant sweetness.

Satiated now, Adam resumes his rocking, lulling himself into awkward slumber. His face is pushed down into the red envelope which promises in Clara's looping letters to direct the order of tomorrow's events.
~

The light of the winter's day dawns blue-white and garishly unfamiliar as it pierces the blinds and pries past Adam's tightly shut lids.

His first waking thought is of Clara’s uncharacteristic breach of the routine. Why didn't she wake me?

A perfect memory fills in the details in a playback of techni-color freeze frames.

Clara is gone.

Gone, but still here for today , he thinks. Clara’s red envelope bears the grease spots from his forehead. But its promise to walk him through this first day without her is intact. Adam opens it

to find two letters folded into the shapes of origami swans, and a ticket to this afternoon's performance of the Nutcracker--a ballet Clara has loved since childhood. The first of the letters bears huge, glaring letters: "OPEN ME FIRST!"

Adam obeys.

~

Adam,

If u r reading this you know I lied. I didn't go out for tape. I went out ‘cause I thought maybe this was the day my heart would get too big.

It's been hurting. Doc said he'd put me first on that list so I could get a new one, but I said no, not’ til after Xmas but it's 2 late now.

I got u a ticket for the Nutcracker. Promise u will go. U have 2, it’s my death wish. It's the way things are s'posed 2 be.

Wear your blue suit, the one u wore when u married me.

When u come back here, there are 3 things u have to do.

U have to open the gold box. Merry Christmas.

Next, u have to read the other letter, the one that says open me after the Nutcracker, ‘cause it's a present for both of us.

And one more thing, Adam. I want to wear my red dress. The one I married u in. Take it to Hall's Funeral Home this morning. They'll do the rest.. Then just say bye, Adam, and don't look back, ‘K?

U r 2 sweet 2 B 4 gotten.

I love u 4 ever.

Clara

Adam works hard to move past her misspelled words and broken prose, but the intent of her orders is clear to him.

"Don't look back, K." Adam echoes out loud the last message from the woman that had written the script for his life.

His day lays neatly before him, set forth in perfect order by Clara.

He gathers up her red dress and carries it to the funeral home. As she promised, the arrangements have already been made, in advance, by her. She knew she was dying.

"I'm so sorry for your loss," the funeral director says.

It is statement as hollow and insincere as Adam fears his echoed response: "so sorry."
Logically, he knows Clara deserves his tears.

~

The suit he'd worn to the courthouse the day he married Clara feels a tight around his belly. Too many years of her good cooking , he thinks. As he dials the phone for the cab that will take him to Charleston Center for the Ballet, he wonders how much longer he'll be able to imagine that Clara is here, but simply out of sight?
~

Adam longs for the refuge of sleep during the ballet. So many images, sounds, colors, people elbowing him from either side. Clara’s insistence that he watch the ballet urges him to keep his eyes open, tightly focused on the stage so that he might forget the proximity of rancid smelling strangers.

It irritates him that he doesn't grasp the ballet’s story line—a wooden nutcracker turned into a handsome prince? By what law of nature could such a thing possibly happen?

But it had been Clara's wish. He has done this strange thing for her. The way it's s'posed to be, he thinks as the cab takes him back toward the refuge of their familiar kitchen, where it seems Clara will pop around the corner any moment, pale arms struggling to hold a stack of messily wrapped presents, each of them designed to make him smile.
~

The blue smudges of twilight chase away the sterile winter's glare. Illuminated by the warm wash of twinkling Christmas lights, Adam sits beneath the tree to open his last present, as Clara has bid he should.

The contents inside must have cost her weeks in the making. A stack of paper, boasting Clara's most careful hand, has carefully laid out a year of days for him. Day by day, she's drawn a perfect map to navigate Adam through the maze of rituals necessary to independent living.
Adam exhales loudly, so great is his relief. It is the perfect gift. He remembers he should be grateful.

"When someone has done you a service, you must say thank-you."

"Thank you, Clara."
~
Her parting words wait in the folded letter Adam holds in his hand. What has been the hardest day of his life has been salvaged by Clara's diligence. Adam can't imagine anything she could give which she hasn’t already accounted for. Still, he feels obliged to open her last letter.
If u r reading this, Adam, then u went to the ballet. And I know u have all the schedules that will help u ‘til you find someone else.

Did u get it? The ballet?
All my life I thought that ballet was about u and me.
The Nutcracker wasn't real. He was a wooden thing that could only work with Clara's help.
True love, Adam, it can fix anything. Clara and the Nutcracker’s love made them whole.
That’s my Xmas wish for u Adam.
U R 2 Sweet 2 B 4-gotten.
I love u 4-ever
Clara
~
It’s eight thirty now, the hour that Clara always designated for lovemaking. Adam longs for the physical release her small body always brought. He could sleep so peacefully after being with Clara.

He climbs the creaking stairs to their room. He shucks his shirt and allows his trousers and boxers to fall in a crumple around his feet. He steps free of the confining circle of clothes and lays back on the bed. Automatically, his hand reaches for the bedside drawer to withdraw the condom she always insisted he wear.

"We don't want to risk making a baby," she would say as her small hands slipped the sheath over his rising penis. Always, tears brimmed at the edges of her eyes. She'd often said she wouldn't wish the childhood they’d gone through on anyone

.
Adam drops the condom, still wrapped, to the floor. It no longer serves any function. He lays back on her pillow as he has over the thousands of nights before him. It smells of Clara and vanilla extract, which is her favorite perfume. Because, she says, it makes me smell like snickerdoodles.

Distraught and afraid of the yawn of years with no Clara to fill them, Adam rises. He rushes down the stairs, through the kitchen and out the back door to stare at Clara’s fading imprint in the snow.
~
The security visions scream, trying to right all that is wrong.

"He's printed on me.” Her voice calls from the past. "Like I'm ‘printed on you, Adam."

Adam lays face first in the slush, planting himself firmly in her rapidly melting imprint. "Like I'm printed on you," he echoes.

True love, Adam, it can fix most anything. Clara's love made him whole...

Her letter hadn't warned him how much becoming whole would hurt.

Hot trails of moisture pour from his eyes, carving rivulets into her fading imprint.

"I love you," she says, putting her finger to his lips. "Don't say it back, Adam. Not ‘til you mean it."

His hand moves upwards, brushing hers away.

"I love you," he croaks between sobs into the imprint where her dark head once lay.

This time, she doesn't put her finger to his lips to shush him.