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.

Not to say "I told you so"....

So my son's teacher came chasing after me as I loaded him into the car on Friday. I'm ashamed to admit that my experience with the educational system has given me a bit of exposure anxiety. History would suggest that when a teacher the size and age of this woman is willing to run herself breathless to catch me, I'd be wise to get while the getting's good. But her nervous smile stunned me. Teacher's never smile at moms like me. So I stood there, transfixed. Like a stunned deer blinded by headlights.

"Ms. Skye, Ms. Skye. (pant, pant). I just wanted you to know. David had a wonderful day--a wonderful week. He made a ninety in science. Did anybody ever tell you that David is smart?"

THUD. I bit my poor tongue into a bleeding pulp in order to hold back the fulminating "duh" that seared the tip of my tongue.

OK, reality check time. Even I have to admit that a teacher willing to admit that my son doesn't have dumplings for brains represents significant progress. And since I'm famished for anything that might resemble a compliment when it comes to my children and their challenges, I wallowed in this rare, warm, fuzzy moment.

David laughed all the way home.

I'm sure in a dozen or so years, David will be thanking his teacher for her undying faith in his intellect during his (augmented) acceptance speech for the Nobel Peace Prize.

Or, he might type "told ya so" into his communcations device, take the money, and run like Hell.

I'm counting on plan B.

The Halo Effect

Nonverbal does not have to mean unable to communicate. A video of My severely autistic,nonverbal eleven-year old enjoying academic and communications success using Soma's Rapid Prompting Method (www.halo-soma.org) This video shows him both as an intermediate and advanced learner. Moral of the story? Presuming Intellect never hurt anyone.

A Matter of When...

Ohio man claims right to have sex with boys

A Dismal Rite of Passage--Autism and Sexual Violence

If the article cited above doesn't justify vigilante justice, I'm not sure what does.

You know, I've been called an "alarmist" for continuing to bang my drum in efforts to urge parents to protect their developmentally disabled children from sexual violence. But I'm going to go one step further, because I hope to fan a sense of outrage in our community that forces action. Active and meaningful prevention must become more than a moral rule. It must become an enforceable law.

If you are the parent of a child with autism, you'd be wise to assume that your child will someday be a victim of sexual violence. In fact, I'd be willing to lay money on the fact that your child will suffer some variant of sexual violence before his/her eighteenth birthday.

You see, I used to be like you. I used to sit in my ivory tower and insist, "not my sons". Sadly, by denying any real dangers existed, I endangered my own child. As a result, my nonverbal child was sexually abused by a peer at the age of ten. He is far from alone in the misery he suffered as a result.

According to the Association for Retarded Citizens, the vast majority of persons living with a developmental disability such as mental retardation, autism or cerebral palsy, will experience some form of sexual assault or abuse during their life times. Another 1994 study found that 39 to 68 percent of girls and 16 to 30 percent of boys will be sexually abused before their 18th birthday.

Any prudent caregiver must come to understand that sexual violence is not an "if", but instead, a "when" situation. Even worse, the danger of sexual victimization increases proportionately to the victim's level of communicative impairment.

Keep in mind that these statistics cited by ARC only account for reported acts of sexual violence. Only an estimated 14% of such acts are ever bought to the attention of law enforcement. In turn, only 25% of those are ever investigated by police. Only 6 percent of alleged perpetrators are prosecuted and only 1 percent of these prosecutions end up with a conviction.

A study of 171 individual confirmed cases of abuse of women with disabilities revealed that friends, family members, group home staff and personal assistants were the abusers in 71 percent of cases.

If you still believe that your loved one with autism will never be sexually abused, you are either living in an ivory tower or you have chosen to remain blind.

Ignorance is a far cry from bliss. Reciting your "not my child" mantra protects your child from nothing. An ounce of prevention on my part might have saved my precious son a world of pain.

David could not name his accuser.

He could not testify to the crimes committed against him.

He could not ask for help.

Had the act not been witnessed, it would have gone unreported. I had no way of knowing if this first "reported" incident actually represented the *first time* my child ever endured sexual abuse.

You'd have thought that state officials charged to seeing to my son's welfare would have come rushing to the scene.

But they didn't.

As a parent, you cannot afford to assume that they will do any more to help your child than they did mine.

In the absence or meaningful protections, it is our duty as parents to protect our children. It really isn't a difficult job.

1) Know first hand that background checks are periodically performed on anyone charged with serving or caring for your child. Never assume an agency will "do this for you".

2) Know first hand what procedures are in place to prevent peer to peer sexual abuse.

3) Know first hand what meaningful preventives and reporting procedures are in place to protect disabled victims of sexual violence.

4) Protect your child. Rally your local law enforcement agencies to seek education in specialized interviewing methods and disability sensitivity, and point them towards reliable resource materials.

5) Take nothing for granted. Address your child's school board regarding the real sexual abuse risks to their developmentally disabled students. Find out what preventives are in place, and what curriculum skills are addressed to teach your child to protect himself. If there aren't any, ask that a task force immediately be assembled to address the problem. Volunteer to sit on it.

6) Make sure that all educational, therapeutic, churches, and medical providers are aware of laws that mandate reporting of suspected sexual abuse to Child or Adult Protective Services.

7) Take control of your child's education. Insert sexual awareness training into your child's IEP goals. Urge your educators to understand that it is never too early to begin teaching disabled children protective safety skills. Such skills, once learned in training must be practiced regularly.
8) Become the resource in your community. Educate yourself. Volunteer yourself as a speaker. Offer inservices free of charge.

9) Never trust anyone. Not a priest, not a rabbi, not even your own grandmother. By assuming the worst you will effectively reduce the chance that your child will ever suffer from sexual violence.

For a list of available training materials, visit the CAN do! Disability Outreach Project at http://disability-abuse.com/list.htm

If He Only had a (conventional) Brain...

Every night at bedtime, my son and I read from his favorite book of the moment. This week, David's text of choice has been "A Brief History of Time", by Stephen Hawking.

Anyone who knows much about Mr. Hawking knows that this brilliant scientist lives with ALS. From his wheel chair, and using his only working hand to point his communications, letter-by-letter and at the rate of 15 words per minute, Hawking managed to write the book that has so captivated my son. David will sit and listen to Hawking's theories for as long as I have breath to read.

My eleven-year old boy's keen interest in physics, when paired with his ability to comprehend Hawking's theories, would likely qualify him for any gifted education program in the world. If, that is, he were a typically developing child.

David is anything but typically developing.

That my son has developed a case of hero-worship during our reading of Hawking's work comes as no surprise. Role models for children like my son remain few and far between. David and Mr. Hawking face eerily similar challenges which make it extremely difficult for them to express their intellectual abilities. You see, my sweet, brilliant boy lives with severe, nonverbal autism. His sensory impairments and hyper-sensitivities make for a very painful existence. So, I feel that David needs to hear the words of a "can do" peer as often as humanly possible.

__________________________________________________________


David has been a victim of publicly funded special education since he was three-years old. I trusted his educators when they named themselves experts in autism. I allowed these self professed "experts" the latitude to do their jobs. It is a decision that I didn't see the necessity to remedy until it was too late.

In four years of precious early intervention time, David could not show himself able to learn more than his ABC's and how to match color blobs.

So that's what he did. All day, every day, ad infinitum, David remained held hostage to an un-varying and impossibly low standard for measuring progress. In the name of tax-payer funded education, David spent many days tied into a chair for failing to sit still.

In retrospect, I wonder how on earth I could have failed to see the reasons why David grew increasingly unhappy, and violently self abusive before I finally did.

In 2000, my frustration with David's ability to progress grew in direct proportion to his misery. Severe aggressive behaviors began to become the new "normal" for my once angelic son.

David began running away at school. He began to be confined to filthy, unventilated closets re-named as "classrooms". His teachers hadn't even bothered to clean the stage props out first. They simply threw a sheet over them, and expected that I'd never find out.

David began to act out at the very sight of a school bus.

The school refused to see my son's new behaviors as an attempt to communicate.

So, I emptied our savings account and dragged my then seven-year old son to a Picture Exchange Communications (PECS)Camp.

In ten day's time, David managed an "impossible" feat. He learned to independently communicate his wants and needs through substituting picture cards for words. My son arrived at the camp unable to communicate in any way. He left that camp, not only with a functional method of communications, but the ability to form small sentences and identify items by shape, color and size.

Even in the face of this miracle, David's educators remained steadfast in their refusal to admit that there may be more to David's intellect than standard assessments could show.

Sadly, David's gains at PECS camp were not consistently reinforced at school. His teachers would not "buy into the method." In a heartless display of professional conceit, all school-based attempts to advance David's communications abilities further were soon abandoned.

While David remained happy at home, where we encouraged his growth as a communicator, his school days declined into chaos.

And David grew. As my little boy matured, his wants and needs also increased in complexity. The picture cards which had once freed him could no longer keep up with his expanding desire to communicate more abstract concepts.

His school district refused him the augmented communications device and related expert training required to continue his growth as a communicative human being.

David's behaviors grew more grandiose. His school district's answer was to send my boy out for a walk every time he hurt himself. It didn't take much of a mental leap for David to realize that his most violent aggressions led him to the ultimate reinforcer---being sent outside to swing. All day, if need be. Of course, all hell broke loose.

My memories of David as a happy boy paled in the face of this changeling who posed a growing danger to himself and others. David's destructive new method of communications replaced his desire to use PECS.

David's wrath eventually followed him home. When he threw his baby brother down a spiral staircase because I'd ignored a tantrum, I requested an expert, functional behavior analysis.

Three expert behaviorists, working independently of each other, all arrived at the same conclusion. David's school district had systematically reinforced increasingly dangerous, escape-related violence, until it became his only effective means of communication.

In a desperate attempt by his school district to remedy their mistakes, David ended up placed in a "highly recommended" behaviorally focused residential school in Winter Park, Florida.

At that "highly lauded" facility, our son suffered malnutrition, inappropriate medication, improper supervision, and sexual molestation. All of it funded by tax payer dollars.

In spite of a front page report in the Miami Herald, and subsequent written proof that our son had not received the level of supervision his facility behavior plan dictated, and that his school district paid for, the abuses my son suffered in the name of *certified behavioral therapy* went unanswered.
_____________________________________________________


That David successfully shows his mastery of Hawking's work through ABCD multiple choice, yes/no questions, true/false questions, and on good days, by independently pointing his responses out letter-by-letter on a QWERTY chart or a handheld, electronic dictionary seems to have become a point of contention with his new school district.

Why is it that I'm not surprised?

Despite numerous video-tapes and real life demonstrations to the contrary, David's intellect is consistently diminished by those charged with seeing to his meaningful education. Instead they charge that those of us who have worked so successfully with David, are apparently performing some odd variant of Voo-Doo.

Surely my son's ability to pass the same standardized curriculum tests used by his non-disabled peers can't qualify as proof of learning. Instead, David's bar for proving mastery of curriculum must be raised much higher than typically developing students.

The problem is that David keeps meeting the ever-rising bar of expectations set before him. Somehow, they theorize, in spite of the fact that we do not guide him in any way towards his responses, we must be prompting David--we must giving him the answers. In spite of the fact that multiple experts have been unable to determine what the "prompting process" is, this notion persists. Ad nauseum.

If there is some elusive prompt transpiring, honestly, even "experts" are unable to discern the nature of it.

____________________________________________________________


You know, for one hell of a long time, those of us who fought so hard for David's future had little choice than to accept the school district's contention that he was severely retarded. In spite of David's lifelong history of substantial problem-solving abilities and talents for manipulating people and environments to help him access end goals, we had no means to prove that there might be more to David than David could outwardly express.

One desperate trip to the HALO Clinic in Austin, Texas changed the way we would view David's abilities forever. There, under the tutelage of Soma Mukhopadhyay, we found the lost boy who autism had stolen away ten years prior.

And then the strangest thing happened. David's severe behaviors went away, within days of his discovery that there was more to an education than being tied into a Rifkin chair and forced to match color blobs.

My boy has never looked back.

Sadly, his school district refused to buy into the notion that through rapidly delivered attention prompts, David could rise above the chaos of autism long enough to tend to an instructor. Once able to "hear" curriculum, David could prove mastery of concepts read out loud to him by responding with mutliple choice, yes/no questions, true false statements, and pointing to letters to spell his answers.

You know, I've grown awfully weary of having my son held to a higher set of standards to prove his intellect than is expected of his non-disabled peers. If I have grown tired, then imagine how David must feel.

In regards to his own struggle's with a severely limiting disability, Stephen Hawking writes: "For a time, the only way I could communicate was to spell out words,letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card. It is pretty difficult to carry on a conversation like that, let alone write a scientific paper."

But Hawking did it, nonetheless.

Spelling words, letter-by-letter was accepted by scholars from Stephen Hawking as valid proof of communications. This simple accommodation for his disability allowed him to write a book which explains advanced physics to a intellectual commoner like me.

So please explain to me exactly where the danger lies in affording my autistic child lesser accommodations than Hawking required, so that he , too, may communicate his intellect, wants, needs, concerns and desires?

Sounds like a job for the Office of Civil Rights to me. It won't be the first time I've filed a (successful) complaint or two.

My Kid is an Ax Murderer

The Face of a Serial Killer?

Rocky Mountain News reporter Lou Kilzer has penned an article which practically nominates persons with autism as those Most likely to become serial killers. My letter of outrage is copied below:

Dear Mr. Kilzer,

I am deeply troubled by your report of 7/28/2006, "Piecing Together Serial Killer Puzzles Psychiatrists..."

Imagine how surprised I was to learn that I might be the mother of two ax murders in the making!

I fear that in your eagerness to brand persons with autism as potential serial killers, you have neglected to read the supporting body of work by J. Arturo Silva and colleagues, which is related to the study cited in your article. If you had read the body of work, you would find that Silva's work SUGGESTS that SOME serial killers exhibit *evidence* of Asperger's Disorder, which is a *variant* of autism.

Closer inspection of Silva's work reveals that his findings are based on historical case studies and interviews taken with parents and relatives of a serial killers, many years after the fact. None of these fifty serial killers cited by Silva were ever actually *diagnosed* with autism spectrum disorders during childhood.

Instead, the study's authors used compiled developmental histories, based on ex-post facto interviews, to find that during childhood, a few serial killers were reported to have exhibited *some* features consistent with a diagnosis of an autism spectrum disorder.

Silva uses these *retroactive* case studies to support his characterization of a subset of serial killers as having a rare *variant* of Asperger's Disorder or High Functioning Autism. He hopes his work "could lead us to a greater understanding of the etiology of both serial homicide and autism."

Previous work by Silva found that persons with autism only showed, by his statistics, a mere 1 to 3 percent increased risk to commit murder when compared to the general population.

Again, you painfully misinterpreted Silva's work when you correlated a sensationalistic lead sentence with with a statistically signifcant common thread between serial killers--Autistic tendencies.

Throughout the article, you nudged readers towards the inevitable conclusion that people with autism are unfeeling sexual perverts lying in wait for their next murder victim.

What you did not say is every bit as important as what you did choose to report.

Never did you make it clear to readers that sexual violence, criminal fantasy and perversion are not diagnostic features of autism spectrum disorders. Even Silva states in previous studies and commentaries that only a subset of these serial killers *may* have been children with autism or borderline autism.

The *fact* is that persons with autism have a much higher (in excess of a ninety-percent) probability of falling victim to physical and sexual abuse when compared to persons without autism.

Whether serial killers actually suffered from autism as children is likely impossible to prove. But serial killers do share one thing in common with many persons who have autism. Serial killers were often themselves victims of childhood bullying, childhood abuse and/or sexual abuse.

If serial killers, as children, appeared to show retrospective autistic tendencies, is it any surprise that their propensity for murderous violence was more a symptom of nurture than nature?

By failing to explain to your readers that sexual violence, perversion, and hatred of women is not part of the diagnostic criteria for autism, your report is written in such a way that your readership will conclude that all people with autism are likely to kill, rape, dismember, and maim.

Ignorance is a far cry from bliss, Mr. Kilzer. With your irresponsible pen, you have sent autism awareness careening back into the dark ages. Fueling further justification for the acts of hatred towards persons with autism with your inadequate reporting is beyond reprehensible.

I suggest that the next time you attempt to report on a study correlating serial killers with autism, you bother to actually read the source material first. Then I suggest you bother to familiarize yourself with the DSM IV standard criteria for the diagnosis of autism spectrum disorder. (299)

Or, if you truly want to change the world for the better--resign.

A Picture's Worth

Autism as David Sees it

Cure Borgdom Now

While I'm sometimes troubled by the cure autism at any cost advocates, lately, I also feel disturbed by some persons with autism who presume to intuit the beliefs regarding cure of the entire spectrum population. Although I will fight to my last breath for every spectrum member's right to state an individual opinion about "curing autism", I will also argue with equal conviction that one person on the spectrum cannot possibly represent the thoughts and feelings of another.

If one could take the DSM IV criteria for autism and split it down the middle, they'd end up with a reasonable diagnostic sketch of my boys. One child's autistic features represents the other's about as much as the a blood blister represents a melanoma.

Jamie got all the cool stuff autism can bring. While his early years were very difficult for him, I can safely say that Jamie could pose as the early intervention poster child. While he's a persistent boy, and obsessive to the point where he will not let go of a problem until it is solved, he's got a few savant skills to push him over the hump when need be. He's learned to use these bits of genius to impress his teachers and friends when he needs an assist in the social skills department.

Jamie's ability to think in three dimensions and crack any code he cares to allows him to beat the pants off of most anyone who dares to challenge him at video games. Because Jamie is a visual thinker, he's also is an amazing artist--as long as he's drawing video game characters!

Granted, I doubt Jamie will ever aspire to be Mr. Party Animal, even though girls have been vying vehemently for his affections since he was three-years old. (Jamie's a born stud-muffin. But I don't think that's listed in the DSM IV. )

Jamie knows he has autism, and it clearly doesn't trouble him much. If you ask him, he'll tell you, "so what, big deal, when's dinner?" If I were to ask Jamie if it would be ok to just up and cure him of his autism, I'm pretty sure you'd be met with a resounding "no way, Jose!" At least not before he unlocks the last character in Super Smash Brothers Melee.

I support Jamie in his choice to vote for "no cure." Jamie clearly enjoys being Jamie. Jamie with Autism.

Sadly, our family has also experienced the devastating flip side to Jamie's autism experience. If Jamie got the better half of the DSM IV, then his big brother, David, got the half that makes us wonder sometimes what we, or our beautiful child, ever did to warrant his having been committed to Hell on Earth.

As David's mother, I want you to know that I love this child with a passion few can comprehend given the often tremendous difficulties involved in keeping David's behavior stable. But I will also be the first to tell you that it has to suck to be David.

You can see by the photo I've posted above this entry, that David got the severe sensory disruptions and painful hyper-sensitivities commonly associated with a diagnosis of severe autism. David must wear noise protection headphones nearly all the time as even the sound of his own breathing brings him unbearable agony.

Clothes hurt David, too. He will never wear holes into the knees of a favorite pair of blue jeans, for their woven texture causes him to writhe in discomfort. He cannot wear button down shirts, because the sensation of the button attachments pressing into his skin incite him to epic spells of head-banging.

Smells hurt David, too. If a person wearing perfume enters my home, my son will sniff everyone in the house to find the offendor. Then he will show them right to the door. Should they refuse to take his hint, David will begin slamming himself into the walls with a fury severe enough to leave gaping holes in the drywall.

Digesting his food hurts David. David has suffered from severe, acidic diarrhea nearly every day of his life, and having a bowel movement often sends him into such extreme spasms that he can scarcely catch his breath for shrieking in misery. Eating is difficult as most food textures and tastes cause him to gag.

School hurts David. Until I could convince my son's school district to educate my son in a dimly lit, sound protected room, David could not manage to focus for one moment. He could not stop hurting himself or others. Exposure to cavernous hallways and stark cafeterias with their miserable acoustics and harsh lighting is tantamount to torture for David.

Exposure to florescent lights has been, through careful data taking by a certified behavior analyst, proven to incite my son into rages severe enough to cause him to jump through windows. Don't believe me? See that scar in the picture above? The one on my son's elbow? He jumped through a window (not on my watch, mind you). That incident required skin grafts. We thought the wound would never close.

David is doing some better these days---specifically since I fired the arrogant and uncaring behaviorists, who refused to acknowledge that pain can be a very real antecedent to outbursts.

You see, when the lights are dim, and the meds are right, and the clothing doesn't hurt, the seizures let up, and the unrelenting pain of his autism brings him abates a bit--my little boy can be present for long enough to tell me how much it sucks to have Autism. The kinds of things he tells me and asks me when he is present enough to use his letterboard independently are the stuff of every mother's night terrors.

"Why does autism hurt so much?"

"Why do autistic kids have to stay home?"

"Why are you afraid of me?"

"Why did God make me like this?"

"I wish I could talk."

"Am I sick?"

"Help me. It hurts bad so bad."

"Autism sucks."

"Help me."

I have a hard time hanging on to my composure when one of my son's higher functioning peers presumes to speak for him. This child will suffer immeasurably for every day of his life. He will seldom be able to summon the words to tell us where and how it hurts. Even if he could tell us just how it feels, there is likely little we could do to help him.

David should be allowed to have a cure if he wants one,without fear of exile from his peer community.

And even as I fight for Jamie's right to refuse a cure, should one come along, I will fight with equal conviction for David's right to advocate for curing autism now.

My children are not Borgs. I don't believe they want to be assimilated.

Dreaming Little Dreams.....

Someone had the gall to say to me recently that the real tragedy of autism is revealed in the lost hopes and dreams of the of the families involved. As evidence to support her case, she spoke of lost incomes and broken dreams. Diminished lives. Soured futures.

This sentiment seems to be taking root and spreading across the mainstream media. Even a portion of the "cure autism" community has jumped on board. A recent film was released by one such organization which hammered home the horrendous difficulties families suffered by caring for children with autism.

Granted, this life has its hard times, often to the point of grueling. If one chooses to dwell on the negatives, the shattered dreams can surely seem countless.

Having birthed and raised two lovely boys with autism, I've had cause to put many a gilded dream aside. Because my son's have autism, we've certainly known disasters, disappointments, and financial challenges that most families could not begin to comprehend. There have certainly been days after weeks of sleepless nights when I have contemplated quitting, leaving, dying, anything to simply get some rest. And I am deeply ashamed of each and every one of those moments.

From what I've observed, living with the diagnosis of autism in a child can also give rise to miracles. Loving someone with autism holds the power not to defeat, but rather to transform a caregiver's dreams for their own lives.

I have seen this transformative power lift parents from the ashes of hopelessness with nothing more to carry them beyond a passionate love for their children and a desperate desire to make a positive change from which all people with autism will ultimately benefit.

I have watched single moms successfully take on educational systems that often seem to work only to diminish opportunities for positive outcomes for students with autism. I have known fathers to publish books in support of their cause, and uncles to make movies designed to broaden awareness. I have known couples who have challenged legislation and who have changed laws. I've met grandparents who have come out of retirement to organize meaningful non-profit organizations. I have watched my own daughter, at the tender age of six, make a televised plea for appropriate early intervention for her brothers. I have watched the kind of miracles unfold that must leave our awestruck Creator grinning from ear to ear.

Call me blind if you want, but I don't see many families who would say that their lives have been laid to waste by autism. I do see many lives transformed into something more meaningful through accepting the call to advocacy. I see in this community a legion of heroes who have abandoned more materialistic pursuits to fight for their children's most fundamental human rights. I am proud to stand alongside these family members of people with autism who do their utmost to build a better world, and to sow new dreams for their children's futures .

If I dwell on it, I might find it strange that I seldom see the families of typically developing children doing their utmost to leave their children a better world. But then again, why would they feel they had to?

I can truly say that I am a woman redeemed by the needs of her children. And what of all the hopes and dreams that I entertained before autism entered mine and my children's lives? You know, beyond writing, what few aspirations I can recall just don't seem worth reclaiming, even if I could.

Who is this woman????

Assuming anyone cares enough to ask, Liane Gentry Skye is a pseudonym that I have used to protect my children's rights to confidentialty. I describe myself in most cases as the mother of four perfect children, two of whom are living well with autism. I am first a mother, second an advocate for my children and their peers, and finally, a part time writer. I'm sure my children's school district would tell you a more turbulent side of this story! :)

While writing publishable fiction has always stood front and center in my dreams, writing to broaden the public's perceptions regarding persons with autism became the necessary work of my heart.

In that regard, I have had articles, essays and opinion pieces published in such publications as Guidepost's Angels on Earth, Autism Asperger Digest, The Myrtle Beach Sun news, Autism Today, America Online's Soap Box opinion section, The Mothers from Hell Brimstone Bulletin, and several related regional venues.

My writing has led me into some passionate advocacy battles which managed to force several Southern school districts into compliance regarding the civil rights and rights to protection from sexual abuse for persons with autism and related developmental disabilities.

Marketing my fiction sat on the back burner to my children's needs for many years, but I have never stopped working to inch towards my dream. In the breathing spaces between the advocacy and educational battles, I took second place honors, twice, in the Southwest Writers Workshop Writing Contest, for mainstream novels and inspirational writing. My short story, Imprint in the Ice, won Zoetrope All Story Extra's first and only online writing contest. I'm particulary proud of that story as both main characters have developmental differences.

I'm currently writing a novel and middle grade children's book related to autism.

To find out more about my current work, you can visit me at Retribution, Divine.