Monday, August 21, 2006

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)

Tuesday, August 15, 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.

Saturday, August 12, 2006

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.

Thursday, August 10, 2006

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.

Tuesday, August 08, 2006

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

Sunday, August 06, 2006

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.

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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.
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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.

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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.