04/08/03 - Posted 12:15:19 AM from the Daily Record newsroom

Life with David will always be challenging

By Colleen O'Dea, Daily Record

A couple is getting up from a table just a few feet away from Richard L'Ecuyer's favorite Chinese stand in the food court at the Rockaway Townsquare mall at the exact time he is pushing the double jogging stroller through the din of hungry shoppers.

"Perfect!"

He grabs the table and gets David settled first, buckling him to a chair. He removes the chair next to David and parks the stroller as best he can, catty-cornered to the table. Then he walks to the corner of stand closest to the table and places his order, glancing back to the children every few seconds. He reaches for his wallet and digs through.

Taking your eyes off David for even a few seconds can lead to trouble.

David reaches his right arm across a red painted pipe that separates their table from one next to it to touch the table of two long-haired teenage girls, one wearing three-inch silver hoops whose weight is pulling her earlobes down.

Richard carries back a green tray with two plates of barbecued chicken, no rice, in time to see the wandering arm.

"David Richard L'Ecuyer, hands down! You don't grab other people's stuff," Richard yells sharply, but as softly as he can. David pulls his arm back, banging the pipe once. "Sorry about that," Richard says sheepishly, looking across at the girls.

"That's OK," one says, seeming genuinely oblivious to the intrusive reach.

To prevent another incident, Richard moves the stroller, practically blocking the aisle, and shifts David's seat to the left.

Before they begin eating, Richard pulls out a plastic bag filled with wipes and cleans each child's hands. Then he opens David's black cloth lunchbox and pulls out the drinks he packed to save money: a juice box for David, a bottle of water for himself and Playtex nursers for JJ and Tiffany.

There's a system for feeding the children. Richard spears one rectangular chunk on his fork at a time and works clockwise. First David, then Tiffany - she gets the smallest pieces - then JJ and finally Richard himself gobbles two or three chunks at once.

David chews the food, then stores it in his cheeks, hamsterlike, until Richard tells him to swallow. He likes to drink and finishes his juice box quickly, then keeps trying to get more out of it. Richard moves it farther and farther from him, eventually placing it behind the lunchbox.

JJ is hungry. Tiffany eats, but only because it's given to her. She's much more interested in pushing the stroller away from the table by placing her feet up against the table leg.

A passerby notices that the children's coats have fallen out of the stroller pouch and picks them up and offers them to Richard. He gets up to take them, thanking her, and moves behind the stroller to re-store them.

That's all the opening David needs. He grabs Richard's water bottle and quickly starts to drink, but can't control the flow and starts coughing as water runs down his chin and onto his blue and white striped shirt.

"Oh, David," Richard says, annoyed, grabbing the bottle from him.

Taking David out is not easy, but Richard likes to get out of the house with the children for this weekend ritual.

He's especially grateful to be able to follow this routine today.

A month earlier, David was in the midst of a screaming spell. David's CAT scan results recently came back negative. Either the stage passed, or David had been constipated, or the Prozac is working.

Pam doesn't like giving him so much medication. "There are always side effects," she says. In addition to the antidepressant, David takes the highest dose of the antipsychotic Risperdal. Both drugs are meant to calm David. Faced with a choice between incessant screaming and tantrums or medication, there's no contest.

Nervous in new situations

Life with David likely will always be challenging.

He doesn't react well to new situations, and they don't even need to be very strange. It took two years to get David to go down the slide at their local playground.

When a stranger visits, David gets agitated and paces. After a few minutes, he checks out the visitor by standing nearby and slightly behind. He reaches his left hand out and touches the back of his hand to the visitor's arm or back, then claps. He may do this several times. Then he paces and returns to do it again.

Richard thinks this nervousness stems from David's having been shuffled from home to home and school to school. He assures the 8-year-old that no one is going to take him away. Eventually, David calms into his more typical routines - sitting on the far corner of the living room futon or atop the warm air blowing up from the floor heating vent in the doorway to the kitchen.

The idiosynchratic nature of David's autism makes teaching him a challenge.

It's not a typical classroom

David is one of 110 students of all ages and abilities attending the Allegro School in Cedar Knolls.

The building's brick façade and drop-ceilinged halls make it look like any other older school building. David's classroom is the size and shape of a typical classroom, with a long green blackboard up front flanked by decorated bulletin boards at either end and a wall of tall windows. But that's where the comparisons to typical schools end.

Along the windows, with all but one of the shades pulled all the way down, are six cubicles, one for each of the 8- to 12-year old boys in the class. A hanging poster board in each cubicle lists the skills each student has mastered and those he is learning. The children work one-on-one with a teacher or aide in these cubicles for 75 minutes each morning and 45 minutes each afternoon on language, math, play, concentration and social skills.

David's is the first of these cubicles, next to the one window where a partially raised shade lets in the day's bright sunshine. He loves to look out from it.

On this last Wednesday in February, David is sitting in a blue chair facing Julie Samuels, one of his teachers. On the desk next to him are an open Minute Maid juice box and snack size bag of chips.

When Samuels speaks, she brings her face to within inches of his.

"Do you want juice?" she asks, at the same time signing it by bringing a fist with her pinky sticking up to her chest and moving it down to make a "j." "You have to tell me."

He nods, moving his entire upper body like an ostrich pecking at the air.

"Good job," she says soothingly.

She holds the box up and lets him take a sip, then she puts it back.

Suddenly David stands up.

"Do you want to jump?"

Samuels gets up, too. She holds both his hands and they jump in the middle of the room with deep thuds.

"One, two, three, four, five. David, you jumped five times!" she says with emphasis.

They sit back down and Samuels picks up a pink and orange plastic wand and blows. A stream of small bubbles breeze toward his face as David stares ahead. He lets some of them burst on his cheeks. She puts the wand to his lips and gestures with her own for him to blow. His mouth forms a circle and she praises him, then offers a reward.

"Do you want a chip or juice?" she says and signs.

David brings his hand to his mouth and Samuels gives him a small bite of chip, praising him again. He takes it, eats it, then gets back up again and walks over to the waist-high yellow exercise ball resting against the front wall.

"You want to bounce on the ball?"

He throws himself stomach first atop it. Samuels gets behind him and pushes down hard on his back, counting aloud as she bounces him on the ball. His arms flop with each bounce. After counting to 20, she coaxes David back to his seat.

When he starts to seriously balk at the work, she announces they are going to take a walk.

She opens first the child gate, then the classroom door, and holds his hand as they proceed through the corridor.

"Let's take big, big steps," she says, demonstrably widening her stride. He thumps his feet as far apart as he can. "We are taking such big steps! Now let's take little, little steps."

At the end of the hall, she tries to get him to open the door, but winds up doing it herself.

"Let's go to OT, to see Janice," she announces, referring to the occupational therapy room. David starts to run, clomping his feet awkwardly to the side, exposing the calf-high orthotics he wears to help his gait.

They enter a long room that is dark and crowded. Multi-colored exercise mats, beanbag chairs, mattresses and comforters cover all of the floor but a thin walkway along one wall. A couple of swings hang from the ceiling.

"David, what do you want to do?" she asks him.

He walks over to a yellow mattress.

"You want to jump!" Samuels proclaims enthusiastically.

David jumps with gusto for a few seconds. Then he falls backward onto the mattress. Samuels grabs a blue blanket and lays it atop his body.

"You are under, David," she says.

He wriggles out from under the blanket, stands and starts jumping again. Then, abruptly, he stops and starts to walk out of the room, no more than three minutes after entering.

"Bye, Janice," calls Samuels, motioning for David to do the same. He turns at the door and waves a hand once, moving his head back and forth.

Back in the classroom, David is more willing to sit still as Samuels shows him a picture book and asks him to point to the pictures. Lessons continue to get mixed at times with activity. He does an animal puzzle, then crosses to the microwave, squishes a ball in his fist, then walks to look out the window.

He stacks some blocks on the desk, then bounces on his stomach on the ball, bangs a tambourine, then stomps his feet before drawing lines down the blackboard with yellow and pink chalk, then bounces while sitting on the ball.

Unlike his classmates, who sit in their seats the entire time or close to it, David never stops moving and his teacher is always behind him, allowing him to move as he needs to, and trying to teach small, basic concepts in between.

It doesn't look it, but David has made tremendous progress in his last year there.

"He would not communicate outside his family," recalls Allegro Director Deborah Lewinson, who has an autistic son of her own. "He had no eye contact. Now look at him. Even getting him to pay attention for a few seconds is a big deal."

Those who work with David don't know what level of function he eventually may reach, although most figure he won't ever be able to live on his own without support.

By contrast, preschoolers in a classroom around the corner smile and start conversations with visitors. Austistic children can make tremendous progress - many return to their home schools - if they are identified and get intensive help as early as possible, certainly before age 3. Lewinson blames David's hard life for his low level of functioning.

"He came to us late. He did not have a stable family. That makes a difference."

They're learning positive training

To try to do the most they can for David at home, Pam and Richard signed up for a two-hour parent training class every Thursday night at Allegro. They've found a sitter who has a degree in social work to watch the kids.

About a dozen people - four staffers and eight parents - gather around the large oblong wooden table in a first floor conference room. Each parent or couple sets a binder with the "Allegro School 2003 Parent Training Manual" on the table within arm's reach.

All around the room are sculptures, drawings and other student artwork, promises of what David may still be able to accomplish some day. On one wall near the door is a work inspired by Vincent van Gogh's "Starry Night." It's a dramatic sky of mostly blues and greens, but with swirls of brown, pink and orange. Along its bottom edge are a small church and other buildings. The striking piece was made from chewed bubble gum.

"We're going to continue where we left off last week with positive teaching strategies," announces Ron Petrucelli, the director of outreach and home programs at the school, to start the meeting at a little after 7 p.m.

Petrucelli begins a lesson on chaining - getting a child to perform a task that involves a series of steps without verbally telling him what to do.

Richard raises his hand.

"Just a question: We're talking about 12 steps, all these steps we have to get them to wash their hands. How long does this take - a year, two years, six months? How long?"

"Hopefully not that long," Petrucelli replies. "The problem is usually that they like to play in the water. Often times we talk about getting stuck on one of the steps. Another reason why they might not get this is because someone is verbally prompting them. When the verbal prompt is gone, they can't continue the chain."

He asks for volunteers for an exercise and Pam raises her hand.

Richard is the teacher and Pam is the student. He has to read a series of steps from cards in a small white binder and get Pam to perform them.

"It says, 'Stand up,'" he begins, looking at the faces around the table, shrugging his shoulders slightly and rising from his chair. He positions himself behind Pam, puts his fingertips under her armpits and taps upward. Pam stands.

"Walk to window," he reads. Richard extends his left arm, palm up, in front of Pam and uses the index and middle fingers of his right hand as feet to walk across his palm. She starts to walk toward the only window in the room, but it's blocked by some furniture, so Petrucelli tells them to use the window on the door.

"Open window," Richard says, then looks at the glass permanently affixed into the wood frame door and turns to Petrucelli. "Open the window?"

"Pretend," he says.

Richard reaches from Pam's right side and pretends to open a window. She mimics him.

"Count to five, it says." Again, he turns to Petrucelli. "How do I do that?" Then he holds his hand in front of Pam's face and raises one finger at a time. She counts aloud.

"Close window." Richard pretends and Pam follows his lead.

"Walk back to chair." He puts his left hand onto her left shoulder and gently guides her back to their chairs.

"It says, 'Sit down,'" he reads from the last card. "Sit down," he whispers over into Pam's right ear. She doesn't move. "Unh uh," interrupts Petrucelli, scraping one index finger across the other in a "shame on you" gesture. Richard sighs, walks back behind Pam and pushes her shoulders down.

Petrucelli signals for the critique to begin. A hand shoots up across the table from the L'Ecuyers. "You used a verbal prompt at the end," says a woman, looking at Richard. The conversation turns to whether it's ever appropriate to tell a child what to do - never, if it's a life skill the child is expected to do by himself, according to Petrucelli.

"You did good," Pam whispers to Richard.

'You have to ask for it'

At home, Pam and Richard try to use what they've learned to reinforce what David has learned in school each day.

This particular day's note in the binder in David's backpack states that he used sign language to ask for an orange.

"What a good boy you were in school!" Richard cheers, patting David on the shoulder. "You signed orange. David signed orange."

Pam heads into the kitchen, returning moments later with an orange and a paper towel. David immediately moves next to her. Pam peels off chunks of orange rind, setting them on one section of the paper. She reaches her fingers into her mouth and pulls out a small ball of gum, sticking it into the corner of the towel. She separates the orange into sections. David watches all this intently. Then he reaches for a section.

She pushes his hand away.

"Do you want the orange?" She looks through her wire-rimmed glasses directly into his face and puts one hand up to her mouth in a C shape, then squeezes her fist and turns it slightly to make the sign for orange.

David simply stares ahead.

Pam picks up his hand and forms the sign for orange. He grabs for the paper towel and she pushes his arm away again.

"Make the sign, David. Orange."

Still no response. Pam helps David make the sign, then puts a piece of orange in his mouth. He walks away, chewing it.

David sits atop the heating vent in the floor and leans his back against the side door, stretching his legs out in front of him.

Pam eats a piece of orange, then another. A few minutes later, David walks back and quickly grabs a piece of orange. Pam catches his hand and pulls the orange out of it.

"You have to ask for it," she says.

David walks away. He sits in his corner of the futon. After a minute, he walks back to Pam and taps his chest.

She holds an orange piece, then hands it to him, saying, "Take it in your hand."

He does, then he pushes his fists together in front of his chest, saying he wants more. She's waiting for him to sign. When she turns away, David reaches and shoves another piece into his mouth before Pam can stop him.

Richard laughs and shakes his head.

"He's quick."

Despite how trying his autism can be, David has won Pam and Richard's love.

The couple seems to have an endless supply. Still, it's somewhat remarkable, considering that David was supposed to have been the foster child they took in for a while, as they waited for the baby boy they'd been hoping for.

Eventually, that baby came. JJ has given them all the joy they'd expected and more. But whether he is going to be the "normal" child they jokingly say they will eventually wind up adopting is not a given.

Colleen O'Dea can be reached at codea@gannett.com or (973) 428-6655.