‘Patterning’ Taught Him to Swallow, Crawl : Matthew’s Life Contains No Miracles, but Plenty of Love

For 8-year-old Matthew Peckins, life moves at a measured pace, slowly and without miracles. Each day passes rhythmically, the minutes marked by the bell of a kitchen timer, the hours by the buzz of the doorbell.

For the last seven years, seven hours a day, six days a week, the sound track of buzzer and bell have accompanied Matthew’s struggle against a formidable enemy, a brain injury of undetermined origin.

The task is enormous. But so is the army of strangers and friends who have been helping him with his battle, hour by hour, day by day, year by year.

“Matthew doesn’t tend to make giant steps,” said Roseanne Peckins, who spent six months of her son’s infancy teaching him how to swallow, a year teaching him how to crawl. “He’s more of a slow plodder. He’s the turtle.”

By 10 a.m. on a blustery Wednesday, as on each weekday morning, Matthew has already been to kindergarten when the first volunteer arrives to begin the careful, patient work of exercising his body and his mind.

Patterning Program

Rob Gardner, actor and puppeteer, hoists Matthew onto a padded table and begins the two- and three-minute exercises that stretch his stiff leg muscles, part of a controversial learning program called patterning.

The spasticity in Matthew’s legs, a common side effect of brain injury, is caused by an imbalance in the signals that travel between the muscles and the brain. His exercises also are designed to improve strength and balance, as well as to keep his hip joints in proper alignment.

Matthew’s mind also gets a workout, with flash cards, multiplication tables and vocabulary words. He answers by pointing to words or numbers on a list that another volunteer has printed on poster board. As Roseanne Peckins explains to each new recruit, her son can’t talk, but he understands everything.

“There was always somebody in there,” she said. “There’s this person locked inside this body, and it’s been our job to help him get out.”

It’s tedious work, and while Matthew usually knows the answers, his attention sometimes wanders. Often, the strain of trying to move muscles in ways they do not want to move shows on his face or in his blue eyes.

So does his pride when he does well and gets to choose a reward. Some days, it’s a handful of raisins, his favorite snack. When the weather is good, he might spend a few minutes on the terrace, his small face wreathed in smiles as he watches children spill out of the school across the street.

“He likes to go in his room and look out the window. He sleeps on the floor instead of in his special bed so he has freedom,” said brother Michael, 13. “In the morning, when I go to wake him up, sometimes he’s already looking out the window. He can look at cars and people and me and my friends playing baseball.”

Michael has worked out a little speech to introduce new friends to his brother: “I tell them he’s brain damaged, he’s 8 years old, he’s real small, he can’t walk or talk, he needs help eating, he can crawl and creep, and he understands everything.”

Today, Matthew’s reward is the puppy that does back flips. Rob periodically winds up the toy and sets it in front of him, ruffling his silky brown hair as they watch it and laugh.

Rob and Matthew work well together, their efforts punctuated by the ring of the timer that tells them when to go on to the next task. They finish their hourlong sequence just as the next volunteer pushes the buzzer.

Matthew Peckins was born at home on a Thursday in late April.

“Dad woke me up late at night. We all had cake after,” said Michael, who joined his parents, a nurse-midwife and a couple of friends to welcome Matthew into the world.

“I was happy ‘cause I always wanted a brother or sister to play with and finally, I got one,” he said.

For Roseanne Peckins, the birth of the 8-pound, blue-eyed blond was the culmination of nine months of meticulous prenatal care that at times bordered on the compulsive. She followed a strict, balanced diet, took long walks and quit smoking. She even made it a point not to slouch.

Compared to Michael, a demanding, colicky baby, Matthew was easy. He hardly ever cried. “He was so agreeable,” his mother said. “It’s kind of nice, in a way, that we didn’t know.”

Before long, though, his placid behavior had his parents worried. It became increasingly hard not to notice that Matthew wasn’t lifting his head or rolling over or doing any of the other things Michael had done at his age.

That August, Roseanne and Jordan discussed their fears for the first time. The pediatrician told them to have patience, that all babies develop at different rates. But Roseanne and Jordan, each with a master’s degree in psychology, knew too much about human development not to worry.

One day, as Roseanne was cooking supper, she dropped a pot on the kitchen floor and Matthew didn’t respond. She dropped another pot, then another. That’s when she realized her son couldn’t hear.

“When do I start worrying?” Roseanne asked the doctor. “Just tell me, because I’m not sleeping anymore.”

Until she and Jordan took him to see a neurologist, Roseanne said, “I was still thinking of Matthew as deaf. I could deal with deaf. I thought, I’ll teach him to read lips. He’ll be the first deaf President of the United States. I’ll be the best mother of a deaf child there ever was.”

But the problem wasn’t Matthew’s ears, which turned out to be fine. The problem was his brain. Matthew was seriously impaired.

It wasn’t until she happened to discuss her son with a social worker that the magnitude of his handicap finally hit home. Roseanne was asking what sort of career Matthew might be suited for, and the social worker took a long time to answer.

“Perhaps someday,” she said finally, “he can learn how to operate a light switch.”

To do the exercise called “toe tickle,” Matthew lies on his back on the table, howling occasionally in indignation as a volunteer gently tickles the bottom of each bare foot to stimulate the reflex that makes his toes point upward, rather than downward, as they normally do.

Next comes “legs in and out.” Matthew moves each leg, in and out, in and out, while a volunteer rests a hand on his knee to keep it from bending.

“Hot potato,” designed to improve Matthew’s balance, requires two volunteers kneeling a few feet apart, gently pushing a standing Matthew back and forth between them.

The names of all 10 exercises are neatly printed on two wall charts that hang in front of the table to help volunteers keep track of the sequence.

Another chart lists the sequence for Matthew’s other activities: reading, math, social studies, typing, geography, language arts, health. Neatly stacked on the living room shelves are plastic bins filled with flash cards, picture books, vocabulary words and music tapes.

This hour is filled by Martha Bernard, a classical singer whose mother came home from church five years ago with a flyer bearing a picture of a grinning Matthew and a big headline that said, “HELP!”

Martha volunteers two hours a week, and fills in for others when she can.

She helps in other ways too. In April, she will give a benefit concert, her third, at a church in Chelsea, the middle-class Manhattan neighborhood where she and Matthew both live. She already has raised $10,000 to help pay for the braces, ladder, walker and other physical therapy equipment that furnishes much of the Peckinses’ living room. Matthew also goes to Willow Grove, Pa., twice a year, for daylong evaluations that cost $600 each.

It was Martha who taught Matthew to say, “Ouch,” when something hurt him. Matthew turned it into a game. “He takes my nose and I say, ‘Ouch,’ then he says, ‘Ouch,’ back. He’s always joking with you. Although he can’t say many words very clearly, it’s very clear to me that he understands everything.”

Sometimes, Matthew pretends to be too tired to work, but his grin always gives him away. He likes to wait until a volunteer’s back is turned, then quietly unbuckle the braces that enable him to crawl or, more recently, to walk, his small hands gripping the rungs of a ladder that hangs from the ceiling. He waits, grinning and unbuckled, for his mischief to be discovered.

“To see someone like Matthew with all his obstacles work in such a cheerful and positive way makes me feel I should be able to find it in myself to deal with my own obstacles, to not give up when something is hard,” Martha said.

The Peckinses first learned of patterning as students at New York University. Years later, dissatisfied with more traditional programs designed for healthier babies, they decided to take a closer look.

Roseanne’s research led her to Sandler-Brown Consultants in Willow Grove, a suburb of Philadelphia, where 18-month-old Matthew was evaluated at a clinic run by Art Sandler, a physical therapist, and Sandy Brown, a registered nurse.

Patterning, Sandler explained to the Peckinses, is based on a decades-old theory that human development follows the same basic patterns as lesser life forms. Just as fish swim and reptiles creep, so must humans pass through these stages. Crawling and creeping lead to standing and walking.

Babies who fail to pass through these developmental stages of movement fail to develop properly intellectually as well as physically, the theory concludes.

During the early years of his patterning, Matthew’s body was manipulated in smooth, continuous motions to simulate crawling. Volunteers also fed him a steady stream of information.

“Almost 100% of what we do in the program has as its purpose to put information into his brain,” said the Peckinses’ written introduction to the program. “This is what makes the nerve cells develop. . . . And we have to do everything over and over until the pathways are laid down well and are functional. The key words here are frequency, intensity, duration.”

“The brain grows by use,” said Sandler. A child given constant intellectual, sensory and physical stimulation in a loving atmosphere will progress as Matthew has, he said.

Yale University psychology professor Edward Zigler, who studied the effects of patterning on severely retarded children more than a decade ago, said it “places extraordinary burdens on families whose lives are difficult enough without the false hopes of an involved therapy of dubious merit.”

In an editorial in the Journal of the American Orthopsychiatric Assn., Zigler said: “There are no objective scientific data to indicate the treatment is effective. Despite the fact that the program is complex and totally time-consuming, parents nonetheless undertake this effort, sustained by the hope of a smile, a step or a word from their special child.”

Allen Crocker, professor of pediatrics at Harvard Medical School and director of the Developmental Evaluation Clinic at Children’s Hospital in Boston, agrees with Zigler, but said Matthew’s case “sounds like a very humanistic experience.”

“Lots of folks touch him and encourage him and almost exhort him to respond. It sounds as though he’s being cared for a great deal, given very strong stimulation, love and touching, and that’s very good for humans.”

The question, Crocker said, is “whether he could have made virtually the same progress from a less demanding, less resource-depleting program.”

“Probably he could have made most of his gains with vastly less stress. But there is no reason to doubt he has gained. And a little extra beats a little less.”

Roseanne and Jordan are as familiar as anyone with the controversy that has raged in medical journals for 30 years. When they speak of it, it is with more than a trace of weariness.

“Patterning isn’t a miracle,” said Roseanne. “It’s just better than anything else. For Matthew to learn takes thousands of hours of repetitions. There’s no substitute for the hours and the attention he’s had.”

The argument that patterning robs brain-injured children of their childhoods makes her bristle. “A kid like Matthew doesn’t get much of a childhood anyway,” she said. “And I defy anyone to have had more movies, more circuses, more attention than Matthew has had.”

By the middle of a cold Wednesday morning, Roseanne Peckins is hard at work. Jordan left hours ago for his job, monitoring the agencies that provide services for New York City’s foster children and families.

Now, Roseanne studies schedules that break each week into 42 squares, one for every hour Matthew will work. Some of them are already filled with names of volunteers. Ideally, there should be two names per square.

But this week, eight squares are blank, those being the hours Roseanne will work with Matthew. On those rare weeks when every square has been filled in, she still winds up working seven or eight hours herself.

Jordan does the shopping and laundry, and takes over Matthew’s program on Saturdays. Roseanne runs things on weekdays, and does the cooking and cleaning. Tuesday nights, she goes out with Michael, usually for pizza and a movie. And one night a week, each parent tries to get out with a friend.

“This is just the way it is,” said Jordan, a small but expansive man of 44 with scrambled gray hair and a matching fringe of beard. “I don’t even think about what it would be like if it wasn’t like this.”

When each day is broken into one-hour chunks, time passes slowly. Still, it startles Jordan to realize that in April, his son will be 9.

“In some ways, I still think of him as a baby,” he said. “I forget that he’s handicapped--we just do what we do. I wrestle with him and kiss him and make jokes with him and put him to bed.

“I see kids who were born at the same time as Matthew, kids who I thought would be his friends, and then I remember. I’ve had my life, but Matthew’s getting gypped. When I cry, I cry for him.”

Roseanne, too, spends little time thinking about what might have been. At 42, she’s an arresting woman, with intelligent brown eyes and silky brown hair that’s cropped short around her face but flows straight down her back in a style that makes her look 10 years younger.

Bitter Experience

Roseanne recalls another mother who lived in her building, before she had Matthew, who had a brain-injured son she kept in the house. “I used to think, how terrible,” she said.

One day, years later, she was sitting in the park discussing special education with other mothers. Matthew sat in his stroller beside her.

“One woman was talking about wanting to teach handicapped kids. Another said, ‘You don’t want to do that. Those kids smell.’ I said, ‘I bathe my kid as often as you bathe yours. He does not smell.’

“She said, ‘Oh, maybe not now, Roseanne, but just wait. When he gets older, he’ll smell too. They all do.’

“I was terribly hurt. I took Matthew home and said, ‘I’m never going back to the park. I’m never taking him anywhere again. We’ll just stay home.”’

Then she remembered the woman upstairs. And suddenly, she understood.

“It’s changed me,” she said finally. “There’s a piece of joy that’s been taken away. There’s a sadness that never ends, a sadness that you can’t get over, ever.”

After a peanut butter and honey sandwich on wheat bread, juice and a handful of raisins, Matthew was ready to work again. His diet is devoid of sugar, salt or additives that could aggravate the food allergies that are common with some brain injuries.

Roseanne gently brushes and flosses his teeth, while Matthew struggles unsuccessfully to break free.

Now it’s time to practice creeping. Vocabulary cards, with pictures on one side and words on the other, are scattered on the floor. As Matthew creeps to each card, his braces jingling, a volunteer picks it up and reads it to him.

The picture cards, which helped Matthew learn to creep, also helped teach him to read. It struck Roseanne as curious that once he’d crept to one and gotten hold of it, he would stare at it indefinitely.

She called Sandler, “and he said, ‘He’s reading them.’ I said, ‘Don’t be ridiculous.’ He said, ‘Nobody will look at nonsense for hours. He’s reading them. He has to be.’

“For the longest time,” Roseanne said, “I wouldn’t believe it. There are dozens of cards, broken down into categories--colors, shapes, animals. I’d put a whole bunch in front of him and I’d say, ‘Give me the one that said basket. And he’d give me the one that said basket. Finally, I had to believe it.

“Matthew was reading!”

Effective Bribes

For several years, ever since Matthew learned to read, the cards have been among the volunteers’ most effective bribes. Another is the big Gumby doll slumped in the corner, wearing a sign that says, “Please walk to me.”

“There are days when Matthew doesn’t feel like doing this. It’s the patterner’s job to try to make it fun,” Roseanne said. “You couldn’t get me to walk, 3,000 times a day, up and down the living room, for no reason. You’d have to find a reason. It’s the same with Matthew.”

One of his newest treasures is his sled, custom-made by patterner Loren Sherman, a stage set designer who spends much of his spare time making equipment for Matthew. Sherman is awaiting a patent on Matthew’s special wheelchair with the chair that lifts off and fits easily into seats at theaters and restaurants.

He’s also designing a typewriter with big letters that are easy to push. It will fit on the worktable that attaches to Matthew’s chair. An ordinary keyboard will fit on the side for volunteers to use. Roseanne is hoping it will enable Matthew to one day carry on conversations.

Typing lessons have already begun. The other day, Matthew pointed to an “r,” then an “a” and a “z.” He looked up expectantly. It took a minute for Roseanne to catch on. “Raz?” Raisin! Of course.

Loren Sherman said working with Matthew has taught him a great deal about patience and acceptance. “It’s like an exercise in dealing with life as it is. Besides which, I feel very good when I’m with him.

“When I started, I had some fears that he would be strange, or that I would find it disturbing to see him. But it was obvious to me immediately that there was a living person in there, a person who understands everything.”

Vera Sampson was putting in two hours a week as a patterner when she slipped a disc in her back and could no longer lift Matthew onto the table. She decided to become a coordinator of Matthew’s other volunteers, spending hours on the telephone trying to fill all those squares.

At the moment, Vera is especially worried about the volunteer shortage. Her active list, at last count, numbered 84, but some of the actors are out of town working, and several senior citizens are in Florida.

Recruiting is another of Vera’s jobs. Indeed, it is everyone’s job.

Armed with flyers, Matthew’s volunteers stalk the West Side of Manhattan, taping his image on windows in banks, stores and bus stops. In summer, they’re fixtures at street fairs, where they man tables covered with his picture.

It was at one such street fair where Vinnie Petrarca, an actor, finally signed up. He’d seen Matthew’s picture many times at the bank.

He said working with Matthew has reinforced his belief that “a community can make a difference. But I don’t have any high-minded feelings about doing this. This is just something I do. This is the friend I see every Monday.”

Subject of Songs

Michael Sansonia, a musician, is another volunteer who has used his talents to help Matthew. He’s written one song and is working on two others.

“One thing that strikes me is how hard he works,” said Sansonia. “I come once a week and it’s not easy for me and that’s one hour. He does this all day.

“I don’t know what kind of good a program like this does in the long run. But I’ve been told that Matthew wasn’t expected to live very long, and he wasn’t expected to walk or talk ever.

“Well, today he’s alive, and he walks and he’s learning to talk. That much I do know.”

Having so many strangers in the house isn’t easy, said Michael Peckins. “I can deal with it, though. In the long run, it will be better for Matthew. When my parents are older, I think he’ll come live with me.”

Like his parents, Michael doesn’t dwell on Matthew’s handicap. “It happens. A lot of people are born, and it just happens sometimes.”

He pauses for a minute, his brown eyes narrowing. Then: “It’s possible that God gave him to us because we could take care of him better.”

Those times when life brings Matthew face to face with all that he can’t do are among the toughest, for him and his parents.

His best friend, Joey Ruchinsky, was born three years ago at the Peckinses’ apartment, just as Matthew had been six years before. The two boys were inseparable for a time.

“Then, one day, Joey got up and started walking. He walked away from Matthew, and Matthew saw that he couldn’t keep up with him any more. You could see the look on his face,” said his mother. “It was sad.”

Roseanne, who asks volunteers to be mindful that Matthew understands everything, was reminded herself the day she was talking to someone about his handicap and he overheard her and started to cry.

Since then, Roseanne has taken great care to explain new things to Matthew, like the various remedies they’ve tried to relieve the spasticity in his legs.

They’ve tried acupuncture, massage, herbs and hypnosis. Now, they are researching rhizotomy, a new surgical procedure in which selected nerve fibers in the spinal cord are severed. In some cases, speech has also improved as a byproduct of the surgery.

As she does with virtually everything that affects him, Roseanne discussed the prospect with Matthew, using his poster board to help him respond.

“His opinion is, it isn’t his favorite thing in the world. He made a face when we talked about it, the face that says, ‘This is very crummy,’ ” she said.

“He looked very somber and scared. But yes, he said, do it. He pointed to yes. I told him, ‘You’re really a trouper. You are a really brave boy.’ ”

It is late afternoon now, and daylight is fading. Roseanne’s schedule shows yet another empty square, the third one today she must fill by herself.

At five past the hour, she’s back in the living room. Matthew’s legs are strapped into his braces, his fingers are gripping the rungs of his overhead ladder, and he is ominously close to tears.

There are days, his mother has said, when Matthew doesn’t feel like doing this, when the patterner must try to make it seem fun.

Roseanne scoots from one end of the ladder to the other, blowing soap bubbles for Matthew to pop with his fingers. He walks slowly, intently, making his way to each shimmering bubble she holds out for him.

For a while longer, Matthew travels back and forth between bubbles, weaving a bit more with each turn, a weary swimmer who has done too many laps.

All of a sudden, the dam bursts. Matthew sways dangerously, and Roseanne reaches him in a flash, just as he lets go of the ladder and falls sobbing into her arms. They huddle in the dim light of the living room, mother and son silhouetted against the window.

In the background, the timer ticks soothingly, marking the minutes as they wait for the storm to subside.