The Hard Way

By Meg Laughlin

Michael Sayih, 3, is crying in the doctor's waiting room. His mother lifts him out of his oversized stroller, which serves as a wheelchair, and bounces him up and down on her lap, trying to calm him, as well as herself: ``It'll be OK,'' she says over and over.

Patty Sayih is nervous. It has been over two years since she rejected the medical advice of pediatric neurologist Luis Alvarez and put her brain-injured child through a difficult series of alternative therapies instead. Now she is back in Alvarez's office, hoping he will tell her she made the right decision, that all the sacrifice and pain was worth it, that Michael has improved dramatically.

But she knows that no matter what Alvarez tells her, she still does not have what she wants most for her child. He still cannot walk.

In June 1992, Michael Sayih came into the world by Caesarean section two months early after his mother began to hemorrhage. He was small enough to fit in a shoe box. Translucent and veiny, like a baby bird. His breathing was fast and labored, his lungs weak. He was put on a ventilator in an incubator. After a tense week, Michael stabilized. Two weeks after his birth, his parents brought him home to their Northwest Dade townhouse. He should be fine, the pediatrician said.

But six weeks later, an MRI showed he wasn't fine. ``Significant brain damage,'' the pediatrician told Patty and Jimmy Sayih. He drew something that looked like a walnut on a napkin. This was Michael's brain he said. Then he burrowed dark spots in the walnut with his pen to show the problem spots. While the doctor talked about oxygen deprivation and damage in the midbrain, she stared at her second child, asleep in a hospital crib. He was small but appeared normal in every other way. Was this the best he would ever be? Would he get larger and larger but remain totally helpless like a newborn? ``Too soon to say what his future will be,'' said the doctor. ``We do know that his ability to learn and his motor skills will be affected.''

When Patty and Jimmy got to the car, Patty started to cry. She didn't stop for six months. She went over and over what she might have done wrong to cause her little boy to be brain-damaged. Maybe it was carrying his 1-year-old brother, Adam, and those heavy bags of groceries when she was pregnant. Or maybe it was the wait at the hospital to go into surgery, while she sat, hemorrhaging, in a wheelchair in admissions. Or maybe it was nothing anyone could have helped.

But regardless of what it was, the damage was done -- and would become more and more apparent as time passed.

At about 9 months, when most babies are pulling up to stand, Michael Sayih closed into a ball: His hands tightened into fists. His arms crooked shut like wings. His knees drew up under his chest. Patty tried to work his limbs the way the physical therapist (who visited an hour a week) showed her, but they always snapped back.

``Can you imagine what it feels like to have your baby become like a frozen turkey in the freezer case at Publix?'' asks Patty.

Michael cried constantly -- a pained cry. He couldn't sleep or hold food down. Neither could Patty. She went around like a zombie. Her other child, Adam, 2, started hitting and kicking people to get attention. Jimmy found excuses to work extra hours as a city of Miami cop and go to the gym so he wouldn't have to face what awaited him at home.

In desperation, Patty took Michael to pediatric neurologist George Engle in Miami Beach hoping to hear some good news. But Engle's report was even worse: Michael was a ``quadriplegic with a significant amount of cerebral palsy.'' The child had ``considerable damage'' to the midbrain, said Engle, as well as ``a small brain.''

``The outlook is bleak,'' Engle said. ``But there are miracles. No matter what, love him.''

Looking back, Patty thinks this is the moment she turned away from traditional medicine: ``I felt I had to do something,'' she says. ``And there was nothing in traditional medicine.''

Building Better Babies

Patty heard about the Institutes for the Achievement of Human Potential in Philadelphia from a friend in Colorado and sent off for information on the institutes' program for brain-injured children. When she showed the information to Michael's physical therapist, the therapist cringed and said she wouldn't recommend the program: She had recently seen a segment on 60 Minutes critical of it for being too demanding.

Patty sent for the 60 Minutes transcript but wasn't dissuaded: ``I figured I could handle demanding,'' she says.

She called Dr. Engle and asked him his opinion. Engle told her he couldn't recommend it: ``Be careful,'' he said. ``A lot of people out there will be happy to take your money.''

The institutes, run by physical therapist Glenn Doman, have a program for brain-injured kids, and a program for ``well children'' called the Better Baby Institute. Doman claimed the ability to turn normal infants and toddlers into geniuses by challenging more of their brain-power than is normally challenged. His program for brain-injured kids is based on the same idea: Unused portions of the brain can be called into service through proper training to take over the work of the brain-injured areas.

Doman's therapy begins with the idea that learning to crawl organizes the brain for all future learning. In the case of disabled children, parents and helpers forcibly move the child's limbs to simulate crawling. Doman claims this ``patterning'' is the child's best hope to learn to crawl on his own, and ultimately walk.

Patty read Doman's 300-page book, What to Do About Your Brain-Injured Child, and was impressed. Doman claimed his work had helped thousands of brain-injured children. The book contained example after example of kids like Michael who had gone on to walk and talk. The book ended: ``Is it not obvious that all children can be all things and that giving them the opportunity to develop their brains is a joyous process for mother and child alike?''

Patty sent in the registration money. Then, she took Michael to Miami Children's Hospital to Luis Alvarez so she could document a before-and-after profile of her son with a pediatric neurologist. When she told Alvarez she was taking Michael to Doman's institutes, he did not try to dissuade her: ``I told Mrs. Sayih that I thought the stimulation in that program would be good for Michael's mobility,'' says Alvarez. ``But I said I had seen it cause a lot of stress and guilt in parents, and this concerned me.''

In July of '93, when Michael was 13 months old, Patty and Jimmy Sayih arrived at the institutes in Philadelphia. They couldn't get over how impressive the compound was: august stone buildings on 15 acres of rolling green lawns. Groves of trees with their Latin names at their bases. Immaculate labs and paneled lecture halls. The Sayihs were impressed to see small children -- the institutes' clients -- play violins, scan thick books, recite Shakespeare and speak articulately about how happy they were.

Jimmy and Patty paid $4,100 (which they charged on credit cards, along with air fare, hotel and meals, because they hadn't saved enough on Jimmy's cop salary) for a week of lectures, three days of evaluations of Michael and a detailed program to take home.

The lectures went from 8 a.m. to 6 p.m. with a 30-minute break for lunch and 10-minute breaks between classes -- barely enough time to run to the bathroom. There were no vending machines or water fountains on the compound. Each night, Patty and Jimmy arrived back at their hotel hungry and exhausted.

``It made me start to wonder if feeling successful there was somehow tied to being uncomfortable,'' says Patty.

Rosalind Doman, Glenn Doman's daughter-in-law and the institutes' associate director of Physical Excellence: ``We keep our children on strict schedules and diets, and we don't believe in having anything available that might tempt them. We also want their parents to know we mean business.''

A Race Against Time

Michael was put on a ``neurological organization program.'' Patty learned the program for Michael so she could do it herself at home. It would require a great sacrifice on her part: 12 hours a day, seven days a week of total focus on Michael.

Before having children, she had worked as a skin-care specialist at a salon. When Adam was born, she quit, thinking she'd go back to work when the kids started preschool. But now, with the demands of the institutes' program, she didn't have time to go to the grocery store, much less think about going back to work.

Doman's literature said that ``nothing in the home should be a distraction from the teaching environment'' and the Sayihs followed the instructions to the letter: They padded the dining room table for his simulated crawling exercises. They made a slide out of Masonite so they could ``program forward motion.'' They moved furniture out so the house would provide no obstacles to crawling, in the event the patterning worked.

Flashcards replaced toys. A ``standing box,'' which Michael was strapped into in a standing position, replaced the child's highchair. A board on the floor replaced his crib so he could crawl in the night if the urge hit him. His parents strapped two feet of PVC pipes to his back when he slept so he wouldn't roll over. That way, the institutes taught, he would always be on his belly, ready to crawl.

Michael's 12-hour-a-day program: Simulated crawling exercises 18 times a day. Going down a slide headfirst on his stomach 20 times a day. Hearing startling sounds -- clanking of pots, slamming of doors -- 20 times a day. Looking at 100 flashcards of printed words and accompanying pictures three times a day. Breathing exercises 56 times a day.

``You are in a race against time,'' the manual said. ``Participate joyfully and happily.''

The breathing exercises alone took nearly six hours: Patty would place a plastic bag with a small hole at the end over Michael's face for one minute. Then give him a five-minute break. Then put the bag over his face again for one minute. Then repeat the cycle 56 times. Every day. The institutes taught that the exercise forced deeper breathing, which got more oxygen to his brain.

Patty started at 8 every morning and finished at 8 every night, with the help of volunteers, which she got from advertising in the paper. Meals had to take place simultaneously with exercises to complete the program. The family would sit at the dinner table with Michael strapped to his plywood box. Patty held up flashcards with one hand and forked food in her mouth with the other. At all times, she kept a timer nearby to keep her on schedule.

Michael's knees, elbows and knuckles got raw and bloody from the forced crawling. He screamed and cried whenever his mother got near him. There was no time for joking or snuggling and little time for Adam, except when he participated in Michael's exercises. To get attention, Adam would sock the volunteers or hang on to his mother and refuse to let go.

``I was always telling Adam to get out of the way and quit it, and always cheering Michael on,'' says Patty. ``I hope I caught on in time so Adam wasn't damaged.''

After a few months of Adam's tantrums, Patty enrolled him in a gymnastics program in the mornings. She also bought him Dr. Suess books, which she would read to him over and over during Michael's breathing exercise breaks.

As for Jimmy, Patty had time to be with him only when they were making new flashcards late at night. Patty resented his life out of the house; Jimmy resented his home being run by a timer. They both agree: ``Our family life went to hell.''

After a frenetic month on the institutes' program, Michael changed for the better. He quit vomiting after every bottle and started sleeping all night. Also, his arms and legs started to unlock.

``As sick as the whole thing sounds,'' says Patty, ``it was better than doing nothing and watching him cry all the time.'' After eight months, Michael, almost 2, did something Patty considered miraculous: He crawled one inch, commando style, pulling himself forward with his upper body. In that one inch, Patty saw her son's future, a future that included walking and talking.

Crawling for Food

She headed back to Philadelphia to have Michael re-evaluated for $3,000 more, which was donated by a trust fund for police officers' families. In Philly, she got a new program for Michael and much praise from institutes' personnel for his successes. He had ``victories'' in hearing (he flinched at loud noises), limb mobility (his arms and legs were flexible), belly crawling and flashcard awareness (he seemed to indicate the right card by looking at it on command). Rosalind Doman told Patty she had ``moved heaven and earth for Michael'' and should consider herself a ``Professional Mother.'' It was time for Michael to graduate from the ``Aspirant Program,'' said Doman, to the ``Intensive Program.''

``Oh, great,'' Patty told her. ``like what we were doing wasn't considered intensive.''

But Patty quickly got the hang of the new program: ``I was so psyched,'' she says, ``I came home and went at it like a freight train.''

In addition to the old exercises, Michael was required to ``crawl for food, information, rewards and companionship.'' No more family dinners with flashcards. No more being in Mommy's arms to get a bottle. Instead, all sustenance was placed out of Michael's reach and he was told if he wanted it he had to crawl to it.

``It seemed wrong to me to make him crawl for food and love,'' says Patty. ``But I did it anyway. I was to the point where I'd jump off a bridge on Saturday at 1 a.m., if the institute told me to do it.''

Michael got so he could pull himself commando style all over the house. His left hand opened up so he could grasp small things. Patty watched his eyes, which were crossed, move across the words and symbols on flashcards. She was certain Michael was reading, even though he didn't speak.

In six months, it was time to take Michael back to the institutes to be evaluated again. Patty expected rave reviews, as before. But this time, Patty was deemed a failure. While Michael had improved, Rosalind Doman explained, he should have improved even more. The problem, Doman explained, was that Patty was ``taking so much time away from the program.''

Doman was referring to Patty's decision to seek out other mothers participating in the institutes in South Florida and arrange for them to help each other. Patty had related this innovation excitedly, expecting praise. Doman frowned. This exchange was unacceptable, she said. As Patty sat in her office with Michael sleeping on her lap, Doman wrote in Patty's instructions: ``Mother must do program in her own home without the support of other parents.''

``I tried to tell her gently,'' says Doman. ``The program is individualized for each child and there was not time to do what she was doing.''

When Patty started to cry, Doman handed her a Kleenex and told her to pull herself together; they had work to do. Just then, Michael, who had been sleeping on Patty's lap, woke up and began to cry.

Doman told Patty to tell Michael to stop crying. When he didn't, Doman told her to put Michael outside the room on the floor in the hallway, come back in the office and close the door. Brief isolation was the way the institutes dealt with the temper tantrums of an undisciplined child, Doman said.

``I did it,'' says Patty, ``and I could kick myself for that. What kind of mother would leave her afraid, crying child alone in a strange place?''

The Law

With Michael screaming in the background, Doman told Patty she needed to be trained in using ``The Law'' -- the institutes' form of discipline -- to condition Michael. It involved a reward system in which poker chips (redeemable for privileges, like listening to a song) were distributed for good behavior and taken away for bad behavior. It meant that Patty and Michael would wear belly packs at all times so chips could be stored, Doman explained.

Patty said that the program was so time-consuming she didn't know how she'd have time for an intricate reward and punishment system. Doman said Patty would have to go to more classes to learn.

Back in Miami, Patty continued with the program, but half-heartedly. She knew how other parents coped with the unrelenting demands of the program: ``They cheated,'' she says. ``They'd write a fake daily report in their log then take off for the beach or the mall. No one could keep up the pace without an occasional day off.''

But she was still afraid to quit. Michael had improved. And, she reasoned, even if the program stressed her out, it gave her something she desperately needed: ``The feeling that I wasn't out there on my own, a feeling that I was connected to something larger that was keeping tabs on Michael and me.''

Six months later, when Michael was 32 months old, Patty took him to Philadelphia for a fourth time. By then he could say a few words: ``blue, bye, spoon, no.'' He could match dots and numbers. He could belly crawl 300 feet. He was doing so well, Rosalind Doman told Patty, it was time to make long-term goals for him. Michael needed a ``life plan.''

Doman told Patty to write down a reasonable date in the future when Michael would reach the goal of walking. If he didn't walk by that date, Doman explained, there would be no more they could do for him.

``I got bold,'' says Patty. ``I told her I didn't like the sound of a failure date. I told her I didn't want to doom Michael.''

Doman says Patty misunderstood the assignment: ``I did not ask Mrs. Sayih to pick a failure date; I asked her to pick a dream date -- a date of achievement, a reasonable date for reaching his goals.''

The Life Plan booklet explains the purpose of the date this way: ``Some of the children we see make it all the way . . . Others retain some small remaining problems . . . Others fail . . . If the child proves to be one who does not make it, then it is essential that we know . . . that we are failing . . . ''

When Patty insisted that it was a failure date, Doman told her to forget the life plan and dropped it in the trash can by her desk. Patty started crying and asked Doman if that meant Michael was kicked out of the institutes. Doman responded: ``I don't know, yet, Mrs. Sayih. We'll have to see.'' Patty says she can't believe her reaction: ``I begged Rosalind to let Michael stay in the program. I practically got down on my knees. I was like a cult member. The institutes' psychology works on you kind of like the line at the old Studio 54,'' she says. ``You think more about being chosen than whether you really want to be in there dancing.'' When Patty returned to Miami with Michael, she continued the 12-hour-a-day program with him, but she began to seriously question her desire to keep dancing.

Her doubts were fanned by others: A couple of the volunteers told Patty they could see the toll the program was taking on Jimmy and Adam, as well as Michael and her, and they were worried. Patty's parents, who rarely interfered in Patty's decisions, spoke up now: ``That place is driving you crazy,'' her father told her. ``Your mother and I think it's time to get out.''

Finally, Patty agreed. For all the good they seemed to have done Michael, the institutes had caused her too much stress and guilt.

But Rosalind Doman says this: ``The institutes do not cause the parents of brain-injured children to feel stress and guilt. They have enough stress and guilt on their own. Mrs. Sayih felt like crap, and we tried to make her feel better.''

Music to Her Ears

Although Patty was done with the institutes, she still wasn't finished with alternative methods for healing Michael. She heard from friends about Gene Lewis, who left the Doman institutes to begin a similar but more flexible program in Atlanta.

The Sayihs hired Lewis to come to Miami to evaluate Michael. ``Mostly what I do,'' says Gene Lewis, ``is listen and understand. When I got to the Sayih family, they needed a lot of understanding. I tried to give them that and a program that was reasonable.''

Lewis charged $300 a month to write a program for Michael and then consult by phone.

Patty was struck with how laid-back Lewis was. His first piece of advice: Go on a family vacation.

While Jimmy stayed home to work, Patty took the kids to Colorado for a month. They camped out (she carried Michael a lot), fished, bathed in brooks, visited Patty's old friends. A week into the vacation, Patty, Adam and Michael were at a friend's house in Denver, who had a piano. Adam had been banging away on the piano while Michael sat on Patty's lap. Out of nowhere, Michael looked up at her and said: ``Mommy, I want to play the piano.''

Patty was aghast. It was the first sentence he'd ever uttered. He could connect thoughts. He understood what ``play'' was. He pronounced each word distinctly and linked them together perfectly.

She carried him to the piano and held him on her lap while his fingers went across the keys, just as Adam's had done. ``More, more,'' he screamed when she started to take him off the bench. ``I want to play more.''

From then on, he talked and talked. But what amazed Patty more than this sudden burst of language was his smile. Finally away from the regiment that had dominated her life for nearly two years, she noticed her son had a sense of humor. Both her sons. While Adam showed himself to be outgoing and quick to laugh, Michael was wry. Patty would say something sarcastic and Michael's face would cloud up, then suddenly break into an impish smile.

``I was so thankful to see that inside those robot kids of mine were real people with real personalities,'' says Patty. When Patty and the boys returned to Miami, she began the new program: Four hours a day, five days a week, with weekends off. Lewis told Patty that she must not make Michael repeat exercises that made him cry. Nor should he have to belly crawl for his basic needs. Michael was to sleep in a bed, not on a board. He also advised her to get a baby sitter one night a week so she and Jimmy could have time alone together.

Jimmy rearranged his schedule so he could be with Patty and the kids every night and all day on weekends. They got in-line skates and a lightweight cart for Michael so they could push him when they skated through the neighborhood.

``Gene Lewis gave us back our lives,'' says Patty.

The Black Sheep

Lewis introduced Patty to Harvey Good, a London-based doctor who got his medical degree in Mexico. Good told her about a drug he said would help Michael's brain make better connections so his motor skills would improve: brain cells of unborn sheep used in some European spas to rejuvenate cells. The treatment -- which costs about $400 every six months -- is not approved in this country. It is illegal to sell the drug (though not a crime to possess it). Patty learned how to get the drugs from Germany. She doesn't want to say how.

Before Patty gave Michael the sheep cells, which have to be injected into the blood, she wanted to consult with Luis Alvarez, the pediatric neurologist at Miami Children's Hospital. In early April, she took Michael, who will be 4 in June, to Alvarez's office for the first time in almost two years. Alvarez told her he was pleasantly surprised to see that Michael was as verbal as he was, and also as flexible. (Michael kept screaming: ``I want to go home!'')

``He's doing much better than we expected,'' Alvarez told a gleeful Patty Sayih. But, Alvarez said, Michael needed surgery on his eyes to make them uncross so he could focus more easily when he tried to read. He also said Michael needed tendon surgery on his legs to loosen them so he would be capable of walking.

Patty balked: Michael could see his flashcards fine if she held them in the right position. Besides, she said, she knew that the surgery on both the eyes and tendons would require general anesthesia, which scared her, and they sometimes had to be repeated.

Alvarez countered: Even if the surgeries had to be repeated, they were 45-minute outpatient surgeries that could make a big difference in his life: ``Now that I see what promise Michael is showing, I'm going to bug you about the surgery,'' said Alvarez. ``You don't want to wait too much longer to help him.''

Alvarez admitted he couldn't guarantee that the tendon surgery would enable Michael to walk. But, he warned, he could guarantee that if Michael didn't have the surgery he would never walk.

``I think I want to try more alternative methods before I consent to his being cut,'' Patty told Alvarez. Then, she asked him about the sheep cell injections she wanted to try. Alvarez said they could not possibly do any good because they would break down in Michael's blood and do nothing for his brain.

Robert Cullen, the head of pediatric neurology at the hospital, had told Patty the same thing: ``The sheep cells are totally worthless,'' said Cullen.

But Patty said she still wanted to try the cells, as long as they wouldn't hurt Michael.

``Probably not,'' Alvarez told her, ``But I don't rule it out.''

Then Alvarez asked: ``Mrs. Sayih, why are you so opposed to scientifically proven remedies and so ready to try expensive experimental therapies that have no scientific standing?''

``I don't know,'' Patty told him. ``I'll have to think about it.''

Later that day, she came up with this: In her early 30s, she had an ulcer, and an internist gave her medicine that made her sick and didn't help the ulcer. It was radically changing her diet -- something a friend recommended -- that shrunk the ulcer, she says.

Then, a few years later, she had terrible pains in her jaw from grinding her teeth at night. She went to doctors and dentists and spent thousands of dollars on elaborate metal contraptions and pills that did no good. Finally, what cured her, she believes, was going for craniosacral massage therapy -- skull and spine massage -- at the Upledger Institute in Palm Beach Gardens, which claims that the application of gentle pressure helps the body heal itself.

And then Michael was born, and doctors offered so little hope.

``With Michael,'' she says, ``I had to find people who could give me something to at least try. In alternative medicine, I got that. Alternative people are full of suggestions.''

A Shot in the Dark

Despite what her doctors told her, Patty was determined to give the cells a try. One night last month, she held Michael down while Jimmy approached him with the hypodermic needle. Patty told Michael that they were giving him shots to help him walk.

``I want to walk,'' said Michael, before he let out a yelp when the needle pierced his skin. The instructions said to give him three shots, but after the first, he tightened so much Jimmy couldn't get the needle in.

``It was horrible,'' says Patty, ``like trying to punch a paper clip through leather.''

Michael was wailing hysterically and screaming, ``No, don't hurt me!'' while Patty was trying to calm him by reminding him the cells could help him walk. By the third shot, the cells, which were in saline solution, had clumped into a huge ball right at the entry site, and Patty tried to rub the lump down, while Michael tried to squirm away. Finally, he cried himself to sleep.

A day after Michael was injected, his right hand -- ``the hand I don't like'' Michael called it -- which was almost always balled into a fist, opened up and stayed that way. For the first time in his life, he held his bottle with two hands. Patty was ecstatic. She acknowledges it could have been all the attention he was getting that provoked him to open his hand. She also says he had opened his hand for a few days once, after she took him to the Upledger Institute for massages. But she still attributes his new ability to the sheep cells, and is on the lookout for more improvements. She has decided she made the right decision to put Michael's eye and tendon surgery on the back burner.

``Don't get me wrong,'' she says. ``I haven't turned completely away from the `doctor-doctors.' I have great respect for the team at Miami Children's Hospital. I just want to do as much as I can before we have to resort to their methods. It's so hard to know what's right when you have a child like Michael. Everything is such a big deal.''

Robert Cullen: ``We pediatric neurologists used to be very critical of parents like Mrs. Sayih. But we're not anymore. It's a touchy thing -- this balancing hope and reality -- and we need to be patient.''

But Cullen doesn't want to give false hope: Whatever progress Michael made slaving away at patterning, Cullen says, could have been accomplished with a couple of hours a day of traditional therapy. ``There was no reason to put the child through that,'' he says.

For Mother's Day, Patty has decided to take today off and go to a spa. She'll get a massage, a facial, lie around by the pool -- pay people to pamper her. Then Jimmy and the boys will meet her for dinner. As is the tradition, they'll hand her a big bunch of flowers and cards the boys have made. Michael will hold a crayon and Jimmy will help him write his name.

``Who could ask for more?'' Patty says, then starts to answer: ``Well, there is one thing that would make my year. If Michael got on his hands and knees . . . ''

But she stops herself and begins again: ``Who could ask for more? Not me.''