Where Baby Steps Are Miracles

Posted: February 28, 1990

For a "worthless" child, Jude Maugeri has accomplished quite a lot in 2 1/2 years.

A tortoise racing against hares, he struggles for inches; his peers breeze by milestones. But his slightest gain is cause for celebration for his parents and the child-development specialists at Kingsway Learning Center's Haddon Township campus, who are equipping him to run the best race he can.

Jude and his twin, Justin, surprised their parents with their arrival on Aug. 25, 1987, at the gestational age of 33 weeks (more than a month premature). Justin was largely unaffected by his precipitous entry into life. Jude bore the brunt.

Along with soft brown curls and infectious dimples, the 3-pound, 4-ounce baby was born with cerebral palsy, defective vision and a poor prognosis. At the Philadelphia hospital where his parents, Sal and Debbie, had hoped to find him help, they were told by a doctor, "He's worthless, he's a vegetable, institutionalize him."

"I couldn't believe someone would tell me that," Debbie Maugeri said. "I was crushed; I cried for days. And I had no idea where to turn."

With Sal Jr., now 6, Christian, now 3, and Justin providing a frame of reference, the Maugeris of Laurel Springs knew Jude had problems. Most children sit erect at 5 to 8 months. Jude, at 7 months, couldn't pick up his head.

"Give him time, don't compare, kids develop at different rates - we heard it all," Debbie Maugeri said.

But time, it became evident, would not help.

At 15 months, most children are toddling. Jude, whose lower limbs are weakened by cerebral palsy, was just beginning to belly-crawl. That was when the Maugeris heard about Kingsway Learning Center's Developmental Program for Parents and Children.

"We came in November of 1988," Debbie Maugeri said. "And it's really helped. I don't know what I would have done without it."

*

The first three years of life are an extraordinary time. The basics of speech and movement are learned; the foundations of parent-child relationships are laid. For children with developmental delays, those 36 months are especially critical.

A child may be born with a neurological, genetic, orthopedic or social- emotional disorder: cerebral palsy, hydrocephalus (fluid on the brain), hypotonia (abnormally low muscle tone), muscular dystrophy, Down's syndrome, spina bifida, autism or mental retardation. Prematurity, low birth weight, difficult labor or delivery, congenital abnormalities or a family history of developmental problems can also place a child at risk.

Some problems are evident early; with others, symptoms are not readily apparent. However, a problem might be indicated when a baby doesn't seem to be smiling, reaching for objects, babbling, sitting up, crawling, pulling himself erect or playing at the pace maintained by the majority of children his age.

For children with developmental delays, early intervention programs (EIPs) provide help when it is most needed - during those critical first three years. Kingsway's program for infants and families, financed by the New Jersey Department of Education, encourages and reinforces development in disabled, delayed or at-risk children from birth to age 3. Professionals work with parents and children to help make the most of those years. The earlier the intervention, the greater the benefits.

Even the youngest children can be helped at Kingsway, depending on the scope of the problem.

"When a child comes to us, he is assessed by a team of specialists," said Florence Klein, Kingsway's EIP administrator. "Strengths and weaknesses in gross and fine motor skills, language, self-help, social and early-learning skills are identified and individualized therapeutic activities are devised. Parents and children meet once or twice a week for two-hour classes, and parents are trained to incorporate class activities into the home routine."

Infant classes are limited to six children, toddler classes to eight. Some children also benefit from individual therapy in areas of particular weakness. For children at extreme risk, at-home training can be obtained for three months.

Parent-teacher communication is fostered through notebooks that travel back and forth from school to home. Problems, concerns - and tiny achievements - are recorded, discussed and addressed. Parents support one another by sharing experiences in small-group meetings, and books and toys are available for parents' use in a lending library at the learning center.

In New Jersey, early intervention programs have existed for 11 years. In other states, they don't exist at all, according to Klein. Often, even where they do exist, those who need them aren't aware of them.

"We do a lot of community outreach," she said, "because we know these children are out there. And it's amazing how many people don't know we're here."

With 37 of 50 slots filled, Kingsway has vacancies - and more will be created in July when 26 of those 37 reach age 3, become ineligible for Kingsway's program and move on, some to public preschool classes, others to preschool handicapped programs.

It is Circle Time, 9:30 a.m. Wednesday. Five toddlers, Jude among them, sit cradled in molded plastic cubes of red, blue and yellow, like pint-size John Glenns in midget Mercury capsules. Their mothers sit on the floor behind or beside them for security.

Early-childhood teacher Madge Bradley leads the activity; on hand are speech pathologist Ahtoi Gibbons, physical therapist Pamela Moore, social worker Alisa Saraceni and nurse Debbie Landes. Occupational therapist Wendy Spivak and program assistant Marcia Levy are missing this day - ordinarily, they would be here, too, as part of the teaching team.

Bradley displays a large color picture of a snow-shrouded country farmhouse and lets each child examine it before setting it on an easel.

"Winter is here," she says, hugging herself and shivering. The toddlers hug and shiver. "Snow is falling all around," she says, reaching skyward and wiggling her fingers as she slowly lowers her hands. The toddlers reach, wiggle and lower.

The pantomime continues: donning boots, mittens, hats, then playing in the snow. "We pat-pat-pat," says Bradley, suiting action to word. Jude pat-pat- pats with the rest, a smile dimpling his cheeks, his eyes alight behind the thick glasses he constantly toys with.

Snack time. The children line up to wash their hands in a plastic basin filled with soapsuds. Jude scrabbles unaided from the cube into his metal walker, moves to the basin, plunges pudgy hands beneath the bubbles and sponges with a paper towel, which he crumples and deposits in a trash can as his mother holds the lid.

At a low round table, Landes offers wheat or rice cereal; Jude chooses wheat. "Turtle," he says, making an association with another cereal popular with the preschool set.

"So that's the nutritional choice at your house," Landes teases his mother. "Now the truth is out."

Sitting in a highchair, Jude feeds himself. Small dribbles and spills don't count.

The children then begin rotating to learning stations for one-on-one physical, occupational and speech therapy. Lessons are tailored to each child's needs and skills.

Balancing stomach-down across a large green gym ball, Jude is reminded by Moore to keep his head up. As she puts him through a routine designed to strengthen neck and spinal muscles, working particularly on his weaker left side, the youngster decides he's had it. "Go inna car," he says. "Go inna car. Go inna car. Go inna car." From a chant, it becomes a litany.

"They don't like physical therapy," Moore explains. "They don't understand we're being cruel to be kind."

She holds out a red wooden peg, first to Jude's left, then to his right. Jude lunges, full-body, for a tackle. Moore body-blocks, forcing him to use just his arms. Suddenly, Jude grabs the peg. Grinning triumphantly, he flings it beyond Moore's reach. "Go inna car," he says hopefully.

Instead, he goes to speech therapy, where, guided by his mother, he uses a specially adapted "power pad" to key in appropriate clothing choices for a child displayed on a computer screen. Pressing designated items on the keyboard, he "dresses" the child.

Finally, Jude works with "Toy" Gibbons, who lets him select small plastic cars, boats, planes and people from a bucket. Naming the item earns him the chance to play with it. Attempting to put a minuscule hard-hatted workman headfirst into a slot in the car, he notices it won't fit that way. Slowly, one-handedly, he manipulates it right-side up and puts it in place.

Mother and teacher exchange marveling glances.

"This is worthless?" queries Debbie Maugeri, speaking volumes in three words.

At 26 inches long and 13 pounds, blue-eyed Alycia Meili, porcelain-doll delicate in a too-big flowered pink snowsuit, could be Thumbelina peacefully slumbering in a rose.

One of medicine's "miracle babies," born at the gestational age of 25 weeks (four months premature), Alycia weighed 1 pound, 11 ounces and was an inch longer than a standard-size ruler. Her head, swollen from hydrocephalus, seemed much too large for her tiny body. Two months after craniofacial reconstructive surgery, she still shows the scars, a spiderweb tracery of thin red incision lines beneath a cap of downy, golden-brown hair.

Fourteen months old chronologically, she is 10 months old developmentally. Small even for that, she appears closer to 6 months old. After her birth on Dec. 22, 1988, she spent 3 1/2 months in neonatal intensive care. She recently ''graduated" from a home apnea monitor that alerted her parents if her congenitally weak lungs "forgot" to breathe during sleep.

Debbie Meili of West Collingswood, a shade over 5 feet tall and fine-boned, knew that she and her husband, Gene, 5 feet, 9 inches, probably would not parent a future NFL tackle. Nevertheless, when Alycia's older sister Tiffany debuted at 29 weeks, her petite 3-pound, 5-ounce size surprised them.

Tiffany, too, was hydrocephalic, and entered Kingsway's program at 4 months on a pediatrician's recommendation. Now a dainty 4 1/2, she is the size of a 3-year-old. Still progressing, she attends an afternoon Special Kids in Preschool program at Westmont's Strawbridge School.

Today, with her regular baby sitter unavailable, Tiffany accompanies Alycia to her class. She plays peekaboo with the baby, hiding and popping out from behind a stuffed toy she has brought along, a fluffy white rabbit with a blue- goggle-eyed stare. This is the only time Alycia smiles. Otherwise, it's as if she knows she's working on serious stuff here.

"Yeah, we thought we had seen tiny," Debbie Meili laughs, stripping Alycia to shirt and diaper and opening a plastic bag filled with squares of material of various textures. "Little we knew."

She spreads Alycia's aqua blanket on an exercise mat and lays the baby in the center. Taking out a scrap of velvet, she rubs it gently over every inch of exposed skin and repeats the process with other materials.

"Preemies haven't had much sensory experience," explains Spivak, the occupational therapist. "As a result, some are very sensitive to touch - what we call tactile-defensive. They may be disturbed by the feel of their clothing, or they may not want to be stroked or cuddled. Touching overcomes that. It also builds body awareness, because the parents name the part of the body they're rubbing down. And it lets the babies flex and stretch."

Alycia is then placed in a blue cube to which a tray is affixed. Speech pathologist Nancy Wasilewski gives her some wooden blocks. Wasilewski claps two together. "Patty-cake, Alycia, patty-cake," she encourages, trying to get the baby to copy her. Solemnly, the baby does.

"Give me the block, Alycia," Wasilewski says. Alycia hands her the block.

"Now give the block to Mommy." Alycia does.

"You can do this at home," Wasilewski tells Meili. "See if she'll follow simple directions."

Unconsciously, while talking to Meili, Wasilewski has moved her can of blocks to within Alycia's reach. The baby drops one block, then another and another, into the can.

"Look at her, Debbie," Wasilewski whispers, "look. That's wonderful."

Although Alycia hasn't started to talk, Wasilewski says she can be expected to make sounds and to respond to simple commands with simple actions. "We have a lot of time to work on talking," she says.

Spivak takes over for physical/occupational therapy. At first, she allows Alycia, on her back on her blanket, to play, in baby fashion, with her own tiny feet. Then she places her stomach down across her lap and holds a set of brightly colored plastic linking rings just out of her reach, first to one side, then the other.

"Get it, Alycia, get it," she encourages. "You can get it."

Over and over the baby reaches, grasps, pulls. Right side. Left side. Right side. Left side. Spivak claps. "That's great, Alycia. You're working so hard."

Solemnly, Alycia claps her own fragile hands.

Spivak sits Alycia erect and has her support her weight with her arms, extending her back muscles. She works on reaching again with the linking rings, this time with Alycia prone on the big green gym ball. Finally, she stands Alycia on her feet and tells Tiffany to roll the ball to her.

"Push, Alycia. Push the ball to Tiffany. That's right, push the ball," she instructs.

Solemnly, Alycia pushes the ball.

Then, a breather. As her mother changes her diaper, Alycia plays patty-cake with Tiffany. Then Meili hands Tiffany Alycia's bottle, and Tiffany guides the nipple to her sister's rosebud of a mouth.

Landes sits down to offer some tips on nutrition. She suggests the introduction of cereals and strained meats, fruits and vegetables to tempt the baby's taste buds and hasten the switch from liquid to solid foods.

Meili thanks Landes, then they carry the baby to a small medical office where an infant scale rests on a table. Carefully, Alycia is weighed and measured. She has gained a quarter-inch in length but only 2 ounces, and Landes laughingly suggests, "She grew up instead of out."

Finally, Landes gently places a measuring tape around the baby's head. ''Oh, looking good. We're looking good here," she says.

"As technology advances, there will likely be more children with developmental problems," Florence Klein predicted. "Babies are being saved now who 20 years ago probably would not have survived."

She is at a loss to explain why so many more boys than girls are seen in early intervention programs.

However, the progress that can be made by the Judes and the Alycias raises difficult questions for medical ethicists, Klein says.

"When these children survive, there are emotional, financial and family issues to be faced," she said. "Are these children too young to be able to live a quality life? Is there a point at which you can say a life is too small or too fragile to continue? Are we keeping children alive who will require intensive - and expensive - care their entire lives? Who is to provide it and who is to pay for it? I wish there were answers. There aren't any. Sometimes a choice is really no choice at all."

Klein said that often Kingsway gets children right out of neonatal units, ''and no one has educated the parents as to what they've gotten into. It's often our social worker who breaks the news of what this is really all about.

"It's hard to say where these children will be a year from now, or even a week from now," she said. "We can't look into the future. We do know our program can take them from infancy to preschool, whether it's a regular or a preschool handicapped program.

"There is lots of hope, and the encouraging thing is that their gains are markers all along the way."

comments powered by Disqus
|
|
|
|
|