A PLACE FOR NICOLE THANKS TO A MOTHER WHO WON'T TAKE NO FOR AN ANSWER, CEREBRAL PALSY VICTIM FINDS HER WAY INTO PUBLIC SCHOOL

THE BALTIMORE SUN

The eight children gather in a semi-circle near the front of the classroom. Sharon Harrison, their teacher, looks at each child, her dark eyes moving slowly from face to face, as she says, "Today we're learning about people, places and things."

One child says that a house is a place.

Another child answers that a bell is a thing.

Finally, Mrs. Harrison places a drawing of a white building with a steeple on the blackboard and turns, her eyes settling on a single student. Nicole, 7 years old, responds slowly. Dozens of muscles must work together and the air must come from deep inside for her to utter the simplest sound. Nervously, Nicole raises her fingers to cover her mouth. What comes out, an abstract of garbled sounds, is barely comprehensible. But she is understood by all.

Church is place. Mama go to church.

WERE IT NOT FOR HER mother, Nicole would probably not be in this special education speech and language class at Baltimore city's Harford Heights Elementary School. She is the youngest of the children ranging in age from 7 to 9. She is the smallest. The least expressive. The child who needs the most attention. "If I leave her alone with a puzzle," says Mrs. Harrison, "I come back 10 minutes later and sometimes Nicole is still holding the same piece, still stuck at the same place."

But her mother, Louisa DiSeta, a 39-year-old patient coordinator at Francis Scott Key Medical Center, has fought for this: for her child to be mainstreamed into the city school system. She has prodded the system and pushed the law as far as it will go to accommodate her child, who has cerebral palsy. And that's why Nicole, a sweet and determined child, is in this unique program specifically developed to meet her needs, a program that is, in the words of Dr. Dorothy Coleman, head of the city's speech and language services, "still a work in progress."

Nicole, student number 000-93-5641, is in Mrs. Harrison's class because of the 1975 federal law that ensures all handicapped children the right to an appropriate public education in the least restrictive setting.

In an overburdened city school system with almost 18,000 children needing special education services out of a total school population of 109,000, what has happened to Nicole is either a miracle or a model of how the system should work.

In a city where an average of $4,200 per student is spent, #F Nicole's Individual Educational Program this year will cost $11,414. The numbers add up this way, according to school spokesman Doug Neilson: daily instruction at $6,620, speech instruction at $1,590, occupational therapy at $1,060 and transportation at $2,144.

Of course, the city school system didn't come to the DiSetas in Highlandtown and bestow these wonderful gifts on their child. Mrs. DiSeta started fighting the day her child was born and hasn't stopped fighting since.

NICOLE'S PROGRESS CAN BE measured by the charts -- where she has always fallen far below normal -- or by the small achievements that come now almost every day.

Mrs. DiSeta turns the key to the front door of a neat Formstone row house on East Avenue and thinks about what is ahead for her: dinner, laundry, cleaning and homework, playtime, bath time, bedtime and reading to Nicole.

"Everybody always says to me, 'Oh, Louisa, what a wonderful job you've done. Look how far she's come. Don't worry, hon, she'll be OK.' And I think, 'You don't know what it's like. You should spend some time in my shoes and see what it's like every day. How much we have to do.' "

Mrs. DiSeta hangs up her coat and before she's even in the hallway, Nicole is squealing "Ma-Ma, Ma-Ma," and hugging her as tight as her thin arms will allow.

"Hello, my little girlfriend," says Mrs. DiSeta, blowing kisses, as she makes her way into the kitchen, where the walls are covered with number drawings and alphabet charts for her daughter. "Nicole can count to 20," she says, proudly. "She knows her ABCs. Just listen. C'mon Nicole, let's recite the alphabet."

"Aah, Baa, Ca, Da, Eh, Ef, Gee, Ach, Iaa . . . " Nicole recites on cue, until losing her place, the letters decipherable because a listener knows what comes next.

But Nicole has already come so far. Just look for yourself, her parents urge. And a visitor can watch Nicole, slight and hazel-eyed -- some say a Louisa in miniature -- at play on the couch with Cricket, her talking doll. Cricket, blond hair pulled out in patches, ragged now, has been talking to Nicole since she was 2 years old, and they were about the same size. Now sitting side by side on the couch, they have a conversation of sorts. Cricket still does most of the talking -- "What barks and has a tail?" she asks -- and Nicole mimics the words. She talks back even when nobody's listening.

NICOLE TOOK HER FIRST step when she was 4 years old. It was Easter Sunday at the DiSeta home, where the whole family gathered after church: Charlie DiSeta, a 46-year-old truck driver, Louisa, their son Joey, now a fifth-grader at Highlandtown Elementary, and the grandparents, siblings and cousins. "We all just sat there in the kitchen with tears pouring down our faces," recalls Mrs. DiSeta.

In a certain light, Nicole can be seen as a child born at the right time and the right place to the right parents. Her disability places her in a gray zone: While she may never be fully mainstreamed into society, she is also far from being the completely dependent and retarded child a doctor predicted she would become not long after her birth. Every step she takes is one of celebration.

In the big brown cardboard box full of medical and school records and correspondence that Mrs. DiSeta keeps about her child -- a chronicle of hospital visits, 35 ear infections since birth, assessments by experts about her child's abilities -- there is also a neatly folded balloon with a pink stork design that commemorates Nicole Marie DiSeta's arrival into the world on Sept. 22, 1983.

In her first day of life, Nicole had two seizures. She was also born with six digits on each of her extremities, surgically removed when she was 6 months old.

The family sought explanations, reasons, understanding. Geneticists told the DiSetas their child had a chromosomal abnormality they couldn't explain. One doctor told the family that Nicole was retarded and had an IQ no higher than 50. When Nicole was 10 months old, Dr. Eileen Vining, a pediatric neurologist at Johns Hopkins Hospital, told the DiSetas that their daughter had cerebral palsy, a condition usually caused by damage to the brain during pregnancy, labor or sometime after birth, that affects the muscles and often limits movement, speech, hearing and learning. No one knew how severely affected Nicole would be.

"I didn't even know what cerebral palsy meant," says Charlie DiSeta. "Every day I'd be driving my truck and crying, wondering if Nicole would ever be right."

Louisa Petrosillo and Charlie DiSeta -- who met almost two decades ago at the Latin Casino dance hall in Essex -- grew closer after the birth of their second child. Yet, it was not always easy because Nicole became so dependent on her mother that she would let no one else care for her. Mrs. DiSeta's days revolved around her daughter's needs. Her tasks included removing her daughter's wastes by hand each night before bedtime because Nicole's bowel muscles were incapable of working properly. Nicole even began calling her father the only word she could pronounce: "Ma-Ma."

The family's relationships are still shifting to accommodate Nicole's needs. Joey, in the gifted and talented program for reading at Highlandtown Elementary School, once had all the attention, but now keeps to himself more, although he does like to play with his sister. Shy and protective of his family, Joey doesn't complain to outsiders.

Does his mother have a lot of time for him?

"My mother doesn't play with me so much anymore," is all he says.

But his father says, "Joey doesn't like talking about it, but sometimes he's angry."

Mrs. DiSeta also had conflicts between the demands of her job and her family. She had joined then City Hospitals after graduation from Patterson High School in 1969, working as a clerk and then a secretary in the department of neurology. Nicole became her second full-time job.

Charlie DiSeta, who lets his wife fight the public battles, tells a favorite story. Four years ago when his union, the Teamsters, would not pay for a computer called a Touch-Talker that would enable Nicole to communicate, Mrs. DiSeta vowed she wouldn't give up.

The Talker resembles a keyboard except for the numbers and pictures on the keys that when pressed by Nicole produce a computerized voice. Mrs. DiSeta persisted and finally the executive committee of the local Teamsters invited her to make her case at a board meeting.

These men, says her husband, couldn't refuse her. A tall, willowy brunette, whose accent reveals a lifetime in East Baltimore, she spoke with passion about her daughter and suddenly these Teamsters knew her: She became their wives, or their daughters, or sisters, says her husband. "And Louisa made them see Nicole as one of their children."

Three weeks later, the Teamsters sent a check for $1,600Louisa's insurance company paid $400 and United Cerebral Palsy paid the remaining $800.

WHEN NICOLE WAS NOT YET 3 -- and still crawling -- Mrs. DiSeta went to Baltimore city schools to plan for her child's education. The laws had been changing -- in 1986 a new federal law entitled handicapped children as young as 3 to appropriate preschool public education -- and, as one of Nicole's speech therapists at school says, "Mrs. DiSeta knows the law better than the lawyers."

Before the 1975 law, school systems were not required to place disabled children in "least restrictive settings." And there was no public preschool requirement before 1986.

At first, Nicole was placed in the Paul Laurence Dunbar Preschool in East Baltimore. "Nicole didn't belong there," says her mother, who took her out of the program after three days. "How could they put her in there with kids playing ring around the rosy while Nicole could hardly sit up by herself?"

Mrs. DiSeta complained. And complained. "They were just trying to get rid of me, by putting my child there. They thought they heard the last of me," she says bitterly. "But they didn't know who they were dealing with."

Mrs. DiSeta kept looking for the right program for her child. She spoke to her councilman, Dominic "Mimi" DiPietro, who wrote on her behalf to then School Superintendent Alice Pinderhughes.

Finally, the city offered a private program that the DiSetas wanted: The Delrey School in Catonsville run by United Cerebral Palsy. The cost of tuition, $8,500 per year, was shared by the city and state.

But Mrs. DiSeta -- who was slowly learning how to maneuver through the system -- saw her battles as just beginning. "I realized then," she says, "that they weren't going to give me anything unless I fought for it."

More parents need to fight, says Pat Sandusky, executive director of United Cerebral Palsy, who praises Mrs. DiSeta's efforts but wonders, "What happens to the child just like Nicole whose parents don't know the system? Will that child ultimately get the same support or will that child be left behind?"

The Delrey preschool keeps children up to the age of 5 or 6, when they are either placed in public schools or sent to other private facilities. When Nicole was 4, Mrs. DiSeta began worrying about Nicole's next placement.

"I'd get phone calls from her and I'd say to myself, 'What's the problem now?' " recalls Evelyn McIntosh, the liaison who works for both the parents and the schools. Ms. McIntosh had 300 children to worry about that year. No other parent, she says, pushed harder.

The problem was that at the age of 5, Nicole, who still wasn't toilet-trained, was not yet capable -- in the judgment of the statewide assessment team -- to attend a public school, which was what the DiSetas were fighting for.

A year went by and Nicole progressed. The DiSetas' worst fear was that Nicole would be placed at the city's William S. Baer School, which only educates handicapped children. "Nicole is a mimic," says Mrs. DiSeta. "I was afraid she would become retarded by copying the other children, that she would just sit there getting worse."

The DiSetas even investigated the possibility of leaving Baltimore city in the hopes of getting better educational opportunities for their child. Baltimore County administrators refused to evaluate Nicole until the family lived in the county. Harford County offered a more restrictive placement. And Howard County house prices were too high for the family. They decided to stay put.

Which turned out to be the best move because the assessment team gave the DiSetas what they wanted: a city school program tailored to Nicole, an experiment in placing a non-verbal child, who at the age of 6 could speak only 13 words and needed a Touch-Talker, right into a special education program housed in a regular elementary school.

Children do get more because their parents push harder, concedes Ms. McIntosh. "The reality is that sometimes children slip through the cracks because they don't have advocates. It's difficult to say whether Nicole would have gotten what she did without her mother. I would like to hope that there would have been the same decision. You know that's what we strive for."

MRS. HARRISON'S CLASS- room, with its big windows and child-sized tables and chairs, is one flight down from the main entrance to Harford Heights, at Broadway just off North Avenue.

Right away, Mrs. DiSeta worried that Nicole couldn't manage the stairs twice a day, especially going down every morning. To take a single step, Nicole lifts one foot slightly, then almost hops, with her hands out to her side for balance, before placing her foot down again. She moves as much from side to side as forward.

Mrs. DiSeta came to school every morning of the first week of classes to observe her daughter. Once, when everyone was watching Nicole maneuver her way down the stairs, she missed the next to last step, lost her balance and almost tumbled. Those who were there say Nicole caught her balance on her own. Her mother says, "I caught her."

Those who observe her placement worry about the delicate balance between protecting Nicole and allowing her to stumble and recover on her own.

Those who know the family well, including relatives and administrators and therapists, agree that Mrs. DiSeta can be overprotective, too quick to stress the negative and too ready to do battle.

Many times, says one administrator, "She doesn't give any credit to the people who have worked so hard in the school system to make this all happen for her child. People have worked hard and she just complains. It gets exhausting to deal with her."

Such criticism doesn't faze Mrs. DiSeta. "I have to keep fighting for my child," she says wearily, her eyes ready to fill with tears. "She can't speak. I have to speak for her. I'm only doing what any parent would do. I still feel she lost so much ground spending that extra year at Delrey. She's already so far behind.

"Some days, she gets all this homework and I have to laugh. Nicole can't even hold a pencil right. She can't write a sentence. All she can do is circle the right answer."

For the holidays, Mrs. Harrison asks her students to memorize a Christmas poem called "The Best Gift." Mrs. DiSeta sits at her kitchen table after a long day at work, takes one look at the assignment and says, "This is impossible. She can't do this." But then after a few minutes, she brightens and says, "I re- member thinking Nicole would never make her Holy Communion because she couldn't speak and now she's learning the Hail Mary. You know in May we're going to have her Communion."

So far the assessment team has found that Nicole is appropriately placed despite needing so much special attention. But could she ever be mainstreamed completely -- not merely sharing a lunchroom and an assembly with normal students as she does now? No one knows the answer to that.

The most optimistic is Harford Heights' principal, Clifton Ball, who says, "That's our goal for all our special education children. I see no reason why Nicole couldn't one day join a regular class."

But Nicole -- still struggling on a daily basis to keep up -- may never make that leap. And her mother may find herself more and more frustrated, say some observers.

IN CLASS, NICOLE USUALLY makes herself understood to the others, children who have not always been well understood or capable of expressing themselves. "Having Nicole in class," says Mr. Ball, "helps the other children build their own self-esteem. They all want to help her."

Of the eight children in the class -- three boys and five girls -- there is a fair range of abilities. A few seem on first observation to be too advanced for the class but slowly each child's needs come into focus. Nicole's, however, remain the most sharply drawn.

Even on the playing field, her challenges are easy to spot. On a warm day in the fall, Mrs. Harrison leads her class outside to play. All she has for equipment for this impromptu game is a plastic bat and ball. She pitches the ball to each child, offering three chances to bat. Nicole, the light brown bangs fallen like a fringe above her eyes, squints behind thick glasses. Her face is squeezed tight in concentration, her hands awkwardly gripping the bat. One ball missed. Then two. On the third try the ball is rolled and she taps it slightly. A smile spreads across her face, relaxed. She drops the bat and applauds for herself.

She is not the only one clapping.

NORA FRENKIEL is a features writer on leave from The Sun.

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