Sharon Tucker knew the danger of premature births after one of her twins’ amniotic sac broke at 21 weeks.
When Charles and Billy were born just four weeks later, their tiny bodies could almost fit in the palm of a man’s hand. Their skin was translucent. They weighed less than 2 pounds each.
And when the boys were finally released from the hospital–Billy at 5 months old, Charles three months later–Tucker knew her twins were in danger again, this time of failing to master the skills that should have come naturally to infants their age.
After so many months spent lying in an incubator, Charles scooted on his back to reach a toy. Billy had trouble eating. Neither one could smile. And both boys associated human touch with the pain nurses had inflicted with the needles and tubes and oxygen masks that had kept them alive.
“They were very tiny and very transparent,” Tucker said. “I didn’t really know what to expect.”
Doctors put Tucker in touch with a Child and Family Connections office in Oak Forest run by Easter Seals.
The agency referred her to Southwest Community Services, Community Early Intervention program in Harvey–one of the Chicago area organizations supported by Chicago Tribune Holiday Giving, a campaign of Chicago Tribune Charities, a McCormick Tribune Foundation fund.
At Early Intervention, therapists patiently worked with the boys, teaching them to crawl and smile and accept a stranger’s touch. And they taught Tucker, 34, and her husband, Charles Sr., 36, how to help the boys at home.
“It was learning for me too,” Tucker said. “The therapist would explain. It helped me understand what was going on.”
The Early Intervention program accepts children from birth to age 3 if they have been diagnosed with a 30 percent delay in development, according to the center’s director, Mary Pat Ambrosino. By law they are discharged from the program the day before their third birthday.
The program provides physical, developmental, motor skills and speech therapy to children at the center, 54 W. 154th St., and at home, depending on the child’s needs and the space available at home. A staff of 15 provides therapy for about 55 children, Ambrosino said.
Many of the children experience developmental delays from disorders such as Down syndrome, autism and cerebral palsy, among other medical diagnoses, as well as premature birth, Ambrosino said. Sometimes the cause is environmental. Poverty and foster care can create developmental delays due to a lack of exposure to learning at home, she said.
There are many signs, including lack of eye contact, flapping arms, delayed developmental skills–such as sitting up, standing and walking–poor motor skills, speech impairment or constant rocking back and forth.
“When they are not crawling when they should, when something just isn’t going right, they get referred to Early Intervention,” Ambrosino said.
The idea is to intervene in a child’s development early because the earlier learning begins, the greater the chance a delayed child will catch up with other children and a disabled child will acquire basic life skills.
The concept was developed in the 1970s after laws were passed that required mainstream schools to care for delayed or disabled children and adults ages 3 to 21. Parents and educators were left wondering what to do with children younger than 3.
The answer was to create Early Intervention programs that could address the needs of infants and toddlers. The programs initially were funded by grants that covered all expenses. Since 1998 they’ve been funded on a fee-for-service basis, which has forced centers to search for supplemental funds but also has allowed them to cater to a greater number of children.
Early Intervention enrollment in Illinois has grown by 20 percent annually as more parents discover the benefits of getting an early start, Ambrosino said.
One of them was Anna Benza. Her husband, Carmelo, suspected something was wrong with their son, Guy, when he noticed the baby’s “slanty eyes,” she said.
Guy was just 6 weeks old, but the Benzas were familiar with the signs of Down syndrome: Carmelo Benza’s niece, then a young girl, was born with the extra chromosome that leads to the condition.
Anna Benza didn’t want to believe there was anything wrong with Guy, her second child, now 9.
“I just thought he was born 10 days early with a squishy face,” she said.
When doctors confirmed the Benzas’ fears, the couple was devastated, Anna Benza said.
“We asked why, the why question,” she said.
Then they accepted their situation.
The Benzas shopped for a learning center almost immediately and found Community Early Intervention in Harvey, then called the South Suburban School for Special Education.
The therapist taught Guy to drink from a regular cup, to dress himself, how to snap and zip things, to eat with a fork and spoon, and how to talk slowly so he could be better understood.
They also taught the Benzas what to do to help their son at home.
“They informed me on a lot of physical and mental things to keep working on,” Benza said. “I think that’s what makes him seem so normal when he hangs out with regular kids.”
At the center, therapists work with the children in bright playrooms. A room designed for cognitive learning has puzzles and blocks and crayons. A room for physical training offers a wide swing and soft uneven stairs that teach balance and depth perception.
Dressed in miniature overalls and seated on plastic chairs, Charles and Billy Tucker sat in one of the rooms recently. They have come a long way since they first arrived, Sharon Tucker said.
Back then, Charles screamed when strangers touched him. Therapists sat the boy on his mother’s lap, then they set him right next to her, and then a few inches away until the boy slowly learned to be independent from her. Billy slowly learned to eat solid food.
Now, at just over 2 years old, the boys still have a long way to go. Both of them only recently began walking. And while most toddlers their age command about 50 words, Charles and Billy have yet to utter words such as `hot’ or `mama.’
“I said `come here,’ and Charles said `no,'” Tucker said. “That was the closest I got to a word.”
But each day, the boys make progress, and that makes Tucker happy. Twenty years ago, her children might not have made it. Back then, few babies who were born at their gestation period and weight lived.
They walk on their own and sometimes run a few steps, babble and eat graham crackers like other toddlers, getting crumbs all over their faces and the floor.
“Now I’ve got to put everything up high,” Tucker said, beaming. “Lock the cabinets. Baby-proof everything. They’re doing what other 2-year-olds do.”
