Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, January 12, 1992 TAG: 9201100208
SECTION: CURRENT PAGE: NRV-1 EDITION: NEW RIVER VALLEY
SOURCE: KAREN BROWN
DATELINE: BLACKSBURG LENGTH: Long
SUPPORT FROM THE START
Emily Coats is only 3 months old, but she already dislikes sit-ups.Helped by her parents, Emily performs sit-ups and a variety of other exercises and activities to stimulate her to develop normally.
Emily was born with Down's syndrome, a condition characterized by poor muscle tone and some level of mental retardation. Emily and other slow-to-develop children in the New River Valley, however, have a good chance of coping with their problems thanks to a program called Project Step.
The state-funded early intervention program in Radford helps babies who have developmental problems caused by Down's syndrome, cerebral palsy, premature birth or a condition that may never be identified.
For each infant who has been screened and accepted into the program, Project Step workers will prepare an individual family service plan for the infant and its family. A crucial part of that plan is the weekly home visit by the parent-infant educator assigned to each family.
Emily Coats' educator, Susan Lindsey, comes to the Coats' apartment every Friday afternoon for an hour-long session of teaching and evaluating.
Lindsey tests Emily's speech, her problem-solving ability, social interaction and her emotional development. She also checks on motor skills such as lifting her head, moving her arms, rolling over, and finer skills such as grasping items with her hands. She teaches Emily's parents, Will and Karen Coats, specific exercises or activities that will stimulate Emily to develop skills.
One weakness Emily has shown is with head control. So Lindsey places Emily belly-down on top of a beach ball. The rounded surface forces Emily to lift her head if she wants to see anything. By moving the ball forward a bit, Lindsey makes the exercise even more challenging as Emily must use even more head, neck and chest strength to see straight ahead.
In addition to demonstrating exercises to Emily's parents, Lindsey also helps them better understand their daughter's condition and what they can do to help her.
"Susan tells us specific things to do and not to do with Emily," said Karen Coats. "She tells us what to expect and educates us about what toys to buy. She takes a personal interest in us - the whole family, not just the baby."
Indeed, the program is, as Lindsey says, "very family-focused." From the time a baby is referred to the program by a health professional, social worker or even the parents themselves to the time when it is released at age 2, the project's workers consider the family's problems and goals as they decide how best to help the baby.
The family's needs, as well as the baby's, are focused on periodically in an intensive evaluation. These evaluations, which usually take place every six months, bring together the child, the parents, the child's educator and a group of health professionals, each specializing in a different area of child development.
Recently, the evaluation team traveled to Giles County to meet with 5-month-old Kayla Merrix and her parents, Mark and Sherry.
Before the family arrived, the team, headed by program coordinator Debra Billings received initial information about Kayla, who has Down's syndrome, from the educator, Mary Talbert.
As soon as Kayla entered the room, she seemed immediately interested in her new surroundings. After some initial introductions, Talbert and Kayla's mother got on a mat with Kayla to demonstrate her skills.
Billings said the evaluations are usually informal, and this session was no exception. Talbert tried to get Kayla to grasp blocks, lift her head, move her arms and track small items with her eyes. Meanwhile, the rest of the evaluation team asked the couple about other skills Kayla had shown at home. Kayla's mother beamed as she described how actively Kayla played with her jungle gym and how she liked to handle her feet.
Mary Kay Kahn, a speech pathologist, asked what kinds of sounds Kayla had been making. Kahn then checked Kayla's facial tone and showed her parents gentle activities such as tapping Kayla's lips to help wake her muscles up and stimulate consonant formation.
Renee Barger, a physical therapist, got down on the mat with Kayla to test her muscle tone and look for signals of other potential delays. "I'm looking for anything I see now that may cause problems for future skills," said Barger.
Barger did find a possible problem with Kayla's hips but assured her parents that the problem, not uncommon to babies with Down's syndrome, was very correctable, especially since it was discovered early.
Discovering problems early is the key to Project Step's success.
Studies have shown that the earlier a developmental problem is treated, the more likely it will be for the child to lead a normal life or the best life possible, said Kathy Fisher of the Greater Roanoke Inter-agency Program.
For example, Down's syndrome children who had gone through early intervention programs reached developmental milestones at or near the target age, but those who had not received early intervention experienced a 10- to 40-month delay.
Early intervention programs benefit everyone, even the state, said Fisher. Studies show every dollar spent on early intervention saves the state $4 to $7 later on special education.
Despite the proven benefits of such programs, there is one problem: Many health professionals and parents either don't know the program exists or are not educated about its advantages.
Billings said, "Some doctors have a `let's wait and see what happens' approach" when an infant shows a developmental delay. "Others have the attitude, `What are you going to do with someone that young?' " Kahn added.
Both Emily and Kayla began with Project Step when they were only a few weeks old, and both babies are at or near their target age in development. Kayla's mother said, "With this program, Kayla's done a lot. We wouldn't have known what to do."
The program also can help families by getting them in touch with other resources in the community, according to Trina Gray, an infant development specialist and member of the evaluation team.
Billings encourages parents to call Project Step at 831-5043 if they have any questions or concerns about their infant's development. Parents should not automatically assume that the child already has been referred by her doctor.
Recently, a woman called Project Step to tell them about her older child, who had had severe developmental problems when he was young. "If I'd only had someone to tell me what to do," she lamented. The Project Step personnel hope to eliminate those kinds of regret.