RYAN ORTIZ-MCCULLOUGH AT Daystar
Daystar program
For parents seeking day care options in and around Rochester, there exists a bevy of choices that offer creative activities and ample social interactions in an educational setting. But what about parents of medically fragile children with chronic illnesses such as bronchopulmonary dysplasia, cerebral palsy, congenital heart disease and muscular dystrophy? For these children, living with a chronic debilitating condition often requires the use of medically-driven technology to remain alive while juggling a sometimes intense and complex medication routine. Additionally, these children often need to be monitored more closely than their peers to prevent deterioration in their medical conditions that could seriously threaten their physical and mental development as well as their ability to live.
Offering Comfort and Care
For parents of medically fragile children like Jill Milliman, finding a safe and healthy day care atmosphere where her child can learn and play with peers while receiving the best medical attention can be a trying task. Milliman, a Webster resident, has a daughter, Lilyana, 3, who lives with both epilepsy and cerebral palsy. Lilyana originally spent time in a traditional day care setting, but without a full-time health professional on hand, Lilyana wasn’t receiving the proper medical treatment, and often, her seizures would go unnoticed by the staff members.
After speaking with a neighbor who used to be a pediatric nurse, Milliman was told about Daystar for Medically Fragile Children, a center located in Brighton that happens to be the state’s only pediatric day-respite center. With a stated goal of serving the needs of families with children as young as six months old through age five who are coping with serious medical conditions and developmental complexities, Milliman decided to enroll Lilyana in Daystar.
More than a year later, Milliman says her daughter has made “significant strides” in her personal development — specifically her ability to walk and to talk — and her interpersonal development, as Lilyana now feels much more comfortable dealing with people. “Lilyana has excellent educational support as part of Daystar, and she also has attentive staff who have helped her learn to walk, talk, even become better at picking up objects. She has grown so much since she started,” Milliman says of her daughter, who happily refers to the facility as her ‘Day House.’
“The staff is in tune with her medical condition,” Milliman adds. “They know to watch out for her seizures and they know all about her medications. We feel comfortable having Lilyana at Daystar because we know we can trust the people who are looking out for her. The staff will go with her into the hallway and practice walking with her. She works closely with both a physical therapist, a vision therapist and a speech therapist and she is really building her skills.”
About the Program
Daystar, which is open Monday through Friday year-round, has been around for 25 years and ensures a student to staff ratio of 2 to 1. Recently, Daystar moved into a new building in Brighton at 700 Lac De Ville Boulevard. The move has allowed the facility to offer its services to more children and families (from 12 full-time equivalent children in the old facility to 40 full-time equivalent children in the new center). Currently 26 area families have children enrolled at Daystar.
Kim Condon, Daystar’s executive director, takes care not to refer to the center as a day care, since Daystar “offers a full assortment of full-time, family-supported services for children as soon as they get out of the hospital until they start kindergarten” and features a full-time director of education with classrooms guided by special education-licensed instructors and trained therapists. The facility has 20 staff members, including a full-time education director, six special education teachers and two speech language pathologists. Additionally, since all of Daystar’s clients are children with severe medical needs, there are skilled pediatric nurses on hand to monitor these medically fragile children.
In order to qualify for enrollment at Daystar, Condon says a child must have a preexisting medical condition. Condon and her staff will schedule an intake visit with the family and offer tours of its facility. After a child has been accepted, the staff will work with the parents to create an individualized care plan that encompasses both the child’s medical and developmental needs. “Typically, you will have a child who warrants pediatric nursing, but the family’s only option after returning from the hospital is private, 24/7 nursing, which is expensive and can limit the child’s exposure to the benefits and learning experiences found in working and playing alongside a group of peers,” Condon says. “Children learn so much and grow from being around their peers, but if you have a child with a severe medical condition, they might lack the opportunity to grow from their peers and those relationships if they’re isolated at home all day with their illness.”
Daystar also offers important services to parents, such as coordinating medical coverage and offering a sounding board for working through any complications that may arise from their child’s conditions. But above everything else, Condon and Milliman both say that Daystar affords these parents the chance to relax and breathe easy knowing their children are being cared for by capable and compassionate professionals. “A lot of families need Daystar as a respite from the chaos of their lives, and Daystar can provide them with a few hours a day to have to themselves, or to spend with family and friends,” Condon says.
“I feel more peaceful knowing Lilyana is being well cared for,” Milliman adds. “You can see how much everyone there really cares about the children they work with and as a concerned parent, that’s what matters most to me.”
For more information on Daystar, call (585) 385-6287 or visit www.Daystarkids.org.
John Boccacino is monthly contributor to Rochester & Genesee Valley Parent Magazine. He reported on sports and local news for more than 6 1/2 years with the Democrat and Chronicle newspaper. He is currently the Director of Sports Information for Keuka College. Boccacino is a Brighton native who currently resides in Webster.
