Caleb’s Story

Many of the children in the Kennedy Day School, onsite at Franciscan Hospital for Children, have a unique history and story. Twelve-year-old Caleb is no exception. Born with Cerebral Palsy as a result of complications during his birth, Caleb wasn’t expected to live much beyond his first few days. His parents, Jonathan and Andree, knew his prognosis was grim, and brought him home with Palliative Care intended to ease any discomfort their baby was in.  They decided to forgo life support, deciding that if Caleb was to live, he would need to do it on his own terms.

Caleb continued day by day in spite of the challenges he faced.  When he was six months old, he began attending the Hyman Novack Medical Day Care at Franciscan Hospital for Children.  There, he was cared for in a traditional day care setting by nurses and teachers who could meet his medical needs. At the age of three, he was accepted into the Kennedy Day School program on the Hospital campus, where he has been attending for the last ten years.

“The staff has
empathy and the
experience
required to do
their jobs well.”

The Kennedy Day School is a private school for medically fragile children who can best be served out of their local school systems. Almost 70 students attend school each day, coming from many towns in Eastern Massachusetts. Caleb’s father, Jonathan, has been an advocate for his son from his earliest days and noted, “The staff has empathy and the experience required to do their jobs well. We take great comfort in knowing that Caleb has a loving and supportive school to attend until he’s 22.”

Even though Caleb can’t walk or talk, and has cognitive difficulties, he’s made great progress in his time at KDS. When he was five, he learned a skill many take for granted: with the help of his teachers, he learned how to express his preferences. Using his eyes, he looks up for “yes” and away for “no” – when previously he was frustrated, without any control over his environment.

He also uses switches in the classroom to communicate. This year, Caleb is working on toilet training because his classroom has a private area where teachers can support his efforts and still meet the needs of other students. When the new school is completed, each classroom will have an attached bathroom, making this process easier and more dignified for children with similar challenges.

When Caleb’s sister Ellen was born, she was enrolled in the Franciscan Family Child Care Center, another program onsite at the Hospital. With both children in the same building, it made pickups and drop-offs convenient for the family.  Having non-disabled children in close proximity to children with special needs is a benefit to both programs. Children throughout the various educational programs learn how individual differences between students are a source of richness and diversity.

During the school day, Caleb enjoys music therapy, and his speech therapists use music as a reward for his efforts. Favorite selections include Beethoven, Bach, Bluegrass, and even a little Barney on occasion. Every chance they get, his family heads to Walt Disney World, where Caleb’s favorite attraction is The Enchanted Tiki Room, a Polynesian musical revue performed by audio-animatronic birds.  For Caleb, it is indeed the most magical place on earth.

“Anything he’s
capable of,
we will make
possible.”

Caleb’s father hopes that his son will have a high quality, happy, and fulfilling life. His family communicates with his teachers daily, exchanging emails and text messages about his progress.  “Anything he’s capable of, we will make possible, and we’re thankful that Franciscan Hospital for Children is our partner in achieving that.”

Want to share your story? Send it our way to stories@fhfc.org.