Fourteen-year-old Elizabeth Gianetti likes to cook, watch movies, vacation with her family, train with the junior high volleyball team, add a streak of color to her hair, and talk. Typical fare for a seventh grader. What is not typical, however, is the journey that brought Elizabeth from a non-verbal 3-year-old terrified by daily life to a sociable teen in tune with her peers on many levels.
“I get excited when I think of all the progress Elizabeth has made,” said Michele Gianetti, Elizabeth’s mom, a Canfield St. Michael parishioner and author of “i believe in you,” which chronicles her daughter’s odyssey. Through stages of guilt, doubt and achievement, the book details the slow, tedious path that enabled Elizabeth to flourish.
Elizabeth, the middle child of Michele, a registered nurse, and John Gianetti, an internal medicine physician, was born with dyspraxia and sensory processing disorder [SPD]. Dyspraxia involves difficulty with motor planning, organization of thought and sequencing of action. In Elizabeth’s case, skills such as learning to run, using scissors and talking had to be broken down into steps and repeated countless times before she could master the tasks. Sensory processing disorder involves the way one’s body inputs sensations such as heat, cold and touch and processes them through the nervous system.
Michele wrote “i believe in you”, a simple, heartfelt publication, to inform and offer hope to others engulfed by similar circumstances. She also wanted to highlight the accomplishments of Elizabeth who possesses an easy, gentle personality. “My most important reason for writing the book is that Elizabeth would say, ‘Mommy, nobody understands me.’ This story helps others understand her,” said the author. The Gianetti family also includes Emily, 17, and Michael, 5.
As an infant Elizabeth’s shrill, high-pitched cry could only be quieted by holding her constantly. Because her SPD made all sensations feel offensive, the Gianettis couldn’t put baby shoes on Elizabeth’s feet. “In the beginning, the world was too scary for Elizabeth, and you can’t develop if you’re afraid of everything,” Gianetti said.
At the age of one, Elizabeth didn’t walk, displayed no curiosity, was bothered by loud noises and wouldn’t grab or explore colorfully wrapped gifts. “Her first Christmas, we rationalized the behaviors. The second Christmas we knew something was wrong and the third Christmas was sad. I would pretend for Emily that all was well and then be dying inside knowing that things were very, very wrong,” said Gianetti.
Although both John and Michele are medical professionals, they had little knowledge of dyspraxia or SPD. The couple started by taking cues from Elizabeth. “We knew crowds and long lines would be tough so we learned how to get in and out quickly,” Gianetti said. Unsure of Elizabeth’s potential, the Gianettis enlisted the help of experts and began a regimen of body brushing and joint compressions every two hours along with weekly speech therapy and specialized occupational therapy sessions, both of which required hours of follow-up work at home. “I know I pushed at times when it made Elizabeth mad but I wanted her to have a shot at life,” admitted Gianetti.
Amidst the intense therapy were frequent ear infections and medical appointments to fend off potential hearing loss along with steps and missteps in selecting academic programs for Elizabeth. “My fight was bringing these two disorders to light and having everyone believe me,” said Gianetti. She likened the process to a chess match, always having to plan three steps ahead. Inherent in the daily schedule was meeting the needs of Emily and Michael. “I never wanted to skip over them. My kids are my heart.”
Through all the struggles, Gianetti’s faith sustained her. A prayer service at a local church in which the speaker and the congregation prayed over Elizabeth marked a turning point. “I always had faith, but this strengthened it,” she said. Each day, Gianetti would pray outside Elizabeth’s room, “Please, God, let today be the day she is better.” While nothing changed, Gianetti persevered through a roller coaster of gains and setbacks.
Part of Gianetti’s faith included listening to the quiet voices in her head which she called “God’s intercessions to my mind. When they were followed, I felt peaceful, like I was on the right track.” An unexpected phone call, an idea pondered while exercising, and a friend’s chance encounter with an SPD therapist are some of those faith-filled moments, Gianetti said. Along with faith, Gianetti credits her daughter’s progress to the support of family, friends and “Team Elizabeth,” a cadre of therapists and teachers.
“i believe in you” details more than a family’s struggles. It also recognizes the gifts Elizabeth brings to her family. “The challenges make us appreciate the simple things in life,” said Gianetti. Seeing their children laughing together or hugging each other and enjoying family time are moments for which the Gianettis give thanks. “John and I were never focused on materialism but that’s been magnified because of this experience. My kids are very close. They value each other, not things, and those are gifts that came from Elizabeth,” said Gianetti.
Because the disorders will always be part of Elizabeth’s life, the challenges continue, although in evolving ways. Current concerns are enhancing Elizabeth’s ability to self-regulate her behavior, problem-solve and channel emotions appropriately. “When we have a tough day, Elizabeth, who is very spiritual, will pray ‘God guide our steps.’ We always pray that God will help us get through whatever crisis we have,” noted Gianetti. Mother and daughter have a nightly chat time as an outlet for Elizabeth to express frustration, satisfaction with her day, or simply unwind.
Noting her pride in Elizabeth’s hard work and achievement, the Gianettis advise other parents of special needs children to “take the small successes and relish them. It may not be what the world would be excited about, but be happy with it.”
“i believe in you” is available at tatepublishing.com, barnesandnoble.com, and amazon.com. Michele Gianetti will also have a book signing 11 a.m.-2 p.m. May 5 at JMJ Spiritual Center, 3408 Canfield Road, Canfield.
Mary Ellen Pellegrini, a former teacher and a free-lance writer for the Exponent, also writes for Catholic magazines and parenting publications