gmhTODAY 26 gmhTODAY June July 2019 - Page 92

AUTHOR ' S corner Jordan Rosenfeld Jordan is the author of four writing guides and three novels. Her articles have been published in such places as: Alternet, The Atlantic, Marin Magazine, the New York Times, the Petaluma Magazine, Salon, the San Francisco Chronicle, the Washington Post and many more. Anthology Lifts up Families of Special Needs Children F or over nineteen years, Hollister author and education specialist, Ramona Trevino, has worked to offer a safe and loving educational space for many families with children of special needs. Working with these children has felt like a part of her calling and purpose, she said. “God gave me the heart so that people could trust me to take care of their kids.” After publishing a book about over- coming PTSD under the pseudonym I.M. Dauntless, she decided to lift up the voices of the families whose children she has taught over the years in a second book, an anthology titled Blossoms of My Life. In it, nine mothers share their stories of life with their special needs children (all of whom are grown now), and how they dealt with their challenges. “I want this book to give inspiration and support to parents when they learn their child has special needs,” Trevino said. “It’s a life-changing event, and it’s not the way you intended life to be, but it’s going to be okay.” “When a family receives the news that their child has special needs, it can come as a great shock,” said Sherrean Carr, Dean of Career Education at Gavilan College in Gilroy. Carr’s daughter, Taylor, has special needs. Her story is included in the anthology. “You go through a grief process because the child you thought was, is not,” Carr said. When Carr’s daughter, now 23 years old, was born perfect and beautiful after an uneventful pregnancy and 92 labor, Carr and her husband had no idea that anything was wrong. It wasn’t until Carr witnessed what she thought was a seizure while her newborn daughter was nursing that she sought medical advice at the hospital. The doctor almost wrote them off, however, because on the outside, Taylor looked perfectly normal. But when her daughter had a seizure in front of the doctor, he needed no more convincing. “That’s where the odyssey of the black hole of devastation began,” Carr said. For a time, medication helped but eventually, the seizures returned. An MRI revealed that Taylor’s brain had not formed correctly in utero. She was diagnosed with what is called “neuronal migration anomaly with poly-micro- gyria,” Carr explained. The doctors did not know exactly how this diagnosis would impair Taylor and told Carr they would have to wait and see if she either met her develop- mental milestones or didn’t. As a result of her disability, Taylor has impaired motor skills and a severe seizure disorder, and she is non- ambulatory and non-verbal. She swallows but cannot chew. She does not have high functioning of her hands and legs. And cognitively, her mother said, she is around the age of a toddler. Despite all that, “Taylor is very communicative,” Carr said. Using modified American Sign Language (ASL), pointing and vocalizations, she gets her point across. “She’s brilliant. She has about two dozen signs,” Carr said. GILROY • MORGAN HILL • SAN MARTIN june/july 2019 Carr remembers the bleak early days of grappling with Taylor’s diagnosis and the reality of her constant need for care. Carr’s mother-in-law provided essential care in the early years, so that both Carr and her husband could return to work. But the emotional turning point for Carr came a few weeks after she came home from the hospital. “I was lying in the Barcalounger with my hand over my eyes, when my dad came by and said, kindly, ‘Still feeling sorry for your- self, hon?’ Well that struck a chord.” Carr decided in that moment that their lives would not revolve around her daughter’s disabilities. “I said, she will have to fold into our lives. I worked hard for a career and college. I had things I wanted to do.”