Author, director, writer, acting coach, and educator Noelle Gentile draws on all her strengths as an advocate and educator supporting her daughters Lucia and Isla, who is autistic and has epilepsy.
A Family’s Journey
Noelle Gentile (age 42) has two remarkable daughters–Isla (age eight) and Lucia a.k.a. “Lulu” (age six). Born and raised in Albany, NY, Noelle spent 13 years in Brooklyn before returning home to Albany with her family after Isla’s birth.
Noelle’s daughter Isla was diagnosed with epilepsy in February 2016 and on the autism spectrum in June 2018. (An estimated 30% of people diagnosed with autism have epilepsy, too.) Isla also has global delays. She struggles with side effects from the epilepsy medications. Yet, Isla “deeply connects with other people,” Noelle said. “She has incredible instincts about who other people are.”
It was a long journey. There were several diagnoses, starting with when Isla was 16 months old. An MRI showed non-specific brain damage. Noelle was devastated. “I didn’t understand it,” she said. “I didn’t know what it meant. Both the epilepsy and the autism diagnoses we had to fight for. We were relieved because we had a better picture of what was happening and how to support her.”
Noelle reiterated that a lot of the heartache of having a child with diverse abilities stems from the world falling short of embracing the child with adequate compassion and understanding.
Noelle’s husband has a lot of trauma surrounding Isla’s seizures, and related anxiety. Noelle remarked that it is different for her. She has done a great deal of processing Isla’s journey through her writing and art. Noelle said of herself and her husband, “We understand where each other are, but we’re not fully in the same place.”
Finding Schools and Resources
Noelle described how her family has navigated school, medical, and other systems for Isla’s well being. Noelle said, “I have had to sharpen my tools.” Naturally a people pleaser, she is now less so. “Isla has challenged me to let that part of me go,” Noelle said.
She wishes there had been more resources available at the beginning of her journey through different abilities with Isla. That said, she remembers Isla’s time at The Spotted Zebra Learning Center–an inclusive preschool center in Albany–with gratitude. Noelle is committed to building Isla’s opportunities to flourish, through positive change in the world. “There’s a collective of us that wants to see this change,” Noelle said. Indeed, her dear friend Alyssa said, “Isla doesn’t need to change for the world; the world needs to change for Isla.” Through Make-a-Wish Northeast New York (with help from Make-a-Wish Southern Florida), Isla had her wish to swim with dolphins in Florida beautifully granted. (Make-a-Wish grants the wishes of children with critical illnesses.)
The Story of Two Sisters
In her role as author, Noelle Gentile wrote the children’s book Isla and Lulu from the perspective of Lulu–Isla’s then-four year old sister. Love between sisters personalizes this book’s themes of inclusivity and open dialogue amongst people seeking to embrace those with diverse abilities. Noelle decided to write the book after finding out that Isla was at risk for SUDEP (sudden unexpected death in epilepsy). Noelle observed that some people were distancing themselves from her family. The book means “to bring people towards us instead of further away.”
Asked about challenges she has overcome as a parent, Noelle remembered a family vacation on Cape Cod. Her two daughters were playing on the beach when two little girls approached Isla. Noelle felt anxious. Often children who approached often left when they realized Isla was different. But the two little girls stayed on and played with Isla. It turned out that they had a classmate with diverse abilities. Perhaps the world is, little by little, changing for the better.
Living Out Loud
As an advocate, Noelle tries not to center on herself as “Isla’s Mom” in the experience. The book Isla and Lulu and the people it can touch play a large part in her advocacy. She is also “gearing up to do speaking” about Isla’s medical experiences.
I asked Noelle what inspires her advocacy work. She spoke of a miscarriage eight years ago, and how she was not encouraged to speak about the experience. “Where’s our story?” she found herself asking. Noelle emphasized how important it is to see yourself reflected in literature, film, TV. It’s important for the world to respect Isla’s journey. “I want my family to be able to live out loud,” Noelle said.
Written by: Effy Redman
Effy Redman is a memoirist, educator, and disability advocate living in Ballston Spa, NY. She has published work in the New York Times, Vice, Ravishly, and Chronogram, among other places. She holds an MFA in Creative Writing from CUNY Hunter College. Follow Effy on Twitter: @effyredman.