Raising a child with autism spectrum disorder (ASD) can upend a family’s world — that transformation can go unrecognized by those outside of it. Just as each child with autism presents unique characteristics, their parents face a wide spectrum of emotions and experiences every day, says these Long Island mothers.
Greer McGuiness’s 11-year-old son, Keegan, was diagnosed with autism when he was 2 1/2. She describes the emotional toll many parents face when therapy replaces time spent simply being together.
“Time that should have been spent making memories with my child was instead filled with therapy sessions where someone else got to witness his milestones,” she said. “Someone else was there for his ‘firsts’ while I sat on the sidelines, missing moments I can never get back.”
Daily routines come with challenges many don’t see, McGuiness explained.
“When a child has a meltdown in the middle of a store due to sensory overload, we see the stares, we feel the judgment, as if our parenting is on trial,” she said. “Simple tasks like traveling, attending events or even running to the grocery store became overwhelming battles because my son couldn’t always communicate what was wrong.” She adds, “We weren’t avoiding life — we were just trying to survive it.”
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Parents and their children with ASD deserve empathy and open-mindedness, said Jennifer Ismael, whose 23-year-old son, Giovanni, was diagnosed with autism when he was a toddler. “Let’s give them some grace and not be so quick to judge,” she says.
Ismael encourages parents to not get caught up in comparisons or labels — and to hold onto hope. “The future is not written when they are five,” she said. Her son, now a young adult, has “a sense of purpose,” working two days a week and taking pride in sharing his accomplishments.
“With our kids, things take more time and more work, but it doesn’t mean that it won’t happen,” she said.
Regardless of their diagnosis, the parent-child bond is immeasurable.
Tina Cardali’s daughter, Angelina, was diagnosed with autism at 18 months. Now 18, she is still nonverbal, developmentally still a child and requires 24-hour support. “Life can be very isolating at times,” Cardali said. Unlike many parents, she and her husband can’t simply hire a babysitter for a night out.
Despite the challenges, Cardali describes a deep connection with her daughter. “I almost feel that Angelina and I share the same heart,” she said. “I feel her emotions even though she can’t speak them.”
Cardali wants others to understand that sorrow isn’t the whole story. From quiet snuggles to long car rides with music, the family cherishes small, joyous moments and tries to let go of everyday stresses. “Angelina has taught us how beautiful the simple things can be.”
