A mom lost her special needs son. But that was just the beginning.

Dereld Balesteri had a special way of communicating based on his love of movies. He would play segments on repeat to convey certain messages. There was a scene in Babe, when the namesake pig assures Maa, “It’s for the best.” (Balesteri might’ve used the same language as Maa when describing his seizure medication: “It’s horrible stuff.”) Balesteri expressed affection with touch – a photograph on the wall in his mother’s Salinas apartment shows him leaning in cheek-to-cheek with his grandma – and he was fond of playing the scene in Tombstone when Sam Elliott says, “I still got one good arm to hold you with.”

He had limited language skills, but his mom, Katrina Balesteri, learned to understand a range of messages. Dereld saved to-go cups from his favorite restaurants; if he wanted to eat somewhere, he’d bring a cup to the calendar. He loved puzzles, and if he wanted a puzzle partner while she was chatting with a friend in the living room, he’d make himself seen. “I called him ‘the little foreman,’” Katrina Balesteri says.

“Families are left high and dry.”

She began learning his unique language not long after he was born in 1993. By his first birthday, Katrina started asking questions about developmental milestones. Her son was slow to speak; she wondered if it was a hearing or attention issue. He began a pattern of repetitively tapping his hand on his forehead, something that he continued to do into adulthood. Medical professionals evaluated him and gave a diagnosis of autism. By age 3, Dereld was assigned to receive services through the California Department of Developmental Services, instead of entering into the public school system.

“I did everything I believed a mom should’ve done, seeing the delays in my child,” Balesteri says. “You trust the teachers, the therapists, the doctors – they went to school for this. I’m just the mom trying to learn my child.”

Over years, she grew less trusting. Dereld died abruptly on May 17, at home in his bed following a seizure. Katrina found him and called 911, but paramedics were unable to revive him. Dereld was 32.

Katrina is awaiting the results of an independent autopsy and also poring over medical records that go back to Dereld’s newborn screening, which suggested he should be tested for Hemoglobin H disease, a form of alpha thalassemia, a genetic blood disorder. It was only years later, however, that Katrina learned she is a carrier for alpha thalassemia, and that Dereld’s dad has a history of sickle cell anemia in his family. Hemoglobin H patients can suffer from iron overload, but Katrina remembers doctors suggesting she treat her baby for anemia, giving him formula with iron when she should’ve been avoiding it. She’s searching for an attorney and considering legal action over Dereld’s medical history.

But in the throes of grief – she lost her mom in January, then her son in May – Balesteri is also facing other ways in which her life has been upended. “When my son passed, I lost not just my son but my job,” she says.

When Dereld was young, she worked other jobs, most recently a graveyard shift in a Monterey hotel; her late father would help take care of his grandson during the day. In 2011, she became a full-time aide to Dereld through In-Home Supportive Services, a government program to compensate caregivers.

Her IHSS job ended the day Dereld died, raising even more complications. She lost her IHSS health insurance. Without her son, she lost Section 8 eligibility; the monthly rent she pays for her North Salinas apartment went from $226 to $2,000.

“What happens in special needs families when a child dies first?” says Maiaika Velazquez, a friend who calls herself Dereld’s auntie. “Families are left high and dry.”

For now, Balesteri is dipping into her retirement savings to pay the bills, including Dereld’s burial and autopsy. (A GoFundMe has raised about $5,000.) She’s looking for a job.

She lost her income, her housing assistance, her health insurance and of course her son, but Balesteri says she lost something more after spending decades as a caregiver – her sense of self. “I couldn’t even tell you who Katrina is or where to search for her,” she says.

She does know who Dereld was: A happy young man who loved movies, puzzles and bowling. He also loved special outfits and was buried in his Woody hat and T-shirt from Toy Story.

SARA RUBIN is the Weekly’s editor. Reach her at sara@montereycountynow.com