About a year after her autistic daughter Erin drowned and died, Cara Bean watched her two sons do what Erin never could: get into a body of water, fully clothed, and survive.

At ages 6 and 3, Kevin and Lindon had taken almost 13 weeks of survival-focused swim lessons known as infant swimming resource, or ISR, first learning to stay afloat in swimwear and then practicing with the added weight of clothes like jeans and coats. It had been a harrowing experience for the entire family: Kevin was old enough when his baby sister died to be traumatized by water. But this lesson struck deeper than the rest.

“That was even more emotional: watching my boys get in the water, fully dressed,” said Bean, 46. “As my daughter passed, she was in a T-shirt. She had a diaper on because she wasn’t potty trained. And she had pants and shoes and socks.”

In September 2021, the bubbly 3-year-old Erin went through partially cleared woods behind her home in St. Mary’s County and into a river, where she drowned.

“Watching them do what my daughter did not get a chance to do was just eye-opening,” Bean said. “I cannot express to you enough how much I think all children really need this in their life.”

Bean started the nonprofit Erin’s Star in her daughter’s memory in 2022 to get more ISR instructors trained in Southern Maryland. The group also helps families in the area buy GPS tracking devices for autistic children, who can be prone to wandering off. Bean thinks both interventions could have saved Erin’s life.

Drowning is the leading cause of death for people with autism spectrum disorder, a neurological and developmental disorder that affects how people communicate, learn and interact with others. A Columbia University study in 2017 found that autistic children are 160 times more likely to die from drowning compared to other kids.

Already this summer, two autistic children in Maryland have died by drowning. Marcel Traore was found in the water in Dundalk in June. Fawzan Hassan was found in a Montgomery County pond last month. Both boys were 6 and were reported missing by their families.

Wandering, or leaving a safe environment or a responsible caregiver, can be how autistic people communicate they’re in a stressful situation or they’ve found something that interests them, said Beth Benevides, director of outreach for the Hussman Institute for Autism in Ellicott City.

Bean said she’s lobbying pediatricians to start warning families about the dangers of wandering as soon as a child is referred for a possible autism diagnosis.

The muddy princess

Erin was on her way to getting a formal autism diagnosis when she died, Bean said. The toddler would communicate by singing nursery rhymes — “no more monkeys jumping on the bed” meant no — and would often recite her favorite movie, “Frozen,” word for word.

Erin would pull adults and point to indicate what she wanted, didn’t respond to loud noises like a smoke detector, and loved playing in — and eating — mud. An appetite for nonfood items is linked to autism.

“She would get covered in mud from head to toe. Whenever the rain came down, we just said, ‘This is Erin’s day,’” Bean said. “We would go outside, play in the rain, find the puddles, let her get caked up or caked in mud, and I would hose her off before she came in.”

Erin’s nickname, “the muddy princess,” is on her tombstone.

On a Saturday morning in 2021, Bean was getting her three kids ready for Kevin’s T-ball practice. While buckling Lindon into his car seat, Bean realized he needed a diaper change.

“When it’s your third kid, you change it really fast,” Bean said. “But it wasn’t fast enough.”

Once she realized Erin was missing, Bean went to the closest body of water she could see, a creek across the street. She jumped in the water screaming, frantically searching for her daughter.

But Erin had instead gone behind the house. She was found about an hour and a half after 911 was called, and pronounced dead at the hospital.

Looking at her daughter’s body atop a table in the hospital, Bean whispered one of her favorite nursery rhymes in her ear: “The ants go marching one by one. Hurrah, hurrah.”

Preventing future tragedies

To protect children from drowning, advocates suggest physical barriers and alarms at pools, swimming lessons and constant supervision as top priorities. GPS tracking devices, like the kind Erin’s Star provides, are considered a last resort. They can be placed in clothing pockets or strapped around a child’s waist in a belt. The nonprofit, which Bean said is funded by private donations, pays the upfront cost of the device — $229 plus a $19 installation fee — and $540 for the first year of service. After the first year, families can reapply for funding or take over the cost of the service plan.

Bean said her organization also advocates for all children to know how to self-rescue. ISR, which is the method Erin’s Star promotes, mostly teaches children from 6 months to 6 years old, starting with how to float and get air and advancing to actually getting themselves out of the pool once they turn 2, said Abigail Billingsley, a certified ISR instructor in Baltimore. Kids do 10-minute lessons Monday through Friday for between 6 and 8 weeks.

“Having them in the water for a short time helps them just retain what they’re learning, just as they would if they were learning to crawl or walk or any of those developmental goals,” Billingsley said.

Sometimes, the skills take a little longer to perfect. Bean’s sons did the program for about 13 weeks. Susanne Malebranche, one of two ISR instructors offering lessons near Bean and who works with Erin’s Star, said she had to take it much slower with Bean’s older son, Kevin. When Kevin first started lessons, Malebranche had to get out of the pool and talk to him at his car just to get to him to walk near the water.

Malebranche charges $840 for 35 lessons. While Bean wants to eventually give out scholarships to families who can’t afford the self-rescue lessons, she’s currently focused on getting more ISR instructors to Southern Maryland by giving scholarships to aspiring teachers.

The ISR organization said certified instructors undergo a minimum of six weeks of hands-on training and annual recertification. Malebranche said the cost to become an instructor exceeds $10,000.

Erin’s Star has given out one $5,000 scholarship so far. Recipients are required to get additional training in working with autistic children. Malebranche said the lesson approach with autistic children is mostly the same but may be taken a bit slower and there are some extra environmental considerations, such as whether a child needs to have the first or last lesson slot of the day to reduce noise or whether they have an aversion to an instructor touching their heads or ears.

Preventing even near-drownings is important because children can sustain long-term neurological defects from lack of oxygen when they’re submerged, said Dr. Adrian Holloway, a pediatric critical care physician at the University of Maryland Children’s Hospital.

Drownings and near-drownings tend to trend upward in the warm summer months, Holloway said, though he noted he’s seen a decline in the number of children admitted for submersion injuries over the 10 years he’s been at the hospital. Between 2010 and 2019, at least 67 children in Maryland died by drowning, and the numbers are trending down.

There can be long-term effects on the family, especially in the form of survivor’s or bystander’s guilt.

“You live with the guilt of it was all my fault. It was on my time,” Bean said. “I will go to my grave saying I did not neglect her. I did what any mother would have done: changed a poopy diaper and I left her for a few minutes.”

Bean honors her daughter’s tendency to speak in nursery rhymes in her email signature, which ends “Twinkle, Twinkle Little Star. Do you know how loved you are?”

Her daughter certainly did. Bean signs all of her emails as president of Erin’s Star, but more importantly, as Erin’s mommy.