‘We ourselves can be the change we seek’
Helping kids with autism drives a program to walk and collect garbage
RIVERVIEW, Fla. — As the mother of two children with special needs, María “Lalita” Tooley had to be creative to overcome the worries of the first months of the pandemic. The purpose was not to be left adrift, she said.
“Something else had to be done to get through the moment,” said Tooley, of Riverview.
A little over a year ago, the 52-year-old woman decided to go for a walk with her children and their therapists twice a week.
Tooley said that one motivation was to do an outdoor activity, taking advantage of the fact that the streets were almost empty.
The other: picking up plastic waste and trash along a nearly 1-mile open path between Balm Riverview Road and Quickwater Court.
“I think the pandemic taught us that we ourselves can be the change we seek,” Tooley said.
Collaborating with the community and helping to keep the neighborhood clean have strengthened Tooley’s initiative during these troubled months of the pandemic, she said.
Tooley has a 17-yearold son, Connor, who was diagnosed with a condition that is on the autism spectrum. But unlike some parents, who deny the situation or don’t do enough to understand their children’s condition, Tooley set about investigating and learning in detail how to help Connor.
Two years later her second son, Jack, was born with Down syndrome.
Tooley said she has had to deal with an educational system that is complicated for children with autism and Down syndrome.
She also had to find new strategies to improve her kids’ behavior.
“It wasn’t easy, but we’re here, step-by-step, with simple things like getting my kids to understand the importance of lifting a piece of paper on the street to keep the sewers clean,” Tooley said.
The Tooleys’ walks take place Tuesdays and Thursdays at 8:30 a.m., and the walks have become popular with close friends and parents of other children with behavior limitations and genetic disorders such as Down syndrome.
The group is now made up of more than 12 people, including children, therapists and parents. One of those parents is Ivellis Burgos, 48.
Burgos is a single mother of two children with autism, Noli, 16, and Jay,
14. She said she joined the group in the middle of last year.
Burgos said that the activity led by Tooley has been an opportunity for her children to do something out of the ordinary in their weekly routines and overcome the demands that the pandemic has imposed on each of their lives.
“We truly enjoy joining Tooley’s walks and picking up trash,” said Burgos, of Brandon.
“It allows my children to learn safety rules, listen to directions and practice social skills. For us, it’s great because we enjoy being out.”
Lorena Zevallos, a therapist who participates in the walks, said the activity is very useful for children to learn instructions, such as safely crossing streets.
She also said that with the support of other educational tools such as ABA therapy — an abbreviation for Applied Behavior Analysis — the kids’ behavior improves substantially.
“What we always try to do is teach them skills so that they can be as independent as possible,” added Zevallos.
The initiative of walking around Riverview and being part of the community has expanded to help other parents through counseling and support groups, Tooley said. But most importantly, she said, it is helping to raise awareness among parents about the fact that autism and other conditions are not necessarily “a barrier.”
“Parents with special children can include them without thinking about what people are saying,” said Tooley. “Take a look at our example: These kids are doing something special to help their community and their environment.”
Among Latinos, the issue takes a special significance, since many parents prefer to avoid the discussion about autism or Down syndrome.
Autism is a developmental disorder characterized by abnormalities in language, behavior and social relationships. On average, it is diagnosed in 1 in 54 children nationwide, according to the Centers for Disease Control and Prevention.
Down syndrome is a condition in which a person has an extra chromosome. The genetic disorder causes mild to serious physical and developmental problems. No one knows for sure why Down syndrome occurs, according to the CDC, but one factor that increases the risk is the mother’s age.
Eren Mendez, a mother of three, said Tooley’s efforts are amazing amid her own circumstances.
Mendez, of Plant City, is not a parent or a sibling of anyone with autism. But as a close friend of Tooley, she has seen her commitments
“I think Lalita’s love for her children is a great example to many,” said Mendez, 40. “Everything she does is great and possible.”