Yoga time, craft time, outside time, alone time.
For the past two weeks, Laura Brubaker has divided the days into neat, predictable sections to help her two autistic children maintain a sense of routine while they’re home from school.
Families across California have been looking for creative ways to educate at home while schools and day cares are shuttered. But for parents of children with intellectual disabilities, it’s a steeper challenge with higher stakes.
Autism experts say the first five years of life are a crucial window for teaching verbal and social skills. Brubaker, like many parents, is worried her child will fall behind.
“I’m really scared because my younger one is in such an important developmental place right now,” said Brubaker.
The Woodland mother says her 3-year-old and 6-year-old are both verbal, but her youngest has been talking less and less since he stopped going to school.
“He starts growling and screaming when he’s not getting a response he wants, instead of using words,” she said. “I’m pretty nervous about how things are gonna go … because as much as I love them and I want to have all the answers, I don’t have the training to give them the support that they need.”
A growing body of research shows that early interventions for autistic children, such as behavioral therapy and positive communication enforcement lead to better outcomes for children with autism later in life.
“Human brains seem very built, very programmed, to be very attuned to language and very able to process language input during that time period,” said Sally Rogers, an autism expert at the UC Davis MIND Institute who studies early development.
In school, children with intellectual disabilities typically have access to onsite therapists and classroom aides.
Brubaker’s youngest son goes to preschool through the Woodland Joint Unified School District and is part of a peer learning program. She says her older child went through it a few years ago and learned the ropes from his classmates.
“Neurotypical students who act as examples of ‘this is how you sit in a chair and raise your hand when you have a question and this is how you sing and this is how you interact with kids your own age and this is how you play with this car,’” she said.
She isn’t sure she can replicate that at home.
“The biggest piece for him was socializing with kids his age away from his parents, and that’s just literally not possible.”
But Rogers, of UC Davis, says parents do have tools at their disposal. She teaches famillies how to talk and play with autistic infants and toddlers in a way that engages their brains and helps them associate words with objects.
For example, rather than make breakfast while a toddler plays on the floor, Rogers recommends parents name every item they take out of the fridge while showing it to their child in a way that grabs their attention.
“If a parent is engaging their child throughout the day at home, in language-rich activities, they can rest assured that they’re providing the best kind of language learning model that exists,” she said. “No one is better at teaching language to a young child than the parents and the caregivers.”
The MIND Institute recently launched a series of free videos to show parents how to work with autistic children at home.
But many parents are still looking to their school districts for support.
Federal law requires public schools to provide “free and appropriate education” to students of all ability levels, andthe state has clarifiedthat remote teaching can be used for students with special needs.
About 795,000 California students receive special education, or about 12.5% of the state’s student enrollment, according to an analysis from CalMatters. Roughly 15% of special education students have autism.
The Yolo County Office of Education, which Brubaker’s sons’ schools are part of, posted a letter stating that special education will occur through distance learning after spring break, which begins April 13. Until then, teachers and therapists will provide services through phone, video and email. The office says it’s considering ways to virtually hold meetings about students’ individualized education programs ie IEP’s, which determine what services the student is entitled to.
Jacob Whitaker, vice president of the Woodland Joint Unified School District board, said teachers and administrators have been working hard to get distance learning off the ground, and that they are keeping the needs of disabled students in mind.
“To me, it’s not humane if all our district was saying was parents can call us or otherwise they’re on their own,” he said. “That’s unacceptable to me.”
Sacramento County schools are currently distributing laptops and WiFi hotspots to students who lack Internet access, to ensure all students can access online classes when they begin.
Dr. Clarissa Kripke, a family practice physician at UC San Francisco who primarily treats patients with developmental disabilities, said schools should be touching base with parents of special education students about how to provide education at home.
“If we don’t expose them to that information, they will be put at a disadvantage and won’t have an opportunity to learn,” she said. “Even if parents don’t have the resources or have other responsibilities, we can certainly be playing these high-quality educational videos on our phones and reaching out to parents and therapists and other people who can provide some remote learning.”
Brubaker isn’t sure if remote education will work for her sons, but she’s open to trying. Her children, like many disabled students across the state, are also going without their behavioral therapy from a visiting professional. Many families receive these visits from the state’s Department of Developmental Services, but are choosing to cancel them to reduce the chances of a stranger bringing COVID-19 into their homes.
Kripke said the choice to keep a visiting therapist or not is up to each individual family, and for some, the benefit of having the services might outweigh the risks.
“It might be pushing people into serious mental health crisis to not have help in their homes,” she said. “To the point where caregivers are overwhelmed and are responding in dangerous ways, like through violence.”
Brubaker is immune-compromised, so she’s not planning to invite any therapists back to her home for a while.
In the meantime, she’s trying to keep her two sons distracted with morning yoga, PBS programs and sign language lessons.
She’s been thinking a lot about her grandmother, who grew up during the Great Depression.
“The only thing she really remembered as being a hardship was that she wanted a new pair of shoes, and they couldn’t afford to get her a new pair of shoes,” she said.
Brubaker hopes the COVID-19 pandemic will not stick in her children’s memories long-term.
“So now I’m focusing every day on trying to make things fun and not seem scary, even though us as adults are pretty terrified.”
Resources for families of special needs children
Parents can contact their local regional center. These are nonprofit organizations contracted with the state of California to provide services to people with developmental disabilities.
Help Is In Your Handsis a new online learning tool from UC Davis for parents of autistic children
Khan Academy Kidsis an interactive learning app that helps children build language skills
The Early Start Denver Model, developed by Sally Rogers, teaches parent-child communication
The Autism Society offers multiple online classes for families
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