As the mother of three young children on the autism spectrum, Laurie Kubasek strives to be masterful juggler.
She constantly strategizes ways to divide her time between an 8-year-old daughter who enjoys designing costumes, a 7-year-old son who loves dancing to Michael Jackson music and a 5-year-old daughter who adores her iPad and stuffed animals.
But Kubasek admits it’s nearly impossible to strike a balance with her children, especially with their latest challenge:
Distance learning.
The Orange resident wonders how she can help her children while they’re all expected to be learning on their computers at the same time.
She worries that as she devotes attention to Faye, her kindergartner with severe autism, her third-grader Amelia and second-grader Walter will be lost.
She takes a big sigh, “I have no clue how any of this is going to work out.”
Kubasek isn’t alone. The unfolding new school year in Orange County, filled with higher expectations for distance learning, has heightened concerns for parents with autistic children about a learning model they believe – though necessary for curbing a pandemic – doesn’t work well for their students.
They are desperate for assistance and solutions for their students.
A regression of skills gained, aggression, trouble sleeping, hurting themselves, wandering off, obsessive compulsive disorder, these are all issues experts say are facing autistic students.
“I’m watching all of this and I’m scared to death for our families,” said Lisa Ackerman, executive director and founder of Irvine-based The Autism Community in Action, commonly known as TACA. “In the 20 years doing this, it’s probably the most stressful time I’ve seen (for) parents.”
A CHALLENGING ROAD
Autism, a group of developmental disorders that can create social, communication and behavioral difficulties, affects one in 54 children in the United States, according to the Centers for Disease Control and Prevention.
The combination and severity of symptoms varies among children and can include complicated immune systems issues. But when it comes to evaluating children on the autism spectrum in the distance learning model, patterns have evolved.
Advocates and parents report students with autism or other special needs are disengaging from lessons, regressing in their behaviors, becoming more aggressive and struggling without assistance to learn online.
“They struggled (in the spring) for sure,” said Barbara Barboza, an elementary school teacher in the Placentia-Yorba Linda Unified School District who also has a 20-year-old son on the autism spectrum and attending Fullerton College.
“I would meet with them individually if I could,” she said. “We had our resource teacher and our resource aids meet in small groups with them, but again, it was the timing (of being online) and it was if their parents were home to guide them or an older brother or sister was there to guide them.”
Kubasek, whose husband, Michael, is a teacher at Anaheim Discovery Christian, said she tries to have her children together while doing their online classes, but her attention ends up focused on Faye for much of the day.
“I can’t teach or help to teach my children anything if I’m constantly putting out fires or stopping behaviors,” she said about the struggle of dividing her attention – and she is able to be a stay-at-home mom. “There were a couple of weeks (in the spring) we didn’t do anything. We didn’t do anything, because there was just no way.”
All students can be distracted by distance learning at home. For children on the autism spectrum, the tasks get even more arduous.
Jessica Postil, co-owner and executive director of Autism Spectrum Consultants, said agencies such as hers have helped students be more successful with distance learning through in-person support. She recommends parents discuss support options for academics with their district as well as the Regional Center of Orange County or even their private insurance.
“With in-person assistance, we have a higher ability to manage behavior and keep the client online and working on their educational goals because we are addressing their behavior,” said Postil, whose company serves Orange County, the Inland Empire and San Diego.
“Some of our kids don’t like looking at faces or eyes (on the computer screen) and it causes them anxiety,” she said. “Other kids with autism have high distractibility. If they are given a device, they are minimizing that classroom screen if they’re not managed and they are on a game immediately.”
Postil said the students served by her agency find success with more supervision, taking “mini breaks” and addressing “fears and anxiety” that occur outside the view of the teacher.
The individualized learning plans created by school districts for students with autism and other special needs often include services such as speech or occupational therapy, but those can also be hard to deliver virtually.
“When you do prompt therapy with a kid that has autism and apraxia (a difficulty making some movements), it requires touching them,” Ackerman said. “You touch their face. You touch their shoulder. You interact with them. You can’t do that same therapy when it’s distance learning.”
Jessica DuLong said her 7-year-old son, Griffin, who has autism, initially transitioned well to distance learning, embracing the change as an adventure.
The second-grader in north Orange County enjoys socializing in-person with peers, which isn’t always common with children on the autism spectrum.
“This whole thing where he was at home and he’s only seeing his friends on the screen, it started to affect him in a really negative way,” said DuLong, who also has a 19-year-old son.
“He didn’t want to go (online),” she said. “He would cover his eyes and he would cover his ears. It would be a really big fight and a few times, he started self-harming.
“At that point, I told the teacher, ‘Listen, we’re trying as hard as we can, but that’s my firm line.’ When my kid starts self-harming over something, I’m not going to force him to do this.”
Other reports of regression follow children with autism like storm clouds.
Ackerman said students with autism have in the past six months experienced a loss of hard-fought skills of one to three years.
“When you have especially OCD or aggression, we’re seeing a lot of kids lose skills they acquired,” she said. “I’m really, really concerned. These kids were already behind as it is.”
PLANS, DREAMS FOR HELP
Orange Unified School District’s individualized education plans, commonly known as IEPs, feature aids to support students on the autism spectrum in small, online groups, said Sue Singh, the district’s chief executive officer for special education. The aids also can assist families with accessing information and troubleshooting computer issues.
The district has also been training its staff, distributing iPads, developed a resource website for families and is contracting with outside agencies to help the families in its special education programs, Singh said. The resource website has videos in English and Spanish and covers topics from academics and technology to social-emotional issues.
“Our goal is get to every child,” Singh said.
Newport-Mesa Unified School District features designated staff for its autistic students and emphasizes small groups when needed.
It also has earmarked funds from the federal CARES Act (Coronavirus Aid, Relief and Economic Security) to purchase 300 larger-sized Chromebooks with children on the autism spectrum in mind, said Candy Barela, administrative director for the district.
Ackerman said she hopes schools can soon begin at least hosting in-person speech, occupational and behavior services for the students in small group settings.
“And let parents opt in or opt out,” she said. “If we could turn on services for a really needy community where the wheels are about to come off the bus, that would be my dream.”
Barela said the Newport-Mesa school board endorses bringing its special needs students back on campus full-time as soon as the district is allowed to start at least a hybrid of on-campus and distance learning.
This week, 24 private schools and the Los Alamitos Unified School District received waivers to bring elementary-age students back to school ahead of any easing of the state’s restriction on in-person learning. The schools filed detailed plans with the county and state for how they can teach children safely during the pandemic.
But in a letter to parents, the Los Alamitos superintendent said though the district included its special education classes in its request, they were told the classes are not eligible for the waiver and separate guidance for those classes is expected to be released soon by state officials.
Postil said Autism Spectrum Consultants continues to work inside family homes under careful health and safety protocols. The procedures are similar to the ones used by home health nurses with extra training, protective gear and daily temperature checks, she said, and the state-certified company also trains parents, provides visual schedules and hosts social skills groups or “hang outs” for students on Zoom.
“We had some school districts reach out to us,” Postil said, “because they realize that without additional support, the child is not going to be on the computer and not accessing their education.”
More support from the state appears on the way. Gov. Gavin Newsom announced last week an additional $5.3 billion in funding for schools, including special education.
But time, parents believe, is of the essence. Their children need help now.
“It feels like I’m torturing him,” DuLong, who receives support from TACA, said of Griffin. “It’s so surreal for me to see how much has changed for him, and not for the better. And I wonder how long it’s going to take to get that back for him.
“He already worked so hard. And he already tries so hard,” she said. “This is not going to be an easy adjustment when things hopefully open up in the future.”
