Lockdown Is Forcing Special Needs Parents to Get Creative
With professional help, parents of kids with autism and developmental delays are embracing DIY therapies
For Darlene Rodrigo, finding the right care for her daughter, Bella, has been a challenge. The sixth grader is nonverbal and has Down syndrome and autism. Despite these obstacles, her family’s hard work has helped Bella to bond with not only her teachers, but also the team who work to provide her with the therapies and assisted technologies that help her communicate.
But isolating during a global pandemic has changed that, and now, the Ontario, California, family is figuring out alternatives.
“I think this quarantine and this whole — I guess you could say — unforced lockdown has left us all to figure things out,” Rodrigo says.
While scrolling on Instagram last week, I saw Bella at a table with her dad, carefully working to pick up cotton rounds with tongs and place them into a bowl.
“The video that you saw was our very first attempt at occupational therapy over film with her OT therapist,” Darlene Rodrigo tells me. “We’re all doing what we can to make things work.”
I was drawn in by the video because, like the Rodrigos, no school for my son means more than just a loss in the educational instruction that schools provide — it means no occupational therapy, no physical therapy, no speech. He has autism and severe cognitive delay, and had just learned how to say his first word in sign language: “Please.” With his traditional therapies on pause, parents like me are seeking innovative ways to fill in the gaps in care.
Schools throughout the U.S. started to close mid-March, and currently, 37 states have either ordered or recommended that schools remain closed this year, according to Education Week. Where we live in Chicago, the close leaves the city’s some 52,000 students who have Individualized Education Plans (called IEPs) or IFSPs (Individualized Family Service Plans for children under 3) and receive some type of service seeking alternate means of care. And in a school district that’s 83% Black or Hispanic, the city’s students of color are severely impacted — a trend that undoubtedly looks similar across the country.
Some school districts, like Bella’s in California, have started to transfer services over to virtual therapy while many are still in the early stages of figuring out how to service students. Private therapy is an option for some. Yet, once you add insurance limitations, state Medicaid coverage laws, and other costs into the fold, it can feel, well, like a rather heavy lift.
But Paula Acuña, a bilingual speech language pathologist at TherapyWorks in the Chicago area, recommends parents call their insurance companies and providers — again.
“A lot of insurance companies have agreed to provide expanded coverage to cover teletherapy sessions in this emergency, in this time of crisis,” she says.
In addition to seeing private clients, Acuña also works for a public school district. She says parents of children who have therapies specified in their IFSPs (or Individualized Family Service Plan for children under 3) should be in contact with their schools about what options are available.
“There should be a continuity of care,” she says. “And if for whatever reason, the school hasn’t been in contact, that’s a problem.”
For bilingual children with parents who may not speak English as a first language, there may be an additional barrier to transitioning therapy activities to the home. Acuña advises parents to avoid any pressure to work with their children in English if they usually speak another language such as Spanish at home.
“I am an advocate of continuing to use and model that dominant language that they use at home,” she says, “because that’s the language that the parents can provide the highest quality input.”
Acuña offers additional advice: Include more activities that are interactive and require some engagement versus just watching. If your child enjoys YouTube, for example, she says you can ask a speech, OT, ABA, or physical therapist about how it can be used to hit therapy goals. It’s okay to use entertainment when it’s “in a way that the child can really learn from it,” she says.
Last year, Breanna Major’s six-year-old daughter, Layla, was diagnosed with autism. But her insurance only allowed her 20 sessions of occupational, physical, and speech therapies. So, she took matters into her own hands.
“Knowing that she wasn’t going to get what she needed therapy-wise because of my insurance, I went ahead and started to invest in doing her room,” she says.
In her part playroom, part sensory room in their Aurora, Colorado, home, Layla has a swing, an exercise ball she can bounce on, a tunnel to crawl through, a balance beam to walk on, and a host of other items. Now, she’s officially in long-term therapies — with no limit to the number of sessions — that have switched from in-person to virtual due to the pandemic, and her room is helping with those activities.
“Creating an indoor obstacle course is great for working on different motor skills with children.”
An obstacle course to help with sensory and motor skills might be easier to create than you think. Amy Spawn is CEO of The Warren Center, a nonprofit that helps children with developmental delays and disabilities in the Dallas, Texas, area. She says you can use what you have to create an indoor course that consists of household items and focuses on jumping, crawling, and directions. She says getting kids to do things backwards, for example, or walk on different surfaces like pillows can be fun for kids and they might not even realize that they’re doing work.
“Creating an indoor obstacle course is great for working on different motor skills with children,” she says. “And so those are easy for parents. You pair it with an activity like doing puzzles or seeing who can do something the fastest or who can do it the slowest, just making it fun.”
But all therapeutic activities don’t have to be elaborate, Spawn says. Incorporating just five- to 10-minute activities into your child’s natural routines can be helpful. And if that amount is all you can do right now, don’t be hard on yourself.
“Whatever parents do, they’re helping their child,” she says. “They don’t have to go to therapy to get therapy.”