Disabled Kids During COVID: Jess’s Story

From the newsletter.

I usually send out on a newsletter on Fridays, but yesterday was a crappy day, and it just didn’t happen. Instead of holding out until next Friday, I think I do one today. Stuck inside because of rain and the pandemic, I want to test the wheels on a new newsletter system (Hello, Substack!) 

For the past few weeks, I’ve been interviewing teachers, therapists, advocates and parents for a couple of articles about how kids with disabilities are faring these days. That’s on top of the informal conversations that I have every day with my gang of special-education-parent friends. 

Honestly, it’s been rough. I have never worked on any article, where so many people end up crying. It’s hard to shake off all the sadness and go about my life, when I step away from the computer. The good news is that I have enough information to piece together the puzzle pieces for at least one article next week, and I can take a break from hearing hard stories. 

I think I’ll share one story with you. Nice of me, right? You probably just want to do some Christmas shopping, and I’m going to bum you out. Ha. I’m fun like that. 

I first met Jess this summer, when I started going to a physical therapy center in my town for a boring, middle-aged woman injury. While she’s pulling and pushing my shoulder until the muscle knot eases, she tells me about her other job — working as a physical therapist for the state department of Early Intervention.

Every year, Early Intervention dispatches hundreds of therapists into the homes of children, some as young as six months old, with autism, genetic mutations, cerebral palsy, and other rare challenges. For a sliding fee, this state-run department provides essential services for children with disabilities, until they turn age three when the school districts take over. 

As a physical therapist, Jess’s job is to help these children crawl, walk, and gain control of wayward limbs. It’s a really hands-on job that has taken years of schooling and experience to perfect. This spring, she was only able to provide these services through Zoom and FaceTime calls, due to COVID restrictions, which pushed the limits of her creativity and families’ resourcefulness. 

Rather than directly demonstrating motions and exercises, and guiding parents about how much pressure to place on a child’s body, Jess had to give verbal instructions, which was especially challenging for families who were not fluent in English. Often, two parents were needed to be available during the day; one had to hold the cell phone to show Jess how the child was walking across the floor and another parent had to physically support the child. Parents had to have the right technology; if they only had a desktop computer, it was difficult to show her how a child was walking across the room.  

Jess said, “I truly want to help the children and be there for them. And I feel like I’m not quite able to do that as successfully remotely.” 

Finding ways to demonstrate exercises pushed Jess’s creativity to its limits. During one session when she was teaching a child how to walk upstairs, she had to take her laptop outside her apartment building to find a set of stairs and position her computer far enough away, so the child and the parent could watch her walk up and down stairs. Even with all that thought and effort, she struggled. 

With the rising COVID infection rates, Jess fears the state might shut down in-person therapy again leaving thousands of young children without adequate care. 

Telehealth was so difficult that one of Jess’s clients dropped out after six sessions. Another client lost seven months of strengthening, and as a result, was having trouble standing, because his hip muscles were too tight. Now that she’s back to working in homes, with some basic COVID precautions, things are nearly back to normal, but if services shut down again because of surging COVID rates, therapists like Jess will go back to teaching kids to walk through the Internet. Jess said that if that happens, many of her clients will drop out of the program completely. 

Jess said that the physical exercises that she does with the little kids helps set the stage for them to sit properly at a desk in the future and hold a pencil. “And when you miss that timeframe, you can’t go backwards. You don’t get that neuroplasticity back,” Jess said. 

The tragedy that Jess was permitted by the state to stretch out the muscles of a middle aged woman with a boring middle-aged ailment, but is not able to help a two-year old with muscular dystrophy in his home, is not lost on either of us.