Caregiving During COVID

Bryson would be full of joy each morning when the school bus stopped in front of our house. He would wave his arms and smile and giggle as the ramp lifted his chair onto the bus. He would explode with happiness when he got to get out of his chair at school to play with his friends on the mat.

School was one of his favorite parts of life.

But the school bus doesn’t come anymore.

Like millions of other kids around the world, Bryson is stuck at home during COVID-19.

And while that’s hard for all kids and their parents, it poses particular challenges for kids like Bryson, with multiple complex disabilities and special needs. 

For Bryson, school isn’t just about learning. It’s also where he gets his physio therapy and speech therapy. It’s where he’s able to use an adaptive bike, and zip around the gymnasium in his walker. It’s where he’s able to connect with other kids just like him.

And it’s where he’s the happiest. Bryson often seems annoyed on weekends when he’s stuck with us, instead of being able to hang out with his friends. He also has violent seizure-like episodes that seem to spike on days at home. 

Overall, Bryson is managing these stay-at-home days much better than we expected, but he’s still had some very rough days. When he had days like this in the past, we would often take him to the mall and push his chair for hours. It was the only thing that would calm him down. But of course, we can’t do that now.

Don’t get me wrong. I’m definitely a supporter of the stay-at-home requirements. Our family needs them more than most. Bryson’s rare disease – GRIN Disorder – is rarely fatal. But when kids have died, it’s often due to respiratory complications. Many GRIN kids have hypotonia, which makes it more difficult to clear their lungs. I also need to be careful because I’ve had a kidney transplant and take meds to lower my immunity, so my body won’t attack the new kidney. As a result, we’ve been extra careful. We’re not getting takeout, or going into stores, or seeing anybody. 

The provincial government provides seven hours a week of personal support worker services for Bryson, so we used to have someone come each morning to help get Bryson ready for school. But we don’t want to take any risks, so we asked for that service to be put on hold. Bryson also has a private caregiver who helps him from the time he gets home from school each weekday. But she got a cough just as schools were shutting down, so asked her to quarantine for two and a half weeks so we could make sure it wasn’t COVID-19. Now she stays in isolation at her apartment and we drive two hours each day to pick her up and drive her home so she doesn’t have to take taxis or the bus.

The pandemic is also delaying our efforts to find therapies and cures for kids living with GRIN Disorder. Scientific research that isn’t focused on COVID-19 has pretty much ground to a halt. And it’s harder for me to find time to push forward in my role of head of science for CureGRIN Foundation.

After 10 years at the same school, Bryson about to graduate from grade 8. There’s this thing they do at the school where all the graduating class goes on a special field trip to see a Blue Jays game. All other kids and teachers and support staff line the halls and applaud and cheer for these grade eights. But like so much else, that’s not going to happen this year. We can only hope that the world will get back to normal by September when Bryson starts his new high school.

 Keith McArthur (https://keithmcarthur.ca/) is the creator and host of the CBC podcast Unlocking Bryson's Brain (http://hyperurl.co/unlocking) and CEO and head of Science of CureGRIN Foundation ( https://www.curegrin.org/).