A federal judge issued an injunction on Friday in a lawsuit filed by parents of disabled or chronically ill children seeking to enforce a mask mandate in Knox County Schools to “enable these children to have fundamental access to the school building itself.”
According to that injunction, students with autism or a tracheotomy could be exempted from the mask mandate. KCS had five days to respond with a list of additional exemptions. They added about 60, which includes down syndrome, asthma, anxiety and ADHD, as well as an all-encompassing “any medical exemption from a medical provider.”
Christie Rouse said there is an issue with the district’s list: it’s not fully inclusive, even with the option of getting a medical exemption from a medical provider. Rouse’s 10-year-old son Payson has a very rare condition called Cornelia de Lange Syndrome.
He absolutely loves school, and learning in person is really his only option to get everything he needs with his condition.
“He receives PT (physical therapy), OT (occupational therapy) and speech therapy through school,” Rouse said.
School this week hasn’t been fun for Payson. In fact, on Tuesday, he was terrified and upset when he went home. “Anytime that we try to put a mask on him. It’s just an automatic sensory reaction where he just starts gagging and he has to be vented and it’s painful for him,” Rouse said.
As part of Payson’s condition, kind of like a side effect, he has a fundoplication. According to Rouse, that essentially means the top of his stomach is wrapped around his esophagus and held together by a couple of stitches. So, if he gags, it can be dangerous for him.
“Whenever he starts retching, he needs to be vented through his feeding tube so that can come out that way and not put the pressure on those stitches because those stitches can rupture,” Rouse said.
Rouse took a video of her and her husband trying to put a mask on Payson the night before school returned. She knew she had to try and was hoping a video of his involuntary reaction would persuade teachers not to force him to wear a mask or have consequences for not wearing one.
She was hopeful that because they knew Payson, they would be a little more lenient with him. It wasn’t him being defiant. He just physically couldn’t wear a mask for safety concerns.
That wasn’t the case. She said on Tuesday, he was immediately put into isolation.
“I went in and picked him up an hour after I dropped him off and I walked in and he was sitting in the assistant principal’s office with no other students. There were adults in there, but no other students. And he was doing his work, he was writing his name and his breakfast tray was right there and he was getting his tube feeding. And he was just sitting there balling his eyes out,” Rouse said.
Rouse said Payson was very depressed when he got home. He didn’t talk and went straight to bed, which is unusual for him.
“He was no understanding why he has to wear a mask, and then he doesn’t and then he does. He doesn’t comprehend at all what’s going on in the world. So, for us to tell him to start wearing a mask when it causes actual pain, he doesn’t understand it at all,” Rouse said.
Rouse said she reached out to dozens of people, pleading for Payson to be exempted. But, she knew her son’s teacher’s hands were tied because of the federal injunction.
She saw the list of the 60 exemptions KCS sent to the court, but she was nervous Payson would still fall through the cracks.
“There’s only two of us advocating for Cornelia de Lange, but that’s why I should be able to say, ‘look, he can’t.’ And if the school nurse has to approve it, or somebody, that would be fine,” Rouse said.
She said homeschool isn’t an option, because Payson would lose out on all his therapies, and most private schools don’t have special education classes. Payson did go to school in person last year when there was a mask mandate in place. The difference was they had months to prepare with a therapist.
“I think it’s been like four months, just over four months since he’s worn a mask, so it’s just unreasonable to expect him to go back to it when it took us four months last year to try to get him to do it for just small amounts during the day,” Rouse said.
Rouse said last year, she couldn’t get medical exemptions from her son’s two providers. She said they wouldn’t do it for liability issues. She doesn’t expect that to be an option this year either.
She said if anything, the school should allow the same accommodations they had last year, like spaced out classrooms so Payson didn’t have to wear a mask for the entire 8-hour school day. Or, even give him time to adapt to wearing a mask again.
The families who filed the lawsuit have two days to respond to the list of exemptions sent by KCS.