How Wisconsin’s Mother of the Year helped her disabled adult son when his school shut down over the pandemic – Milwaukee Journal Sentinel

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Brookfield mother Sarah Knowles has had to adjust to a new way of life to help with her disabled son Matthew as schools shut down because of the coronavirus pandemic.(Photo: Evan Casey/Now News Group)

On a normal school day, Brookfield resident Sarah Knowles would sendher son Matthew to classat about 9 a.m.

Then, she'd spend hours doing the mundane chores for the day: cleaning the house, grocery shopping, walking the dog.She'd also have some time for herself.

But on March 13, that all changed.

After it was clear that classes andschools across the state would not return to in-person instruction, Knowles had to quickly adjust to a new life during the uncertainty of a global pandemic.

Matthew, 21, has cerebral palsy and a chromosome disorder. Cognitively, he's at the level of a 1-year-old.

The CDC has said that patients with cerebral palsy may be at a higher risk of a serious COVID-19 infection.

"It just seemed like there was zero down time because there is always something that you needed to do," Knowles said of the months her son was home from school.

But Knowles, who was named Wisconsin's 2020 Mother of the Year by American Mothers Inc., made it through.And now, she's encouraging others to wear masks and to take the coronavirus pandemic seriously so Matthew, and others like him, can stay in school and receivethe instruction they need.

Sarah Knowles helps her son with his virtual learning.(Photo: Submitted)

Knowles said she's used to being home often, but not this much.For several months at the onset of the pandemic, she and her son didn't leave the house.

Matthew'sschool, Fairview South, set up virtual options, which included Google Classroom and a steady stream of videos. But Knowles said it's difficult to complete theIndividualized Education Program which is required for special education students virtually.

"His school, everything is so hands on," Knowles said. "So I can't put him in front of a computer and say, 'Matthew, you have to do this assignment.' You have to be there with him."

Matthew would do music therapy, occupational therapy and physical therapy during school hours.But when school went virtual,Knowles had to fill some of those roles.

Matthew was diagnosed with osteoporosis last year, and several of Matthew's doctors appointments were cancelled because of the pandemic.

"For physical and occupational therapy, we can't replicate that virtually, so that was tough," she said.

Knowles would take walks with her son when the weather improved, but her home wasn't large enough for Matthew to do all that was needed for his physical therapy.

For music therapy, the school would send a video, and Matthew would play along with a drum at home.

Or the school would send a video for art class, and Matthew would have to draw a picture.

"It was pretty hard work, because we had this schedule of art or music today, and I've never really done that before," said his mom.

Knowles said she's helped her other son with math or science homework in the past. But with Matthew, it's been different.

"It wasn't like they were checking to make sure we were doing everything at a specific time, but it was more like, hopefully we can get everything done," Knowles said.

Over time, it got better.

Matthew would use an iPad and he would often put his ears and face up next to the device so he could see and hear the staff and teachers better.

They scheduled a video call every week with teachers and the school nurse and other staff.

Students in the school also sent in photos so everyone could see everyone else.

Sarah Knowles bought a special third wheel for her son Matthew's wheelchair.(Photo: Submitted)

Usually, Matthew and his family frequent summer festivals, parades and other events during the summer months.But that wasn't the case this year.

With many of those events cancelled, Knowles had to find some activities for Matthew.

A spring break trip with Matthew to Washington, D.C., for Knowles to receive theMother of the Year award was alsocancelled.

So Knowles bought a special wheel for Matthew'swheelchair, making it into an all-terrain wheelchair so they could go on hikes together.They frequented Lapham Peak over the summer.

Knowles also said Matthew was able to ride horses this summer, an activity that Knowles said was easy to do while social distancing.

But with many of Matthew's favorite activities unable to take place, Knowles said the beginning of the new school year couldn't come fast enough.

She sent Matthew back to school partly because his walking has regressed since he has not been able to do physical therapy.

"That was one of the reasons that we did go back to school, 'cause he was having a lot more trouble walking, and that makes it more difficult to care for him, she said.

Matthew was back in his classroom in early September. With only threeclassmates in the room with him, and students and staff wearing masks, Knowles said she felt that Matthew would be safe.

20-year-old Matthew Knowles is seen here at a Milwaukee Brewers game. Matthew's mom, Sarah, has been pushing for more adult-sized changing stations to come to sports stadiums like Miller Park soon.(Photo: Sarah Knowles/Submitted)

Knowles, who won the Mother of the Year award in part because of her fight to put adult-sized changing tablesat more buildings, stadiums and venues across the state and the nation, hasn't stopped pushing for more tables, even during the pandemic.

She recently toured the new changing table atGeneral Mitchell International Airport in Milwaukee.

She's also encouraging people to wear masks, and to take the coronavirus pandemic seriously.

Knowles still worries for Matthew'ssafety. She said she'd likely take him out of the school if there were evenone positive coronavirus test there.

She said she commonly hears people telling those who are at risk to stay home.

"That sort of attitude surprises me, because more people than you know have a pre-existing medical condition," she said."It's quite hard to hear people say, it doesn't really matter about you.'"

Evan Casey can be reached at 414-403-4391 or evan.casey@jrn.com. Follow him on Twitter @ecaseymedia.

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How Wisconsin's Mother of the Year helped her disabled adult son when his school shut down over the pandemic - Milwaukee Journal Sentinel