Yuen: For some people with disabilities, the 'party' stopped 19 months ago

Before COVID-19, Pat Leseman used to marvel over her son's chockfull schedule. It wasn't unusual for Michael to bounce from hiking club and music lessons to fitness class and glee club all in a single day.

Michael, 37, has a developmental disability from a genetic condition. When the pandemic hit, many of his favorite activities for people with special needs switched from in-person to online. Michael has a hard time staring at a computer, so his world got a lot smaller.

Pat says after everything shut down, Michael longed to be around people again.

"He doesn't understand this COVID thing," Pat says. "He kept asking, 'Party? Party? Today, party?' I kept saying, 'Not today. The world is sick.' "

With the world sick for about 19 months now, Michael has stopped asking about parties. Unlike able-bodied adults, he can't just call up a friend, go for a drive, meet up for a beer, or any of the things someone like me might take for granted. His mom notices he fidgets a lot more than before the pandemic, sometimes even poking himself in the eye. He easily gets frustrated in his isolation.

"It does tear my heart apart that my son is not participating in very much because he refuses to look at a screen," she said. "And there are many Mikes out there."

What makes this story even more painful is Michael is not participating in the very program Pat co-founded nearly 20 years ago. The Highland Friendship Club serves people with disabilities by offering them lifelong skills and connections to the community. The nonprofit has been riding out the pandemic with admirable skill, but as it's adapted, it's found that the new Zoom world order has left some behind.

When I joined Pat recently on her fern-filled back deck in St. Paul's Highland Park neighborhood, she explained the origins of the organization. When Michael entered middle school, he and his friend John, who also has special needs, stopped getting invited to birthday parties and couldn't participate in sports or the school play.

Their moms knew they needed to do something.

"I always say, watch out for two women with fire in their belly and passion in their soul, because they're unstoppable," Pat says.

John's mother, Rosemary Fagrelius, and Pat scrounged up a few basketballs and rented out the Hillcrest Recreation Center on a Friday night. They brought their teenage sons and invited their sons' friends. Some had intellectual disabilities, others had physical disabilities.

It was good for the teens because it gave them something to do that was strictly theirs. A lot of kids with special needs are expected to tag along to their brothers' and sisters' soccer games and band concerts, Rosemary explains.

"Their whole social lives revolved around Mom, Dad and their siblings," she says. "It wasn't healthy for anybody."

But one Friday night at the rec center turned to six Friday nights.

"Rose and I look at each other and go, 'We are not going to be rec directors,'" Pat recalls with a laugh.

So in 2002, the two moms, already busy with their full-time jobs, founded the nonprofit and scaled up. Now the group has 200 members and offers 35 confidence-building classes a week, ranging from card-making to karaoke. Rosemary and Pat are still on the board.

A strange thing happened during the pandemic. While the club's shift to mostly online has been hard on people like Michael, it has opened doors for a lot of other folks across the state who didn't have many chances to make friends or be active in their own communities. The move to Zoom also erased the biggest barrier for many: transportation.

Enrollment in the friendship club actually shot up during COVID-19. It's a bright spot in a pandemic that has been especially isolating for vulnerable adults.

Some of the club's members are immuno-compromised and are at greater risk of being seriously sickened if infected with the virus. Others have a hard time wearing a mask or keeping their distance from others, so the club is staying mostly remote for now.

While Michael is vaccinated, getting there was a challenge. His mom coaxed him over six weeks with practice runs involving the friendly poke of a meat skewer on his arm. The thought of him being hospitalized is not a risk his parents are willing to take.

The pandemic has been hard on Pat, too. She worries about him. And the shortage of personal care attendants means there are fewer people to lighten her load. Every day begins at 5 a.m. when she hears Michael humming like a race car in his bed.

But Pat knows her son, and others like him, are resilient to change.

"They've had to be a Gumby their entire life," she said. "Mike has been to seven schools, in and out of doctors, teachers, and PCAs coming and going. It's the world of people with disabilities. You just become a very accepting person. The rest of us, we'd fold."

Until then, Michael will be waiting for the party to start. Waiting for the world to get better.