MADISON, Wis. – It’s not just about being extra clean and neat: Obsessive Compulsive Disorder comes with a host of challenges that can make life difficult for the about one in 100 adults who have it, as well as for children and their families.
According to the International OCD Foundation, the U.S. has as many children with OCD as those with diabetes. Dexter Niosi was diagnosed two years ago when he was 8.
For many this year, it feels like a lot is out of control. A pandemic is the worst nightmare for someone like 10-year-old Dexter.
“One thing we have in common in treatment and stuff is we were all worried there was going to be like a big disease that would kill people, and now there is COVID-19,” Dexter said. “It’s really hard on me and all the other people like that.”
Dexter has been to inpatient treatment and undergone treatments including exposure therapy. Looking back, Dexter’s parents Poppy and Jason Niosi can now see the red flags beginning early on.
“It was intrusive thoughts of , ‘you can’t go to sleep or you’re not going to wake up,’ or things like that,” Poppy Nioisi said. Sometimes they would live off less than two hours of sleep a night.
She added that OCD compulsions can cause pain, like picking fingers.
“(A challenge is) to watch your child hurting themselves and there’s nothing you can do about it,” Poppy Niosi said.
Dexter’s sister Ruby honed in on what they could do, finding a new hook that put the power back in their hands. When she was 8 last year, she came up with the idea to make and sell potholders, with the money going to the International OCD Foundation.
Poppy Niosi said more community resources are greatly needed. While she said they’ve found some great therapy in the area, they’d love more options for local support groups for both parents and younger kids with OCD.
Because of the pandemic this year, the family had to get more creative with how to raise funds. With masks on and social distancing in mind, they decided to go doorstep to doorstep through various Madison neighborhoods selling the potholders.
“I feel happy, sometimes sad because I feel what my brother’s going through,” Ruby said.
Beyond funds, the family hopes to raise awareness for a disorder commonly misunderstood.
“We got a lot stronger as we learning more,” Jason Niosi said.
“Sometimes people make jokes about OCD, but it’s not funny,” Dexter said. “You’re almost always worrying and you feel like you have to do rituals.”
Over OCD awareness week last week, Ruby sold 65 potholders. She’s still making them to raise money, and more information can be found at the family’s website here.
“I think it’s really amazing they’re doing this,” Dexter said.