Jodacie Bartley, 10, was fine when her mother, Veronica Dominguez, dropped her off at Bayfield Intermediate School in August.
Five hours later, she was having seizure-like spasms, then muscle tics and involuntary sounds. Within 48 hours, Bartley was flown to a children’s hospital in Denver.
“I call that the worst 48 hours I’ve ever experienced,” Dominguez said. “It was like taking a normal child and turning her completely around.”
Jodacie has tic syndrome, and if it continues for a year, she will likely be diagnosed with Tourette syndrome. Ticcing is a relatively common movement disorder among children. In Jodacie’s case, the severe tics triggered self-harm and led to social isolation or stigma. Dominguez is relying on one tool to combat those challenges: openness.
“I think, above anything else, getting Jodacie’s story out there is important, because if it helps one child in this lifetime, we’ve done our job,” Dominguez said.
Between September and November, Jodacie spent about 15 days in the hospital. Her severe ticcing episodes can occur multiple times a day. These “tic attacks” made her weak enough to be in a wheelchair. Jodacie described them as an overpowering feeling of thunder and lightning hitting her body, Dominguez said.
“Sometimes, it can be funny if I have funny tics. Other times, my other tics just kind of hurt me,” Jodacie said.
Of those who have tic syndrome, Jodacie has a rare case because of its sudden onset and the vocal ticcing with curse words, Dominguez said.
Less severe tics are thought to be the most common movement disorder among children, but that frequency is hard to know for sure. It can change depending on the study’s longevity, the age of the children and other research variables, according to a 2016 Washington University study.
About one in 360 children have Tourette syndrome, but more likely are undiagnosed, according to the Centers for Disease Control and Prevention. The severity of tics can change over time. About 47% of young people were tic-free by 18, while about 11% had moderate to severe tics at 18.
“I’m devastated on the way things came out for her. ... It hurts me as a mother to watch,” Dominguez said.
Dominguez left her job as a housekeeping team leader at Mercy Regional Medical Center in August to care for Jodacie full time. A single mom of four, Dominguez has had to rely on family for child care while seeking treatment for Jodacie. The separation has been difficult for them, she said.
For Zalexi Bartley, 8, seeing her big sister’s health change has been hard: She’s not as active, she doesn’t play as much. Zalexi’s biggest worry is “just the fact that Jodacie is doing self-harm,” she said.
Because of her symptoms, Jodacie has not been in school all year. She played volleyball, but she’s nervous to play again, she said. She used to ride her skateboard, but when she tried to ride it with tics, she fell.
“I don’t know how I feel about riding it again. The fact that my legs can give out at pretty much any time kind of scares me,” Jodacie said.
Facing it head onSeeing her daughter lose so much, Dominguez took action.
Formerly extroverted, Jodacie became anxious in social situations. Strangers would make comments about her tics or ask why she was in a wheelchair. The other kids did not know how to react around Jodacie.
Dominguez started teaching her daughter to self-advocate and tell people about her tic syndrome.
She posted videos of her daughter on social media to help people get used to the tics and changes in her behavior. She sent a book about tics to Jodacie’s class. She would bring Jodacie to play with her classmates for 15 minutes to help the kids adjust to her tics.
“She has been very, very open. As a mom of a 10-year-old, that openness really helped my daughter reconnect with Jodacie,” said Nicole Johnson, a family friend who started a GoFundMe to help raise money for the family’s medical bills. “Jodacie is the type of girl who will help other kiddos too, when she’s ready for it.”
When Jodacie told her mom that she wanted to hurt herself, Dominguez kept an open dialogue with her.
“It was huge that she came forward and said that,” Dominguez said. “It makes me feel good that ... she can come to me and talk about it. That’s what I would hope for – for everybody to have a safe person, a safe spot.”
Mental health is kept quiet so often, she wanted to be open about it to combat the stigma, especially because La Plata County has seen high rates of suicide in the past.
Johnson said Dominguez’s openness about mental health and her daughter’s syndrome has helped start conversations among other mothers who are concerned about depression or whose children have special needs.
“Especially with all this COVID going on. ... Looking at the anxiety and depression out there, we need a bigger voice,” Johnson said. “We need to really focus on mental health with our kids, so it’s not taboo to talk about.”
For Jodacie, things are slowly returning to something more normal. This week, she played Barbies, hide-and-seek and freeze tag with her neighbor – a big step, Dominguez said.
What gives her strength? Bear, her tiny Pomeranian, she said.
“And I guess ... I just don’t give up sometimes,” she said.