Teaching the language of hope
Kaitlyn Francone points to the spot she wants her speech therapist to color.
“Right there,” she instructs.
“Should I kiss it or color it?” Sarah Billings asks.
“Color it,” the 4-year old responds.
Billings obliges. But the next time Kaitlyn prompts her, Billings changes the order of the question, making sure the child understands what she’s saying and not just choosing the last option.
“Should I color it or kiss it?”
“Kiss it,” Kaitlyn replies, but is more hesitant in her response.
Again, Billings obliges, this time kissing the coloring book.
They repeat the exchange twice more before Kaitlyn, visibly frustrated, changes her answer.
In working with the Francone family during an eight-week intensive program, Billings has done more than help Kaitlyn develop her speech. She’s inspired hope.
Kristyn Francone knew her daughter wasn’t progressing normally by the time she was 10 months old.
“She wasn’t hitting her milestones,” Francone recalled. “But the doctors wouldn’t listen. They kept telling me to wait.”
Francone was told she was a hypochondriac. She was told to be patient. But she kept fighting.
After seeing five neurologists, two geneticists, a cardiologist, pulmonologist and countless other doctors, Kaitlyn still doesn’t have an official diagnosis.
What they do know is she has a progressive disease where she’s losing both her sensory and motor nerves, including the ones that control speech.
Kaitlyn has been involved with Aberasturi Early Childhood Center since she was 3, doing therapy to delay the deterioration of her muscles.
This is her second year in the Hanen Centre’s speech therapy program, It Takes Two to Talk. When she started, she knew about 25 words.
“She now probably has hundreds of words, and she seems to pick them up easier,” Francone said.
As part of the program, Billings conducts four home visits where she records interaction between parent and child. In the end, they review the footage together to see what accomplishments have been made and areas to improve.
Francone said she’s had to change the way she talks with her daughter, avoiding questions that can be answered with a “yes” or “no.” Those conversations end quickly and Kaitlyn doesn’t learn.
Instead, Billings has encouraged her to follow the program’s main tenets of observing, waiting and listening. That, she said, will allow the child to direct the conversation.
“Any conversation that a child initiates, they learn language faster,” she said. “When children can create a conversation, it will be about something they’re interested in. We can follow along, and they’ll take more turns.”
Although Kaitlyn’s disease is progressive, Billings said the more she can learn now, the more it will help her as technology advances.
“We don’t know what options will be available,” she said. “The more language she has now, if she can access assistive technology later, it will only benefit her.”
By all accounts, Kaitlyn’s future in uncertain.
“I’ve had doctors tell me I’ll be lucky if she lives through high school,” Francone said.
But Francone’s dedication is unwavering.
“I’ll be darned if she dies early,” she said. “The more therapy I can get her will help her life span.”
As they watch back the video of the day’s session, Kaitlyn giddy seeing herself on TV, Francone is surprised by the strategies she used without even being aware of it.
“What were you doing right there?” Billings asked, pausing the video.
“She said ‘Bring,'” Francone recounted.
“And you said, ‘Bring … what?'” Billings said. “You’re helping her put them together. You’re using strategies to advance your goal.”
The objective was to help Kaitlyn use multiple-word phrases.
“I didn’t feel like this was my best one, but when I watched it back, I saw I did more than I thought,” Francone said.
In the end, she fills out an evaluation of her performance. She marks the areas where she performed well. She makes note of areas to improve.
She knows progress will be slow and, at times, frustrating. But she doesn’t consider the alternative.
“To me, she is worth everything plus more,” Francone said. “I’m not giving up on her. I refuse. She surprises me every day, so I know she can grow.”