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Story: Katie finds her voice
Imagine you’re a bright little girl.
You don’t want milk for dinner. You want juice, or chocolate milk, or regular milk heated.
But you can’t speak the words.
That was the case for Katie Suggitt, whose cerebral palsy limits her speech to a handful of words.
A simple request could turn into an elaborate guessing game that was stressful for the preschooler and her parents.
“There was frustration there for Katie,” says her mom Sarah, noting that Katie’s twin sister Emily – who doesn’t have cerebral palsy – was talking a mile a minute.
That changed when Katie was fitted with speech technology at Bloorview Kids Rehab. A screen with pages of kid-friendly words paired with pictures was mounted on her wheelchair so Katie could press the buttons she wanted to activate the machine’s voice – giving her access, over time, to thousands of words.
“It’s a huge freedom for her,” Sarah says. “It opened up a whole new world.”
A breakthrough came this past summer when the girls were attending a regular camp and Katie was upset but had trouble expressing what was bothering her. “The counsellor asked: ‘Are there things we did today you didn’t like?’” her mom recalls. “Katie went to the camp page on her voice device and quickly hit ‘yoga’ and ‘gymnastics.’
“That was huge, because the gym part was a relay race and all about speed, which isn’t a strong suit for Katie,” Sarah says. “It was empowering to her that she could indicate what she didn’t like.”
Katie’s use of the technology spiked this fall, her mom says, when she returned to kindergarten at Bloorview School and realized a classmate used the same speech device.
“Katie goes: ‘Wow, here’s someone else who has no speech and this is her form of communication and she gets me. The two of them understand it takes time to navigate the screens to hear what each other are saying. They’re willing to wait. There’s a joke page that Katie really enjoys, and the two girls tell each other jokes. Even in the first month of school, I noticed that suddenly Katie wanted her device with her all the time, which was amazing.”
Speech technology is a form of augmentative and alternative communication (AAC) used by children who have little or no speech.
AAC can include “gestures, speech-generating computers, pictures, letterboards, eye gazes or sign language,” says Laurel Robinson, a speech-language pathologist with the communication and writing aids team at Bloorview.
Children with a wide range of conditions that affect speech – including cerebral palsy and autism – can benefit.
At Bloorview, teams that include speech and occupational therapists, communication disorders assistants, technology consultants and engineers work together to customize systems for each child.
“We do an assessment in the home, community and school to gather vocabulary the child needs from each of those environments and then recommend a system,” Laurel says.
The biggest challenge children using speech technology face is engaging people who aren’t familiar with the devices: it takes time to compose messages and in our instant-gratification culture, people often aren’t willing to wait, Laurel says.
Bloorview is hosting an AAC awareness day Oct. 15 where the public can take part in a number of simulation exercises to better understand non-speaking communication and how it feels to be non-verbal.