Nathanial Ferrari-Lewis doesn’t speak. His mother, Lidia, dresses him and brushes his teeth, often wondering what her nine-year-old son with autism and Down syndrome is thinking and feeling.
“I have always been certain something is going on inside him. I just haven’t always known what,” says Ferrari, who has observed Nathanial play simple computer games quietly, but with evident fascination, since he was two and a half.
These days, he's beginning to express himself using an assistive communication app to select images and words. He taps the sentence he’s created—maybe to ask for strawberries or a favourite toy—and a voice speaks his words. It’s one of many resources in Ferrari’s toolbox, along with talking or reading aloud to her son and playing interactive games, to encourage communication.
Finding what works for your child There are many ways to help non-verbal kids develop language, and what works depends on what motivates the individual child to engage. First and foremost, it’s important to model language, because that’s how kids learn and develop, says Jennifer O’Donnell, board chair for Speech-Language and Audiology Canada and a speech-language pathologist in New Brunswick.
“Let's say mom is making chocolate chip cookies and her child taps her and says, ah ah. You can ask, what are we going to put in next? Chocolate chips or nuts? Hold out both. When they reach for the item, say, nuts. Let’s put in nuts. You can add a word and repeat words. So you are modeling language. At the same time, you could model use of a communication tool, perhaps pointing to pictures of nuts and chips to show choices.”
Many of the kids Gabrielle Trepanier works with have physical impairments. A paediatric occupational therapist in Vancouver, she shows them and their caregivers how to use assistive communication devices. Some electronic ones enable kids to select pictures, letters or words by pointing with their head or indicating with their eyes.
When your child gets frustrated Trepanier also steps in when kids can’t find a way to be understood, before they become exasperated and their emotions escalate. “Parents are usually good at knowing when their children are getting frustrated, but they may miss a few cues [before]," she says. “Maybe the kid started to rock before they began banging their head. And maybe before the rocking, they were clapping their hands."
She often asks parents to journal what is happening during—and ideally before—their child escalates. But sometimes parents are neck-deep in the situation, or occupied with other tasks, and they miss cues. “That’s when an occupational therapist might come in and be external eyes—someone to say, I notice Johnny is calmer when the TV is off. And he’s less upset when he’s given extra breaks on his busiest days,” says Trepanier.
Frustration can also be reduced when you set up predictable routines that help a kid understand how a situation will play out. Say a child likes to be brought into the living room to watch TV after breakfast. One way to tell her it will happen is putting a toy on her tray once she’s done. It’s her cue to signal what’s coming—that her needs and desires have not been forgotten. Motivation matters Heather Atkinson-Rossi and her husband Gino learned in a 10-week program called More Than Words how to engage their son Kellen, who was three years old at the time. And they learned how to motivate him. “We were trying to get him to use his mouth to say a word or make a sound. The secret was bubbles. We would exaggerate blowing bubbles. And we’d say one, two, three, blow!—wanting him to count or say blow.
“He would stick his finger under our lips and pull our chin, trying to get us to blow bubbles. That was Kellen figuring out you use your mouth to make it happen. He didn’t have the words, so he showed us,” says Atkinson-Rossi of her now five-year-old.
It was at least as much a lesson for them as for him. They saw how intently he was paying attention and trying to communicate.
Today, Kellen uses an app on his iPad like the one Nathanial uses, and a picture album that he pulls images from to say what he wants. “Now that he has more ways to communicate, he doesn’t run out the door any more to show me he wants to go to the park. He tells me. He’s engaging with his sister, and he wants to play more because he can.”
Atkinson-Rossi works as a special education assistant in Ontario. She uses imagery to help her students anticipate the day’s events, such as visual schedules. She sets up the schedule as images attached to a Velcro strip, and as kids complete a task, they remove the appropriate picture and move to the next one. “Being able to see their day laid out reduces anxiety," says Atkinson-Rossi. "They know what’s coming next, and it gives them independence.”
Is sign language right for my child? Speech and language pathologist O’Donnell works with babies to preschoolers, who sometimes begin with Baby Sign, using gestures to communicate one or two words. This approach is paired with spoken language. She tells parents who are worried that signing could hinder spoken language development that the research shows otherwise. “It builds a bridge from not speaking to communicating. If it works for the child, frustration may decrease because they have a way to ask for what they want or need,” she says.
The sign language debate comes in with older kids. American Sign Language can be convenient, especially for quick messages, but now they have social networks and not everyone around them may sign. “By school age, it’s not just about what methods the kid who is nonverbal is comfortable with. Their communication partners have to be on board, so everyone can communicate,” says Kelli deVries, a speech-language pathologist for New Brunswick’s school district.
A full toolkit... and a patient approach As they move from one space and peer set to another, nonverbal kids may switch communication tools. They might use a recorder where they push a button to play a joke at recess or to say hi to friends in the hall. For more in-depth conversations, they might use an iPad app to construct sentences.
Regardless of method, deVries tells parents and teachers to give kids enough time to create their own messages. “Give that wait time and have the expectation that they communicate their needs themselves rather than speaking or making choices for them,” she says.
The diverse classroom Kaitlin Coghlin was non-verbal until the age of eight. She speaks now, mainly because she went to a school with verbal children and had determined teachers, says her mother, Nicole Callander from Ontario.
Kaitlin started using picture boards in first grade, motivated to do so because she wanted to know where her parents were while she was in class. “We had pictures of our offices and pictures of us. She had to put the pieces together herself to ask where we were,” says Callander.
By grade two, the kids would sing songs at circle time, spelling out the words for Kaitlin with letters, and speaking the words. Over the years, she was partnered with typically developing kids to do projects, and they would talk to her. She wanted to be friends, so she worked with them, day in and out, on speaking.
At 17, Kaitlin still struggles with verbalizing certain phonetic sounds. But if her parents don’t understand her, she finds alternative words to describe what she is trying to say. “That involves putting together several ideas in sentences when years ago she would say one word, and if we didn’t understand, she’d give up,” says Callander.
Abstract goals As for Lidia Ferrari, it’s not important that her son speak in the conventional sense, but she hopes he will continue to develop his self-expression in other ways that work for him. “Nathanial’s an expressive, happy boy. He wakes me with a giant hug every morning. But he has yet to say, “Mommy I love you” in any form. Maybe as he continues to grow and communicate more effectively he will be able to articulate abstract concepts, like love and happiness,” she says.