Giselle Alnaser flashes a wide smile and raises her hands in excitement as she thinks about the Cookie Monster singing her favourite song.
In a few minutes, the seven-year-old will turn on the YouTube video of “C is for Cookie” all by herself and she can hardly wait.
The laptop is open in front of her. The black headset with its 16 sensors that read her brain activity is in place. She’s just waiting for the go-ahead to turn on the song, something she has taught herself to do just by using her mind.
Giselle, who has a global development delay caused by a rare gene mutation, has limited speech and physical mobility and is unable to use her hands or voice to control a computer.
But here at Holland Bloorview Kids Rehabilitation Hospital, Giselle is one of a few dozen children and teens who are using brain computer interface (BCI) technology to interact with their environment. They’re learning how to use their thought patterns to play a favourite song, paint with a robotic ball or race a remote-control car around a small track. And researchers at the hospital say these early stages suggest the remarkable technology holds the promise of one day helping Giselle and children like her find new ways to more fully engage with their world.
Holland Bloorview is the first pediatric hospital to use such technology in a clinical setting. It’s a non-invasive system; the headset and its 16 small, felt sensors sit gently against the scalp. The software, called Mindset, was developed at the Bloorview Research Institute’s PRISM Lab with the goal of helping children with severe neuromotor disabilities learn, communicate and play.
So far, 66 kids and teens have participated in the hospital’s clinical BCI program, which launched before the pandemic in early 2019. Children with cerebral palsy, brain injuries and neurodegenerative conditions have used the technology and the program has recently started offering it to those with autism spectrum disorder and Duchenne muscular dystrophy.
The BCI allows children, who depend on parents, family and caregivers to speak or act for them, the chance to do something on their own. That independence, researchers and clinicians say, fosters a greater sense of autonomy and dignity for children. Soon, the team will launch a trial to investigate whether the technology offers cognitive development benefits to children with disabilities.
“These are kids who require an intermediary to interact with their environment,” said Susannah Van Damme, an occupational therapist and the BCI program’s team lead. “In a school setting, they might have an educational assistant doing hand-over-hand help with them to contribute to a painting project.
“BCI takes out the intermediary. Children can engage directly with the materials. The benefit is feeling mastery in doing something — and being able to do it independently — which we know is really important for self-determination and development of autonomy.”
As BCI technology advances, the hope is that children with disabilities will be able to use it to communicate independently or help them move on their own using a brain-controlled mobility device, said Tom Chau, a senior scientist and head of the PRISM, or Paediatric Rehabilitation Intelligent Systems Multidisciplinary, Lab.
“The future is completely wide open in terms of the possibilities,” said Chau, an engineer who has been developing the pediatric BCI technology for 17 years. “Kids have shown us that their capacity to learn and to modulate their brain activities is well beyond what we understood.”
Today, Giselle is demonstrating how well she can use the BCI technology in Holland Bloorview’s Creative Arts Studio.
Earlier, she used her thought patterns to activate a bubbler on a sensory cart, smiling in delight as bubbles floated up though the clear, water-filled tube.
Now she’s patiently waiting in her wheelchair, ready to play “C is for Cookie” on the laptop sitting open on a paint-splashed table in front of her.
The BCI technology, which uses non-invasive electroencephalography (EEG), is programmed to respond to changes in brain activity, either from flashing visual stimulus or a motor imagery mental task.
Giselle has learned to quiet her brain to a resting, or neutral, state, which the BCI technology understands to be like the ‘off’ function of a simple on-off switch.
When she wants to turn on the YouTube video, Giselle will think of clapping her hands, and the change in brain activity — going from a neutral state to an active state — will be understood as the ‘on’ function, prompting the song to start.
When Mirusha Ravindran, a life skills coach at Holland Bloorview, signals Giselle to start ‘C is for Cookie,’ Giselle smiles and a moment later the YouTube video starts to play.
Giselle makes joyful noises as Cookie Monster gobbles up a cookie in time with the music. Ravindran, who is dancing, stops when Giselle pauses the song.
“Unfreeze me! Unfreeze me!” she coaxes. And Giselle starts the song up again.
When the song ends, on a crescendo of a “A cookie, cookie, cookie starts with ‘C’!” Ravindran claps and cheers.
Samah Darwish, Giselle’s mother, loves watching her daughter use the technology. Giselle, who attends the Bloorview School, started to learn how to use BCI when she was five and Darwish said she can now choose, by nodding or shaking her head, which brain-controlled activity she wants to do.
Though Giselle loves to paint with the robotic ball, her current favourite BCI activity is playing songs.
“For Cookie Monster, she was super excited,” said Darwish, who describes her daughter as outgoing and someone who looks forward to learning new things. “You don’t see her feeling as though her disability is limiting her. She’s always smiling and excited and trying to move her body whatever way she can, even though she doesn’t have much control.”
Darwish and her husband, Naser Alnaser, hope that BCI will one day allow their daughter to move on her own and communicate independently. Right now, Giselle can only communicate with the aid of someone else, though she will soon start to trial a BCI communication device developed by the PRISM Lab.
“It’s exciting to think that one day she’ll be able to communicate,” said Alnaser, who still recalls the first time his daughter completed a BCI activity. “It was truly emotional. For any parent, they want to see their kids succeed in life, to have some independence. Hopefully this technology will do that for Giselle.”
Paul Mudhar and Kunval Hanif are also eager for BCI technology to advance to help their 14-year-old son, Zen, communicate and move around his environment more freely.
Zen, who has cerebral palsy and epilepsy, is non-verbal and requires assistance for most daily activities. Mudhar said participating in the BCI program has confirmed that his son understands the world around him — and has allowed him to engage with it in ways they didn’t think possible when he was younger.
With BCI, Zen can race a small remote-control car around a track, something he anticipates with a smile.
To make the red racing car move forward, Zen, wearing the wireless headset and sensors, thinks about himself driving a car. Crouched at his side, Hanif asks Zen how fast he’s driving, and suggests that he imagine a fun place to drive to.
“At one point, when the car was stopped, I said ‘Are you picking up some passengers?’ And he said ‘No,’ and then just drove off. So it becomes interactive,” Hanif said. “We can engage with his play. That means everything for us.
“All Zen’s life, we dreamed of being that interactive with him, where we were both in the same space, communicating.”
Zen’s parents hope that the technology will one day help their son do simple things at home on his own without him having to call them for help, such as switching on a fan or turning off the lights.
Hanif recalls crying the first time she saw Zen use BCI, overwhelmed by the pride she felt for her son.
“In that moment, when he activated music, to me all I could see was his abilities, that he was able to do things on his own.”
For Chau, it’s those interactions between child and parent that push him to continue to develop BCI technology.
Though labs around the world are working on BCI for adults, few are focusing on the pediatric population. Chau, whose lab developed specific software for kids’ brain activity and abilities, hopes that will change.
He said his observations suggest that young children who start learning how to use BCI early in life will adapt to it and will likely develop alongside the technology and could, as adults, use it to live independently and have a profession.
“We may have people driving motor vehicles,” said Chau, whose lab currently has a prototype of a brain-computer mobility device in the pipeline, along with BCI communication software. “We may have politicians on Parliament Hill who are non-verbal who are communicating and participating and setting government policies on national agendas just simply using the power of the mind. This is all possible.”
Van Damme said she never tires of watching children engage with the BCI in the hospital program. She notes that studies are required to fully understand the potential benefits of the technology and that, for some children, BCI doesn’t always work for reasons that are not yet understood.
Of the 66 children who have participated in the BCI program, at least two have not had any success while several others have dropped out because using the technology takes up too much time in already busy schedules or they are bored of the activity options.
But for most children, the BCI has led to feelings of independence and “small moments of joy,” Van Damme said.
“It’s so gratifying to them, that they’ve done something, they were able to do what they wanted to do, and they did it by themselves.”
For some children, using the BCI has encouraged teachers to modify individual education plans to better suit their abilities, she said. And for families, the technology has helped siblings play together, sometimes for the first time.
“We have one kiddo who can play a video game with the BCI. It’s a two-player game, and his sister, who’s in university, loses to him,” Van Damme said. “What teenager doesn’t want to beat their siblings in a video game? And that’s not an experience they would have otherwise.”
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