Technology has made communication easier for many of us – we can communicate with cell phones and on computers in ways never imagined a few decades ago. But what about a subset of people for whom even the most basic communication has been a struggle? How has technology helped them?
Anthony Arguin is a 5-year-old boy in Jeffersonville with complex disabilities. But a device he started using last spring is teaching his family just what Anthony is capable of.
Anthony has cerebral palsy. He also has hearing and vision impairments. His disabilities prevent him from being able to walk, feed himself or communicate verbally. However, this doesn’t mean he has nothing to say – on the contrary.
When Anthony was 2 years old his parents and older sisters realized he could understand them. Ever since, they have been trying to figure out Anthony’s wants and needs through a bit of sign language and a lot of guess work.
But six months ago, Anthony was given a communication device and almost right away his inner world began to open up to them.
The first things they learned about him? His mother, Tiffany Arguin, laughs as she answers this question.
“He loves the Wii!! And specific colors,” she says. “And he has just sense of humor that he’ll use with that, like we already knew he did, but just how much more it’s come out since he’s been able to use this …He’d say something silly and we would kind of chuckle but he thought it was hilarious … just things like that. I mean, it’s like, ‘You’re thinking that?!’”
They discovered that Anthony loves music and playing the piano, too.
Anthony’s technology is called an augmentative communication device. It helps children and adults who have communication-related disabilities, or who are essentially non-verbal, to express themselves with words. Anthony’s particular device is a Nova Chat 10, made by Saltillo. It’s a portable, speech-generating device that looks a bit like an iPad, with its 10-inch screen and colorful icons.
Tiffany Arguin calls the device a “talker” – it generates words and phrases out loud and Anthony can select the phrases that match his thoughts.
His mom says it’s made a huge difference for Anthony.
“He’s just so excited,” she says. “He would throw his body around, like, he would be frustrated and we would know what he wanted. But for him to actually be able to go over to the talker and be like, “Mom, I want a hug,’ and just be so excited, like, “She got it!” And just reinforcing that … huge! That he can communicate, that this is something that I need or want.”
Anthony’s family learned about this technology from a program called I-Team at the University of Vermont. It’s a group of specialists that provides training and technology to kids from ages 2 to 22 all over the state. These are kids who need help with both academic and basic daily life skills. Many of them are non-verbal, like Anthony.
I-Team works with about 150 kids in the public school system. Tiffany says they signed Anthony up with I-Team when he was 2 years old.
“They brought in a whole other set of people to help … with figuring out augmentative communication, and we just knew that’s how he was going to communicate,” she says. “You know, once he got to a certain age this is where we would be heading.”
One member of the group was Amy Starble, a speech-language pathologist and consultant with the I-Team. She travels to remote parts of the state, meeting families who have no idea how to cope, let alone how to communicate with their children.
Starble’s job is to help match technology with a child’s needs. And she says she can tell from the emotional reaction of these families when she arrives on the scene that what she also brings is hope.
On a recent afternoon, Starble visits the Arguins at home in Jeffersonville. A big group is gathered today: a speech-language pathologist from the local school, members of the I-Team and several family members.
Anthony lies on the living room rug, making grunting noises and high pitched squeals of excitement at seeing so many people gather around him.
Tiffany Arguin brings Anthony into a seated position in her lap while Starble works with the 5-year-old and his device. The “talker” has a touch screen, but Anthony struggles with motor control, so he uses a large orange button attached to the tablet.
Starble begins by reading a book.
“If you have something to say while we’re reading, you go ahead, OK? I’m going to put it here under your foot,” she says. “Oh, you do have something to say?”
Having a way to communicate has given Anthony a sense of control. Instead of screaming to get his mom’s attention, he can use his electronic voice to tell her what he wants.
“It’ll have its scanning voice, but is also has its child voice, so when you select what you want to say it changes,” Tiffany says. “So we will kind of ignore – not really ignore – the adult voice that is being scanned, because it’s kind of like he’s thinking that. And then when he hears what he wanted to say, and he’ll hit it, it will come in that child’s voice and we’re like, “Oh, Anthony, did you need a hug?” or come running from the other room. And that gives just more power what it can do for him.”
It’s not easy to get these devices, though. Tiffany Arguin had to fill out what she calls “a mountain of paperwork” for Medicaid in order for Anthony to receive his first trial device. Now that he’s been using it successfully for six months or so, Starble is helping Tiffany submit even more paperwork to prove Anthony would benefit from a permanent device.
“It’s clear for us, but, you know, you have to show that in paper, very explicitly. So it’s taken a lot of collaboration between both teams – both school and I-Team to be able to put together.”
Starble calls it a robust system designed to grow with him so he won’t have to change or get another one.
“We wouldn’t want to, say, in five years have to shift dramatically and give him a different one,” Starble says. “We want one that grows with him and also has endless possibilities on how you can construct sentences by combining words and making lengthy utterances and just constructing your own thoughts.”
Children like Anthony who cannot communicate verbally are often spoken to or talked at. They become passive observers of life, says Starble. With this technology, she encourages teams to think about how they can help the child initiate the interaction.
“That allows them to start the conversation,” Starble says. “That allows them to start the connection with people.”
Starble also tells families it’s OK to expect a lot from a child with disabilities.
“I know that all kids have something to say, and that it’s my job to try to figure out the best way that they can do that,” she says. “I can contribute that to teams and work with the school SLP’s to help make sure these kids have systems they can use their whole lives … if they need to.”
When Anthony uses his device to communicate, he appears overwrought with happiness that people can understand him. The technology gives Anthony a voice. And his family can get to know the real boy living inside his disabled body.