Communication technology gives Arlo a voice and choices

Arlo Gillett is non-verbal, but the youngster has plenty to say these days thanks to augmentative and alternative communication technology.

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The six-year-old was diagnosed at age two with Fragile X, one of the leading genetic causes of autism spectrum disorder, with being non-verbal a common symptom of the condition.

Today, he can communicate with his parents Melissa and Aaron Gillett, and others through a tablet using the TD Snap app, which serves as a “talker,” provided through the augmentative and alternative communication (AAC) clinic at the Children’s Treatment Center of Chatham -Kent.

“When you have a non-verbal kid, you try and show them that you’re ready to respond to their needs,” Melissa Gillett said. “But, we don’t always know if they’re getting everything they want or if they know how to ask or if it’s even an option.”

Arlo’s talker is set up for his communication needs, Gillett said.

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He can push buttons to say his name and explain that his talker is his voice, she said. He can go into the “all words” category that lists various foods and drink items and also has his favorite toys, games, books and shows for which he can ask, she added.

“That will just keep expanding” as his preferences grow and change, Gillett said.

He also has his favorite people listed, including Mommy, Daddy, grandparents and members of his team at Indian Creek elementary school in Chatham.

But Arlo started off with a no-tech communication device, a flip book with various things he can point at to indicate what he wants. He graduated to a low-tech device, which has a voice output that accompanies the pictures he presses on a device, before moving up to a digital talker.

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Tracy Koehler, co-ordinator of the AAC clinic at the children’s treatment center, said moving up to a talker comes after someone become efficient in using no-tech or low-tech devices.

She said using the technology is “learning a new language,” which takes a lot of modeling and patience.

Working with Arlo’s family and school team, he was efficiently using his flip books, “so we knew we could move to something that was a little bit quicker for him. . . and easier to expand on,” she said.

Gillett gives a lot of credit to Arlo’s “incredible school team,” noting they played a big role in how Arlo became so fluent in using his flip book.

“And, I know they will be a massive part in how he’s going to use his tablet talker, because they’re with him so much,” she added.

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Koehler said the AAC clinic, designated to provide prescriptions for digital talkers, offers to send staff to schools to provide supports for how to use the technology.

Whether it is the parents, teachers or education assistants working with a child to use this device, Koehler said, “It is, the beginning, work and it does take a lot of modeling for the success to happen.”

The talker has greatly expanded the communication between Arlo and his family.

Gillett said the first time they brought Arlo’s talker home, he used it to say, “Bedtime, Daddy, read.

“I had been taking him to bed before that, but he wanted daddy to do it,” she added. “I just don’t think he realized until he saw this device and saw these choices that he could ask for something different. It’s just so amazing.”

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Lately, when she asks Arlo what he wants for dinner, he sometimes ignores her and asks for his favorite thing: tickles.

“He’s acting like a child, he’s changing the topic,” she laughed. “That’s pretty life-changing just to have him recognize that his options aren’t static.”

Gillette, who is a behavior consultant at the treatment center, gained a greater understanding about the challenges of being non-verbal before Arlo was born, by participating in Let’s Take AACtion! initiative by Kaitlyn Smoke, a speech language pathologist at the center.

Smoke told her late sister Alyson, who was non-verbal and deaf and blind, used head switches to communicate yes and no.

In 2019, Kaitlyn Smoke spent a 24-hour period using an ACC device.

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“I wanted to know what that was like and promote awareness in our community that people can communicate in different ways and still communicate and be involved,” she said.

This was the start of her Let’s Take AACtion campaign now held annually in October to encourage people to use an AAC to communicate for up to 24 hours. It has also proven to be a good fundraiser bringing in over $9,000 for the AAC clinic, which goes to buying equipment and materials.

Gillette said with Arlo being non-verbal and relying on AAC devices, this campaign means a lot to her.

“Since my son is going through learning how to use a device to communicate, I just think it’s so cool to be able to bring awareness” she said.

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