Ava and her family: Communication is “Just what they do”

Each day gives four-year-old Ava Facchinelli plenty to talk about. The subject might be a field trip with her junior kindergarten class, the music she and her older sister Clara like, or a favorite book. Sometimes she simply wants to say she cannot wait until her dad comes home from work, or express her desire for something specific to eat (like ice cream) or ask to play with a certain toy.

avaclaraLike each of us, Ava has a unique appreciation for all that language lets her do—from making choices and requests to cheering or complaining. Though non-verbal, she is becoming more fluent in self-expression each day. Jennifer and Herman Facchinelli make sure their little girl is never without the Tobii Dynavox I-12 eye-tracking augmentative and alternative communication (AAC) device that Ava uses, her eyes leading the way as she chooses her words.

“Ava takes it everywhere,” Mrs. Facchinelli said. “Exposure is key.”

Mom, dad and Clara, 6, are always modeling use of the device so Ava, whose inability to speak results from her Rett syndrome, learns by their example. “The way I see it,” Mrs. Facchinelli wrote in a blog post, she’s not going to figure out how to use it if she doesn’t see others use it.”  As she later told us, you wouldn’t hand a child a pencil and expect them to write their name without first showing them how.

Those closest to Ava, including her maternal grandparents who live with her family, are forever embedding the technology in whatever happens to be happening in their life on a given day.

“She has this family that has rallied around her like you wouldn’t believe,” said Chicago-based educational specialist Susan Norwell, M.A., ATACP, who is well known for her work in the Rett community. “They’ve really embraced communication as just what they do.”

Rett syndrome is a neurodevelopmental disorder primarily affecting girls, compromising their ability to speak, walk or purposefully use their hands. The condition also compromises the autonomic nervous system in ways that may dysregulate breathing, heartbeat or digestive processes.

“The laundry list of symptoms can at times be overwhelming,” said Mrs. Facchinelli, “but we try to stay positive and celebrate Ava for the awesome person that she is.” She took a leave from her job as an elementary school music teacher to be with her daughters full-time during their formative years.

The Facchinellis have made purposeful communication a top priority for Ava since the day of her diagnosis at age two. Two weeks later, the family drove from their home in Ontario, Canada to a Rett conference in Washington, D.C. There, they met Ms. Norwell who, Jennifer Facchinelli said, “had faith and confidence” that Ava was bright and that others would see it, too. Shortly after, they went to Chicago to meet with her again and together explored ways to support Ava in reaching her potential. At the time, Ava had a Tobii Dynavox PCEye Mini for computer access through her eye movements that they packed up for the road trip. Seeing that she easily engaged in playing cause-and-effect games, listening to music and reading books through eye-gaze techniques, her adult helpers eagerly guided her adoption of technology as her voice.

Ms. Norwell saw as a guest in the Facchinelli home why Ava is so successful. Ava’s parents customized the I-12 from the beginning. Beyond the mechanics of AAC device use, their routine modeling and embedding put Ava where she needs to be in her language and literacy development. A tipping point occurred when Ava spontaneously chose phrases from her I-12 to comment on a story they were reading together. “When you stay at someone’s house, they can’t fake it,” Ms. Norwell said. “That doesn’t happen by accident. I can’t speak highly enough of what the family has done.”

Echoing the praise is Andrea Hatherell, the speech-language pathologist at Holland Bloorview Kids Rehabilitation Hospital in Toronto who sees Ava for therapy. Ava used Tobii Dynavox Sonoflex language software on her PCEye Go for briefly commenting during the activities she also used the device for. But she had more to say and soon started building two- and three-word phrases to share her thoughts. While handling the evaluation and paperwork for the acquisition of the I-12 device, Ms. Hatherell knew what Ava’s parents knew all along: that their youngest daughter, who already conveyed much through eye contact and facial expressions, could accomplish so much more through technology made specifically for communication.

“They’ve really embraced AAC as a language that they have to learn,” she said, recalling her delight

Ava continues to use the PCEye Go for educational and recreational software. She often uses the devices when they told her Ava ordered sweet potato fries at a restaurant using the I-12. “It’s nice to see it being used in the community that way.” Sometimes Ava uses both devices simultaneously, as in the video below where Clara and her are making music together. While Clara plays the piano, Ava has software for playing instruments of her choice and turns to her AAC device to talk about on the music.

The sisters love that they can enjoy (and respond to) each other’s words, their mother said.

While “truly grateful for the incredible technology” and that Ava started young, Mrs. Facchinelli says ongoing communication success will be up to Ava and the people around her. You sense her excitement about the vast stream of language that Ava has yet to encounter.  “We’re trying to immerse her in it. It’s not perfect, but she’s learning.”

“Can’t” and “won’t” are two words that rarely pop up in the process as they scout daily communication opportunities and gently insist that Ava turn to the technology to say why she’s laughing, what’s bothering her or what’s on her mind at the moment.

“She doesn’t always get her way,” Mrs. Facchinelli said, “but I want her to know that when she talks we’re listening.”

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