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Ava’s Story

Ava’s Story

Empower a voice

Meet Ava

Ava is a smart, funny, feisty seven-year-old who adores music, swimming and her friends. Diagnosed at age two with Rett syndrome, Ava can’t control her hands or use her voice, which made basic communication a challenge from the start. Her journey hasn’t always been easy but with persistence, strength and support, Ava has overcome many challenges by using assistive technology to communicate and control her surroundings with her eyes.

When I look at Ava’s progress, I know I owe it to her to ensure she reaches her full potential.

-Ava’s mother

Young girl with Rett syndrome using Tobii Dynavox AAC app and assistive technology to communicate with her mom

Life with assistive technology

Ava’s mom Jennifer discovered assistive technology and AAC while searching the internet for advice about Rett syndrome. Having learned new languages herself, she understood that learning AAC (augmentative and alternative communication) is like learning any language, where immersion and frequent practice are key to success. Ava’s parents want her to express herself freely, so they use Snap Core First, a symbol-based AAC software, to help her expand her language skills. The family uses several devices adapted to her needs. They first chose the I-Series+, an eye-gaze enabled speech generating device for home life but have switched to an I-13, one of the newer model I-Series, which among other benefits allows Ava to use the device outdoors in the sun. They also use the PCEye Mini, a lightweight eye tracker that attaches to her tablet, for school.

Young girl with Rett syndrome using Tobii Dynavox AAC app and assistive technology to communicate with her mom

Life with assistive technology

Ava’s mom Jennifer discovered assistive technology and AAC while searching the internet for advice about Rett syndrome. Having learned new languages herself, she understood that learning AAC (augmentative and alternative communication) is like learning any language, where immersion and frequent practice are key to success. Ava’s parents want her to express herself freely, so they use Snap Core First, a symbol-based AAC software, to help her expand her language skills. The family uses several devices adapted to her needs. They first chose the I-Series+, an eye-gaze enabled speech generating device, for home life and the PCEye Mini, a lightweight eye tracker that attaches to her tablet for school. They're now using an I-13, one of the newer model I-Series. It allows Ava to use the rear-facing text window for more natural face to face conversations and to use the device outdoors, even when it’s sunny.

The power of teams

Like all the most successful teams, Ava’s is a tight-knit family who communicates often. Her parents, Jennifer and Herman, as well as her beloved sister Clara, all regularly model proper use of her technology so that she can learn by example. Modeling shows Ava the best way to use her technology, while deepening her family's understanding of her way of communicating. They’ve all learned AAC and gently encourage Ava to use her technology to express why she’s laughing, what’s bothering her or what’s on her mind. This teaches her to manage her emotions and have a voice in her own life. The culture-loving family has succeeded at engaging Ava in painting, making music and even reading with her eyes. Above all, her family’s most impactful tool is believing in Ava’s ability and presuming she has the competence to achieve literacy.