Stories about: Augmentative communication

Living with Rett syndrome, living with hope

Ava, age 7, has Rett syndrome.For the first year of her life, Ava Gryniewicz seemed to be developing like any other happy baby. She had learned a few words, including “mama” and “dada,” and was picking up Cheerios with pincer fingers.

But by the time she was 14 months old, everything had changed. Ava started to lose these skills and wasn’t reaching other milestones. At the recommendation of her daycare center, she started early intervention.

“She wasn’t keeping up and her daycare providers were concerned that standard daycare might be too much for her,” says her mom, Joanne. That’s when Joanne and her husband Jack decided to have Ava evaluated.

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Elijah laughs: Augmentative communication device helps boy with cerebral palsy

augmentative communicationA computer voice utters a simple statement. Sometimes, it’s “My name is Elijah.” Other times, “My parents are Brian and Leah,” or “I feel happy.”

For the first time in his life, Elijah can tell his mother, ‘Yes, I want a hug.’

Another phrase — “I love the Patriots” — is often repeated.

And a brown-eyed, curly-haired kindergartener’s eyes light up. He smiles and laughs out loud.

It’s a whole new world for 5-year-old Elijah Gauthier, says his mom, Leah.

Leah and her husband Brian have taken Elijah, who has severe cerebral palsy and is non-verbal, to the Augmentative Communication Program at Boston Children’s Hospital at Waltham since he was a baby.

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Augmentative Communication and ALS: A conversation with John Costello

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John Costello, MA, is the director of Boston Children’s Hospital’s Augmentative Communication Program. Costello has been a speech-language pathologist specializing in the area of Augmentative and Alternative Communication at Boston Children’s Hospital for 30 years. He works with children who are non-speaking or whose speech is severely impaired.

For the past six years, Costello has also been working after hours and on weekends with adult patients with Amyotrophic Lateral Sclerosis (ALS). Now, thanks to the partnership of a private donor, Boston Children’s Hospital is transforming Costello’s efforts on behalf of the ALS community into a formal program — the Augmentative Communications Service for People with ALS at Boston Children’s Hospital.

Costello sits down with Thriving to discuss his work with children and how it expanded to giving people with ALS a voice.

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Augmentative communication gives a voice to people with ALS


For the past six years, John Costello, MA, director of the Boston Children’s Augmentative Communication Program, has been working at night and on weekends with adult patients with Amyotrophic Lateral Sclerosis (ALS), which is commonly known as Lou Gehrig’s disease.

Now thanks to the partnership of a private donor, Boston Children’s Hospital is transforming Costello’s efforts into a formal program: the Augmentative Communications Service for People with ALS at Boston Children’s Hospital.

Costello and his team examine each patient’s needs and skills and match those to the best tools and technology. Recommendations typically include low-tech solutions, which may be combined with a speech-generating device, computer software, an alternative keyboard or mouse. Message banking is one of the tools that Costello finds particularly powerful for patients with ALS.

With message banking, Costello records and stores patients’ meaningful messages and then links them to a technology that allows the patients to communicate in their own voice once they have lost the ability to speak.

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“We can’t change someone’s medical diagnosis,” says Costello. “But we can support people to maintain dignity, control and social connectedness, while expressing their true selves and remaining active members of the world around them.”

Learn more about the Boston Children’s Augmentative Communication Program.

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