Maggie King is a thrill seeker: At 25, she’s been scuba diving, ridden in a hot air balloon, tackled every ride at Disney World multiple times and even flown to Los Angeles to attend the live finale for the 21st season of the TV show Survivor. “She’s all in, all the time,” says her mom, Dana.
It’s an attitude that Dana and her husband Dennis believe their daughter developed soon after birth, when an episode of anoxia, or severe oxygen deprivation, left her with spastic quadriplegic cerebral palsy (CP) and other medical concerns. “At first, we were petrified,” says Dana, who was a social worker at Maggie’s birth hospital at the time. “We never expected to be on the other side of things. It was like being in a giant fog.” …
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.
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.
“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.