Giving youth with Down syndrome a voice in Charlotte, North Carolina
During a recent group program at GiGi’s Playhouse, a Down syndrome achievement center in Charlotte, North Carolina, eight-year-old Charlie was invited to act out animal flash cards through vocal sounds and words. The only problem: Charlie is non-verbal.
Not long ago, Charlie would have silently watched the other children or left the group altogether. On this day, however, he marched over to the program lead reading to him from a flash card, lifted the tablet hanging around his neck and opened a specialized software application. As he tapped a couple of icons, his tablet emitted a barking sound. Another player yelled out, “Dog!”. Charlie’s face lit up as the kids cheered. On his next turn, Charlie saw the flash card before it was read to him and without hesitation, exclaimed, "Bee!"
The moment marked a powerful shift for Charlie, and other non-verbal children. Here he was fully taking part in an activity with verbal peers, an essential building block for social development. Cooperative play helps children learn a variety of important interactive and cognitive skills such as problem-solving.
Similar wins celebrated by other families are the culmination of an idea seeded during the COVID-19 pandemic and now being realized thanks to a $10,000 grant from the TELUS North Carolina Community Board’s inaugural round of funding: the launch of the I Have a Voice speech language program.
The TELUS North Carolina Community Board funds local grassroots charities with programs for vulnerable youth related to health, education, environment and technology, such as this one, that help people like Charlie and his family thrive.
Benefits of assistive technology
It’s become evident that the pandemic had significantly detrimental effects on children’s overall well-being. And that’s especially true for those with Down syndrome and other developmental disabilities, who already faced unique challenges and needed in-person support.
“When families came back, there were new issues that we had never encountered before,” says Christy Allen, Charlie’s mom and the co-founder and executive director of GiGi’s Playhouse Charlotte, which is part of a network of centers that offer free educational, therapeutic, and career development programs for people with Down syndrome of all ages, their families, and their communities.
“The disruption of school and essential developmental therapies, combined with social isolation, set some of the children back in a big way,” she adds. “Even some who were verbal regressed, and we noticed negative behaviours emerge in those who are teenagers now, dealing with difficult emotions they can’t express.”
Charlie, however, made enormous progress during the pandemic because he was introduced to the Augmentative and Alternative Communication (AAC) device that he now uses in group activities at the center.
Charlie with his parents John and Christy.
A valuable tool in speech therapy, assistive technology speaks aloud for the verbally impaired as they select picture and text symbols, enabling them to interact with others and self-advocate. It’s a marked departure from the picture cards pinned on a velcro board that he was using before.
“It’s given him a voice,” says John Allen, Charlie’s father and a longtime TELUS Agriculture & Consumer Goods Engineering team member. “He’s learning basic literacy skills, and we can quickly add new words and numbers to his vocabulary through the software. Not only that, but he can express himself without having to grab my attention and physically pull me to what he wants.” Frustrated in the past when he couldn’t communicate his needs or wishes, Charlie now beams with pride.
Amplifying the outcome
Children take part in a group program at GiGi’s Playhouse Charlotte.
Last fall, GiGi’s Playhouse didn’t yet offer a speech program, but it was on the organization’s wish list. Seeing how much the device had helped her son, Christy immediately knew that technology was the missing link to boost such a program’s transformative power in the post-pandemic context. After hearing about the launch of the TELUS North Carolina Community Board, she applied for a grant and received the funding to purchase 10 tablets and the AAC software. This allowed the center to run a pilot program in the spring where families received loaner devices and attended weekly therapeutic sessions at GiGi’s Playhouse with licensed speech language pathologists.
The early results were even better than predicted. Parents of a non-verbal participant reported that their daughter retrieved her device one night, without being asked, to let them know that she wasn’t feeling well. “This is huge,” Christy explains. “I can't tell you how many families, ours included, struggle with not knowing when something is physically bothering their child due to the communication barrier. The fact that Emily has so quickly adopted her AAC device shows how valuable it is to her.”
The program has only scratched the surface of the participants’ potential. To deepen its effects, the center will be offering 12-week sessions starting this fall. “The funding provided by the TELUS North Carolina Community Board clearly enables organizations like GiGi's Playhouse to tangibly help change the lives of young people, and to build more inclusive and compassionate communities in our state,” says its Chair, Ebony Thomas. “We will be supporting many more impactful programs over the next four years.”
The TELUS North Carolina Community Board is currently accepting requests for the next round of funding until September 15. Organizations interested in being considered for a grant can find more information and submit their application at https://www.telus.com/agcg/giving-back/north-carolina.
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