Co-authored by Ann Bedard, EASTCONN and Meredith Daggett
Sydney Daggett’s early life started in Texas alongside her twin sister, Maddie. Early on, her family noticed Syd was globally delayed. All of the typical milestones that babies and toddlers experience came much later for Sydney.
Years of Birth-to-Three services, Occupational Therapy, Physical Therapy and Speech Therapy helped, but her family knew this would be a lifelong adventure. Syd’s mother, Meredith, knew she wanted to research every area to help Syd grow. She knew technology was improving and asked Syd’s school if she could try using an iPad to communicate. Syd used it minimally at first, but it proved to be a way to get her basic needs met.
After Syd’s father passed away unexpectedly when Syd was 7 years old, the family moved back to Connecticut. School staff and doctors diagnosed Syd as being on the Autism Spectrum among other diagnoses. They found out Syd has apraxia, which is a motor disorder that makes it hard to speak. This is the point where Syd’s mom knew they had to invest time and consistency in her talker (iPad with a speech-generating app). Fast forward to age 17 and Syd wears her talker as an extension of herself every day. It has become her communication with her world.
“She gets all her needs met, often asking for pizza and Chinese food daily! Drives us crazy and she’s lucky she’s cute! She can tell jokes and join conversations because of her talker,” Syd’s mom, Meredith shares. “We realize Syd is one of the lucky ones who had the opportunity to use a talker, have lots of school support and have the training that comes along with a talker. This didn’t just happen though, it took years of advocating for Syd, patience, and getting all the support she needs.”
Now her family’s mission is to give back. Syd’s Book Shack & Boutique is a non-profit business created from their experience. Currently located in Guilford, CT, (and soon to be moving to a larger location in Madison, CT) the store is open 6 days a week selling used and rare books, handcrafted jewelry, and unique gifts. They want to raise awareness and funds towards supplying talkers to those who do not have access.
“We want to use this nonprofit as a way to acquire talkers for those who do not have the resources Syd has,” her mom explains. “Our plan is considering other avenues to help and benefit our community kids too. We wish to be able to give young adults like Syd job training and social skills using the store as the vehicle. All of us want this to be a community hang out where all are welcome and greeted with a smile. We have met so many amazing people along the way and look forward to meeting so many more.” To reach out, please visit: www.Sydsbookshack.com, @sydsbookshack, facebook.com/SydsBookShack
The TouchChat app was recently trialed through EASTCONN’s AT Lending Library by Chris, a transition-age student with Autism Spectrum Disorder. Several AAC options were ruled-out prior to Chris’s device trials, after matching specific software design features to his abilities and needs. For example, Chris had demonstrated his ability to make requests to meet his needs and he had a large, receptive vocabulary. Yet, he was often impatient, so he benefited from automatic navigation and grammar guidance to produce full sentences quickly. Trials began with Chris observing the examiner using an 8-inch dynamic display, speech-generating device (SGD) with synthesized voice-output running research-based AAC software, called TouchChat. TouchChat is designed and manufactured by Saltillo for individuals who need efficient access to a robust vocabulary with a mix of single words, phrases and complete sentences. It is an app for iOS only, not Android devices. Chris’s support coach said he needed the smaller size of the 8-inch iPad, as compared to his current, 10-inch SGD. Chris enjoyed using the custom messages in the About Me page to express how he liked ketchup and other favorites. He quickly demonstrated the ability to imitate a model, and even learned to sequence three buttons independently to express, “I want to play music.” As a result of Chris successfully trialing several assistive technologies and devices, his school district could determine which device would best meet his needs.
In order to determine how we were going to implement the device at different opportunities throughout the student’s day, the educational team looked at what the student’s typical day looked like as well as her individualized educational programming. It was decided that we would start with the following commands; “Alexa, what’s the weather in (town).” This would allow the student to report the weather to the class during morning meeting. “Alexa, set a timer for (time)” and “Alexa stop the timer”—this would allow the student to set a timer while completing cooking tasks as well as while performing various other life skills activities where a time limit or a simple reminder is needed. “Alexa, play music by (preferred music artist)” would allow the student to engage with her peers socially and enjoy the leisure activity of listening to music. Finally, “Alexa, play calming sounds” to allow the student access to self-calming techniques rather than relying on an adult to anticipate and initiate the calming strategy. The student’s AAC tool (iPad mini with TouchChat HD-AAC app running MultiChat 15 Student vocabulary), which already contained a folder to access voice command, was customized to meet the communication needs.