March 1, 2019Just before her 2nd birthday, Lily was diagnosed with Rett Syndrome, a neurological disorder that involves early regression in communication and motor abilities. It is associated with severe motor planning difficulties and apraxia, which impacts speech production and other motor movements. Her mother, Malin, remembers Lily slowly losing her words, and how confusing and scary the diagnosis period was.
Thankfully, Lily’s parents were determined to find help for her. Goodwill of Orange County’s Assistive Technology Exchange Center (ATEC) connected with Lily and her family when she was evaluated for an Augmentative and Alternative Communication (AAC) device.
ATEC’s speech-language pathologist was able to find technology that fit Lily’s needs and guided the family through the process of obtaining Lily’s very own I-12, an eye-gaze speech generating device by TobiiDynavox, in which Lily uses her eyes to communicate.
Now, with the help of ATEC, her school team, and other professionals in the Rett community, Lily loves to use her own “talker” to communicate about her favorite activities like swimming, horseback riding, and school. She also loves to use her device to watch her favorite movie, Trolls, watch music videos, read books and play games with her peers. At school, she is in a fully-included classroom and her peers are constantly curious about the machine that allows her to communicate.
ATEC continues to provide consultation and technical support to Lily and her family. Most recently, her ATEC speech-language pathologist created low-tech AAC supports in order to provide Lily with a way to communicate when she is riding her favorite horse at the stable or when she is in the pool with her dad. Her parents say that AAC is the only way to truly “access” Lily. With her AAC device, Lily’s frustration and anxiety levels are lowered, because she is able to effectively communicate her wants and needs to others!
Lily, now 3 years old, is bright and cheery, and continues to make progress.