McKenzie is 15 years old and has Rett syndrome (RTT). Her mother and father describe her as brave, compassionate, and a fierce advocate for herself and others with disabilities. McKenzie was in kindergarten when she was officially diagnosed with RTT. Her doctors told her parents that she may lose the ability to walk and that her speech would be limited due to apraxia. McKenzie and her family had a different idea. They began searching for therapies and interventions, and found speech therapy services.
“We decided we were not going to let Rett syndrome define us but that we were going to define it,” said McKenzie’s mother.
When she first start attending speech therapy, McKenzie and her family learned about the possibilities of augmentative and alternative communication (AAC) through their speech language pathologist. McKenzie’s mother explained that she “started from the bottom” with a simple picture communication book so she could learn to communicate with pictures. McKenzie’s mother says that her challenging behavior immediately started to decrease because McKenzie was learning to communicate her needs with others.
Through many more years of speech therapy, McKenzie moved from simple picture communication books to an iPad with a communication app, and all the way to high-tech dedicated communication device. Somewhere along the way, McKenzie and her family discovered Nashville’s Technology Access Center (TAC), a non-profit organization that aims to provide services for Tennesseans with disabilities. Through TAC, McKenzie has been able to try out different forms of AAC and find what really works for her. Though McKenzie’s communication continued to flourish with the right tools, her mother describes that it’s been a constant battle to ensure McKenzie gets the tools and supports she needs.
One of the hurdles McKenzie’s mother described is getting others to understand that these devices and picture communication books are McKenzie’s voice. She describes an incident on the school bus where McKenzie tried to communicate that she was thirsty and no one would listen. As McKenzie arrived at school very upset, she used her communication device to tell her teachers that she was angry because she wanted to tell someone on the bus that she was thirsty and no one would listen. This incident inspired McKenzie’s mother to educate the bus drivers and monitors and to write a letter to Congress detailing the importance and significance of AAC in McKenzie’s life.
AAC has helped McKenzie become a key figure in her high school. She is a cheerleader, sophomore SGA Vice President, honor student, and a role model to all. McKenzie’s family noted the importance of advocating for her and working to constantly adapt her communication toolkit as crucial to her success. As McKenzie’s mother said, “Everyone deserves to have a voice.”