This week, we present Part 2 of Chris and Rachels’ discussion with Joanna Holmes (@mummyvsaac), the mother of Lucy, an AAC user with Emanuel Syndrome. Emanuel Syndrome is a chromosomal disorder that disrupts normal development and affects many parts of the body, including the speech mechanism. In Part 2, Chris, Rachel, and Joanna share ideas surrounding the Open AAC movement (openaac.org), including making symbols that are free for everyone to use and allowing “open exports” of vocabulary sets between different AAC software applications.

Before the interview, Chris and Rachel discuss Chris’s frustration with some presenters doing things in a way that are not very accessible to people with special needs. He wants to connect with these presenters to share strategies for making their presentations better, but he is afraid that doing so would make him “that guy” who seems like he is overly critical.

🔑 The words Joanna’s daughter Lucy knows best are the ones that have been modeled for her and repeated many times over the years. Many of these are words she started out with on her earliest layouts. Even if Joanna isn’t sure if her daughter will use a word sometime soon, it’s important we continue to repeatedly expose AAC users to a variety of vocabulary words. 

🔑 Sometimes, people in society will look at tools like AAC as a magical way to make someone more “normal.” Instead of looking at AAC as a way to make AAC users more like a speaking person, we should look at AAC as a way for people with complex communication needs to be themselves and speak their truth in their own way, even if it requires us to be patient and supportive of their communication attempts.

🔑 One thing that would be nice for AAC systems would be the opportunity to take a vocabulary set that you are using on one device and move it to a new one. This would allow AAC users more freedom to update their systems while not interfering with the symbols and motor plan they already have. Now, if you want to upgrade your system, you are often forced to learn an entirely new symbol set, which can be a big factor in choosing whether or not to upgrade.

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Links:

Mummy vs AAC Blog: mummyvsaac.blog  

Hannah Foley, Sarah Gregory, & Joanna Holmes: Home Grown- Planting Seed for AAC Growth