It has been a blink of an eye. Our participants have gone back home, and it is hard to describe how much I already miss these people. I am sad that more opportunities like ACES don’t exist in their daily lives (hooray, ACES West!). For all the pros and cons of social media, I am grateful that it will provide a way to keep in touch. Nothing takes the place of face to face communication, but social media does play a role in maintaining community. This role can be especially important for people with complex physical and communication needs.
I am swimming in feelings and trying not to rely too greatly on metaphor and simile to describe the meaning of ACES. Yes, we built a community. And we all learned from each other. Learning is never unidirectional, and you cannot be an effective clinician without being impacted by those with whom you work. And weather can’t stop us! What a rainy Philly summer it has been.
So, what have we learned? For one thing, problem solving is an evolving process. We can’t be too frustrated if a barrier doesn’t fall with the first attempt. Maintaining a relationship over time will make solutions possible.
Goal setting must be an individualized process and we should listen to the AAC user to see what they want to accomplish. And that goal may not fit into our typical data collection models, i.e., “8/10 opportunities over three consecutive data collection periods.”
Respect for multiple means of expression is vital, especially when someone does not have a robust communication system (yet! We’re working on it). A smile or a frown can tell us so much, and checking in can help us to make sure we are respecting that individual’s wishes.
Relationships matter. Having heard an empowerment speaker discuss dating, an ACES participant texted a friend back home and asked him out. And he said yes! Lunches were spent with her new friends. Food trucks and squad goals.
Multiple means of access matter. Over time, the consistent use of one joint to activate a switch can cause pain and skin breakdown. Don’t give up on looking at other access points and other switch types. And don’t be afraid to try a low tech solution. And, if that doesn’t work, we brainstorm and try something else.
It’s never too late to start. One individual loves his phone and will not carry an iPad. So we put an app on his Android phone and he used it with intent throughout. He made real gains, and his whole team was happy with the solution. They are learning about modeling.
You need to be able to talk about what you love. For one person, this means having a movie folder with all the Rocky films, for another, talking about Musikfest. For all, it means access to Core Vocabulary. Without access to generative language, are you saying what you want to say, or what some adult has decided you should want to say?
UDL matters for adults. All ACES participants were asked to complete a graduation project. When given choices as to the means of expression, some did choose PowerPoint. That is just fine. Others created animated shorts using apps, or music videos (Hali’s Kiki Challenge was fierce!) . One created a commercial for his business (Josh’s Creations). Now he will be able to use social media to grow as an entrepreneur.
Haey, Josh, Sabrina, Isaiah, Dan, Shaun, Eubie, Aaron, and Matt, I want to say thank you for your friendship and all your hard work. May the road before you be accessible, and may our paths cross again soon.
These photos were taken by many, but special thanks to Russ Goldstein.