If you don’t use it, you lose it. Areas in life, once strong, become weak.
It was a gradual weakening, one we didn’t notice until it was obvious. Mikelle’s voice was growing quieter. The digital voice we had become so accustomed to was increasing silent as she began to rely on all of her support team to communicate for her.
Mikelle was losing strength in her ability to use her iPad for communication.
I began to equate our support for Mikelle’s communication like going to the gym once and expecting to get in shape. As a CrossFit mom, I know it takes two to three times a week to become strong and fit. Like a lightning bolt, I realized Mikelle needs to get “Tech Fit” and so does her team, including me.
Like getting out of shape, we take fitness for granted. Mikelle had used augmentative and alternative communication (AAC) since she was eight. I kind of assumed she had it down. But, I was wrong. She needs to work out like the rest of us. Use it or lose it.
A new iPad and communication app brought it all home for us. We saw Mikelle was struggling more than ever to communicate with words. Her finger would anxiously hover over the screen, unease, and frustration apparent in her posture. With a great sigh, she would lift a finger to her forehead to indicate, “I’m thinking, I’m thinking.” It was becoming more evident and more apparent to me that we needed to change our strategy.
I spoke with Mikelle about meeting with her Assistive Technology Specialist, Gretchen Storm, just the two of us. We analyzed our current support strategy. Gretchen was coming once a week. Was it enough? Were we as her support team offering her opportunities to learn more? Did we really understand her communication needs and potential?
“I think part of the problem is we aren’t speaking Mikelle’s language,” I told her. We aren’t looking at this from her point of view. If we can make this app logical to her and learn it the way she will learn it then, and only then, we may see some progress. We developed a new strategy and plan.
Gathering at Mikelle’s kitchen table, each with an iPad in front of us loaded with Mikelle’s Touchchat app, we spoke Mikelle’s language. If we had something to say, we said it through her app. We spoke Mikelle’s language.
Gretchen laid out for them the basics of the app. and how we would communicate with each other outside of this meeting (text message) about the app. It was a very straightforward meeting, and it was really amazing to see how quickly the girls learned the new system and before twenty minutes had passed they were creating full conversations with each other only using the app.
For a moment there seemed to be a great sense of relief, we were all on the same page, and I laughed to see the looks of concentration on the girl’s faces as they went on to make jokes on the app.
I had a gut feeling that we’d done a very good thing that day. That Mikelle’s struggle to communicate had just become a touch easier than it had been. We’d armed our girls with the knowledge they needed to help lead Mikelle into something that had once been overwhelmingly difficult, a conversation. Taylor has added her own perspective on the process below.
“It’s been a struggle trying to get Mikelle to use her iPad to tell me what she wants. We’ve been working together for over five years, and we don’t need technology to understand each other. We have our own personal language that we have developed over the years. I understand Mikelle in a way that I can’t even describe. So it is especially difficult for me to persuade her to talk to me on this new app that makes no sense to her. She just gives me a look that says, ‘You know exactly what I am saying. I do not need this device because I know you understand me. This is silly.’
Still, we persist. I am as unfamiliar with this app as Mikelle is and so I can’t lead her to the buttons she needs. We haven’t had any practice on this, and she keeps trying to find the old app with the same old repetitive sayings.
After our tech team meeting, it was like a whole new world had been opened to us. Suddenly Mikelle wasn’t lost in the many options of the app because I was there guiding her along the way.
I was able to see the conversation visually as it played out in her app. The way “I” was followed by “want,” “need,” “have” etc. to the next word possibility. It was like hopscotch now, we jumped word to word instead of just standing confused at the beginning.
Now when we sit down at Pablo’s and meet up with Mikelle’s friends, she knows how to say things like “how are you?” as opposed to “I want to go purse shopping.” She is actively participating in a conversation and not just telling us what she wants and where she wants to go.
There is a back and forth here that did not exist before with the old app. It’s been an encouraging process. While I think we still have plenty of work and practice ahead of us, it is nice to see some real progress where before there was none. “
As a “tech team” we are determined to become TechFit and TechStrong and will continue our three times weekly tech workouts together, and that is the Brilliance of Community in Action. Shining Beautiful together.