Month: December 2018

Friday morning I was home with both boys (my favorite!) and we were enjoying a lazy, slow pace of getting our morning started. I was still in my pajamas around 10 am when I heard the doorbell ring, which is pretty common lately given the amount of online shopping I’ve been doing. What was strange is the ring was followed by a hurried knock. Embarrassed that I hadn’t got dressed yet, I peeked through the peep hole and was overcome with delight! I could see what had arrived and why the delivery driver didn’t just ring the bell and leave the package on the porch like usual. It was Gage’s “talker”…a Tobii Dynanox I12 with an eye gaze tracker to help him communicate!!! The delivery required a signature, so I got over my embarrassment about my PJs and opened the door.

I wasn’t expecting to receive the shipment so quickly. I’d spoken with the company earlier in the week and they said shipping would take 3 to 5 business days. It came in 2! I was so excited I couldn’t wait to get it open and check it out. My enthusiasm must have been contagious, because as I cut through packing tape and opened boxes, Gage was squealing and Caleb kept saying “Gagey’s talker…. I can’t wait!!!” We face timed Evan to share the news.

About a year ago, we began the process of exploring AAC (augmentative and alternative communication) options for Gage. We’ve been working with the wonderful people at Missouri State University’s speech and occupational therapy programs. Over the course of the spring semester, we trialed a variety of devices with different access methods to see what might work best for Gage. Earlier this fall, we had an official assessment and made a decision on which device to get for our own. That was a tough process for several reasons, including the fact that I’m totally indecisive. But it’s also very hard to know what will work best for Gage long term and what will be most practical to use and implement into our daily lives. Factors like whether he should use eye gaze or a head mouse, the size and weight of the device, what vocabulary would work best and more all went into play. I’ve learned a lot in the past year, but at times it was completely overwhelming. I’m so grateful we were working with knowledgeable people who know a whole lot more than me. Even more so, that those people never stopped believing in Gage. On days that he wasn’t as successful with things we tried, they took the time to brainstorm solutions. They always rooted for him and were his biggest cheerleaders, and reminded me “he is soooo ready to communicate.” They gave him all the credit he deserves for how smart he is and how much he understands. I can’t fully express the sense of gratitude I have for the gentle nudges and immense support of the kind individuals we’ve worked with on our journey so far.

As I was opening everything and trying to read setup instructions, get the battery charged and assemble mounting systems, I quickly learned that all that would be easier to do without Caleb’s “help.” So I scooted everything into the office and did my best to contain my excitement until nap time so I could focus on the task at hand. While the boys were down, I registered software and started to dive in by creating some custom boards for Gage—topics related to his favorite things or normal routines like bubbles, books, play time and meals. As I worked, I was reminded this 4 pound, 12 inch piece of equipment is a powerful tool. I have a ton still to learn about all it can do, but can tell there is so much potential. I will try to take the lead from Gage as he learns and grows.

The learning curve for him will be very steep too. I know there will be points of frustrations along the way, and I try to curb my enthusiasm for any new piece of equipment knowing it won’t be the magic bullet to overcome whatever challenge of Gage’s that we’re trying to address. But I think what’s important is that we’re willing to try. That myself and others in Gage’s life will work with him and give him a chance—a chance to communicate even if it’s in a different way. And give him the extra time he needs without becoming impatient or wanting to give up. I also think it’s important to celebrate the small victories along the way, and track his progress, even if it’s not perfect. One of my favorite stories so far about his talker happened the first night we had it.

After nap time, we did our best to calibrate the device with Gage’s eye gaze. The way it works is that where his pupils look on the screen activates whatever word or picture he is looking at. We played around a bit with some different games and words, etc. As we were getting ready to sit down for dinner, I moved the talker to the side of his chair so Gage could scoot up to the table. I had opened the “meal time” board and was grabbing food and drinks to bring over to the table. Without any prompting at all, Gage looked at the screen and said “Let’s pray, let’s pray, let’s pray.” Evan and I just looked at each other and beamed. I thanked Gage for that reminder and the four of us joined hands and said a prayer together before we ate. Throughout the meal, Gage did great making choices between bites and drinks, more and all done. Evan commented how great he was doing, and I completely agreed.

Over the last few days, we’ve kept working and had varying levels of success. I learn a little more each time, and Caleb helped us discover some fun games I didn’t know were there! Like I said, I know there will be a huge learning curve for all of us and having this device won’t magically make it easy to understand everything Gage feels, wants or needs. But I truly believe that he’s got something to say, and I’m so excited for him to have the chance to express himself.