As 2017 draws to a close, it is hard to imagine that Joey has only had access to his eye gaze AAC device for a year. A year ago, we were so excited to get started with Joey’s eye gaze system, but also unsure of what it would mean, or even how to use it. Since the eye gaze technology itself is fairly new, we were all learning how to use it right along with Joey.
In the beginning, Joey only had access to a few limited words. More, Play, Read, Stop, Go, along with some others pertaining to his environment. We couldn’t just put Joey in front of the device and ask him to start talking to us. We had to teach him that this strange screen was actually a way to communicate with us, and that using it would open up his world. There were times when he wasn’t sold on that idea, times when he was confused about why we would make him use it, and times when he was just tired of it. But we kept going and so did he.
Now, Joey has moved past just the simple words of more, play, read and stop. He has pronouns and prepositions, favorite activities, animals, and adjectives like fast, big and little. He’s moved on from just having one screen containing all of his words, but having a series of screens. Originally, if Joey wanted to say more, he hit the more icon on the screen. Now, if Joey wants to say more, he hits a button on the screen that takes him to another screen where he can then click on the word more. Some words that Joey wants to say take even more clicks, but that has not stopped him at all.
Over the year Joey has used his words to tease us, tell us jokes, let us know about anything flying above the house, answer questions in a story, and tell us how he feels. It hasn’t always been easy, and sometimes the progress feels slow and stiff. But if we stand back and look at the full year, we start to realize that he has made unbelievable growth. It’s hard to believe that a year ago Joey was just beginning to access his words.
Our understanding of Joey as a person has grown in this past year as we’ve gotten to watch him expand his vocabulary. We get to know that he notices things like an airplane or a helicopter. We’ve learned that he is highly aware of his environment, and is always ready to tell us what is around us. We know he can tell you how a character in a story is feeling, or what is going to happen next. And best yet, we hear what he thinks is funny.
Me: What color are Pete’s shoes?
Joey: Purple, Yes. *Cracks up laughing*
What’s even more exciting, is how Joey himself seems to have changed in the past year. It’s hard to remember what he was like before, but his only way to talk to us was with crying or laughing to say no or yes. Giving him access to words and language on his screen seemed to change how he understood he could interact with his environment. He started using gestures to tell us what he wanted, and would even start to push my hands to get something he wanted. He seemed to come into himself, and understand that he had power to interact in his environment in more ways that simply crying or laughing.
While it is exciting to think about how much growth Joey has shown over the past year, it’s also frustrating. We now know more than ever that there is a very active, bright, and engaging boy trapped inside a body that isn’t cooperating with his mind. For Joey’s sake, I want the progress to be faster. I want longer sentences, more words, more excitement. I want to know Joey better than I do now, and I want Joey to fully understand that he can share the thoughts inside his head with us.
There is so much I want for Joey, and I get impatient waiting for it to happen. Sometimes it’s hard to step back and realize exactly how far we’ve come in a year. We need to celebrate all of his growth to fully give credit to the amazing kid in front of us. And then put our heads down and plan how we’ll achieve the progress we’ll make in 2018.