One Year Later

One year ago, we took a leap of faith and reluctantly decided to try Spelling to Communicate with Nolan. Today, I can’t imagine where we’d be if we hadn’t. Since Nolan’s autism diagnosis ten years ago we have heard opinions from so many doctors, psychologists, therapists, and more. While they were well meaning and genuinely wanted to help us and Nolan, no one prepared us for the journey we’ve been on this past year. Knowledge is power; and that’s why i want to share what we’ve learned so far!

One of the first things we’ve realized is that listening doesn’t have a look.  Nolan has been learning things all along!  He listens to anything and everything around him and takes it all in. We have seen that he knows and understands so much more than we could have imagined. Just because he is squealing, jumping, and listening to music all at the same time, doesn’t mean he isn’t listening and understanding us too. While I'm reading, Nolan is spinning across the room, squealing, scripting from movies, and bouncing from one side of the room to the other. If you walked in at that moment, you might assume he wasn't listening to a single word. Even now I catch myself wondering how he could be taking it all in. Then he sits down at his letterboard and answers detailed questions about the lesson. Every. Single. Time.

Therapists and doctors have told us in the past to work on his counting, shapes, and recognizing animals. We were told that he didn’t know these things yet because he couldn’t consistently point to the right answer. Nolan has shown us that he knows all those things and more; and he has for a long time. Because of whole body apraxia, what he thinks isn't always the same as what his body does. In fact, what he thinks isn’t always what comes out of his mouth either. He will sometimes say, “banana . . bye bye banana . . popcorn.” He knows what he wants to say. And his brain knows which answer he wants to point to but it doesn’t always cooperate. Whole body apraxia was a completely new concept for us.Whole body apraxia was a completely new concept for us. It explains that knowing what you want to do and being able to make your body do it are not always the same thing. It requires a different way of thinking because it challenges what many of us assume about communication and intelligence. Once you begin to understand it, you start looking at behaviors through an entirely different lens.

We have also been told by others to use short and simple words with Nolan so that he can understand what we want him to do. Once our  mindset changed and we presumed competence in Nolan, we began to talk to him like the 12 year old kid he is. No baby talk. No short sentences. We include him in our conversations. We ask his opinions. We explain what's happening around him. We don’t talk about him like he isn’t in the room. Since doing this, the change in his behavior has been undeniable. He is calmer, more relaxed, and more engaging now than ever!

Spelling to Communicate hasn't fixed everything. Nolan still has autism. He still struggles every day with things most of us never think twice about. But now, we understand him better. We know there is so much more going on inside than we once realized. That hope changes everything. It may take years to get there, but if there's one thing this past year has taught us, it's that Nolan is capable of far more than we ever imagined.

I am not here to say that this applies to every person with autism. Each individual is different. I was skeptical to try Spelling to Communicate; even more hesitant when I heard about presuming competence and whole body apraxia. Nolan has crushed all of those doubts.  I'm grateful we were willing to question what we thought we knew; and I’m hoping others will too. 

If you're curious and want to learn more I'm always happy to share information. I'd encourage you to start with the book, Underestimated. Watch Spellers the documentary on Youtube.  Check out  Dana Johnson’s Youtube Channel. Read the words of nonspeaking spellers themselves. Their voices changed how we see our son - and have changed our lives.