I basically taught Everett to talk by reading to him. After his diagnosis, we read a stack of at least 20 books a couple of times a day. Everett memorized the language from the books we read over and over again. As we read the books and I knew he would know what the next word would be, I would stop reading right before the end of a sentence and wouldn’t move forward until he said the next word. We did this over and over and I would stop reading and make him say the next sentence, phrase, or word until he had the entire book memorized and he could sit down and “read” it by himself. His memory is fantastic. And the majority of his language is phrases and words he has memorized from books, videos, or things we say. He has figured out where they need to be inserted into conversation to be able to communicate. When we were first diagnosed, everything I read said that he would stop developing language after the age of 7. I felt like I had the loudest clock ticking next to me. I had a finite amount of time to reach the goal, but that ended up being so far from the truth. Everett still gains new language and functionality of language every day. He really is hilarious and loves to make jokes. He loves praise and positive feedback. As I’ve talked about in previous posts, he mirrors whatever energy you bring to him. One of the main aspects of Behavioral Therapy is positive reinforcement to behaviors that need to be repeated and ignoring behaviors that need to go away (or in technical terms “extinction”). A lot of Everett’s language includes “great job”, “high five”, “you did so good”, “fantastic”, etc because he hears it all the time. And if we are not quick enough on the praise, Everett is not scared to throw his elbow out patting himself on the back. Right now, we hear him say to himself “great job staying calm” quite a bit, which immediately lets us know that whatever just happened was not easy for him but he consciously chose to breathe through and make good behavior decisions. One of the funniest things he does lately is when you ask him a question and his answer is no, he gives a very dramatic answer of “NEVER”. Picture Mel Gibson in Braveheart rallying the troops saying, “They’ll NEVER take our freedom”.

His biggest struggle with language is answering questions. Questions that begin with what, when, where, who, and how are hard for him to process. Our brains are so amazing. A neurotypical person processes language in such a subconscious way that we do not stop and think about what is even being asked, we automatically understand and can answer. Everett is not able to do that. His brain is fantastic at so many things, but he is not able to easily process questions other people ask him. If he does not accurately answer a question or is confused, adding more words and asking more questions does not help. And if I persist on getting words that I need from him, I am very often met with a talk to the hand motion and a loud “STOP”. Most parents would be offended and upset by this response from their child, but I truly appreciate him letting me know that it is too much. The fact that he can even do that when I have overloaded him with too many words is a HUGE gift.

Special Olympics T-Shirt from last year

I have a habit of interjecting into conversation that people start with him. I will repeat their question in a way that I know he has a greater chance of answering. It is so subconscious that I had no idea that I even did it. It was brought to my attention when we were in the intake appointment right after Brett’s death. The psychologist asked Everett a question that he didn’t respond to. I immediately asked Everett the question she did and he responded. She then looked at me and asked “Has he always only responded to you or has it recently gotten worse?” The question completely threw me off guard. Clay responded that it had recently gotten worse. I literally looked at him and asked, “Has it really?” Everett and I are such a team that I don’t even realize how much we are tied to each other. Everett is always watching me (and everyone else around him) all the time. He picks up on small nuances and repeats them. He mimics sounds, words, behaviors, etc from everyone around him. He is watching not only to learn but also keeping tabs on other people’s temperament. By his mannerisms and actions, you wouldn’t think that he is paying attention to anything. 90% of the time, I can immediately calm him and cheer him up just by shifting my voice and mannerisms to calm and happy. I can’t be calm 100% of the time. I don’t yell and I’m not easily frustrated. But when I’m working on something, trying to figure something out, or talking or telling a story that has some depth; I can get more serious. Everett has a new way of pointing out when my intensity is too high. He is so smart and is now using the tactics I use on him daily, but he has turned it around on me. On multiple occasions in the last few months, he looks at me when I am in the middle of something and says “mommy, mommy”. I respond with “yes, Everett” and he points at me with a demand of “Mommy smile!” I can’t help but smile and lighten my concentration and intensity. Of course, there is more of a lesson in this than meets the eye. I am Everett’s compass and he needs me to be steadfast and directional for him in so many ways. I can tell by a sigh, turn of his head, or a small gesture exactly what is going on with him. My connection with him is the same today as when he was an infant. His inability to communicate effectively has enabled the depth of our silent communication to live on. What I never really grasped is he is just as connected to me in terms of gesture and nonverbal communication as I am to him. We share joy, frustration, and pain without saying a word

I love language, but am also frustrated by it every day. I have so much more empathy now for people who live in a place where they must speak a language that is not their first language. People have a tendency to speak louder to Everett when they talk to him (I am guilty of this at times as well). We speak slower and louder to try and get our point across when previously it was not understood. I love this scene from Love Actually that shows the barrier language can cause but illustrates that in the end it can’t stop connection.

I notice these things now because our first reaction is to characterize anyone that can’t interact with us on our level as a burden to us. As if people coming into our space have a responsibility to do so within our comfort range. I see it all the time with Everett, other people with disabilities, and people whose first language isn’t English. Everett does not automatically put off a vibe of being disabled in terms of communication. For example, he gets on a bouncy house and the person monitoring will try to talk to him, and he does not respond which then comes off as he is ignoring. Everett has at that point non-verbally communicated that he is blatantly ignoring the authority figure which comes off as disrespectful. You can see the person get frustrated and get louder and more forceful. This is when I usually step in and explain that he has autism and that he doesn’t understand. This situation doesn’t offend me and usually it is only uncomfortable because the person who didn’t understand Everett’s autism feels ashamed. I am torn with giving everyone that Everett interacts with a heads up about his autism, but I also don’t want to helicopter him more than necessary. And our ultimate goal is for him to live as independently as an adult as possible. If I walk around as the peanut gallery constantly being the asterisk of autism, I’m not sure that I am doing him any favors.

I was looking up the definition of language and this is what came up.

The word conventional comes up and I can’t help but immediately think of a concept that Everett consistently bucks which is conventional norms. Our “norms” are anything but normal for him.

When googling the definition of language something that caught my eye was the synonym for language which was jargon. 

Jargon is defined as special words or expressions that are used by a particular profession or group and are difficult for others to understand. Everett’s life is full of our jargon. Words and expressions that are difficult for him to understand. His personality is hot or cold, which I actually appreciate because you don’t have to guess his mood. But the large majority of the time, he is happy, cracking jokes, wanting tickles, and trying to throw our jargon back at us to connect on the deepest level. He seeks love, fun, and wants to belong to our lives. Loving Everett as deeply as I do and watching him not fit into “norm” box changes not only how I look at him, but also every human on this Earth. After having to regularly witness strangers cringe in fear or physically communicate discomfort over a noise or gesture Everett has made while stimming in public, I can’t help but change my view on how naturally cruel our society’s reaction to difference can be. We are called to love our neighbor and I urge everyone who is reading this to dig into the jargon and fences you may be subconsciously (or consciously) putting up that keeps you from truly connecting to neighbors inside of your life and community. Everett’s greatest barrier to connection is his inability to navigate our language, but he has busted through so many of those fences that I didn’t even know existed. He has taught me that we are all capable of connection in our own way. And truthfully at the end of the day, I want to feel as if I’ve been inclusive to anyone that needs connection (which is every human you come into contact with). When you connect with someone that you don’t understand, your heart can’t help but grow. And just in case you were wondering, you can always sit with us.

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