I think there’s a misconception that parents of non-verbal children know exactly what their kid wants at all times. Someone sees my boy walking sideways and trying to peer at something in the distance and they’ll ask me what he sees.
In that moment, I have no idea. I can offer them ideas based on how I know him to be. Maybe it’s the glare off of a window in the distance or the way the sun is hitting the ground. Ultimately, my boy does what he does when he does it. Sometimes I get it and sometimes I don’t.
That sentence would have crushed me to predict ten years ago, but it’s not as awful as the words might imply. It’s a part of our life. It’s as “normal” to us as it is for someone else’s kid to talk endlessly about baseball or sit upside down in a tree and read a book (I have no idea what your kid does). It’s our normal because that’s all we know.
Don’t get me wrong, I understand a great deal of what he might be thinking or wanting. He has movements that communicate those things to me. A tap of the mouth means food. Tips of his fingers against his palm means iPad. A wagging hand means “no”. Those are all things that we have locked down through motions. Simple and effective, they help me understand.
His device helps me too. It’s pretty easy to know that he wants orange juice when a voice that sounds like Rosie from the Jetsons shouts, “I – Want – Orange Juice!” The AAC has been a lifesaver in so many ways. However, his inability to use it to communicate his deeper emotions, if he understands them, makes it more of a device for requesting his wants.
Then there is intuition. While many parents of children like my son will say something to the effect of, “He’s a twelve-year-old, but he’s mentally a two-year-old”, I don’t. I don’t refrain from that because it’s necessarily insulting to him, but because it isn’t always accurate. He might have juvenile tendencies and unreached life-skill knowledge. He isn’t, however, a two-year-old in every sense of the word.
Now that we’ve gotten that out of the way, in this case, it’s the best way to explain the third part of my understanding to him. Like a father to any child, prior to language, there is a level of parental intuition that comes into play. I get what he wants. I vibe it. I feel it. I sense it in my soul. Sometimes I am wrong, but more often I am right.
All that being said, there are still things that can’t be ascertained from those methods. There are some things that we can watch and try to figure out but are just out of reach.
For a solid six months last year, Lucas would fall to the ground in a fit when I picked him up from school. It was mortifying. It started out of nowhere and got progressively worse until it suddenly stopped. I never knew why but finally surmised that he liked to sleep on the school bus, which he only takes on the days he goes to his mother’s house. Coupled with the fact that he immediately – like within one minute – falls asleep driving home, I was convinced it.
Am I right? No idea. It’s an educated guess, but a guess nonetheless.
The same can be said with his random cries when we turn into a parking lot from the main road. Is it the road? Is it the view? Does he not like the feeling he gets when the car turns a particular way? I take mental notes and try to avoid them in the future. Still, I’m mostly flying blind.
Autism is easily the most amazing thing I have ever encountered in my life. I want to see the world he sees and understand the things that make him who he is.
It all started when he was little. The day that I sat down by his side in the living room and joined him in slowly pulling his toy car on a string out from under the chair and back while looking at it in the mirror was the day everything changed. It’s a moment in my life I will never forget and the reaction he had to someone entering his world was one that is forever etched in my mind.
I want that reaction every day. I want Lucas to know that I might not fully understand his world, just as he doesn’t fully understand mine. I don’t have to and neither does he. I will, however, make every attempt to. That’s what’s important. It may be his world, but I never want him to feel like he’s alone in it.
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