Just because I parent a child with autism, does not mean I understand autism. I am constantly rewiring my own brain to understand what goes on with my child. Just when I think I get it, I realize how foolish I am. Things I don’t think my son will be able to handle, he breezes right through (the sound of the fire drill at school, for example). Things I never considered would be difficult (listening to a story), are. While there are some things I can predict his reaction to, I would say my understanding of him, at any given time, would be about 75 percent accurate. It’s that other 25 percent that gets to me.
Over this past week, we spent a lot of time together because of Spring Break. There were a lot of trips in the car. And I was forced to listen to the first 20 minutes of the movie, Cars 2 over and over. He talked in the back of the car as we drove. “There is the dump truck!” “There is Tokyo.” “There are the elevators.” “There is Finn McMissile.”
And after the 100th time of listening to him and hearing the movie, I finally realized something. He is watching “moving pictures”. He is not watching the movie. What’s second nature to me is foreign to him. He watches television and movies. He sees pictures and hears words. He repeats the words and identifies the objects. He doesn’t get the story.
The part of this that makes me super foolish is that I didn’t get his lack of understanding myself. ABA is doing a couple of programs to try and work on comprehension of what he sees or hears. I knew that. I watched the tutors work those programs. Often, he learns to memorize the answers and recite them back to get to the reward. Instead of understanding that this is difficult for him to grasp, I was, in my head, blaming ABA for not “getting through” to him. Yes, I can admit that but with the requisite degree of shame.
But now I’m comprehending that I looked right past something everyone else could see that I could not – the same way my son does not see the stories. I was in denial. I didn’t want to face that my son is not processing the words and pictures into concepts and stories. If I faced it, I got scared. Understanding stories and learning “morals” and “concepts” is the basic foundation upon which the whole structure of learning is based. Without it, how will my son be able to function in society when I’m gone?
The idea that he may need a caregiver for life is looking way too far over an edge I don’t want to look at. Who will take advantage of him? Will he even know if someone is taking advantage? Where will he end up? Who will give a care about him, isolated and alone somewhere in a group home with someone making minimum wage who hates his or her job to watch over him?
Am I being melodramatic at the plight of a five-year old who doesn’t understand a story? Maybe. Perhaps it will fall into place later. Or is that just more sugarcoated denial on my fear? Put it off. Leave it be. He’ll get it someday in his own time. You see, I don’t know that to be true. He has a brain dysfunction. I have no way of knowing how deeply it affects him or what he will get past.
He’s a beautiful boy. He loves, trusts, expresses empathy, fear, hurt, laughter, pain, just like anyone else. But his whole world is different. What would it be like to be five years old and never comprehend a story on television, or that was read to you? Never understand a single episode of Spongebob or Sesame Street that you ever watched? Yes, he’s taking things away from these programs. He finds his own enjoyment in television, in stories and movies. He memorizes things that are concrete, solid and unchanging: the alphabet, mathematical equations, character names, repetitive mantras that suit some purpose for him. Even being able to read and spell are because the sound of a word with letters can be memorized. Even a word’s meaning can be memorized. But put those words together as a story, and poof, it disappears in a cloud of non-comprehension. My son has joy, but the joy comes from flashes of video that capture his attention, certain words, colors, sounds. Not the moral of the story, the emotions it evokes. Those, I see now, are lost on him.
For me to comprehend his lack of comprehension is an irony not lost on me. It puts a whole new face on the echolalia, the repetitive watching of the same 20 minutes of Cars 2. All of a sudden, his lack of pretend play, his disinterest in listening to long stories, to having a book read, to watching a movie make a whole lot more sense. If he cannot absorb “stories”, why would he have an interest, much less, tell a story, orally or through pretend play?
He likes video games because he doesn’t need a story. He can just get points and electronic praise in the form of a higher level. He likes physical play on a play structure or slide -no story required. He can tell me what he had for snack because it is something he can memorize and remember as a fact. He cannot tell me what happened at school because that is a story.
In breaking through my own denial, I can get over it and try to help. To help him by trying out different methods of bolstering comprehension. To find a way. I will reach him and make a difference to what he can achieve. So, despite the fact that my kid can drive me crazy, even more so during a full Spring Break, this year’s Spring Break will be one I won’t forget.
During his time off school, I got a new education. One that hope will help both of us comprehend at a whole new level.