Time, I think moves at a different pace for the neurotypical world around my son and for me as I try to stay with him in his world. If only the world took more time to listen, to understand and accept. To be patient. To wait for him.
I take him for a bath. I’m still explaining how to use the toilet before getting in the tub. First, he doesn’t need to use the toilet, then he changes his mind. He doesn’t get the concept of pee versus poop. He will say he has to do one and then, he’ll unload the other.
Flash cards have crossed my mind. I’ve talked about the color of pee/poop and what each is but that information just doesn’t help when it comes down to what he needs to do. I wonder how long this will continue, or whether he knows and simply cannot express as well as understand, and if he just wants me to shut up.
I wonder how long he will take a bath instead of a shower. (He’s too accident prone to use the shower. Plus, he freaks out with water on his head.) Not that there’s anything wrong with a bath, except the time it takes. Time and I aren’t friends. It always leaves too fast, pushing me into the future when I’m not ready. I don’t know what he understands of “time”, minutes, hours, weeks in a year. I know he knows the days of the week. Not sure about the rest.
He gets in the bath. He’s playing with sponges. I wash him. I wonder when will he be able to wash himself.
I wash his hair. He grimaces, whines, engages in heavy echolalia (“DRAW A CIRCLE”) to cope through shampooing and rinsing, trying to push me away. If water touches his face, he screams, “CLEAN IT!” I do, immediately, with a dry washcloth I have next to me at all times for such “emergencies”.
I try to make him laugh during shampoo. It works. Silently, in my mind, again, I wonder. Will he be able to this by himself someday? I dry his hair. He yells out, making the sound of an alarm to indicate his strong distaste. Then, as is standard routine, I give him a few minutes to play before I get him out.
The temperature of the water must be lukewarm. Anything close to warmer than luke warm is as though I have set him in a scalding pot on a stove. Despite his complete lack of sensitivity to smell (he could live next door to a dump and never smell a thing), he is highly sensitive to warm temperature whether it’s washing or eating. Even lukewarm french fries must be cooled with the air conditioner in the car before being consumable.
During the bath, I can’t think of stepping out to grab a towel. I cannot move five feet away. It’s too dangerous. He has no concept of “slippery”, “danger”, what to do or not to do, etc. So, I sit my ass down on the toilet lid and wait, multiple towels and supplies ready at all times.
During this bath, he did something new. He took those sponges and stacked them. Talking to himself, he said the sponges were lettuce, pickles, cheese, tomatoes and the bun. He made a sandwich, copying a cartoon he’d watched recently and turned it into pretend play. He kept calling the sponges “Spongebobs”. He talked about making a “Krabby Patty”.
I don’t usually see pretend play. A little step forward. Even in that, my heart was lined with the knowledge that this kind of play should have happened around the time he was 2 years old. He’s nearly 6. That makes it the oddest feeling.
Joy and sadness. Progress. Yet, catching up -still so far away. When you shake it up, and add fear, you will usually find a parent of an autistic child on the other end. And there I was.
Back in the bedroom, I struggle to get him to get dressed, to gently comb his hair without him grabbing my arm and pushing it away, screaming and yelling. He barely tolerates the clipping of finger and toenails, which do not get groomed until they are far too long. Feat accomplished.
We sit down for homework. Unlike other nights, he could not do it at all. “It” was this:
Time. How ironic. He had to circle whether it was morning, afternoon or evening. I realized that he has no concept of those three words. No understanding that breakfast, lunch and dinner occur during one of those times, or that a girl depicted eating toast, cereal and juice would be having “breakfast” and that “breakfast” would happen in the “morning.” He does not understand that there are foods associated with breakfast, lunch and dinner that would clue one in as to what time it is, and certainly not what those foods might be.
He could not guess the girl walking up the steps with a book (which he thought was a milk carton) was going to school, even after being told she had a book. When I asked where he goes every morning, he had no answer. He just looked at me blankly. I gave him hints and time to answer. I gave him the answer. Then, I asked the question again. The answer was lost.
I was scared and frustrated. I knew he was trying. And I looked at him, looking at me. And despite it all, we laughed. In that moment, there was no fear, or judgment, no frustration, or anger. Just laughter. I saw the glint in my son’s eyes, relaxation, and a desire to please me. And love. And I just loved back.
The rest will come.