Change is not a happy word around our house. It triggers bad reactions in my son. And I don’t mean “tantrums”. Tantrums are a normal part of childhood development and children grow out of them as they learn to speak and communicate. My son does not speak and communicate like other children. This is one part of his disability. It results in events that are sometimes called “meltdowns”.
No one likes to see their child cry. Like any kid, if my son is crying to get something (a toy or attention) or as manipulation (doesn’t want to do something), I recognize that and can deal with it. If he cries from a skinned knee, it’s an easy fix. In both those instances, I can see the cause. I can put a band-aid on it. And I know things will get better.
But, there is a different thing that happens with an autistic child that crying could never define. It does not happen with other kids. It’s not sobbing, pouting or a “tantrum.” This event is a manifestation of frustration and fear. He knows what he wants to say and cannot get the words out. He has a non-verbal scream for help, and panic because of a lack of communication that very young children grow out of quickly. It is a heartbreaking event, wearing and draining. In my son, these events are accompanied by desperate facial expressions manifesting his inability to tell me what is happening. It’s very much like my son is trapped inside himself, scared, and can’t get out the words to tell me why.
During these times, I often do not understand why it’s happening and I can’t stop it. I can’t see the boo-boo. I have to let it run its course. I try to hold him but sometimes, he pushes away. It’s a nightmare. You cannot look and see the bleeding. But his disability triggers the reaction. “Tantrum” carries with it a choice and the ability to use verbal communication in its place. My son has no choices. His meltdowns are a manifestation of a disability. My son is not “being a bad boy”.
When they occur, these events can last anywhere from 5 minutes to 2 hours for us. It happens anywhere and everywhere. When it is over, sometimes I can put the pieces together and figure out why. Sometimes, I can’t.
What I have learned is that change is a huge trigger. The change does not have to be a big one. Often, in fact, it’s something small. Usually, it’s a sensory issue. For us, it’s been an old toy he wants removed, the temperature of water, a sound, a light, a word, a phrase, an escalator, an elevator, the wrong pair of shoes, etc. I could go on.
Recently, there was change to my son’s schedule. Preschool was added back in after a hiatus for therapy. The therapy schedule itself changed but it was actually shortened. I was wondering if these could be triggers for events that crept back into our lives after several months of absence.
We fight these events with information. My son must know his schedule every day. He follows rigid routines. He asks daily, “We’re going..?” and waits for me to fill in the blank. The more detailed I am, the less the stress, and, most times, a decrease in events.
So, when his emotional behavior spiked recently, I wasn’t sure the cause. All of a sudden, he was approaching me with the question, “What does the dinosaur say?” From experience, I knew this was the “bait”. If I answered, “Roar,” he would then repeat the word “Roar!”screaming it at me while looking directly at me, the desperate look, the tears, tense body.
Knowing that I’m being notified we are on the precipice of a “meltdown”, I wonder why. Is there something I can do to stop it? “No,” I answered, “I’m not saying it.” Didn’t matter. Whatever triggered it had come on full force. He answered his own question and he was on his way…
These events can be accompanied by him giving me a head “hug” like a wrestling hold. He may wrap a leg around me or hold my face with his hands. The decibel-level of his little voice is astoundingly high as I wait it out.
During this one, he was repeating “Roar!!” at max volume, tears and snot running down his face. He became his own self-contained, snot-producing, decibel-breaking powerhouse. I held him. I gave him tissues. I gave him a tight hug.
When he was winding down, he said, “ Purple dinosaur”. He has no purple dinosaur nor has he ever shown an interest in one. He said, “I wanna build shapes. What shape is it?” an activity that he had ignored for months. These were clues. He made eye contact saying these things to me. When I looked back at him, he seemed so desperate. He was trying to tell me something but the words were his enemies.
I always fear there is something physically wrong during these times. But we make it through each one, tired and drained. I had no answers that night. Sometimes, these things end and I do not know if I will ever have the answer.
The next morning, while my son was still sleeping and I was doing chores, I recognized a pattern. Goading me into making a sound, “roar”, the color (purple), and the mention of shapes had all been brought up about a year ago when his nanny, who had watched him for a year and a half, abruptly left. Similarly, in the last week, one of his tutors had been removed from his case. This was done because therapists sometimes switch out to assure the child’s compliance with new people. Even though I knew about the tutor switch, no one told my son. He missed his last day with her because he was sick with a cold. There were no goodbyes.
Recognizing this was the cause, I was able to work with the therapists to help my son deal with the trigger, the change. It felt good to have that “Aha!” moment. I found the right sized band-aid. I was lucky this time. I want to stay lucky. I wish I could tell the world, “No, please, you keep the change.” I can’t. So, I told this story, instead.