Autism is many things to different people. It’s a lot like life, I think. In life, there are months that pass without anything of note happening. Months that pass pleasantly. And then there are months that are not so pleasant. Months that are tough. The pendulum swings, and hopefully you have the strength to recognize that it’s going to swing the other direction at some point.
I’ve gone radio silent for a bit because there have been some not so lovely things going on in the world of Dude over the past few months. They aren’t terrible, but they are a departure from our normal, so we’ve been adjusting the best we can.
As I’ve mentioned in previous posts, every once in a while, Dude has outbursts that result in elopement (i.e., he yelps in frustration and then runs as fast as he can with no regard for personal safety). These didn’t start until later in his teen years and happened super infrequently. Perhaps one every few months. The incidents have always been emotional for us because we want to know how to help him avoid getting to the point where he feels the need to bolt to release his frustration/adrenaline, but Dude’s limited expressive language prohibits him from telling us “I’m stressed out because…”, “I feel angry because…”, “I am sad because…”, etc. Within our family, we’ve developed a system of diligently watching his body language and always sticking right next to him in public spaces, so we can help deescalate him before something happens, or intervene immediately when something does.
Since the beginning of the year, these “incidents” have been happening on a regular basis. He had three on his birthday. Three. Luckily there was no running involved because he was inside, but he would have run had the opportunity presented itself.
In the past month, I have witnessed first hand two of the largest meltdowns he has ever had. I’ve watched him screech like he’s in physical pain. I’ve watched him shake like a leaf. I’ve watched him throw all his weight into breaking free of our parents’ grip. Our sweet, easy-going, quick to smile Dude seems to be in a sympathetic nervous system meltdown on a somewhat regular basis.
And the truth is, it hurts me. It hurts that I don’t know what to do to take away his frustration and, by extension, pain. It hurts that when I want to have a nice day with him but discover that it’s a high anxiety day for him, I’m on pins and needles the entire time we’re together, waiting for the meltdown that may or may not come. I would go to ridiculous lengths to ease his mind and body. If I could find a way to turn down the noise of the world around him that didn’t involve wearing noise cancelling headphones, I would do it. If I could hire the Mighty Sound of Maryland (his favorite band on the planet) to follow him around and play marching band music to his heart’s content, I would do it. If I could exclusively speak his special brand of gibberish that almost always makes him giggle, I would. (Side note: Is this what it feels like to be a mother? I feel like this is what it feels like to be a mother.)
So, that’s why I’ve been somewhat vague the past few months when friends ask me, “How’s Dude doing?” Depending on who is asking and how much time I have to chat, I may say, “He’s doing fine. Thanks for asking.” I may say, “We have some behavioral stuff we’re sorting out, but other than that, he’s good.” I may say, “Welllllll, how much time do you have?”
We have some behavioral and medical things we’re looking into to try to understand the root of the issue. We think he’s developed some increased sensory sensitivities, especially to sound, and he simply cannot cope as well as he used to. But we’re exploring multiple theories and aren’t ruling anything out.
It would be super great if all you wonderful people in Dude’s extended network could send positive vibes and prayers our way!
PS – He has still been doing/saying funny things, which I hope to resume posting! I just haven’t felt like writing lately..