I have been reading a few new blogs lately- ones that caught my eye in hopping about looking at other folks' blogs, or Facebook comments, or Twitter feeds. Without the massive mounds of time I would love to have, I am forced to be selective, so this is big news. Most of these new blogs have something in common with the experiences I'm having here- blogs with late-elementary kids, kids that seem to be at the same place Joey is in experiencing and understanding the world. The mix of eager emotion that rolls about my heart as I catch up on these new worlds, as well as keeping hold of the ones I already know and love, was something that seemed to be holding me to the ground as we take the latest hill of our roller-coaster.
I thought I was looking for some kind of understanding, some kind of familiarity, some kernel of how others are understanding their kids and perhaps hoping for a glimpse into what Joey is thinking and feeling. What I think I was really looking for was that "I'm not the only one here" that I hope my little blog lends to others. Standing on the edge of unknown territory, I so want to get a sense of what lies before my feet, and understand that others are at this same place.
Joey is in uncharted waters, and I don't want to fail him and have him drown... or not learn to swim.
And there are snatches of that out there. I'm not the only one with a 10-year-old who is still into preschooler characters, especially for comfort. We're not the only ones with ups and downs of echolalia, frustration, and discomfort. We're not the only ones walking that knife edge of being age-appropriate, yet letting Joey be himself. And Andy, for that matter.
But there is something I have not found- I know it is out there, but we aren't talking about it in ways that I can gain insight on- for helping Joey. We can't be the only ones.
Dealing with overwhelmingly intense emotion is difficult for most folks, but for Joey, who spends his life on the brink of an anxiety attack, the boiling-over can be explosive. Lately, Joey seems to have almost no defenses against intense emotion, and even immediate triggers can be difficult to discern. In November, we had the strange episode of the Not Dead Grandfather, where just imagining the loss of a grandfather- none of which he knows particularly well, and all of which I am happy to report are alive and well- totally overwhelmed him, to the point he even had his teachers upset. The pain he displayed was as if the event had occurred- it was so real to him, he had no defenses to cope with the emotion of it.
Last week, he told everybody he had to give a "last concert" of Signing Time songs because he was going to move to my hometown and go to a new school the next day- and no amount of reasoning would deflect him. Even confronted with the fact that he was not moving didn't help; he was in such a state that the principal called me in the middle of lecture to ask me what to do. (Why did he not call the school autism resource teacher? Because she is split with another school, and was not on campus). I finally struck on using the social skills language he has been practicing in his private OT to try to give him some words he understood to calm him and re-calibrate himself; and that seemed to work. He was at least able to go to class.
I could identify the script sources (Signing Time, plus Quack the Duck from Peep and the Big Wide World), but I could not for the life of me figure out what made him so unhappy and uncomfortable that he would invoke them.
A few days later, he said a friend on the bus had bitten him- certainly that would be an immediate trigger. But in investigating the matter, there is no support for it. The bus attendant and the driver have no clue what Joey is talking about, the friend he claims bit him sits far away from him on the bus and, though an unpredictable child, is not known to bite.
I honestly find myself at a total loss. Was he bitten or not? And if he wasn't, what triggered a two-hour meltdown of echolalia and imagined upset? Is he having trouble drawing lines between imagination and reality? How can I help bring down his anxiety level so that "imagined"* stress does not overwhelm him? Is it the imagined scenarios he is feeling the pain and upset about, or is he hiding other stress (just like, for example, when he pretending to be Buzz Lightyear instead of Joey)? Is it a whistle in the wind, like when he loses something and starts screaming that it is "on the roof"?
I just don't know. But we can't be alone in this. Please. Not that I would want other families having issues, but... please don't let us be alone.
*Although the scenarios he is describing in his speech are not real, the stress is.