Sunday, July 26, 2015

Unexpected Storms and a Tic-ing Time Bomb

Stardate 2015.7 (or in the American calendar, that would be July, 2015). We're supposed to be having a drought. Not enough snow last winter, they say. And yet all through May, it never stopped raining. It seemed like every week there was another storm, and another, and don't get me wrong; I don't mind the rain at all. At least, not the stuff falling from the sky onto the grass outside.

But the storms of life are wearing us a little thin around our home these days.  Ben is feeling the brunt of them.  Here's how I know:

Every week, I take him to cello lessons.  He's been playing since last October, and though admittedly I'm a biased observer, I think he's pretty good. His teacher tells me he has a gift--an ear for the sound of the cello, and an unique ability to remember the music and reproduce it. Besides that, Ben will tell you he was born with "cello hands"--long, strong fingers perfectly constructed to press down the strings on the cello's fingerboard.  Look--I don't care if he has a gift or if he has natural "cello hands." I only care that he is holding a musical instrument and producing music, which affords him an opportunity to express emotion.  Anytime he gets that opportunity, we're going to take it.

So a few weeks ago, right in the middle of his lesson, doing nothing in particular except fiddling through the middle of a relatively benign new song, Ben suddenly slumped back in his chair, dropped his cello down against his chest with one hand, dangled his bow down to the floor with his other hand, and burst into tears.  I was sitting on the couch across from him, and at first I wasn't quite sure what was happening, so I said, "Ben, what's going on, Buddy?"  He just looked at me with the most perplexed expression on his face, while tears streamed down his cheeks. His teacher was as confused as I was.

I hurried to his side and lifted his cello off him, which his teacher immediately took from me in turn. I cradled Ben's head in my hands and just held him for a minute, and then the moment passed and he was fine again. He took his cello back, gave me a quick upward twist of his mouth that resembled something like a smile, and went right back to the song he had been learning.


Yesterday we went to a movie as a family, and the tics started up. This has been a recurrent theme for the past couple months...every time we take Ben to a movie, he gets into that theater, sits down, and begins this terrible, awful, really unsettling snorting sound--something between a sniff and a snore (more on the snore side).  When the theater is relatively empty, this is not much of a problem except that it drives the family crazy. But yesterday the theater was completely full--every last seat filled with moviegoers excited to watch the adventures of Ant Man unfold.  And it began.  One loud snort, then again, and again, and again. Soon the guy in front of us was turning around, glaring at me (as if I was supposed to control my child, and as irritated as I was at his intolerance, I couldn't blame him). I whispered to Ben to stop, and he let out this [not quiet] whimper, buried his head in his hands, and emitted several more snorts.

"Ben!" I whispered, even more urgently as the man ahead of us shot us yet another even less patient glare. This time Ben turned completely backwards in his seat and began crying, all the while snorting and sniffing. The impatient man and his wife rose and moved to unoccupied seats at the front of the theater. Another snort. A man two rows ahead of us gave me a look. I'm a little embarrassed that I tried to coax Ben through almost an hour of the movie, distracting him with whispered conversation, pulling him onto my lap...nothing worked and the snorting continued to escalate until Ben begged to leave, crying and pleading that he couldn't control what was happening. I told my husband that I was taking Ben home, scooped up our things and left.  I'm surprised we didn't receive some applause from our surrounding seatmates upon our departure.

As soon as we were in the lobby, the snorting stopped, as if it had never happened.  As we walked to the car, I asked Ben what was going on. He doesn't know. The theater is loud, and the screen is bright and overwhelming, I guess. It's too much stimulation.  But this tic is relatively recent and getting worse every time we go to the theater now.  Ben really wants to figure out a solution before Star Wars comes out in December. Until then, I think our movie days are over.

I guess some of this is just about all the change that Ben is experiencing. I haven't mentioned that he didn't get into American Heritage Academy, but we found a school about 20 minute away--a charter school with a Space Center (one of Ben's "things") that has a heavy emphasis on technology and fine arts. We feel like this is a great fit for Ben, and as it is a 7th - 12th grade school, Ben's brother Joey will also be attending.  So, new school, birthday (Ben turned 12 last week, which means some big changes for him within our religion as he became a "Deacon" and will take on some responsibilities within the church now), Ben's oldest brother away on a church mission, Ben's sister leaving for college in a few weeks...everything is unsettled.

It's storming, and all the change and uncertainty is frightening and confusing--hard to make sense of for most of us, really. But the chaos turns Ben into a tic-ing time bomb, I guess.  And I need to figure out how to diffuse him...and soon.


  1. I don't think it's a tic, I think he might be experiencing a partial seizure and also a photosensitive seizure. The relaxing of the body, the perplexed expression and then the crying sounds like a partial seizure where there are no convulsions and the persons eyes are open. The snorting in the theater, since it happens every time, sounds like a photosensitive seizure where the flashing lights cause the seizure(s) and then the snorting is trouble breathing. There are many different types of seizures because they occur in different parts of the brain. A seizure in the part of the brain controlling emotion could cause crying. For instance, one of the kids I work with has laughing seizures. We know he's having one when he laughs for about a minute or longer. That's the only symptom. Another student just stares and doesn't answer. It seems she is ignoring you and doing it "on purpose" but she's not. It's a type of seizure. I would at least get him tested and get seizures ruled out. (I rewrote this comment because it seemed the first one didn't post, so if you get two... that's why) I hope you figure out what's going on.

  2. Heidi, this is very interesting and troubling. I know that seizures are often co-morbid with autism. I had never considered this possibility. I guess we need to run this past his doctor and see what he thinks. Thank you so much!!

  3. One of my grand-daughters did the 'spacing out' seizure thing. Just zoned out. She grew out of it. She's currently 8. I love Ben. Anything I can do, I'm willing to do it.