The first half of 2012 was very trying for Ben from a gastrointestinal perspective. I’ll will try not to be too explicit here or revel in the scatological details, just suffice to say that from somewhere in mid-2011 up until last May my son had an ongoing toileting issue. It was extremely unpleasant for everyone involved, and was a major regression from previous behavior. It hand taken us up until 2006, when Ben was thirteen years old, to finally get him out of diapers. Then after half a decade of general peace and happiness in the bathroom arena all of a sudden Ben seemed to be making a strong and concerted argument for going back to diapers. This was not something we even wanted to begin to consider.
The trouble with things like this is, because Ben is lacking in any real expressive language he could not tell us what was going on. One of the things we really struggle with is correctly differentiating between autistic behaviors, normal “acting out” behaviors, and actual medical issues. This particular issue seemed like a behavioral problem – although we had finally gotten him away from diapers, years later he still seems to crave the sensation of wearing pull-ups and he will still often drag us over to the baby supply aisle and try to talk us into buying a big box of Pampers. Ben does see an autism specialist every few months, as well as a GI doc due to some other ongoing medical issues, and neither of them saw anything physically wrong with Ben during his checkups in late 2011 and early 2012, so for the most part we were dealing with this problem as a behavioral issue, something Ben was doing in an attempt to get us to let him go back to diapers.
Then last May he began abruptly wetting himself at school. This is something that he had not done in years, and according to the teachers who saw him when it happened he seemed genuinely surprised every single time. With that new symptom we pulled him out of school and took him to his primary doctor to have another look. It took about thirty seconds for the doctor to realize that Ben was completely blocked up, that his bowels were extremely full and dense. We had an x-ray done to see if the blockage was natural or if Ben had eaten a bunch of paper and gotten himself blocked up (he does have a past history of pica), and that test showed that there did not appear to be any foreign material obstructing the bowel. The general consensus was that he was blocked up by a solid mass, and that mass was pressing on the nerve bundle that led to the bladder and made it so that Ben could literally not tell when he needed to urinate. The soiling issues were caused by the softer material flowing around the solid mass, and again Ben could simply not tell when he needed to go. So basically for months on end Ben had a horribly embarrassing GI problem that he could not explain to us, and so he suffered with the indignity until it got so bad that it could finally be properly identified.
I tell you all of that so that I can tell you about when we went to see the GI doc in the midst of trying to figure out what was going on. We took Ben to Dr. Bornstein's office, and while he was there he noticed that there was a room that had a shelf with lots of Disney videotapes on it. Not the DVD’s, but the older classic white clamshell VHS tapes. Ben wanted desperately to get into that room, he was absolutely manic about it. We didn’t want there to be a big scene with him trying to steal the doctor’s video tapes, so we kept him away from that room and tried unsuccessfully to talk him down. The good news is that by the end of that appointment we had our plan for how to relieve Ben’s acute medical issue (I will spare you the details – you’re welcome). The bad news is that Ben got himself stuck in a kind of mental loop about one particular videotape that he saw in that room.
Within a few days of that appointment we had resolved the blockage, and for the most part Ben’s soiling issues stopped. It took a little bit of time for his body to start responding to the signals properly again, apparently the nerves get kinda scrambled when things are pushing on them like that, but overall the major issues were resolved. The past month has been absolutely joyful in its complete lack of having to deal with the side effects of those GI issues. Yay doctors!
Unfortunately, Ben remained stuck in that feedback loop. For the past five months, literally every few minutes he would ask for “Bornstein, Alice, tapes…!” When I say literally, I don’t mean figuratively. I mean that relentlessly, all day long, every few minutes, he would ask to go back to Dr. Bornstein's office so that he could see the Alice in Wonderland tape that he spied. No matter the response given to him, he would not (or could not) let it go. It was like metaphorical water boarding, the constant refrain of “Bornstein, Alice, tapes…!” over and over again. I cannot even begin to describe how maddening it can be, and the hell of it was that it was clearly maddening for him as well. It’s not that he wanted to ask about his continually, it’s that he needed to say it over and over again. It seemed like his brain just refused to let it go.
Finally this morning he had a follow-up appointment with Dr. Bornstein. When we arrived, we warned the nurse about his obsession and she actually went and closed that door so that he wouldn’t see into the room. Ben’s mom had actually brought a copy of Alice in Wonderland on DVD to trade with Dr. Bornstein if Ben managed to somehow grab the tape anyway. So there we were, steeled for a prison break situation, when Dr. Bornstein came into the exam room. Ben immediately perked up, got a huge smile, and exclaimed, “Bornstein, Alice, TAPES!!!!”
Dr. Bornstein was, not surprisingly, a little nonplussed by that greeting. We explained what it was about, and Dr. Bornstein just laughed and said, “I’ll be right back.” He then proceeded to go get the Alice in Wonderland VHS tape and bring it back to the exam room. He handed it over and said, “Ben, this is for you. It’s all yours.”
Ben was happy, of course, but more importantly it seemed like he was relieved. He spent the rest of the exam holding on to the tape and looking at it, and then when it was time to go he very carefully put it in his backpack for safekeeping. For the entire drive to summer camp, and while he was being dropped off, he seemed to be in a relaxed zen-like state. I checked in with his mom a bit ago, and he has not brought up Dr. Bornstein even once since he came home this afternoon. The feedback loop was finally broken. (Thank God, because seriously? I need to never, ever hear that phrase again….)