As of last weekend, Benjamin is now an adult. I had intended to write a lightly humorous blog post about the absurdity of celebrating a 21st birthday with someone who has literally no concept of adulthood, perhaps contrasting it with my own awkward 21st birthday spent with my father so many years ago. After today, however, I am not feeling especially humorous about Ben’s current situation.
Today Ben had a regular doctor’s appointment with his general practitioner. Nothing special about it, his health lately has been good, it was literally just supposed to be a friendly checkup and perhaps some new prescription refills. Ben, however, was extremely anxious. He had barely slept the night before, having been apparently overwhelmed with OCD-type behaviors that kept him agitated all night.
For a long time Ben loved going to see doctors, he seemed to understand that doctors helped make him feel better when he was so sick for so long with his pancreatic issues and atypical cystic fibrosis. That all changed this past year and a half, beginning with his seemingly-endless illness which led up to his Whipple procedure in Alabama last January. It took a solid six months for him to fully recover from that surgery. I think the straw that broke the camel’s back, though, was having his wisdom teeth out back in November. With other doctor visits and procedures there was a pretty strong association between feeling sick, going to the doctor, having a procedure, and then feeling better. With the wisdom teeth, they had not yet begun to cause him any discomfort. There is no question that they needed to come out, and logistically it was best managed by doing it in an orderly manner before it became a crisis. Unfortunately, that meant that from his perspective he was feeling perfectly fine when for no apparent reason we took him to yet another hospital where they did horrible painful things to his mouth. Ever since then he has become significantly more anxious about the entire idea of seeing any doctors.
As a further complication, in the past week we have begun to transition him to a new medication. With all of his other significant medical issues, it had been years since we had been able to really look at his maintenance meds. Now that he is generally healthy, we are hoping to make some tweaks that take into account the fact that he is now an adult and significantly larger than when his current dosages were set. One medication in particular was making him drowsy during the day, which not only causes problems at school but also then extends into difficulties sleeping at night. So five days ago we started the process of tapering off one medication that could be causing his daytime drowsiness and introducing a different non-drowsy medication as a replacement. The psychiatrist we are working with advised us that he was starting with a low dosage, and that we would need to slowly ramp up the daily dose until we found the correct level that best worked for Ben.
It is very clear at this moment that we have not yet found the correct level.
As Ben sat in the waiting room at the doctor’s office today he became increasingly agitated. He was clearly anxious about seeing a doctor, and on top of that he was having an issue with his iPod. Normally he will be very patient while I try to fix whatever technical issue he is having, but today it seemed like he had completely lost his ability to self-regulate. Still, we’ve seen temper tantrums and such from him in the past and it did not seem that worrisome to begin with.
Then he was called back for his appointment, and as the nurse was getting his weight, without warning Ben just hauled off and hit her. I am not talking about a small child throwing a tantrum and slapping someone in frustration. I am talking about a fully grown, one hundred and sixty pound adult male punching a completely unprepared woman. As someone pointed out to me earlier today, Ben has no filters in his head that would cause him to pull his punch. He has no instinct at all to prevent him from injuring someone. He has the strength and the body mass to cause serious damage in a worst-case situation. It happened so quickly, and nine hours later the sickening sound of that smack is still echoing in my head. Fortunately the nurse was not seriously injured (although I fully expect she was bruised).
We quickly got Ben under control and got him in to the examination room to try to calm him down. Despite our best efforts, he still managed to hit the nurse two more times before we suggested that she just go ahead and leave the room. He also slapped his mother several times, and kicked me once in the gut. It has been years since we have seen this kind of violent outburst from him, and he was half the size then that he is now. It was a frankly terrifying experience.
The nurse was very kind about the whole thing, as was the doctor who came in a little bit later. We of course apologized profusely. Normally we would also make Ben apologize, but by that point he was so worked up that there was no way to even get him to focus. I had to take him completely out of the building and let him walk outside for several minutes while his mother spoke to the doctor.
Here is what really terrifies me about the whole thing: Until we get the medication levels sorted out, there is a very real danger that someone can get hurt. Obviously Ben is physically capable of unintentionally injuring someone. Worse, I can easily imagine a situation spiraling out of control where law enforcement gets involved. There was a recent case here in Florida where a mother called the police for assistance in getting her adult disabled son to take his medication, which she had done several times in the past. In this case the police officer wound up separating the son from the mother, and then fatally shot the son when the young man became aggressive. So yeah, that keeps me up at night.
I am trying to tell myself that today was an aberration, and that before long we will get his medication sorted out. The simple truth, though, is that the issues surrounding caring for an adult autistic are worlds away from the issues we faced when he was a child. In less than a year Ben will no longer be able to attend school, he will have aged completely out of the system. There are adult day programs, but they are cost-prohibitive. One way or another, by next fall our entire routine will have been completely upended and we will be scrambling to find the new normal. I have frankly never been more terrified of the future than I am right at this moment.
So, um… Happy New Year?