To recap: Monkey had to leave his social skills group last week, but this week he was allowed to return for the last session. There were apologies all around and he made a special effort to play nicely with the kid he clobbered last week, and as it was the wrap-up and party I think we were all happy to be able to end on a high note. But all was not sunshine and rainbows; he did end up under a table for part of the time, demanding that his therapist “just please make him shut up” (referencing a chatty kid who was getting on his nerves), and although SuperAspieDoc assured me it was fine and he handled it well—”He didn’t get violent! He asked for help!”—it only added to the growing knot of fear in the pit of my stomach.
We used to say that these episodes were so unlike him. More and more, the hyper-irritability and bursts of aggression ARE like him. Crowding out the clearer parts of him; dulling the brighter ones.
We still don’t know what we’re doing about school, with just a week left before classes start. I said to SuperAspieDoc “I know you can’t tell us what to do, but I kind of wish you would just tell us what to do.” And she acknowledged that she can’t make that choice for us, but did say she thinks it’s time to reevaluate his medications.
I know a lot of people who are anti-meds, and even more who are anti-meds when it comes to kids. I’m not interested in debating it, because I’m pretty sure medication has flat-out saved my child’s life. We are obviously pro-medication. Monkey has been medicated for years, with varying degrees of efficacy.
The problem with psychiatric meds is that it’s an art as much as a science. Things that work today might stop working a year from now; Monkey is constantly growing and changing; and there are never any guarantees when we put him on something new that it’s going to work at all. To top off THAT pile of awesomeness, his psychiatrist’s office is run with slightly less efficiency than a crackhouse. We have never had to wait there for less than half an hour, and some days—like today!—we wait for closer to two hours. It’s maddening. Monkey is always on edge by the time we see the doctor, and truthfully, so am I.
So the discussion began: Here is what we’re seeing. These are the behaviors we’re not having any success controlling through therapy and associated behavior-shaping efforts. Then the talk about what he’s currently taking—could their previous efficacy be waning?—and what we’ve tried before, because we actually did try a stronger class of drug briefly with scary results back in the winter.
Otto and I had our say. And then the doctor turned to Monkey, who was looking, truth be told, decidedly pissed.
“Anything you want to add?”
“No.” Monkey stared at his lap. I murmured something to him about how I know he doesn’t like to rehash times when he’s lost control, that I know it makes him feel sad and ashamed, but that we’re only talking about it to try to help him. He continued looking down.
“Is there anything you want to be different, Monkey?” I prodded.
“I don’t like it when I’m out of control,” he finally muttered. I looked at the doc, who decided to take a different angle.
“Monkey, do you feel sad sometimes?” he asked him. “I mean, times besides when you have these incidents? Do you ever feel sad without knowing why?”
Monkey shifted his weight, next to me on the office couch, and I instinctively patted his knee. “At night,” he said, finally looking up. “I’m really sad when I go to bed a lot. I stare at the ceiling.”
“How sad?” the doc pressed.
“Sometimes when I’m lying there I cry. I don’t know why, though.”
My chest seized. He’s lying there in the dark, crying? While we’re downstairs, unaware? I turned to Otto, whose own look of shock and unhappiness must’ve mirrored my own. How did I not know this? How did Monkey not tell us??
We finished out the appointment. We left with new prescriptions, a new plan, a hope that we can get him to a better place.
As Otto drove us to the pharmacy, Monkey sank back into the book he was reading.
“Hey, honey?” I had to call his name and tap his knee before he realized I was talking to him. “Put your book down for a minute, please. Monkey, do you know that if you’re sad at night—or any time—you can come to us? If you’re supposed to be sleeping and you’re just lying there feeling sad, please come get me. I’ll come sit with you or snuggle or whatever you need.” He nodded. I suddenly realized why that might not have occurred to him. “I won’t be mad if you’re up past your bedtime, if that’s why, sweetie. Please don’t think you have to be sad all alone.” He nodded again, the matter closed, and picked up his book.
Monkey was a colicky baby, and I spent countless nights pacing the floor with him, whispering “Hush, Baby, it’s okay. Mama’s here. It’s okay, Baby. Shhhhhh. Hush.” He still cried. I felt so helpless and inept, night after night.
How is it possible that eleven years later I feel like I’m still pacing the floor with him, pleading with him to be okay? Only now instead of jiggling him just so, I have to pick a school and make him take pills and get him to a million doctors’ appointments he hates AND pretend I know what I’m doing.