Parenting update: It's gonna be harder before it gets easier

posted by Jeff | Tuesday, March 10, 2020, 11:25 PM | comments: 0

A few weeks ago I checked in with regard to our parenting challenges, and general exhaustion. Things aren't really getting better, but I'm settling into some acceptance of that reality. That in turn, I hope, is going to make me better equipped to roll with it.

Shortly after Simon started on the Abilify, the doctor doubled the dose since we didn't see any appreciable change in behavior. Around this time, we started to see a general lack of interest in eating and he dropped about 5% of his body weight. This was weird because that particular drug is notorious for weight gain as a side effect. In general, I felt that he was lethargic. He had no interest in riding bikes and just wanted to sit around and play video games. I think at most he spent about six weeks on the drug, but seeing no constructive changes, I felt strongly that we should ramp him off of the drug. Additionally, we were seeing a lot of extraordinary anger about, well, everything. We even captured it on video for the doctor to see.

He's been off of it now for about a week and a half, and for more than two weeks, we're having the anger about 80% of the time in the evenings, and full on ASD meltdowns about 20% of the time. I'm surprised that no one has called the police with all of the screaming. My hope was that we could establish some kind of behavioral baseline after the drug worked its way out, but we introduced another variable that makes that difficult.

Some of the anger comes from the competition that video games play against everything else, including homework, but also simple routine things like bedtime. We really allowed him to spend unlimited time with games over the holidays, and I think that came back to bite us. As we explore the accountability vs. accommodation that I mentioned previously, these basic contracts are difficult for him to accept. In any case, we now have a small base allowance for game time, using a timer, and additional time is granted based on homework and reading time. It all goes off at 7:30, without fail.

The time trade started this week, so we don't have a behavior baseline because we changed the rules again. And dammit, next week is spring break, so we're back into the same trap we had during the holidays. There is one sliver of hope though... Simon is self-aware about the hair-trigger anger. Once he's calm, he feels genuinely bad about, and doesn't understand why he can't control it. These anger fits are pushing us to the limits, but once we get into a rhythm with the earned game time and limits, my hope is that we can then identify with confidence what his "normal" is under these rules, and take that to his doctor for advice.

For me personally, I'm getting better at compartmentalizing the chaos and the sadness that he feels. It hurts to see him like this, but just as I know he doesn't have the skills to cope with what he's feeling, I can't let my own frustration and sadness take over. Sure, that means I have to find ways to vent and exercise self-care, but I'm working hard to figure that out. Diana is being an all-star, but it's taking a toll for sure. We tag out a lot, but it feels like she takes the worst of it, because she's better at helping with homework than I am. Simon prefers her over me in most situations, so that puts more of a burden on her.

I'm optimistic that we'll figure this out, because I don't know how else to be.


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