We suspected at the time that he was reacting negatively to medications, to his school environment, and to perhaps having hurt himself at an open house for a gymnastics studio. HJJ had become increasingly violent over the course of the prior week, and we had sent him to school only one day that week.
We didn’t really know what was happening at the time, except that our previously affectionate, silly, funny boy was anything but. He was hurting us and hurting himself, and we didn’t really know why or know what to do. We just knew it was past all our abilities to cope any further.
Over the course of almost a month, including two weeks or so of inpatient hospitalization in pediatric (really, adolescent except for HJJ, who would turn ten during his second inpatient stay) behavioral health centers, things got better. We know now that medications–too many of the wrong kinds–were causing the problems, and they fed into behavioral triggers and cycles that would take some time to calm down. There are still times when it’s clear that there’s too much happening, and times when he doesn’t yet have the skills to tell us what’s wrong or get himself out of a situation; hunger is the worst for him.
Still, a year later, HJJ is much happier than he was this time last year. But there are lasting differences. He is much more hesitant to leave home than he was before, and he is much less easygoing about change. He hasn’t been in school since a few days before we all went to the emergency room on the early evening of April 30, 2014, a night when Mrs. HJ and I wouldn’t go home until about 6 a.m. the following day. HJJ wouldn’t come home for almost nine days after that, and that was the first hospital stay.
HJJ has been doing various therapies to help develop coping and life skills–he couldn’t zip a zipper on a coat, fasten a button, etc., until the last few months–and now we’re working to figure out what school looks like. We can’t afford private school for him, and our insurer clearly is uninterested in continuing to cover 40-hour-per-week therapy schedules (they’ve warned as much in advance). And HJJ needs to be learning again for his future.
So, where is he now? He’s back to being the kid who (mostly) sleeps through the night, loves to cuddle up with one of us to go to sleep, loves to play with his toys, and goes through the usual cycles of preferred foods. He tells jokes (“What kind of fish can you see at night? A starfish!”). He tickles us and wants to be tickled back.
We are thankful that HJJ has been able to get back to being who he is, without a parade of medications affecting his mind and body: he takes one medication now, seems at his happiest when he has that medication at that specific dose, and we understand what it looks like for him to get the wrong stuff or too little or too much of the right stuff. He seems happy and content. Of course, we could be wrong. But we’ve got a much better feel for what wrong on these things looks like.
We are thankful that there were people in all our lives that were willing–even when insurance wasn’t paying–to step into the crisis and help HJJ and us. Every once in a while, I realize how fortunate we were to find those people. There are people who really love HJJ: who teach him Hebrew in a way that works for him, who have his picture on bulletin boards even when they haven’t seen him for months, who take time to buy presents for kids they don’t know, who take time to provide babysitting for kids that others consider “difficult” and who remember HJJ by name every time. (I don’t usually tell Mrs. HJ when I have these realizations, since they come at random times and the feelings-related words from first-person experiences are not my forte. And they are definitely not my forte when speaking.)
Do we know what the future looks like? No, not really. He’ll be starting fourth grade at eleven years old. And that’s fine; we follow the trajectory that makes the most sense, and this is where he’s at now. A year from now, the story will be different.
Most of all, though, we’re happy that he seems happy, and we take his word for it when we ask him how he feels and he says he’s happy.
A year ago, we were waiting with terror–and so was he.
Now? Now, we’re all just waiting.