It’s astonishing just how finely tuned our brains are–and how small changes in what goes into our brains can change so much about how and who we are.
Back in late April and much of May, Secular Jew, Jr. (“SJJ”) was hospitalized twice in pediatric “stress center” units. “Stress center” is the euphemism du jour for temporary place to put people with acute psychiatric symptoms that cannot be managed at home and that may be resolvable without permanent institutionalization, usually due to substance abuse or severe depression. SJJ is not yet even a preteen, and most of the kids in these units were teenagers, so these were really very extreme places for SJJ to be. But after two stays, in the course of less than a month, the issues SJJ was experiencing seem to have boiled down to medication issues; medications were removed, SJJ stabilized, and things seemed pretty okay.
SJJ has taken plenty of meds to try to address varying aspects of his autism–several meds were intended to address attention “difficulties,” one was intended to address aggression (which manifested after a brief stint on a drug study), and still another was intended to manage the mood swings associated with one of the attention medications. Through it all, one medication has been there as the constant–it worked, it continued to work, we could see when a dose had been missed or was wearing off, and it never caused problems.
But in four years, its dose never changed. And in that period, SJJ nearly doubled in age, gained a lot of height, and added a lot of weight by virtue of both growth and over-stimulation of appetite that came from one of the medications. So, once he was stable and at a new treating physician–after all the hospitalizations ended–we agreed with the physician to slowly increase the dose on that single tried-and-true medication.
The first bump-up was…okay. It was a bit rough at first, but he recovered, and things got better.
The second bump-up happened yesterday morning. It was not okay; we seemed to be slowly headed back toward levels of agitation we had seen during May. Definitely not good signs. I started to have the same kind of adrenaline-infused panic that crept up when we had to make hospitalization decisions a few months ago, when SJJ was kicking and hitting and screaming and scratching like a not-yet-preteen rage-ball; this was just not a good scene.
Fortunately, Mrs. Secular Jew was able to calm both me and SJJ down (she has to do that a lot, which is not really fair to her). We saw what was happening and have–finally–lived through enough up-and-down with medication to know when to call it quits on a new approach. This was that time.
I could say something like “trust your instincts” or “trust your doctor” or “don’t trust your doctor.” None of it would really be helpful if you found yourself in the same situation.
Instead, I’ll say this: if you never to have to deal with these issues, count yourself fortunate. If you know someone who does have to deal with these issues, for themselves or a family member, be supportive. Of all the things I thought I might have been signing up for as a parent, I never imagined that the slightest change–merely half of a pill–could threaten to undo so much progress.
And if you do have to deal with these issues, I won’t pretend to know your pain–we all encounter this differently. But my hopes are with you.
I’m an adult autistic who is currently getting by without meds. I wasn’t diagnosed as a child, so I got a lot of abuse from teachers (and my mom) while having trouble learning how to moderate anxiety and other issues. I tell you this: you and Mrs. SJ are great parents and you’re doing the right thing for SJJ. Yasher koach to you both.
Thanks! We do our best. It’s astonishing how many people don’t get an autism identifier until later in life, and it’s very disappointing to think about how much harm that has done. (A good part of why I’m in rabbinical school is to make some changes for the positive in the Jewish community on these issues.)
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