I feel like this past month should have come with warning labels. Warning: Medications often have disruptive side effects. Warning: Sometimes this roller coaster flips of the tracks when life changes too quickly. Warning: Once you step on board, not everything that happens on this ride is in your control.
So, I’m going to give you the standard amusement park warning: Buckle up my friends, because this week we’re going through over a month’s worth of high-speed bumpy rides. And, hold on tight- because we’re going down, up, around…at some points, we’re going to crash right off the tracks.
So many times we think that a medication equates to magical medicinal solutions. Many medications do great things, but there are often side effects and sometimes, those can be harder to deal with than the original concerns. Tony was scheduled to go on a dose increase for the medication he’s been prescribed for his ADHD, and for the first couple of days it went OK, except he was really sleepy.
By a few days into it, he was generally doing great in the mornings in public and for therapy, while violently trying to protect his ability to self-harm in the afternoons. And these weren’t light little taps he was trying to do with his head against the floor, he was throwing all of his 76.4 pounds into it and had to be stopped for his own safety. I took three hits to the face in one day trying to stop him…and he was absolutely trying to land those slaps, and quite a few more actually. Tony’s never been violent that way before, so obviously, this was a concern.
We were also learning that in public therapy, if we didn’t go in the mornings, the afternoons were rough with both doses. We had a trip into Costco where he really didn’t try to flee at all, but I spent far too much of the time trying to keep him from cracking his head into their concrete floor. Whitney and I turned to each other when we were done and said, “Wow, this was actually easier before.” He was falling asleep in the afternoons sometimes, but because this changed his routine, frequently he’d wake up and launch into a screaming, raging attempt to harm himself.
A couple days after the Costco outing, we had a speech therapy session crashing down with these themes to the point where nothing got done except protecting Tony. Once he was buckled safely into the car, I called his new developmental pediatrician. Generally, I prefer not to be seen or heard from until regularly scheduled appointments, but some things cannot wait. She did a great job of calling me back (which I am deeply appreciative of), and we agreed to reduce his medication back to the half dose. She does a great job of listening to the concerns and taking them seriously.
You know, it’s hard to say what caused this bumpy ride for him. I suspect the biggest part of it was that both doses were making his body feel too differently from the way it was before, which was changing things far too quickly for him. He really has a great deal of rigidity about his routines, that is part of how Autism works in his world.
Once the dose was reduced, we had one awesome week (albeit distinctly more hyper in the afternoon) before we woke up on our next ride. During that time, he returned to flashing the dimples with glee when chased, markedly reduced self-harming, and stopped trying to hit anyone who stepped in to protect his noggin. Even with the difficulties in the afternoon with both doses though, we had some serious up points on the wild ride of the medication roller coaster: increased willingness to sit and play (for up to 45 minutes at a time with me) and increased balance and self-control.
And then, we heard from Whitney. An entirely unexpected circumstance led her to an immediate move out of state. Whitney has done so much for our family over the past three years, I’m not even sure how I’m going to get through the rest of this post coherently, but I’m gonna try.
People sometimes think that because Tony is severely Autistic, individuals can come and go in his world and it wouldn’t matter to him. From the wreckage of the past two weeks of our off the tracks roller coaster ride, I would like to respectfully refute such a notion.
Sure, Tony doesn’t care when someone vanishes if he doesn’t have a bond with them. The same could be said of most of us in that regard. However, Whitney is one of the few people I would go so far as to say Tony loves, absolutely loves. From the moment we told him she was leaving, he understood. And his heart has been breaking for days in so many settings- we’ve had screaming tantrums the like of which we haven’t seen in ages, heartbroken sobbing, as well as a resurgence in self-harming.
He’s also struggling with an increased need to control as many things in his environment as possible, which has made community safety outings around the neighborhood eye-catching. We can sometimes be heard from quite a distance also, and he’s back to trying more pushing to go directions he prefers. I was not having fun Halloween night while trying to search for his shoe in the dark of an unlit park lawn while he tried to push and scream his way to the equally unlit equipment. Given how well he did trick or treating, I would have let him go to the park but it’s not safe for him in a complete absence of lighting, and he was not interesting in taking no for an answer. I had to carry him out once I found his shoe.
Some individuals on the spectrum will want to take additional control over what is going on around them when something undesirable and outside of their control happens. I suspect this will calm back down as he adjusts to her absence.
Sometimes people think an upward trending journey for an individual looks like a gradual or steep incline ever moving upward and forward. So much of the time, it’s really like a roller coaster, going up, going down, whirling through the corkscrews, shooting up farther then before, and sometimes crashing off a broken rail (or heart).
Our overall path continues to be an upward climb, despite the dips. And even though our little man has been struggling hardcore to regulate his emotions as he deals with the unexpected loss of Miss Whitney, he’s had some great positive moments. Wednesday at WalMart and Thursday at Vitamin Shoppe, he did really well. And he was the most regulated at NMT (Neurologic Music Therapy) that he’s been in a few weeks. But I’m not going to lie, I’m also expecting the upcoming weeks to have some pretty rough spots.
And Whitney, we will never be able to thank you enough for your time helping our son. As always, you have my understanding, support, and every wish for the very best in your future. I am going to finish this post out with a few pictures from our last week with Miss Whitney. There is also a very brief additional post after this with a flashback picture from our time with Whitney, for those of you viewing this on my homepage.
