J went back for a follow-up visit with the psych on Friday. This was the new psych. His previous doctor (who had been treating him for nearly six years) has shifted his practice to serve an underserved population in a remote part of the state, and we were reassigned to a psych who has a specialized practice more geared towards J’s needs.
We were hesitant. Change is never worry-free. J asked for his regular doctor several times, and I did my best to help him understand that we were seeing a new doctor in the same office. It wasn’t the most stress-free ride in a taxi we’ve ever taken.
In the end we were fine. J was mildly confused at first, and then it dawned on him that we were seeing someone new. By the end of the appointment, he was leaning back contentedly on his chair, sighing happily and smiling from ear to ear.
We explained to the doctor that J’s obsessions are still there, only less so; we said that we think the med is working, but we have our son rather than some medicated puppet in our hands. We told her we are glad that we can now negotiate, talk, soothe, reason better than we were able to do way back in early November.
We know she read his file. She had to so that she would understand the needs of this young man she was meeting for the second time (the first having been a cursory introduction during our last visit to his previous doctor,) and that she knows where we’re coming from. These visits are as much for J as they are for us. We often find ourselves a little lost at sea, and we need to know how best to navigate.
The band-aids were discussed: we’re back to after-bath and before-bed bandaids. The fact that J is sometimes totally into hanging out with us, and sometimes not was discussed also. The fact that we get tired and frustrated figured into our discussion. The fact that we can get scared and want to help J as much as we can was also mentioned. We explained that there are certain limitations as to what is out there, on offer, for him. We explained that we try to fill the gaps as best we can.
She asked about the SIB, and we were honest. It’s there. It’s not entirely gone. It’s much, much, MUCH more controlled than it was. We have come to understand and accept that there is a compulsion for it, but that J is doing his best to be kind to himself. We only see an escalation in proportion to the level of frustration he is feeling. He accepts that we have to make sure he’s OK, and that he has not hurt himself. He accepts that we are working to help and not just to hinder.
“Do you have any holes in the walls?” No. “Is hitting his head all he does?” Yes. She explained that we are very fortunate; J is under control, and he trusts us. She told us that she has seen, in all her years of practice, people whose physiognomy is changed by the damage they cause through SIB. She said that we are doing great. She said that the effort we put in and the work we do shows.
The med, of course, will stay as is for the time being, but we expected that. We know that J was a certain way, then he progressed, then he had a setback, and now he’s back to making progress. That doesn’t mean we’re going to have the same J we had before we started slipping back. This is not the same person…he is, but he isn’t. Something changes every time we have to readjust. Experience changes us without nullifying our basic self.
We will move J forward. We are starting to see more and more of the positive effects of the med, and only the pesky gain weight on the bad side. But it’s something we can deal with, and work through. We’ve done it before, and we’ll do it again.
A little over a week to J’s 22nd birthday. Another milestone. Another bend in the road. Another opportunity for growth, maturity…a little madness.
We have no holes in the walls. J hits his head, but no longer to cause himself pain, and no longer to the point of agony. He has a pattern. It is not as fraught with violence as it was. There is not an undercurrent of anger and frustration that he cannot explain. He gently taps his head, sometimes it’s actually a caress, and then feels satisfied that he has completed a cycle that, for some reason that eludes us, soothes him.
We stay vigilant. We stay proactive. We want to help. We want to provide him with all the love and support that he needs or wants.
We are doing well. Sometimes it’s important to hear it from someone else, and we all heard it on Friday. When you usually get daily feedback from each other, it’s hard to believe that it’s not just encouragement of the “please, don’t give up, or I’ll feel like I have to give up, too!!!” sort. Sometimes it’s easy to say “we are drowning here! What are we doing? Doesn’t it seem like we’re getting nowhere????” because, as parents of an individual with ASD, it’s easy to feel we are isolated, that there is very little understanding of what’s at stake.
We were driving back from the Friday post-appointment outing and our Hamilton CD was playing. As Leslie Odom, Jr. sang The Room Where It Happens Dada said “you realize that no one wants to be in the room where it happens, right?” as he cast a glance over his shoulder at a broadly smiling J. Mmmmhmmm, I replied. It is a testament to our sense of humor that we then immediately launched into a vigorous sing-along to the song. We often wonder if Lin-Manuel Miranda knows we are singing this about our inextricable position in our son’s life. People know this is our life, but they really don’t know what that entails.
No one else was in
The room where it happened
The room where it happened
The room where it happened
No one really knows how the game is played
The art of the trade
How the sausage gets made
We just assume that it happens
But no one else is in
The room where it happens
By the time that we got to the end, we were buoyed, energized, ready for anything…
It’s good to hear that we’re not drowning…we’re actually swimming. Exhausting it is, but it is still swimming. J is getting better…that’s all that matters… Or, as the song ends, CLICK-BOOM!