I can pretty much predict when the meltdown is coming. It’s something in the eyes and the way he carries himself. There is a small hint there. The days it catches me by surprise it’s because I have been distracted by some other event, task, interruption. When I am caught unaware that it’s coming it’s worse. For me, not for him. It’s always worse for J because he is the one who, in fact, is inflicting harm on himself. I’m just collateral damage.
The outbursts don’t last long. They probably sound and look worse than I think they are. I’m sure that, somewhere in there, there’s some bruising that might come up in an X-ray or a CAT Scan, but outwardly all is well. J’s skull is hard. It’s, I’ve been told, a family trait. That doesn’t stop me from cringing, or being scared. It doesn’t prevent my worry, or my desire that it will stop and go away.
I admit I’ve cried a bit lately. I admit I haven’t been sleeping. I admit it’s hard on me to be here with the sudden onset of SIB. I admit I have whined about this to Dada. I confess, and this crushes me, that I’ve wondered if I’m just not good for J. Maybe I’m not the right person to care for him. Maybe I’m part of the problem and not the solution.
No, I’m not depressed. I’m a little down in the mouth right now. Baffled by the situation and feeling a little powerless, but I’m sure we will find a way to fine-tune, always fine-tune. Maybe? It’s possible??? Right???
In other news, I’ve already received the first “hey, have you heard about the Ben Affleck movie about the autistic accountant?” quip. I am thrilled beyond words that this malarkey is starting all over again…NOT. “But it brings attention to people with Autism!!!” No, it doesn’t. It just gives people like those who make this sort of comment some sort of carte blanche to say stupid stuff like “does J have any special skills like those???? Is he like a supra-genius?”
Of course, you can tell Hollywood they’re getting it wrong (or they’re going about it in the wrong way) until you’re blue in the face, but nothing will change. The exceptional circumstances already attached to an ASD diagnosis are apparently insufficient. Whatever achievements one chalks up through effort, persistence, etc. are nothing to crow about unless you can answer “why, yes, he can play Bach’s Toccata and Fugue in D minor, BWV 565 using mainly spoons a la Mike Wazowski…thanks for asking!”
So that’s where we are. That’s what we’re doing. I don’t know how this will evolve, but we are ready to roll up our sleeves -again- and deal with it. In the absence of day programs with openings, of a reliable respite care provider, of many other things that families in the same situation need and cannot find because resources “out there” are overburdened, we plod on…
Not very gracefully. Not very efficiently. Not very enthusiastically. But we plod on……..