I’m tired. Specifically, I’m tired of Asperger’s.
I don’t hate it or my son who has it. I’m not angry at the brain he has, that brilliant brain that thinks in completely different ways than my neurotypical brain. I’m not out to “fix” him or “cure” him. He’s not broken or sick. His Asperger’s is part of who he is as much as his grey/green/blue eyes and his love of all things cat-related.
But I am exceptionally tired. Tired of the explosions rocking our world. Tired of walking on eggshells, wondering if this time he’ll accept my “no” with a head tilt and relaxed, “Okay,” or whether he’ll erupt into a tantrum of Vesuvius proportions. Tired of guessing how he’s understanding what he’s hearing and seeing, knowing it isn’t how I see or understand and and that he often forgets just how differently he perceives the world, at least differently than his brother and I do. Tired of hearing myself yell when I can’t take it anymore. Tired of crying when I hate that I yelled at my kid, my kid with Asperger’s.
He’s tired, too. He’s tired of traveling and returning home and all the routine-breaking that goes with that. He likes the places we’ve gone, the family we’ve seen. He liked Stunt Camp, even though he was teased by one of the other kids. He really liked SUUSI, the Southeastern Unitarian Universalist Summer Institute (read: giant UU church camp) we attended in July, a place he marveled at, summing it up in one tear-jerking statement, “I like it here. No one teases me here.”
Like these trips and visits or not, the transitions torture him. And when he’s tortured, so am I. Yeah, I’m the mom. I should be able to weather his storms time and again, always staying calm (since that works better with almost every person when they’re upset) and sane (as that works better for dealing with life in general). I should not yell, not scream, not threaten with school, not slam my door and cry in frustration over the moment, in fear of his future, in sorrow for mistakes of the past, in anxiety about keeping the three of us in one piece emotionally while he pounds on my door again, yelling to be heard again. Yelling, pounding, crying in frustration, crying in fear, sorrow, and anxiety.
It’s messy that way, at least for me, parenting a child with Asperger’s with a large dose of anxiety and a dash of ADHD on the side.
There’s plenty of frustration, fear, sorrow, and anxiety all around. There’s also anger, anger that’s usually anxiety turned sideways, fear turned upside down, and sorrow turned inside out. Anger is his default emotion, since the others are often just not accessable or expressable or something. The others just seem lost in translation, with only anger surfacing. The anger wears me out. His and mine.
I’m desperate for another emotion from him. Occasionally, he’ll talk about being afraid: afraid of his room, the backyard, the front yard, some math problems, new piano pieces, and countless other places and conditions that he hasn’t yet expressed or can’t name. He just assumes I know what he fears, how he feels, what he knows.
But of course I don’t know. While it may not be true of all on the spectrum, a lack of Theory of Mind is part of Bryce’s Aspergers. He has a terrible time seeing from another’s point of view, at least in real life. He’ll admit it freely and has even volunteered is challenge when flustered. Sure, offer him a hypothetical Theory of Mind test, and he’ll give the right answer. He has enough logic skills to do that. In real time, with emotions running high, it’s a different story.
Worse yet, he struggles to interpret his own internal milieu. Thanks to lots of conversation between the two of us and some time with a fine therapist, he’s more often able to label at least his anxiety and sometimes communicate it. He still generally screams it in anger, but screaming,”I’m really anxious about this math problem,” mid-meltdown at least gives me a bit more information than his usual rants. And, if I’m not too far over the edge (lately, I tend to be hanging by a fingernail), that bit of information gets through and allows me to reframe the situation and change my (highly ineffective) all too-frequent response of yelling back.
So I’m tired. Perhaps not so much of his Asperger’s itself, but of hanging onto this cliff during this siege of meltdowns. Emotional regulation required emotion recognition, and that’s still in early stages for him. Somehow or other, we’ll find a way up, and I’ll come off the cliff and stand on solid ground again. Somehow.