The holiday weekend was LONG, but we all survived! One more broken window pane, another sizable dent in the living room drywall, a broken wall clock, and a few band-aids but no major incidents. Still, if the last four days are any indicator of how my summer is going to go (and I know that it is) I'm more than a little nervous.
The paradox of raising this child is how very much I love him and how very much that doesn't matter. Okay it matters, but it ultimately doesn't change the gritty reality that is our life. No amount of love, or even passion or dedication, can change our circumstances.
He has a developmental disability that keeps him from being able to form typical emotional bonds. If it were that simple, if there was just nothing, it would be easier to take. But he hugs me. He kisses me. He laughs with me, and we sing songs together (Well, I sing and he engages in his own way).
And then the inevitable happens. I have to impose a boundary on him. No, he can't have a fourth frozen chicken patty (because at some point I have to stop the processed-food monster). No, he can't watch YouTube videos on my telephone (because I let it go that he was hitting the $300 iPhone [that I couldn't really afford the first time] on the table for 15 minutes, but he's started throwing it at the wall in between clips).
You may be reading that and thinking that I shouldn't be telling him "No." Mmmhmm...I'm actually pretty good at this parenting thing. Just as often I present the information with a positive spin: "Let's put the phone down and go swing!" in a singsong voice with a scary, big smile. I redirect. I offer positive reinforcement: "I like how you're sitting quietly! It's so nice when you leave the phone on your lap!" When all that fails, I can bribe with the best of them.
But the reality is that my son has a zero tolerance policy for the concept of no. During his first hospitalization, the attending psychiatrist told me on day 21 that they'd found Braden's baseline. She said, "If you agitate his comfort level, you get negative (aggressive) behavior." At the time, that infuriated me. 21 days to say something that basic? I realize now that she was spot on, and it's that's simple. And that complex.
Since he was two years old, we've been working on giving him coping skills to manage his emotion. All parents do that. Most just make some noticeable progress. At almost 12 years old, his go-to is still hitting, kicking, and screaming. When he was younger it was embarrassing. Frustrating. Exhausting. Now, it's all that and more.
I gave birth to someone who is abusive. To me, to his brother, to teachers and classmates. Truthfully, to anyone he can get his hands or feet on in a moment of rage. I wish that was melodrama, but it's not.
Again, the paradox of raising this child is how very much I love him and how very much that doesn't matter. I know that those amazing moments --of attachment, of joy, or what I interpret as love--are the exception and not the rule. I understand that his confusion, his frustration, his anger are manifestations of his disability overtaking him, in those moments it's running him and clouding his already limited ability to act rationally.
But I have toe-shaped bruises all over my legs. They're kind of like polka dots: yellow, green, purple. My hands go numb on an almost daily basis as a result of karate-like chops to my upper arms. I've been hit and kicked from head to toe.
Last night I had to call my husband in to help me give him a bath. To give him a bath. Why the behavior? I was trying to wash him. To get some of the flith from a weekend of picking leaves off of plants and trees off of his hands. I could not manage giving my son a bath. He was kicking the fiberglass tub surround so hard I was afraid he'd crack it.
Lots of people think they know about Autism. They likely don't know it like this. And I swear to you, I'm STILL being polite. I'm not telling you the whole story.
I've had professionals tell me this isn't "just ASD." Clearly this child has some co-occurring disorder. Whatever. I don't really care what it's called (although I'm pretty sure this is textbook old-school Autism). I just know that I need to call it something in an attempt to find resources. It used to be that I was searching for pathways to improvement or supports to advance his abilities. Now, I'm just looking for the resources to help us survive.
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