What We Need

February 11, 2019 at 5:23 pm Leave a comment

What We Need has functioned as a journal for me over the years, and in my draft folder there’s almost 100 starts that I never published (if you don’t know the meaning behind the title, here is an explanation: Just what do we need, exactly?). As I read through those drafts I am often startled at what I find. They are full of pain and hopelessness and desperation. It doesn’t match what I feel now, but I admit to feeling more than a bit anxious at the thought of C’s return home.

Anxious enough that during a session with Therapist NC and Hubs last week to discuss the “coming home plan,” I found myself admitting that I don’t really want C to come home. It’s not really about C himself, it’s more about not wanting to return to the way things were…or gradually doing so and not realizing it until we are right back where we were before C left.

When I read the old draft of a post (below), I was struck at how much that was our life at the time I wrote it (almost a decade ago), and how much that was our life when C left for treatment last fall. How, I ask myself, did we let it go so long? It astounds me just how painful, just how hopeless, and just how desperate things were for so many years. It’s not as if we didn’t try things – we tried everything. But nothing ever worked. Therapy, meds, interventions, home visits, school changes, homeschooling, living near relatives, living in social neighborhoods with lots of kids, signing C up for things…none of it ever did anything to change what was going on in our home.

Therapist NC would say, if I could channel him, that we’ve all done a lot of work in the past six months and there has been great change. I don’t disagree with him, but it is hard to imagine something different when things have been so much the same for so long. So once again, here I sit, feeling a bit anxious, with good reason to be, but also with some hope – again, with good reason to feel some. The trick will be – as it always is – to find the balance between my expectations and my own self-awareness, with a good dose of hoping I’ll know where the line is so that another decade doesn’t go by with us living so far across the line we can’t even see it any longer.

From 2011…Still, here I sit tonight, completely and utterly perplexed as what to do next. I have a child whose combativeness and behavior are at a crisis point. It starts in the morning when he wakes up, continues from the moment I pick him up after school, and rarely settles before bedtime. With every fiber of his being, C is screaming that he needs something, and we are all at a loss for what it is. While we try and figure it out, I try to ignore the venom directed my way and tell myself it’s not C. I try to stay calm while he screams, relentlessly, about how he doesn’t want to stand here, there, or anywhere. It’s that unreasonable. He’s like a gnat that won’t go away, and he follows me around, forcing my attention, until I lock myself in my room to escape his wrath. Then he starts trying to kick down the door. Yes, we are in an almost emergency state, our little family, and we are failing at being a family. We are at the point where there’s going to be some intervention, and I only hope the intervention comes on our terms instead of some random person walking down the street calling CPS because they hear what sounds like a tortured child.

Entry filed under: autism. Tags: , , , , , , , .

A way with words I remember…

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