It’s not an easy thing to articulate. All I can reach for are the behaviours that seem to spring from that enigmatic well.
If you asked me that question today, I would tell you that parenting a child like my daughter Amelia is still much like being on a rollercoaster.
The carriage holding your family might hover on an up-swing for months and you feel that pleasurable excitement of progress in the pit of your stomach.
You yell into the oncoming wind: ‘We’re making it, we’re really getting somewhere! Upwards and onwards!”
But today, like every day for the past six weeks or so, we’re not getting very far. We’re deep at the bottom of a trough and the wheels aren’t moving anymore.
I think they disintegrated on the way down some invisible ramp and now we’re sliding backwards.
In this trough we are locked in yet another lengthy battle of wills with our daughter. It’s the Hundred Years War all over again. We might have taken Agincourt but that doesn’t mean jack in the long run.
Every day is filled with screaming fits, physical outbursts, nocturnal wanderings and ever more screaming.
We have been here so many times before, but my god it never gets easier. We’re nearly seven years in and some days I wonder how much longer I can hold on.
Last night around dinner time when the screaming began for the fourth time, I walked silently into my room and crawled onto my bed in the dark to escape my own child. In that dark I felt no comfort but at least the space was quiet and it was mine.
The dark is the right place for me in those moments. I can’t see myself (or her) anymore, I can only hear the sound of my breathing.
The dark is heavy and that is what I want. To allow the blackest thoughts in my head to wash over me as I lie there. There’s no use fighting them, pounding as they are to get out. Might as well set them free.
Lying on the bed I curl into a ball and weep. I cry because I am so tired I don’t really know how it is that I can function in the day. And because I feel a momentary yet powerful sense of defeat.
In the shadows I know only that I am losing this battle – not the battle to beat Amelia at this relentless ‘game’. Nobody’s playing around here.
No, I am failing to help her to handle the frustrations that she cannot yet manage on her own.
I hear taunting voices in that dark room too.
They say: “There’s nothing wrong with Amelia. She’s only like this because you are a bad parent.” (Yes, in my head I italicise for emphasis.)
To those voices I say: “Come into the dark with me and see how long you’d last. You know nothing, cruel, hateful voices. Get away from me and never come back.”
Then suddenly into the dark comes my real, live daughter, the one I’m taking refuge from. She puts a hand onto my back and holds it there. I reach over my shoulder to touch her, to tell her she is welcome there with me.
Amelia lies down next to me and curls her arm around my neck. The dark brings no true comfort, but her affection does. She kisses my cheek softly and presses herself into me. The darkness shifts a little and loses something of its heaviness.
I’m no superhuman and I’m not a machine either. The more confronting behaviours that define Amelia’s autism naturally penetrate beyond the surface of my skin.
My resilience is not bottomless. On such little sleep over so many weeks I can feel myself start to fray at the edges. I forget where I’m supposed to be going. I lose my way.
In this state it’s so hard to know what to do to. Sometimes I want to run so far away that no-one will ever find me. But I only ever get as far as that room, where only the dark will do.
And it is here, where all is finally, blessedly quiet that Amelia reaches out and brings me safely back to myself. With empathy and love we hold each other in the dark and start again, as we must, every time.