Do I need a reason?
I would add another certainty to this short list – the inevitable nocturnal stirrings of my unsettled six-year-old, Amelia.
She has forgotten how to sleep and we can’t remember when we ever did.
The pitter-patter of tiny feet long wished for in our pre-parental phase of life has been replaced by a less welcome sound.
That is, the inelegant, stamping footfalls of our daughter, risen from her bed in the darkest hours of the night, running through the house.
Hell-bent on fun and mischief. Foraging for food. Maternal comfort. Her iPad. Anything except blessed sleep.
I have heard the Chimes at Midnight, at 2am, at 4am, and they doth toll for ME.
My husband and I have grown accustomed to sleeping with our eyes barely closed, our ears trained on the corridor space outside our room.
Because we know she’s coming. It might not be tonight but it will be very soon. Two good nights in a row are a harbinger of a full week of horrifying wakefulness to follow.
It’s like that great line from Platoon, when King says, “Somewhere out there is a beast and he hungry tonight”. I don’t mean to compare my first and only child to the Viet Cong, but when we’re cowering in our bed/bunker, the helmet would seem to fit.
I have learned from other parents of autistic children that this night waking practice is not uncommon. And it can be long-lasting. One child I know of is twelve and she still wakes constantly through night, searching for snacks and televisual stimulation.
Twelve? I can’t do another six years of this and hold on to my sanity. As it stands, I sometimes can’t remember my own name.
But what disturbs Amelia’s sleep? Why can’t she remain settled, secure inside the soft, thick blankets I wrap around her to keep her warm?
Sometimes I’m certain it’s because she is anxious, terrified even. She is deaf and at night I wonder if the shadows don’t crowd in on her, and frighten her down to her cotton socks. How would I even know?
One night Amelia told me that her curtains were whispering to her. No, they were singing. When she said that I looked at the gentle, green folds of her drapes and thought, if that’s true then I’m out of here too.
Her imagination must be powerful because she can’t hear anything remotely like a whisper, or a curtain-song.
The night is dark and full of terrors, as Melisandre from Game of Thrones, would say. Everybody run.
And yet another part of me suspects that Amelia is foxing. For her the night is merely an extension of the day. Just another moment in time to fit in the things she loves to do. Like eat, draw, create and laugh at her funny little TV shows.
If I didn’t know better, I’d suspect she’s only pretending to sleep while she waits for us to be out of the picture and she can have her run of the big house for a few hours.
Recently Amelia started hunting for audio-visual devices at night until we locked them all away. We have discovered her sitting up in her bed at midnight, surrounded by a menagerie of toys, drawing items, snacks and her iPad propped happily on her knees.
Her defiant face in response to her Dad’s appearance in the doorway says, “What’s the problem, mate, I’ve got this totally sorted. Shut the door on your way out”.
Mr Marbles is on the move.
Jerry becomes certain that the doll is going to come to life in the middle of the night and kill him. Despite Kramer’s assurances, Jerry sees a doll-shaped shadow move past him on the wall, then hears rapid footsteps.
Holding the blanket up to his chin Jerry whispers in terror, “Hello? Is somebody there? Mr Marbles?”
This is where we’re at now. Lying in wait for our very own, albeit much cuter, Mr Marbles to hop out of bed and come running down the hall. We clutch the bed covers in mock horror, but this pantomime belies our true fear. Of never having a good night’s sleep again.
We amuse ourselves so that we can cope with the regular disruptions, the impact of the deprivation on our lives. The nights when our agreed ‘contract’ with Amelia is broken yet again and she screams for hours for comfort and attention. It’s harrowing.
It’s hard to be strong at 3.30am when you’ve already been awoken at 11.30pm and you’re trying to hold firm to the rules about only going in to see her for a short amount of time and then not at all after that.
I have allowed her to have things I shouldn’t in those moments. Like access to our bed. Or her iPad, just for a few minutes (in reality hours), so that I can rest my head once more.
But she won’t learn if we continue to bend to her mighty will. If she has forgotten how to settle herself, how to stay in her room, then we have to remind her. Help her to remember what to do. How to rest.
During the day, when we’re all in a reasonable mood, I talk to her about things she can do when she’s awake in the night. She can read or draw in her bed. Cuddle her bears. Go to the toilet. Close her door to feel safe. I will come if she needs me but only for ten minutes. After that she is on her own.
Even if she screams and tears the house down and the neighbours wonder whether they need to involve the DHS.
So far we are sticking to our agreement, but it’s early days in yet another rebooted strategy and Amelia is always looking for loopholes. A weakness in the plan. In us.
This morning I heard her wake up at 4.30am, earlier than her usual 5am rooster call. She rarely, if ever, has made it past 6am in her life. She knows she is not allowed to get up until 5 and then she can have her run of the house.
Today she worked out how to manually accelerate her alarm clock so that the time was ‘just right’ in the fairytale parlance of another mischievous blonde. Her Dad got up to tell her it was too early and she protested passionately, “No, look!”, dragging him to her clock with the revised numbers, the truth written in neon.
We can hardly compete with that, can we?
Amelia running her own show.
She puts on her uniform for school. Her socks and shoes. Brushes her hair. Watches her funny shows and laughs. I hear her singing her school friends names over and over in the strange circular loop she so often performs.
Sometimes she visits me, signing into my hand, “Time, time”. It’s a question for me: what time are you getting up, Mummy? I sign twenty or ten (minutes). Whatever will buy me more time to SLEEP.
Listening to these morning sounds, the industry of my resourceful daughter starting her day, I lie in my bed and I smile instead of frowning and thinking about an animated ventriloquist’s doll out to strangle me in the night.
The night. It is dark and full of terrors, for little people and big ones besides. But the day breathes new life into things and it brings hope. We start again with the chime of that microwave as Amelia makes her own breakfast. We are awake together and ready to begin.
moderate-severe/profound... quirky 