My head hits the pillow, that’s the first hurdle, what tends to happen is I fall asleep downstairs and usually need to stay there as we have a latch on the bedroom door to stop my three-year-old nonverbal son going exploring. In this case I’ve made it to bed, the pre-bed routine has been executed, no loose wires, plugs sealed, juice and biscuits left on floor, night light on, check, check and check. He sleeps in our room as you’ve guessed, in a door-less tent that is so comfortable looking it makes me envious every time when I get into my stupid adult bed. My son is too much of a danger to himself to be in his own room, we tried it, it didn’t work, he doesn’t understand that he is hurting himself and if he were to get out of his room then it’s his worrying obsession with getting down our stairs. It’s a terrifying thought, there are a lot of terrifying thoughts when you have an autistic child.
So he’s in our room, I like it, my wife does too, we feel safer knowing we are there for him if he needs us. It’s the him not understanding that breaks my heart and knots my belly, the thought of him waking up alone in his room not understanding why we aren’t there, well it sucks and then some.
My son, Beau, has not had a constant sleep pattern since birth, anything that has stuck has only lasted a week or two. So we are constantly trying to adapt to his pattern, it’s exhausting and upsetting at times, but that’s autism life right? It can range from a 6pm settle to 3am wake up to a 10pm settle to 7am wake. He had a week of waking up bang on 11.30pm that was a fun week. And no before you say ‘Nap’, it quite simply doesn’t work for two reasons:
1. HE DOESN’T WANT TO NAP
2. HE DOESN’T WANT TO NAP
Sometimes exhaustion gets the better of his fired up little brain and he succumbs, at a price, a nap in the day no matter how short, means he will be up until late. No Netflix and cuddles, sorry Mummy and Daddy.
So my head hits the pillow, its 12.30 am, I have work the next day, I stayed up later than I should have, be it losing track of time on the PlayStation or binging on Netflix. If I’ve had a beer I use my snoring spray (beer makes me snore) from my wife’s strict understandable orders. I stick to light beers mainly, anything stronger I will sleep on the couch with my alarm set. The bedroom is dark, Beau’s night light looks like a moon, it’s usually the last thing I see before I sleep, then it happens, the first stir from the boy, I instantly work out his sleep pattern from the last twenty-four hours, has he got reason to be waking up? I was so quiet, I was, wasn’t I? I didn’t hear anybody in the street, I’ve cursed so many strangers under my breath for walking past my house making noise, my wife is fast asleep, she has trouble sleeping due to migraines, I’m glad she sleeping, she doesn’t half deserve it. Another stir, he has rolled over, I hold my breath, I’m working out the hours I could get away with not sleeping then going to work, I know my wife will most probably have to take over at some point so I can rest. She won’t mind but I will. Silence.
My wife’s voice, how long was I out? Oh god, the snoring spray, I forgot the snoring spray, she’s shaking me awake.
“HE’S STIRRING TAKE YOUR SPRAY”
I take my spray, minutes pass, she goes back off, Beau seems still. Phew I blagged it, close one, Beau then proceeds to let rip the biggest, loudest break of wind I’ve heard a three-year-old do, the silence of the night and his nappy amplify it. He stirs even more now, the domino effect has begun, the stirring will increase until he’s in between me and my wife on his iPad. It's 2.30am. Game over. He goes off at around 5.30am, so my wife can grab a few more hours before our eight-year-old Aspie angel bolts up next door, seriously, she bolts up on her bed awake like Frankenstein. Like Beau she has a fired up little mind that seems to cancel out sleep, bless her, she is in the waiting line for melatonin, Beau has this as well, it helps, hopefully it helps her. Time will tell.
I don’t miss the sleep; this is a journey I am immensely proud to be on. It’s exhausting, upsetting and wearing on times, but autism or not, that’s parenting. As Beau gets older and understands better, we will of course try his own room again, but at the moment I’m loving having my special little Auty boy right where I want him. Sleep or no sleep, there is just him, that’s all I know.
Dominic writes about Beau and their family adventures at Autism Dad.
The content of these blogs/webpages reflects the thoughts, opinions and experiences of the individual writer and does not reflect the views of Family Fund. Always consult your doctor or other medical professional before taking medical action or changing your or your child’s health routine.