Recently I’ve been concentrating on kiddo’s sleep patterns on my blog. Or lack of anyway. I’ve frequently been suffering from nights where I have managed 3 or less hours sleep. 
Now I see other people’s posts about their kids and their lack of sleep also and it made me think. Why do I struggle so much more with the lack of sleep than others? Why am I making such a fuss? Am I just inadequate at this parenting game? No. Because for a mother of a child with autism, lack of sleep is a completely different ball game. And here’s why…

Kiddo has many quirks which directly result from his autism. They are what make him who he is and I wouldn’t change them for the world. But some days they are literally life threatening. And those days follow a night of no sleep. 

His lack of danger awareness is alarming on the best of days. But if he doesn’t sleep, it becomes even worse than usual. I didn’t think this was possible, but after a night of no sleep I find him “bouncing” on a wooden side board, or climbing up a French dresser, most likely just so he can see the world from a different angle. The realisation that he could hurt himself just isn’t there. And I cannot take my eyes off him. Not even for a minute.

Following a night of no sleep, his senses are even more out of sync than usual. He craves unusual sensory input, but does not have the brain power to work with me on his sensory games. He has no capacity to understand instruction. So what does he do? He finds this sensory input himself. And it’s hell. Yesterday, after a particularly hyper half an hour where he was running into walls and rolling his head along the floor, I thought I had calmed him enough to leave him in his safe space for 1 to 2 minutes whilst I fetched some medication for him. Not twenty seconds after I had turned my back I heard an earth shattering thud and a scream. My blood ran cold and I flew (it literally felt like I was flying) up the stairs. I found kiddo on the floor with a bruise to his head. He must have jumped from the window sill, which I had spent the last half an hour preventing him from doing. But the need to seek the sensory input was too great for him to resist. All due to a lack of sleep.

When kiddo doesn’t sleep his frustration levels are eccentrically high. Like any child I guess. Only it isn’t. He cannot communicate any need or want. He cannot tell me how tired he feels. Instead, the violence comes. And it comes with force. Toys, mugs, bags, any object he can find will fly across the room. He is so frightened. He cannot control the feelings inside, and I cannot explain to him what they are and that it is normal to feel this way. Instead, he is engulfed with fear and as the main caregiver I am often on the receiving end of the violence. I will count my bruises at the end of today and pray that they have at least helped the kiddo deal with his emotions in some twisted way.

After a night of no sleep the world is a warped and terrifying place for the kiddo. And he and I both know it. The meltdowns are frequent, at things he would normally tolerate. The screaming is eat piercingly painful, the tone a dagger to my heart and soul. You would think your own child was on fire. To him, his brain actually is. All I can do is protect him from his environment.

So when you see a post from an autism mum complaining that she has suffered yet another night of no sleep, please don’t think she is moaning about her lot in this world. It’s not the exhaustion, it’s not the physical or mental effects of sleep deprivation, she is frightened. She is frightened of what the day holds for her child. She knows she can’t protect her son or daughter enough. Will they end up in an ambulance again? Because the sensory seeking is deadly (kiddo has done this before). Will I end up in A&E when the self harm becomes to much? Will the bruises hurt too much for me to sleep tonight?

We don’t want sympathy for feeling tired. The whole word feels tired. We are terrified of keeping our most prized possession safe. And for that we need our friends and family more than ever.

Thanks for reading,

Danielle