Today, I wrote two crappy posts. I mean really bad ones. Posts I read back and thought that I could have turned into something useful on another day but not today when my mind felt stuck in glue. Then I was told later that one of those posts referred to a news item a year out of date and all I could do was chuckle. What a terrible day’s blogging. I’m not even sure if this is making sense or is worth doing, but I felt I owed you all an apology.
In my defense, my youngest is going through one of his periodic sleep disruption phases right now so I’ve not had a lot of good sleep over the last three days. Jason is nine years old and autistic – high functioning but still requiring 24/7 care – and my main job in life is being that carer. Cheryl, who has met him, will tell you as I will that he is the most amazing little guy you could hope to meet. Over the weekend he stopped sleeping through the night and started in on irregular periods of a few hours sleep followed by several hours hyperactivity. He’s old enough to get up on his own, wander around the house, get himself a drink and play on his computer games – or do something he thinks is fun but is potentially dangerous to his health or the house. I’ve been dozing on a hair trigger then waking up every hour when I do sleep and have to be awake when he is just to keep him safe. I can’t just put him to bed, tell him to stay there and to go to bed, like I could one of our other kids when they were his age. It wouldn’t compute and just going to sleep isn’t always possible for him in any case. So right now, excuse me but my critical thinking and writing abilities are in the trash somewhere.
The bright side: my son is at his most creative at these times and it can be wonderful to experience. He draws such awesome pictures, involved stories with actual perspective in the art (which he taught himself). He makes new connections at such times, learns the most, and says his most perceptive and amusing things. “I’m naughty but it’s not me, it’s my glitch – Santa shouldn’t put me on the Naughty List”. “Mommy, according to my careful calculations Daddy is much bigger than we are.” I get dingy and we play the silliest and funniest word games as we snuggle. “Jason, you’re a snook!” “Well, Daddy, you’re a snook-twidget-fidget-googley-herp-derp-niblet-snook!” (Niblet, possibly the dumbest cat in the world, has become the ultimate byword for derpdom in our house.)
So no, I’m not sorry I’m experiencing all this – it’s part of the sometimes frustrating but always wonderful adventure that sharing his life is. But I’m sorry my blogging is crap today.
I’ll end with this via the facebook group “Autism Spectrum Disorder, through my eyes“:
What is Autism
IMAGINE if…You had a bee buzzing around your head And someone asked you to say the alphabet backwards IMAGINE if…You were in the middle of a really loud rock concert And someone wanted you to name all your aunts and uncles IMAGINE if…You were wearing three pairs of gloves. And someone told you to eat a box of raisins one by one This is what things are like for me, a lot of the time.
I’m autistic…. Your brain is like the inside of a computer, full of connections and wires. With messages to your body whizzing around telling you what to do. My brain looks the same as yours, except some connections work really well, and some work really differently. And my brain wires can get crossed really easily. So, if I’m doing something a bit funny looking… try not to laugh at me. It’s just one of my brain connections clearing itself out. And if I tell you something over and over… just ask me to stop repeating. It’s just one of my wires plugged into the wrong socket. And, if I freak out at some sound that you think is really normal… maybe help me get away from the sound.It’s just because my ears have their own unique volume control.
And, if you think I’m ignoring you… I’m not. I’m probably just focused on something else, like a tiny spider on the ceiling on the other side of the room. Autism is a different way of seeing the world. And seeing things the way I see them is awesome, but it makes me really tired sometimes. So, I might not always understand what’s going on. And, I might need time by myself to think things through. Or, I might crash or jump or swing for a while to straighten myself out. Don’t worry if I don’t always do things the way you do.
Try to imagine what it’s like inside my head, then you’ll see… I’m not being rude I’m not being naughty …I’m not sick… I’m autistic……and I’m just being me.
By Chris Evans
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