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The Jehoshua Novels


A Personal Note

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 Then I was told later that one of those posts referred to a news item a year out of date and all I could do was chuckle.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

11 comments to A Personal Note

  • Kathy Kattenburg

    Steve, you can be really sorry that you wrote some crappy posts today, but I’m not. I’m glad you wrote those crappy posts, because I didn’t read them and don’t even know which ones they are, but I did read this post apologizing for them, and sharing what’s going on in your life right now, and it was the most moving post I’ve read in a long time, and if you had not first written those crappy posts, you would not have written this one. And that would have been a real shame.

  • It’s ok Steve. I have a 14 year old daughter with ASD. And I care for three other children as part of my workload. I’m glad your son has language. Two of the children I care for do not. And Kathy says it all. Thanks for writing this post.

    One of the kids just loves repetitively opening up The Cat in the Hat app on my tablet, listening to the first page, exiting it, going to the home screen, scrolls back to the screen of kids apps and then begins the sequence again and again. And then curls up into my lap and goes to sleep. That is what life is all about at times. Words and blogs will come again.

  • adrena

    Your son has an awesome dad.

  • actor212

    Brother, I don’t envy your task. My brother is developmentally disabled and while he’s high functioning, he’s also somewhat autistic, a combination of genetics (it runs in the family) and learned behavior.

    It’s very difficult to guide him and often just easier to do things for him, but of course, he’s aware enough to understand that he really ought to be doing them himself, which makes him feel worse.

    And he has a very hard time speaking out on his feelings about it. So he engages in really awful passive aggressive behaviors sometimes.

    Good luck, my friend and keep this in mind: this is just a blog.

  • Cheryl Rofer

    Give him a hug for me, Steve, if you can catch him!

    To everyone else: he really is a delightful child, and Steve is indeed an awesome dad.

  • someofparts

    Back when I worked a night shift at a local paper we had an editor who was the proud father of a new baby. He was up all hours with feeding and whatnot and it showed. He would come to work with his hair awry and shirts buttoned out-of-alignment.

    Still, the funniest result of his distraction happened when we reported on the new Pope. This was ages ago and it was a big deal that they had chosen someone who was not Italian. Our photo caption was supposed to read ‘First Non-Italian Pope’ but instead we got distracted and ran it as ‘First Non-Catholic Pope’.

  • Thank you, everyone, for such kind words. Graham, I realize every day how lucky my son is to be at the communicative end of the spectrum. He may not be a great one for eye contact, and he may well give you a line from a movie or a TV commercial as an answer (although if you know him, you can usually figure out what he means to say by it) but he will hug and say “I love you” and he’ll ask for what he wants. I know I have a far easier life than many looking after autistic kids, and I know he has an easier time of it than many others too. I do know about repetitive viewing behavious though – and I’ve seen certain scenes in movies more than I ever want to. Beetlejuice used to be one of my favorite movies, but alas… :-)

    Someofparts, that’s an awesome mistaken headline! One for the ages.

  • KayseJ

    Steve – You do so much that is spot-on that a few moments of diversion, especially this time of year, are nothing to apologize for. My episodes of CRS seem to be increasing frequency.

    When Sean Paul announced he was backing off, that you would be handling the site, I figured things would change, that it wouldn’t be the same. You’ve proven that the integrity of the site is still strong, and no, it’s not the same in that you bring your own style. Yes, it’s different in a very good way. I’m glad I dipped my toe back in and started occasionally posting again…the water is just fine here.

    A cyber hug from me, too.

  • So, after both of us actually getting a decent night’s sleep on Monday night, last night around 11ish Jason started to complain of a very sore tummy. It got to crying levels of pain and then he started in on the vommiting, poor wee soul. I’m guessing maybe a tummy bug, maybe simply severe trapped wind. We finally got to sleep around 3.30am and sleep was extremely fitful for most of the night although he’s now pain-free and cheerful if rather tired, so today we’re taking things a wee bit easy.

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