02 April 2013

Autism Awareness is every day!

It's Autism Awareness Day once again. At least, it is everywhere but Canada, where we inexplicably celebrate it in October. *facepalm*

I wanted to say, "Is anyone still not aware of autism?" but a quick look told me that many many people aren't aware of what it is, even if they know it exists. The ridiculous prejudices that autistic people experience are still pervasive, even if the refrigerator mother theory isn't (though I've still actually seen this one spouted!).

Exhibit A. Autistic kids are:
 Yes, autistic kids are all of these things. Except when they're not. And FFS, can we stop using the word "retarded"? Don't be so lazy. If you want to insult someone, there are plenty of other words that aren't hateful toward those with intellectual disabilities. And if you mean 'intellectually disabled', say that.

Exhibit B: Autistic people are

Yes, autistic people are all of these things. Except when they're not. Well, I'm not sure anyone is a flash blog, but you know what I mean.

Some kids are smart. Some aren't. Some people are rude. Some aren't. Are you seeing the pattern? If you've met one autistic person (child or adult), you've met one. They're all different. Just like you and me.

And then there's the hatred and fear
Exhibit 1:

 Autistic kids should be killed?! That's the first hit on "autistic kids should"?! Do you see a glimmer of why I was so angry when I heard the media blaming autism for the Newtown shooting? I knew this would happen.

So, let me give you an awareness of autism on an average day in my house:
6am Pop wakes up, wants breakfast. Tony is the morning person, so he gets up with him.
7:30 Tony wakes up Snap for school. Snap cries.
7:40 Tony wakes up Snap again. Tells her to get up NOW or she'll miss the bus.
7:50 Tony yells at Snap that she MUST leave now. Snap gets up, puts on dirty clothes, either puts on makeup and does her hair or does nothing at all, leaving with bedhead and sleep in her eyes.
8:00 Tony tells Snap if she doesn't leave this instant, she'll miss her bus, be late, and will lose her computer for the evening. Snap calls Tony an asshole. OR Snap cries and screams. OR Snap curls herself into a ball and says, "I am so stupid and useless."
8:05 Snap leaves. Maybe makes the bus. Maybe doesn't.
8:30 Snap phones from the bus to apologise for yelling at me last night.
8:45 Tony wakes me up and then leaves. (Yes, I sleep in. You'll see why soon enough. Also, this only happens on the days Crackle sleeps in. But these are more often than not lately, so...). I drag my ass downstairs and make myself a triple espresso.
9:00 Crackle wakes up. This varies between 6am and 10am. But 8:30-9 is about average. When he wakes up, he gets his medicine. This involves me mixing up about 12 supplements into a nasty concoction and having him drink it. He does. Like a champ. Then he gets his seizure medications.
9:15 Crackle eats breakfast. Pop is either playing trains, watching Cars or Super Why, or running around after me telling me to sing him the ABCs in French. I check Google Calendar to see what my agenda is for the day. Check for appointments with occupational therapy, speech pathologist, counselor, behaviour consultant, school representatives, Snap's teachers, doctors, psychiatrists, psychologists, dentists, specialists of various sorts. Call the autism funding unit to fix whatever the latest fuckup is.
10:00 The SEA arrives and takes Crackle upstairs for therapy. Pop has Second Breakfast. We think he's a hobbit. Or maybe a leprechaun, because his feet aren't hairy, and he only weighs about 30lbs, even though he's 4. Throw in a load of laundry and sit down and try to read FB or Twitter for a few minutes.
11am Pop and I do housework, or play trains, or go to the garden, or hiking, or grocery shopping.
12:30 Lunch
1pm I take a turn doing therapy with Crackle. Pop and the SEA do play therapy. Some days, like today, I have another SEA here. These days are rare, and I use them to catch up on laundry or chores that require going downtown. And somedays, I sit on my ass and read Twitter. Or blog.
3pm Get snack for the kids. Prepare a bunch of stuff to make for supper - all meals are from scratch. There are no convenience foods. At all. Nor are there restaurant meals. Maybe cram in picking up Snap from school if she's had a rough day.
4pm SEA leaves. Some days, another one arrives. These ones need training, so we do some training work.
5pm Start making supper unless it's a day with no late SEA, in which case, play with the kids.
6pm SEA leaves. Tony gets home from work. Start making supper.
7pm Supper is ready. Fight with kids to get them to eat something. Or, try to stop them from fighting each other to get the last piece.
7:30 clean up, get Crackle his nighttime meds. Put Jeopardy on the TV and call it brain nourishment.
8:00 bath time.
8:30 While ears are ringing from bathtime screams, wiggle kids into pjs. Brush teeth. Hold kids until they fall asleep. This usually involves some playing, fighting, arguing, singing, books, popping in on Snap to remind her  to do her homework, because otherwise it won't get done. Yes, she's in Gr12. Yes, it's still necessary. Threaten to shut down computer privileges. Listen to her call me a fucking bitch. Calmly respond that if being a bitch means making her do her homework, then yes, I will wear that with pride. Walk out and mutter swears under my breath.
10:00 Watch a 10pm TV show while cleaning up, baking food for tomorrow. Try to catch a few more minutes of FB and Twitter.
11:30 Fall into bed.
12:30 Crackle wakes up for the first time. Crawls into bed with me. I can't go back to sleep. Neither can he. Go crawl into his bed, which is too small and brightly lit. Let him play.
1:30 Fall asleep.
2am Crackle falls back asleep.
3:30am Get up with sore back and go back to bed. Be unable to go back to sleep.
4:45 fall back asleep.
6am Pop wakes up. Start over.

Every time they eat, they get supplements. So in there somewhere, I'm usually ordering new supplements.And, every time they eat, I go through a "well, what do you want?" "EH!" "I don't know what that is. Can you point to it for me?" "EEEHHH!" repeat cycle with Crackle. It's very hard to tell someone you don't want hamburger but you do want the ketchup when you are non-verbal.

 Yes, they work. No, I don't want to argue this point. I know, because we ran out, and it was awful. Every time I go into my bedroom, Crackle has a temper tantrum because he wants in there too, and he's not allowed during the day.

On top of all that, there's the usual stuff. Cleaning, paying bills, keeping the van filled up, taking the dog to the vet, going to the chiropractor for my messed up back. The usual.

And you know what? I'm not complaining. I love my kids. I love my life. It's crazy and hectic and awesome. Doing therapy with the boys is FUN. Really. Playing with them is fun. It's just different and a LOT of work (the cooking is really the hardest part). I do wish Crackle could sleep. That would help us all a lot.

Now, if you want to help, there are a few ways to do it.
1) You can send me money. I'm not kidding. I will use it to go back to the Autism Treatment Center of America for more courses. They're the best thing I've ever done in my life, other than actually having the children and marrying their awesome father. Any leftover money I raise I will donate to them so that they can give a bursary to someone else.
2) You can donate money to the Autism Treatment Center of America. Or the Victoria Society for Children with Autism. Not Autism Speaks. Never Autism Speaks.
3) You can offer to babysit a child with autism so their parents can go out.
4) You can offer to do free housework for a parent of an autistic kid.
5) You can volunteer in someone's Son-Rise playroom.