09 July 2011

Autism is kicking my ass

Crackle and Pop take a "Verbal Behaviour Through Music" class for children with Autism on Saturday mornings. It's parent participation (ugh). What it ends up being is parents singing the songs, desperately trying to get their kids to participate in some meaningful way. Any parent whose child cooperates wins the day. At least that's how it seems to me. I heard one mother mutter, "Just open your mouth. That's all I ask. Just open your mouth." We were trying to get the kids to make various sounds and do various mouth exercises (chomp teeth, stick out your tongue, puff your cheeks). Hahaha. Pop cooperated more than all the other kids combined, but that's only because we had bubbles to blow at him. Still, I'll pretend I'm just a better parent that the others. It'll give me the boost I need to get through the day. :)

I like going to those classes. I like seeing that I'm not the only parent going insane trying to teach my kid the things that come naturally to other kids. MrFCS and I have noticed The Look. The Look that all parents of kids with moderate to severe autism have. The utterly exhausted, totally frustrated, helpless desperation.

Today, I'm sporting that look. Usually I can fake it pretty well. But today... eesh. Crackle has had me hyperfocused for a long time. In a nutshell, no matter where I am, or what I am doing, I have to know exactly where he is and listen for what he's doing. Everything in my house is locked down. Everything. Bathroom doors, cabinets, drawers, bedroom doors, closets. God forbid anyone leave a door open. I've got the monitor velcroed to the computer desk, and the case velcroed to the wall. Anyway, having to be that constantly aware is really exhausting. And lately, he's taken to peeing on his floor again. He'd stopped doing it for a while, quietly lulling us into a false sense of security. And now? Two to five times a day I have to shampoo part of the rug in his room. I wish we could pull up the rug and put in something else, like cork or something. But that is not happening any time soon, if ever.

Today? Crackle peed on the floor 3 times. Stuck his head in the toilet once. Peed in the sink once. Had a screaming fit 3 times. Got into the fridge I dunno how many times. Stuck his hand into my shirt more times than I can count. Pop demanded to eat, refused to eat, demanded to nap, refused to nap, refused to take his medicine, demanded to eat again, refused to eat again, pushed Crackle, cried when I got him dressed, cried when I got him undressed, ate, and then broke out into a rash and fell asleep. Snap? Screamed at me when I called her name because she was already downstairs, called her brother a retard (a huge huge HUGE deal here), told me to fuck off, did a half-assed job of her chores, repeating the same mistake she always gets shit for, and then asked me for a favour.

SO HELP ME GOD if anyone tells me that any of this shit is normal. Do you go up to a mother whose child is in a wheelchair and say, "Sometimes my child won't walk either"? Listen pal, your kid acts up sometimes. This is my kids' normal. And mine aren't choosing to do this. It's how they are.

All this is why parents need more support with our kids with autism and other special needs. Autism treatment isn't covered by medicare. Their medical needs are ignored. The respite is laughable, and if you are lucky to have some money for it, you're on your own to find someone who can help. "Just get a babysitter!" a former friend told me. Really? You think I can find someone who can keep the boys safe, just like that? I RUN, regularly. I'm forever screaming NOOOOOOOOOOOOOOO! as I'm running toward them, keeping Crackle from pulling down something on his head or drowning in the toilet. Going out with both of them is virtually impossible without leashes and OMG the dirty looks (especially in hippie Victoria). If I could get all the treatments they need, they still wouldn't be neurotypical, but maybe I could find someone whom I could trust to look after them for a few hours.

Write your MP. Ask them to support Autism treatment under medicare. Because we need the help.

(p.s. What the hell is with the new compose thing in Blogger? AGAIN? Grrrrrrrr.)


Betty Fokker said...

They recently found that having a kid with autism gave parents PTSD. Your job IS as hard as you think it is!!

Luna said...

I'd love to read that study! :)

Anyway, thanks for knowing I wasn't just whining. :)

Terry said...

Luna ... I did bookmark your blog. :)

You should so re-post this over at Dawg's assuming there's a wider readership there ... people need to hear this.

Luna said...

Thanks Terry. I think I just might. And thanks for your other comment too. Best compliment I've had in ... Ever. :)

Terry said...

Luna, glad it resonated.

I've been a school psychologist, met a few autistic kids over the years, but never had to walk the walk as you do ... tell it on the mountain, for sure!