01 April 2015

What do we want? EVERYTHING!

Yesterday, I wrote about Autism Awareness. Today, I want to talk about what we need, as caregivers of people who are autistic:

Money. OMG, we need more money. Our blessed government gives us a significant tax break, and that really does help a family who makes a good living. It doesn't do much for those in the lower income brackets though. How they manage, I couldn't begin to imagine. And near as I can tell, BC is the best province to be in when it comes to autism. We get money we can access semi-directly (bureaucratic layer) to hire people to work with our kids, pretty much however we see fit. That's great, but once they turn six, it's only $6000/yr. $500/mo doesn't go far when the behaviour consultants all charge between $100 and $120/hr. I don't bother with them any more. I wonder who else doesn't. Speech therapy? Same. Occupational therapy? Slightly less, but not much. It's gone in seconds. I figure we shell out, from our own pocket, about $15,000 per year. And you know what? I could spend FAR more getting them proper treatment.

Compassion. OMG, we need more compassion. The next time you see a kid having a temper tantrum in a grocery store, assume he has autism instead of assuming his mother is a shitty parent. Even if she's standing there, reading a label while he screams. ESPECIALLY if she's standing there reading a label while he screams. Staring doesn't help. Smiles do.

Research. Yes, please, keep researching the causes, but better yet, work on treatments. No, I didn't say cures. I said treatments. Things like B12 therapy that work so well for some. Amantadine is a wonder drug for some. ADHD drugs work really well for others. Some do well on lamotrigine. I don't want drugs so that these people can be "drugged into submission", but rather to take the edge off of the compulsions or the sensory overload. So they can learn things and have conversations. Even if they're by iPad or letter board. Nothin' wrong with that!

Gender neutral toilets. Listen, my kid is only 9, and I live in a tolerant city. But when he's 13 or so, I'm going to start having a hard time taking him to the bathroom in public, and no, he can't go on his own. Please please please, gender neutral bathrooms like this one (at my church, of all places!)

Understanding. This goes along with compassion, but it's not quite the same. Yeah, I have different issues as a parent, and my kids have different issues as kids (and will as adults too), but that doesn't make it a tragedy. Don't say, "I'm sorry" if someone tells you their kid has autism. Please. I know it's hard to know what to say, so how about trying, "That should give you some interesting challenges!" with a big smile. :) My kids aren't a tragedy. Their autism isn't a tragedy. They're different. They have different issues, many of which need a LOT of extra help, but they're people. Full people.

PEOPLE WITH AUTISM, AUTISTIC PEOPLE, ARE PEOPLE. This shouldn't be a huge leap for people, but it seems to be. They are full people, with feelings, with opinions, with thoughts, with intelligence. Same as you and me. Sometimes they're right. Sometimes they're wrong. Sometimes they're lovely wonderful people. Sometimes they're assholes. Sometimes they're compassionate. Sometimes they're rude. JUST LIKE EVERYONE ELSE.