(Oh, and props to Neil Peart for letting me borrow that phrase in the title. It's from "Grand Designs." Anyone who knows me knows of my admiration for Mr. Peart's writing abilities. I'll probably quote him a lot because I like him and he's cool. He ROCKS, man...he just...ROCKS. And he didn't really let me borrow it...I guess I stole it. I don't think he'll mind.)
Anyway. Life as I know it revolves around S. Sometimes it gets really old. We have to hunker down like generals over maps and plan the simplest drives to make sure we won't pass the golden arches at an inconvenient time. Are we going someplace he's never been? What if he freaks out? What if there are breakable items there that we can't afford to replace? What if (gasp) there's a VCR he can get his hands on and fast-forward/stim to his heart's content? Have we packed an adequate supply of the 5 things he will actually eat?
The incredibly shrinking life.
Friends fall by the wayside...they (whoever THEY are) say that friends are supposed to stick close through the tough times. Well, THEY didn't know anybody with an autistic child, I'm quite sure of that. Friends don't know what to do with families like ours. They make vague promises of help, but somehow they never materialize. There's no such thing as a simple "drop the kids off here and spend the afternoon however you want." Okay, sure. But first you'll need to enroll in our simple 16-week course called "How to survive an afternoon with an autistic child...and live to tell about it!" Call now and get "Changing the Diaper of a Seven Year Old the EASY Way" - FREE!
Our social life consists of time spent with family...people who know us and who have long since autism-proofed their homes. We love them...we are grateful for them. But it's not nearly enough. I miss hanging out with other women, and doing artsy-crafty things...I miss worrying about how my home was decorated. Now housecleaning consists of shoveling the Thomas trains out of the middle of the hall with my foot as I stumble through to start another day.
My husband misses out on the friend factor as well. Guys have a hard enough time expressing themselves...and when one among them has real problems, it seems they don't know how to handle it. They want to fix it, and while I really wish someone could, they can't. And it just seems hard for men to let each other talk and mourn. That sucks. At least my friends will cry with me and not immediately try to come up with solutions. Sometimes all you need is another presence...someone silently lifting some of the burden and holding it with you for a while.
When you view the world through a tunnel, as we do, focusing intently on what is RIGHT in front of us, dealing with each minute problem that is actually HUGE...it's hard to understand other people and their problems (many of which seem trivial and ridiculous). I find that I have ZERO tolerance for people who won't use their brains. Every day I see people squandering good health, healthy children, financial resources, and it makes me sick. Bitter, even.
But then life shrinks a little more, and the tunnel vision refocuses...and life crystallizes. Get through this day. This minute, sometimes. Savor the quiet moments, rare as they are. Watch for the victories, tiny as they may be.
Sometimes, the simple act of watching two brothers walk side by side on a path through the woods, as brothers have done for generations, widens my worldview. Just a little.
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