Information for parents of disabled children

Wednesday, September 23, 2009

I Vant To Be Alone!

Cover of "Overcoming Autism: Finding the ...Cover via Amazon

And other things that aren't going to happen.

Today was not a typical day for me. It was much, much worse. Last night, I got to take an ER excursion that I can’t pay for to determine if I had appendicitus. Good news! I have a bladder infection that could take down a small horse! So that’s all right then.

Maybe it’s because I feel like I’ve been hit by a truck, or maybe it’s because I let myself watch too much news today. Whatever the cause, I’m mad. I resent that one day not cleaning my house means two days making it right again, not that it ever gets to right and stays there. I resent being a single mother with a husband because autism can be harder to deal with “for the man”. I want to scream that it isn’t fair, even though I hate the “Why me?” crowd.

Mostly, I resent that nothing ever gets finished in my life, and no one else is ever totally satisfied with my progress. A typical day for me starts at 6 Am with the chickens. Kid no. 1 must be dressed, medicated and on the bus by 6:45, then kid no. 2 has to get up and dressed. She gets dropped off at a private kindergarten, lunch in hand, because it’s that or I can quit the “at will” job I have to stay home half days every day. Then kid no. 3 must be put on a bus. At twenty minutes after eight, I am “at liberty”, unless I work that day.

At my son’s school, I substitute and love it because I know every kid, love every kid, and I’m an expert on disability thanks to my life. It’s also the only possible job and tons of us moms work there. Day care won’t take some of our kids, you know. Too disruptive. Legal liability and all that. You understand. So we work their schedule, their very abreviated schedule.

If I’m not working, I make coffee. I drink coffee and look around to decide what fire gets put out first. After coffee, I begin the first of approximately five loads of laundry that I will do today and fold as I can. I vaccum if I’m really lucky. I shampoo floors and couches and wash walls. This must be done at every opportunity since kid no. 1 can’t help but make food messes and touch EVERYTHING. If I could be really liberal in my thinking, maybe I could see it as concept art. Alas, that’s not me.

On days when I help in advocacy for parents, I spend time online or making calls. I try and set parents up with help where they need it. Occasionally, the need arises to organize a few barely attended events for parents who know nothing about the system yet, but need desperately to learn before it eats their child’s opportunity for growth alive. I wish that was over-dramatic.

But today, I didn’t get to do any of those things. I got to curl into the fetal position, until it was time to throw up again. I resent that too. Time away from that schedule for me is crippling. It can make my life ridiculously difficult for weeks to come. Add to it that I can’t afford to get sick. I can’t afford to die. What am I saying?

In the ER, I read “Overcoming Autism” while I waited for tests, then picked up my meds to scoot home just in time to medicate the unmedicated and put everyone to bed. My husband’s idea of supervision and mine do not meet.

You know what? I am technically unemployed, and one of those drains on the system everyone else gets so wound up about, but I don’t think I’m lazy. I’m too exhausted to be lazy, still how much of a failure can I feel like?

Then there are those people who overestimate my ability to tackle the symptoms of autism, including family . My son started pulling his pants down for no real reason this last week. Yeah, you’d think there would be a very clear reason, wouldn’t you? Every now and again, I don’t know he’s done it and a “window incident” occurs. Oh, there is no greater joy than having your husband ticked off because kid no.1 was in the window again. It’s my failure to control circumstances that put him in that window, I guess.

Here’s the thing; the amount of work it took to get him here is unfathomable. Repetitive tasks at the store and at home. Constant verbal reminders to do a thing. Nights when he had such sleep disturbance he slept ON TOP of me. There was screaming and police calls because people thought we were beating him or killing him. There were choices about side effects and outcomes. You can’t imagine what that’s like, especially knowing that the difference it all makes could be great or miniscule depending on the will of God. So, I guess what I’m saying is “ Get off my back, People! I’m working over here!”

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