I figured it out.
Not that average three-year-olds aren't exhausting in their own right, but a three-year-old with Autism AND Epilepsy has just plain old... [insert your own word to describe just how tired I am. I'm too tired to get a thesaurus to look one up].
I figured it out while I was making beds. I do some of my best thinking while making beds. It's the constant vigilance that makes you feel like you've gone off the deep end.
You don't ever, ever let your guard down, or you end up with things like the poopy potty incident (which I care not to discuss), or children being crushed by dressers, or you're stuck figuring out why the in-out mechanism on your DVD player doesn't work.
You can't leave her alone in her bedroom because she stands on the one inch wide headboard to look out the second-story window, and she needs reminding every 15 seconds to get down. You can't unload a dishwasher without her opencloseopencloseopencloseopenclosing the darn thing (or a cupboard, or the fridge, or a closet for that matter). You cannot for an instant let her out of the confines of the fenced back yard lest she run out into the street, heading for the park, and may or may not obey the command to stop. You can't just let her play at the park, watching from a distance, because she'll grab the cute little 2-year-old girl by the scruff of the neck and try to hurt her.
By the end of the day, you're exhausted. So much effort goes into what ABA refers to as "shaping" her behaviour, prompting her for appropriate responses and modeling them. And prompting. And modeling. And reminding.
Before you know it, it's 8 p.m. and you've just reminded her for the 25th time that day to stop banging her head on the plate glass window in the living room (and try redirecting her somewhere else without resorting to Raffi, again), your house is a mess because you can't keep up with both her and the toys/dishes/laundry/animal hair through the day, and the baby accidently took a nap at 7 p.m. when you weren't paying attention so now she's up until 11 o'clock, easy.
But then you finally get down time, of some sort, where you're not hovering over that blonde, curly-headed mop trying to "shape" appropriate behaviour and generally try to keep her from hurting herself, others and your property.
The vigilence has seen us through another day.
You finally crash at about midnight, with two loads of laundry still unfolded but at least the dishes got done, and you get a good, solid two hours until Abby starts screaming in a night terror and takes over an hour to come down and settle back to sleep, just in time for the baby demanding to be fed.
So the vigilence, then, really doesn't get to sleep either, now does it?
There's constant medications/supplements (at last count, we use eight medication syrings a day, plus one pill), two-hour waits at the doctor's office with your phobic child for a two minute appointment for a medication refill because he won't write a script for more than a couple months at a time. There's the constant reordering of medication because the compounding only has a two-week shelf life (and the dose is not available in pill form).
Does it sound like I'm complaining? I guess I probably am. But hey, it's my blog, and I'll whine if I want to.
I guess what I'm trying to say is that it's that constant vigilence, the never being able to let down your guard, that I find so trying. I am thankful everyday to God in Heaven that I'm not needing to keep vigil over the seizures, and the vigilence required for the medication regime is an acceptable price for that.
But the behaviours that never seem to change. The having to repeat, repeat, repeat, and feel like I'm getting no where with my child. It's depressing. It's discouraging. It's exhausting.
It would be nice to let my guard down a little bit.