Autism

Please, go to sleep...



My autistic daughter hates to go to bed. She loves to sleep, but she hates the lack of stimulation that's required for her to wind down enough to actually fall asleep. So I have to sit with her every night for a little bit until she dozes off. My presence keeps her from getting back out of bed, turning on the lights, and staying up all night playing.

Last night, though, she just kept babbling to herself, and babbling and babbling. I took this video at about 5:30am. I'm so glad for the iPad and the iPhone. A few years ago, I would just have to sit there in the dark and likely would nod off, myself, before she did and would wake up in my chair an hour or two later to find her out of bed and playing with her toys. Now I just watch netflix until she goes to sleep. Last night I watched about half a season of Warehouse 13.

ref=sib_dp_pt

A few months ago, when I heard about
this book for the first time, I laughed like a crazy man through the entire thing. It was perfect.
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Bedtime

There are days when, despite all the peculiarities of my kids, I do a great job as dad and I take care of and teach my children. I finish the day feeling good about them and our lives as a family. On those days I feel like I've won.

And then there are days when I feel like I've been soundly defeated.

My daughter is severely autistic. She can't speak. My parents and her teachers will argue with me on this point, but, despite knowing a handful of words, she simply can't use them in any meaningful context. This makes taking care of her remarkably difficult. She doesn't really like to go to bed because the time between laying down and falling asleep is a time where she gets very little stimulation and she leads a life
devoted to stimulation. From her sense of touch to her sense of taste to her sight, she is always sampling her small world. The dark softness of her bedroom is the opposite of interesting and therefore a form of torture for her. Since she hates sitting still and falling asleep, I have to sit with her every night in her bedroom diligently watching over her and making sure she actually stays in bed. She has to have this time of no stimuli or she'll simply never fall asleep. If I were to let her decide her own bedtime, she'd simply go on sampling the world well into the wee hours of the morning, only falling asleep at four or five in the morning when she's completely exhausted herself.

I, on the other hand, am not so resilient and tend to run out of steam not too much past midnight.

Tonight, as has happened a few times before, I drifted off to sleep before she had and woke up, bleary eyed and panicky, to find her bed empty. Tonight she'd merely gone to the unlocked master bathroom and unspooled the roll of toilet paper and shredded it and taken the bottle of talcum powder and spread it all over the counter and floor. On other occasions, though, she's found much more horrible and frightening messes to make. She once decided to draw herself a bath of nothing but cold water on a cold November night and I found her standing in an overflowing bathtub shivering and blue.

So on most days I do things right and I anticipate her and leave the bathrooms locked and make sure she's sound asleep before I go to bed. Those days I win, but tonight, as I'm damn near crying with frustration at battling with a child who seems determined to hurt herself, I feel like I'll
never really win.
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My girl's hidden masterpieces.



A little
video I made about my autistic daughter's hidden digital drawings. (Best viewed at 720p and fullscreen.)
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