Still At It

It is late at night, and I'm sitting in the dark hallway outside of our older son's bedroom. He is wide awake, and I have no hope of getting some sleep any time soon. He's been plagued with sleep disturbances since birth. As a baby, he would only sleep in 20-minute stretches, adding up to perhaps six hours of sleep in a 24 hour time period. We tried every trick in the book: placing his infant seat on the dryer, putting him in a baby swing, rocking, driving in the car--the list is endless. Nothing worked. Today, he will cycle from horrible sleep to okay sleep. Any of that can be compounded by gastric pain, which can fuel his fires all night.

So, here I sit, in the hallway that has served as a sleeping spot for my husband and me as we have both shared and traded night duty for nearly a decade. Our son has no danger awareness and requires care at all times. If he is awake, one or both parents will be awake with him. Currently, I take nighttime duty so that my husband can work late. Our night routine is constantly changing to meet the chaotic demands of a sleepless child.

Tonight, he can't settle. The sheets aren't right. He can't find some benign toy that he absolutely MUST have in order to sleep. Then he's been awake long enough to want food. Sometimes, he wants a ride to one of the area malls, just to see if it is still there. My husband has driven him around the city at every hour around the clock--a mall at 3am, the parking lot of a local amusement park at 1am.

I've slept outside the door to be sure I don't miss him when he sneaks out. My husband and I have slept upstairs and downstairs, in chairs, couches and on floors. We have slept in every bed at this odd time or that with the hope of catching even a few winks. Some nights, sleep eludes us. He has been known to be awake the entire night and still go strong the next day.

It really can be its own form of torture. The monotony of his actions, the sleep deprivation, the constant demand. Right now he is also crying endlessly because I am tired of being on duty and am telling him he must stay in his room. It has become a battle of wills. I'm working hard to ignore his kicking on the door and screams of anger. I would love to join in, frankly, but I am supposed to be the adult.

I don't know why it is that many children on the spectrum of autism have this sleep difficulty. I might have known at one time, but I'm too fried at this point to recall the information. I used to know quite a bit the science and statistics behind this disorder. Sigh. Now, I am just trying to be a mom that survives this disorder.

Maybe when I am done clicking the keys to my phone for this blog entry, I'll do an Internet search for images of beach scenes. I can let the pictures drink me in as I pretend I have miraculously lost 15 pounds and am lying in the sand in a hot bikini. My son is breathing under the door right now. If I close my eyes, his breath can be the sound of the crashing waves in the distance. Yes, now we have a plan! I am going to grab a pillow for comfort and settle into this plan here in the hallway, my new imaginary patch of beach. Hopefully, the sand, water and sun will lure me to sleep in no time!