A mom's blog about the mostly ups and sometimes downs of raising a child with autism.
Saturday, September 25, 2010
Early to Bed, Early to Rise
The activity level at 5 a.m. this morning was far too high for such a time of day. Sean went to sleep early with a low grade fever and cough. He missed dinner and dozed off as the sun was slipping off the horizon.
The evening was quiet, the soft tin whistle of the Irish music Sean likes to fall asleep to, drifted down the hall. We had the evening all to ourselves knowing full well that the morning would not be ours.
And here lies the problem. If we were smart we would have cleaned up dinner, talked for a bit and turned into bed early, knowing that the morning would come painfully early. And yet, the opportunity to open up a bottle of wine, let the dishes camp out a bit on the dining room table and just lounge on the sofas talking and laughing was too much to pass up. So we did.
My husband was out of town all week for work and had arrived home in the evening. My dad had arrived into town Wednesday night. The luxury to have all this time to ourselves, to spend time together without the interruptions ("What does Knock Knock start with?" "Papa, you take me to Target?") was like a saucy piece of fruit dangling in front of our hungry eyes. So we ripped it off the aching vine and gobbled it up with feverish hands.
Falling into bed, joy bubbling in my veins from my husband's return and my dad's visit, I fell fast asleep. A hard, heavy sleep, like a mallet hitting me square between the eyes. An hour later, I was jolted awake by the cries of the puppy in his "crate" (really more like a jail cell.) I lumbered out of the bed, the kind jailer that I am, and took him outside to relieve himself.
The idea of putting this bundle of licks and fur back into his "crate" seemed unlikely. He crawled up in my embrace, his ears pinned back, eyes swimming in devotion and affection -- all this just for being alert enough to hear him and help him. How I longed for 1/10th of that appreciation from Sean during the nighttimes of holding him after a bad dream,reassuring him that Batman isn't real, his face wet and hot and his angular body like a bag of hangers in my arms, poking my ribs and knees.
The puppy was a present for my oldest, a reward for good grades. He promised he would take the best care of him, he would keep his grades up and he would limit himself to one hour of television. He's held up part of the bargain but the part where the puppy goes for a nice long walk, leaves a mess on the street and the person has to take a baggie, gingerly pick it up and do the walk of shame until a garbage can presents itself -- that role has been assigned to me. I used to secretly mock those people. Now I am one of them.
So after I bring the puppy in from the crisp middle-of-the-night air, I settle back into bed, the puppy curled up against me, his hot breath on my neck and give into sleep.
Three hours later the familiar, squeaky voice enters the room, "Hi Mom,"
The puppy's ears pop up like satellite dishes and I rub my eyes and try to make out the squiggly red lines on the digital clock -- 4:45. My husband turns over and edges toward the left side of the bed and Sean climbs in between us and begins his talk, burying his elbows, chin and feet into our sides. The puppy growls as Sean tugs his tail and I will myself awake.
"I'm hungry," he announces to no one in particular. I get out of bed and take him to the kitchen to make him some breakfast, the puppy whining in my absence.
While I am making him breakfast my husband peers into the kitchen with tired, small eyes.
"Go back to sleep," I say, "it makes no sense for both of us to be up."
"I'm awake. I can't fall back asleep. Why don't you go back to sleep." he says, rubbing sleep out of his eyes.
"I can't go back to sleep either. I'm totally awake."
We make coffee and try to keep Sean upstairs. He constantly tries to break for the downstairs to shake awake his Papa. We take turns slugging down coffee and detouring Sean as he bee-lines to the stairs.
When I am finished with my mug I go to wash it and read the fading gold cursive writing on the inner lip. It's a coffee cup I got at Target after Christmas, a glittery holiday-ish cup that was on clearance. It had little shiny stars glued near the handle (which have since fallen off -- guess it wasn't dishwasher safe) and glittery curls of salmon pink and tangerine orange licking up the sides. And inside, written like fading ribbon reads,
"Gratitude leads to joy which fills our hearts with love and peace."
I stood there a moment, my eyes aching from lack of sleep and my lower back stiff and then smiled. Sometimes I need to be reminded of all that is good and tasty in my life -- whether it be seeing my dad, my husband returning from a week of travelling or the coffee warming my insides, keeping me alert for the moment.
My boy runs back and forth, a flash of red hair and pale skin and muscle, his eyes bright and laughter spilling from his handsome face. The puppy chases him, nipping at his heels, his tail wagging like a windshield wiper in a storm. The mug from Target stays in my hand, almost like a held prayer, and I am reminded of all that I have and I can't help but to keep smiling, tiredness lifting like fog from my head, my heart.
Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.
What is the purpose of this study? The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.
Whom should I contact to get more information? Emily Champoux, Project Coordinator Toll free: 1-800-994-9701 or 206-616-2889 Email: email@example.com Additional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html