Day 3,158

My morning begins like most mornings have been beginning for me lately- with a 12-year-old boy pulling on my hand, then my leg, then watching to make sure I get up. If I don’t move he repeats the process until I do. It is 3:00 in the morning. Day 3,158 of life with autism has just begun.

I can’t be mad at him, of course. I did tell him for weeks on end that if he needed anything during the night he should get me up. He finally got the picture. Now he gets me up every morning regardless of whether he needs to use the toilet or needs diaper help or picked his nose until it bled, as happened a couple of weeks ago. There’s nothing like waking up in the middle of the night and being greeted with a small, bloody face. Sometimes it’s as late as 4:00AM, sometimes as early as 1:30AM. But he will wake me up. I usually get about 4-5 hours of sleep a night. Not always in a row. And I have to get up. If not I stand the chance of being greeted in the morning by a mountain of diapers, tried on and discarded. Or maybe a pool of Kool-Aid on the floor where he attempted to pour his own drink.

Matthew will often fall right back asleep, but not always. I, however, generally fall back asleep in the ever-declining recliner. An hour later I awake to the sounds of Elmo In Grouchland. Matthew has taken his Ipad from the place where it charges overnight, and has decided that now is the time to play. No it isn’t, Matthew. Plug it in and go back to sleep.

An hour after that I am woken again to the sound of macaroni being rattled around in a bowl. Matthew has taken a box of macaroni and cheese, poured the cheese powder into the drain, and is now playing with the macaroni. I order him to go to sleep, and I fall asleep again. If it was possible to stay awake 24 hours a day I would need to. Nothing in the house is safe.

5:45AM hits and I figure it is finally time to wake up officially. Plus it is starting to smell bad in the living room. I open my eyes and shine the light from my phone around the room. One, two, three, four, five dirty diapers strewn about. He changed his diaper without waking me. Good. He let the contents leak onto the floor. Not so good. 6:00AM and I am scrubbing poop off the carpet.

Rebecca generally has one of two responses to the beginning of the day. She will either wake up at 5:00AM and decide that it’s time to play, or she will stay asleep until it is time to get her dressed for school, in which case her response is to scream and bellow and carry on as if her liver was being taken without benefit of anesthesia. This morning she comes out of her bedroom at 6:00AM smiling and laughing. Oh yeah, she isn’t wearing any clothes. And she’s entered puberty already, which means… well, just guess what it means. No, no visits from the red-haired grandmother. Not quite yet. But her nudity requires me to wake my wife up an hour ahead of time so she can clean her girl parts and get her dressed. But at least Rebecca is smiling. I silently thank God for sparing us the carnage of Hurricane Rebecca.

Matthew can dress himself.Rebecca, not so much. Bra goes on, bra comes off. Bra goes on, bra comes off. Eventually the bra stays on long enough to get the shirt on, and then we are good. Rebecca is dressed, the kids get on the bus, and I head back to bed.

I wake up at 10:00AM. I have six hours before the children come home to help Laura with the housework. I clean the living room, she cleans the kitchen. We can postpone the bedrooms for a couple of days, after all, no one sees them, but not too long. We nervously joke that if we got robbed again Children’s Services would be on their way and we would be busted. The thought of Children’s Services bending us over and having their way with us causes an extra spring in our step. Laura throws Rebecca’s bedding (that she wet on for the umpteenth day in a row) into the wash, I vacuum the floor, we sit down to watch the most recent Hawaii Five-O. T-minus 45 minutes. The kids are on their way.

Rebecca is smiling, Matthew has his usual grim look, but they both have the same intentions- the kitchen. Throw the shoes, coats and bags on the floor, and on to the food. Matthew asks for Ramen, his favorite treat. We make it, he eats it, he asks for it again. We make it, he eats it, he asks for it again. We make it, he either shoves it under the couch when we aren’t looking or dumps it in the sink.

Rebecca wants soup. She dips her spoon into it and then picks the meat off to eat it. She repeats the process until there is nothing left but broth. She pours sugar into the broth and stirs it around. Oh, hey, there are coffee grounds in the trash! Into the ever-thickening mixture it goes. On and on it goes until the resulting mixture looks less like soup and more like the fake blood they used to perform psychic surgery on 20/20 about 25-30 years ago.

While we deal with Rebecca Matthew has unwrapped several dishwasher powerballs. One goes into the ramen pan. The others are broken up and strewn about the floor. When we turn our backs Rebecca takes the ladle, dips it into the crockpot, and helps herself to some stew. She puts it into a bowl on the table, leaving a trail of stew behind her.

Matthew wants Arthur on the DVR. He wants it again. And again. And again.

Rebecca gets the Chex out and helps herself. Soon the Chex are grounded into the carpet. I lift the couch to clean under it. Ramen, hot dogs, sandwich meat- all have been deposited here. Oh Lord. I grumble under my breath to no one in particular. Rebecca cries, and then shoves her hand into her pants. They don’t come out the same color they went in. Off to the bathroom she goes.

Matthew, meanwhile, has liberated the juice boxes from the top of the refrigerator and has helped himself to four of them. He promptly throws up. I clean that, Laura cleans Miss Poopy Hands.

Night comes. Matthew heads into the bathroom because it is time to brush his teeth. By the time I get there he has the toothpaste on the brush. Then he eats it off the brush. Rebecca’s turn comes and she struggles. She bites down on the brush. Mission aborted for the evening.

As the kids settle in for the evening and head off to lands unknown, I plug my ear buds in, enjoy the soothing sounds of a band called New Jerusalem, and wonder what the future holds. Will I be helping Matthew aim his manhood when he turns 18? Will Rebecca leave the bedroom naked when she’s 21, her Aunt Flo her guest for the next five nights? Will they talk? Will they have any kind of future other than what they are experiencing now? Consult the magic 8-ball. Outlook not so good. I get on Facebook for the umpteenth time that day and read about a friend’s son who is excelling at West Point. Another friend’s daughter has just graduated high school. My niece’s son says something utterly hilarious out of nowhere. My sister’s daughter is in the Marines. Good parents who brag on their children’s accomplishments. As well they should. But it causes my depression to deepen. This isn’t going to be my life. Not now, not ever. No winning basketball shot, no walk down the aisle, no service to the nation. No funny anecdotes to post and have reposted.

I need to listen to something more aggressive. A Kiss album fits the bill. I drift off to sleep. 3:00AM is headed my way soon.

272,851,200 seconds. 4,547,520 minutes. 75,792 hours. 3,158 days.

Day number 3,159 will begin soon.