Saturday, September 19, 2009


I woke up this morning, a Saturday morning mind you, at 7AM. I should have been able to sleep in, but my son decided to wake me up with the sound of his head banging against the wall in his room. It's a typical behavior for him, and has been going on for a couple of years at least. I wake him up and immediately give him his morning dosage of behavior medication- one Respirdal, one-half Clonazepam. I'll repeat the routine in 6 hours, and again in another 6. Fat lot of good it does sometimes, but that's the thing with behavior medication; you throw everything against the wall and see what sticks. He takes the medicine, but kicks the filing cabinet and attempts to bang his head on it the whole time. Before the school system bought him a rubber helmet, I was regularly taking him to the emergency room to have the cuts in his head stapled shut.

After medication time it is diaper-changing time. He wears two diapers at night to guard against spillage and leaking. I pull the back open to see what I am faced with. Nothing. Good. I have him take the diapers off and put the new one on. One down, one to go. We go back to the living room where he commences the head-banging routine once again. Crap. It's going to be that kind of a day.

My daughter wakes up an hour later, seeking out a drink. She finds the pre-poured beverage on the table. My son sees her, and the head-banging takes on a renewed intensity. OK, wifey, time to get up. I can't take them both on by myself. My son retreats to the master bedroom to be calmed by a woman more patient than I, and I take my daughter into the bedroom for diaper-changing round two. Changing a girl's diaper is a little more challenging. There are more places for the poop to hide. Like a properly raised female, she clenches her thighs together. Good behavior for her post-junior high years, not a good behavior when you are trying to wipe. The waste is cleaned, and I stretch the barely-fitting pullup over her ample butt.

Have I mentioned that my daughter is seven and my son is nine?

Were you to enter our house you would immediately notice a large hole in the wall next to the TV. My son put it there with his head. Continuing the tour, we see a smaller hole next to the light switch by the door. Over on our right we have my son's bedroom. Four huge holes have been repaired; all that remains there is the painting. Down the hall we have my daughter's bedroom. Just one big hole. Across the hall is another large hole in the master bedroom. At least in theory it's my bedroom. In practice it is my wife's bedroom. I sleep in the recliner in the living room. A comfortable chair it is, but not a bed. I sleep there out of necessity; in the middle of the night when my son tries to redecorate his bedroom with his head, I need to be able to hear it and stop him as soon as I can.

My wife and I are more two roommates than a couple united by God in a loving relationship. We don't go to the movies, we don't go out to eat, we don't get together with other couples and discuss the events of the day. We don't go on walks, we don't have intellectual conversations, we don't have sex. Our lives are entirely wrapped up in keeping my son from hurting himself and my daughter calm in order that my son won't enter meltdown mode. We change the diapers every hour and a half. We constantly shoo my daughter away from the refrigerator so she won't eat butter. My son wants candy? He really should eat his dinner first, but at this point we are so tired of the destruction that we just give him the damn candy. Spoiled? Oh, probably. But maybe you would like to tell us how we are going to pay for repairing the holes in the wall.

The anti-depressant industry loves people like us. I take two, my wife takes six. She has had four hospital stays in the past five years. I've developed a heart condition. We almost got divorced two years ago. I do my best to keep things together because if I don't, no one else is going to do it for me. When someone asks what they can do for us, I ask for babysitting. I ask for a dinner invitation. I ask for some relief. And I generally never hear the question from the same person again. It's easy to appear caring; it's harder to actually do it.

I am supposed to attend the fourth birthday party of my nephew Chris this evening. Chris is an interesting little boy; he has a fascination with superheroes, and can recite the names of the major players as well as their alter egos upon request. He also spouts out the funniest lines without even thinking about it. He's unique; when you are the only grandchild/great-grandchild you get a different kind of attention than when you are fourth or fifth in line. Even though I don't get to see him much, I love him.

I am jealous of Chris. I am jealous that he can tell his mother that he loves her; I am jealous that he knows what the letter P is; I am jealous that his four-year-old vocabulary is more now than my son's may be over his entire life. I am jealous that when Chris has to take a crap, my niece just tells him where the bathroom is and reminds him to shut the door. When Matthew has to take a crap, he just goes where he stands. To have to change the messy diaper of a nine-year-old is not cute, it's not pretty, it stinks and it is depressing.

I think I talked about diaper-changing already. Well, the damn things don't change themselves.

This isn't how it was supposed to be. I was supposed to be married at 24, to a woman I grew up knowing; by now we would have had at least four children, ages 18, 16, 14, 12. I would be teaching my sons how to bunt; I would be watching my daughter sink the jump shot to win the game. I would be convincing my daughter once again that her value is not in what a guy thinks of her body; her value is inherent. She is valuable because she is. I would be telling my son that to be a man means having "the will to give and not receive/ the strength to say what you believe/ the heart to feel what others feel inside/ to see what they can see" (Boston, "To Be A Man") Nightly dinner conversations would turn to politics and the world situation. I would marvel at how my children had taken the drivel I instilled in them, synthesized it with opinions both left and right, and developed their own view of the world. I would be shedding manifold tears as I drop the suitcases on the unmade bed and leave my daughter at college, hugging my little girl and leaving a young woman behind.

Sometimes life is what happens to you while you're busy making other plans.

I have to go.

Day number 1,975 with autism has just begun.


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