Saturday, April 20, 2013

Autism Awareness: A Guide For The Perplexed

I woke up this morning, or rather I was awakened this morning, at 5AM. I should have been able to sleep in, but my son decided to wake me up. Time to play, daddy! Umm… yeah.  It's a typical behavior for him, and has been going on for a couple of years at least.

Before I send him back to bed (a command unheeded), I survey the scene. In one corner are several diapers that he tried on and discarded. In another, fibers and cotton from said diapers. But my nose tells me a different story. My foot confirms it. The used diaper is below me. I clean the contents off the floor (and off my foot) and send him back to bed. A command unheeded. At 6AM I realize that sleep is not going to happen this morning, I might as well get up officially.

My daughter wakes up an hour later, clad only in a diaper, her boobs waving in the breeze. OK, wifey, time to get up. I can't take them both on by myself. She takes my daughter into the bedroom for her diaper change. 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. It’s puberty time, and I have been excused from dealing with her privys. Can’t have Children’s Services coming on back.

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; two holes were immediately made again. 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 most nights. A comfortable chair it is, but not a bed. I sleep there out of necessity; in the middle of the night when my son explores the kitchen, it is in my best interest to rein him in.

This is our existence, my wife and I. 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 or bleu cheese dressing. 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. I give him the candy and reach for the daily allotment of anti-depressants.

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.

My nephew Chris is what, 7? 8? I lose track. 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 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. My thirteen-year-old son needs help in the toilet, when he chooses to tell me that he has to go. Otherwise I hold my breath and think of England, and move in to wipe his behind.

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, instead of turning to politics and the world situation, end up consisting of the words “Rebecca, don’t…”, or “Matthew, don’t…”, followed by the offending behavior. This isn’t how it was supposed to be. I was supposed to be able to 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.

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.

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 and put on Paul and Linda McCartney’s Ram album. I have time before I drift off to sleepy land to think about some things. This is our future. It has been mapped out for us. I will be helping Matthew aim his manhood when he turns 18. Rebecca will be leaving the bedroom naked when she’s 21, her Aunt Flo having paid her a visit. No need to consult the Magic 8-Ball, our future is our present. Bored, 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.

This is autism awareness. When your blue T-shirt is put back in the drawer, my wife and I will still be changing diapers. When you change your profile picture to the color of the next cause du jour, we will be trying to keep our son from hurting himself. When the next world tragedy hits, we will be uselessly trying to be convincing our daughter that yes, you have to wear a bra.

This is the true awareness. It isn’t about “retweeting to show respect”, it isn’t about making yourself feel like you actually accomplished something when you change your picture, it isn’t about suggesting that I read the latest anti-vaccine article or watch Autism: The Musical. My son is not going to be Rain Man. My daughter is not going to be Temple Grandin. While your children have children and they have children again, our children will still be struggling to tell us that they hurt, that they don’t feel well, that they’re scared, that they are tired of getting stared at in public places. Don’t worry, kids, I’m tired of that too.

This is what you need to be aware of.


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