Spectrum Journey

John August: A journey through autism

On the dark days

I don’t know what you do to keep a non-communicating autistic four year old occupied in a day.

With our oldest child, we went to story times, did art projects, played games, read, went on adventures, talked, watched movies, played games together… the list could go on and on. I guess you could say there was nothing left that we hadn’t already done.

But there is nothing I can do with my four year old. If I try to engage in any play, he walks away. If I read to him, he walks away. If I try to go for a walk, he tries running away. Games, art, movies, it’s all out of the question. There is nothing that my son wants to do with me. If I try to force myself into his world, he gets upset and shuts down. I am trapped in the same room with him every day, but taking him to anything in public is even worse.

I am literally just there to keep him alive and make sure he doesn’t get hurt when he is at home. Knowing that your child wants nothing to do with is like a kick in the stomach. I feel frustrated and useless. Even though I am home all day, I can’t do anything around the house that needs to be done. If I fold the laundry, he unfolds it. If I try to cook, he tries to touch the hot pans. Forget anything that requires concentration because in ninety seconds I will have to take something away from John that he shouldn’t have or could use to hurt himself or me.

I’m depressed most of the time and to say that I am frustrated would be an understatement. I want to pack up anything lose and live in empty rooms. Completely empty. Not even furniture. At this point, I can’t sit anywhere because I can’t have chairs. No books because John ruins them. No knick knacks or other room decorations because John breaks them. No furniture because John jumps on it. No pencils because John chews on them. No lights because John breaks the lamps. No piano because John chews and climbs on it. No plates or bowls because John chews on them when his snack is gone. We can leave all the toys. Those he doesn’t touch.

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John dragged a chair into the kitchen, scaled the stove and grabbed the m&ms that then dumped all over the floor.

There is a reason that kids like John were institutionalized at one point in history. I think about that all of the time, and a lot on days like today. I’m riddled with guilt, knowing that if he was born at a different time, he would be locked away in some asylum, forced to fend for himself and falling deeper and deeper into his own world.

Working with John is difficult. I don’t get any positive reinforcements or see results from all of my efforts. I don’t know how much longer I can hold on. I do what I can and am willing to try anything, but the candle is burning at both ends and the wick is getting shorter.

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One comment on “On the dark days

  1. visionofautism
    April 30, 2013

    Hi… Dang. I sense the futility in motherhood when I read your words… I’m so very sorry, it’s so hard sometimes. I’m here, and I’m reading! You will have better days eventually, it all changes… Hang in there~

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This entry was posted on April 30, 2013 by in daily life and tagged , , , , , .
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