When his autistic son acted out, the author sometimes responded with violence. And then debilitating shame.
The first time I hit Jay, he was two years old and had just been diagnosed with autism. He hated having his diaper changed and I hated doing it. One afternoon, as he squirmed and kicked and flailed, and I got covered with the contents of his diaper, I cocked my fist and hit him. Not hard, but with enough conscious effort to take my breath away. It was so easy.
Jay kept crying. Maybe he didn’t notice. Maybe I got away with it. Later, alone, I bawled in shame and vowed never to do it again.
Over time my anger boiled, always just below the surface. It spilled out at a moment’s notice, going from silent to shrill instantaneously. My father, who was friendly and fun in public, was stoic and taciturn in private. His anger was enough to make me subservient to his whims, and without knowing I had followed his example.
Having a child with special needs gave me ample opportunity to act out my rage in private. At bedtime, Jay’s autism would manifest as hyperactivity—jumping on his bed, flapping his arms and hands, screeching, rolling on the floor—and it would take hours to calm him down.
Eventually he would fall asleep, but he would wake up two or three times a night. Emma and I took turns trying to calm him, which sometimes meant carrying him around the room, shushing in time with bouncy steps. As he got older and heavier, we held him tummy to tummy and bounced on a yoga ball, chanting “99 Bottles Of Beer On The Wall.” In desperation, we started giving him cold medicine as a last-ditch attempt to bring on sleep.
Sometimes it worked, and sometimes one of us would stay up with Jay as he ran from wall to wall in his room and vocalized wordlessly at the top of his lungs. After a few hours, already sleep-deprived myself, anger would wash over me and I would try to force sleep on Jay. Instead of bouncing him, I would grab him and wrap my muscular arms around his body and squeeze.
In my mind’s eye I saw his little ribs flex, his back arch, and his lungs compress, and took perverse pleasure in subjecting him to some of the anguish I felt, in a way he might understand. He would retaliate by biting my shoulder, hard enough to bruise the skin. If I blocked access to the light switch in his room, he would charge, hands extended, to push me out of the way. For this I would knock him to the floor.
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One night, as our anger spiraled out of control, I realized that I was physically punishing my handicapped son. I curled up in a ball on his bed to absorb his bites and scratches and hits. Some mornings I’d arrive at work with bloody scratches on my face. I wore them as a perverse sign of martyrdom, asking the world to see what my crazy autistic son had done to me, thus absolving my shame.
In retrospect, my anger had transformed his fear into violence. Much of Jay’s behavior was a reaction to his inability to manage the sensory information his body took in. Though his room was dark and a white noise generator made a soothing hiss, he reacted to everything: the sickening smell of dinner that lingered for hours, the abrasive cold of the polyester carpet under his feet, the lacerating itch of labels in his pajamas. My lashing out at him physically turned an already frightened little boy into a cornered animal, and his mis-wired limbic system could not moderate his over-excited brain.
It has taken four years, three therapists, and thousands of milligrams of medicine to help me moderate my anger. Over that time my dad died, and I started to put his outsized character into perspective. My own experience with selective serotonin reuptake inhibitor (SSRI) anti-depressants led Emma and me to investigate how increasing serotonin levels in Jay’s brain might help him better moderate his senses, and lower the anxiety level that triggered his behaviors.
Now I’m happy to say that Jay and I no longer let fear and anger overwhelm us. He still gets upset at having to end a favored activity, but Emma and I now employ a countdown system to prepare him for the transition.
I still cringe when I think of what happened. His brain was fighting to stay afloat in a storm of sensory information and overwhelming emotions. In a way, that’s what I was doing, too.
Your writing is very good and and your honesty incredibly brave. I can’t believe any of us would have been any more pure, calm or perfect under the circumstances. Simply because your son’s wiring was out of wack didn’t mean you could take it endlessly. Just think of how “normal’ childhood behaviors can drive us out of our minds. Then push those to the end of a spectrum and it is enough to force the adults into more extreme reactions. I look forward to reading more of your brutally honest work. And I’ll bet parents in your shoes are relieved… Read more »
wow… just… wow. I am trying so hard not to judge. If you behaved that way toward your son in public, in front of me, I hope I would have kicked you to the curb. At the same time, I have had my own bouts of anger (and certainly fear), and treated my kids with physical force that was certainly meant to stop their behavior through pain. And yes, I felt good. Wow. Thank you so much for posting this. I can only imagine the process of getting it on paper. You’re a good, brave man. I wish you and… Read more »
If all parents (not just fathers) approached parenting with such honesty with themselves we’d all be a lot better off. I can’t even begin to express the depth of my respect for what you’re dealing with, and how you’re approaching it. God speed, friend.
PDD Dad – this is brave commentary on what can easily be a frantically isolating life. Without asking for pity, you have described the torment that a parent can feel in trying simply to manage life for his child. I can’t even imagine how I would cope with similar circumstances.