For years, I have lived in a state of hypervigilance. So many seemingly simple moments for other families are packed with opportunities for my son to be seriously harmed. Some things Tony does because he either lacks a more complete understanding or currently can’t hold onto what will happen to him if he succeeds in obtaining the object of whatever impulse he was unable to suppress.

Inside our own home, I can lock things like scissors, knives, and cleaning supplies away. I can constantly be on the lookout for items left out by others. I can put special locks on the doors leading outside. But I cannot be by his side every second of the day, so I dread events that douse our little man in emotions that cascade him into regulation chaos and bouts of attempted self-harming.

When I say that my son is really into banging his head, I’m not talking about the Headbangers Ball, y’all. At nearly 90 pounds, Tony is capable of using a great deal of force (and causing more serious damage to his own noggin) when he’s upset. One of the scariest things he will do is sit down and throw his entire weight backwards towards his head. I have to be quick, and I have to be ever aware. No moment is sacred in my world- at any time I can have to stop what I am doing and race to prevent injury.

The first time I witnessed Tony doing this, he was under a year old. Someone from the church I used to go to, C.S., commented that this type of behavior would be self-limiting. I remember a prickling sense of foreboding as we spoke, because I had already observed a lack of any sort of reaction indicative of pain from these episodes. As the months wore on, he would fall when trying to crawl or walk and get a sizable bump on his head and never cry. He dropped a 4 pound weighted ball on his foot during a session with an occupational therapist when he was just under two years old and didn’t even flinch.

Turns out, if your kid’s deep pressure nerves are under-responsive (and Tony’s definitely are), the senses will work against any limitation of this type of behavior. I have seen him shriek for minutes over a small scratch (his skin surface nerves are overly sensitive) but not even cry for a bump on his head the size of an egg.

Around the time our sweet son was being diagnosed with Sensory Modulation Disorder, we had noticed that he had begun leaning forward onto his knees and violently cracking his head into the tile, giggling as he raised his head up off the floor. As you can imagine, I found this to be quite terrifying and had taken to keeping the couch pillows on the floor, eventually even buying a few extra fluffy pillows to augment the coverage. His fabulous OT at the time, Miss Dee, explained to me that for kiddos (like Tony) who need a higher degree of vestibular input for their sensory systems to mature and integrate, this can be one initial reason for repeated attempts at hitting their heads onto harder surfaces. For children with these types of sensory differences, often increasing vestibular input can improve their ability to calm themselves and regulate their own emotions as well.

The sensory side of the equation can make it difficult to determine if there are any other reasons behind attempted headbanging, so after safety has been assured, I personally recommend for younger children starting with trying to address sensory imbalances first. Other behavioral strategies, in my opinion, will not remedy self-harming related to sensory differences.

There are a number of things a parent can do to provide additional vestibular input and help strengthen the brain’s ability to recognize it and maintain regulation: swinging, spinning, jumping, running, bouncing on a yoga ball, rocking chairs, the incredibly overpriced Gonge therapy top (yep, coughed up the money for one because Tony has significant need for vestibular input, but I still think this company is taking way too much license with their pricing privilege on this one), and crash pads. There are many different products on the market that can help provide additional opportunities for vestibular stimuli within the home…you may have encountered some not on this list and I say good for you! The best activities are the ones your child or the child you are working with responds well to.

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Pictured above are a few of those items in our home: please note the bucket swing is hung using a gorilla gym and clamps from the local hardware store. In those earlier years, the swinging was like magic for Tony and reduced the attempts at self-harming to nearly nothing unless he was really upset about something. We had a significant resurgence of sensory-related headbanging after his dental crowns were completed a couple years back, but most of the time when he initiates this behavior nowadays he has other reasons.

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Sometimes clearly our little man is acting out of frustration and an inability to communicate effectively everything he wants to about a situation. His receptive language (ability to understand what is communicated) is functioning on a much higher level than his expressive (ability to communicate ideas in ways others understand). And other times, he unfortunately seems to have realized that he can start to bang his head and all the grownups in the room come running, focusing everybody’s attention on him. Keeping Tony out of the ER is a big priority for all of us, so obviously this strategy has been working pretty well for him. And sometimes, he’s just plain angry that he was told he couldn’t have something yet.

Combating this requires a combination of functional communication training and artificial consequences. Typically, pain from the actual attempt to hit his head on something would be a natural and limiting consequence (and for an Autistic individual I think those are generally more effective than manufactured consequences because the relationship between cause and effect makes them more intuitive). But in the absence of his ability to detect that at an appropriate level for this type of impact in combination with the need to prevent it given the force he is using, I have recently started taking away his TV for a few minutes each time he tries to hit his head on or with anything. My son loves few things the way he does TV, his love for us being one of them. That love, however, is quite separate in his mind from what he wants to do- and he sees no reason that the two should be connected from the motivation standpoint.

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What I feel is very important for the success of this technique is that the individual is capable of understanding both the accepted behavior substitutes and why a consequence is being given. And while Tony currently is, I also have to make sure to use a TV penalty time low enough to reflect what he’s capable of with his attention span but long enough to encourage him to strive for self-control. This is always paired with an explanation, demonstration, or a reminder of how he can communicate what is bothering him with on his TouchChat HD AAC app.

This past year has been overrun with an onslaught of upheaval and more significant emotional losses for Tony, with one aversive event undulating right into the next. On the heals of Ms. E’s exit from his therapy team, Hannah returned to a more traditional school, and on and on it just seems to go. She made a choice she was ready for, but he wasn’t. Our little man loves his sister, and really misses having her around more.

Sometimes it feels like we may never experience a period lacking in major transitions that will last long enough to dramatically improve his rate of progress or participation in therapy. Certainly adding the TV penalty has helped encourage Tony in recent weeks to seek less harmful ways of communicating or getting our attention. We have actually had a couple of days in the past week without any attempts to bang his head, and given how upset he is over Ms. E going to work somewhere else and Hannah’s return to school, it’s stunning for me to see that. For perspective, it has been years since the last time we’ve had a day without him trying to crack his head on something. And yet, despite this reduction in self-harming, he’s not exactly well-regulated or cooperative in other ways.

Years of running to prevent Tony from harming himself, of occasional episodes where I wasn’t quite able to reach him in time, of resolving one cause only to have more spring up like weeds after monsoon season, of testing out therapy techniques, and of constant worry over every little upset triggering a headbanging episode, have left me inwardly and outwardly seeping tears. To be preventing your child on his or her worst days from spending hours attempting to seriously self-harm is horrible and heartrending. When I first read Chancer, I already understood from my own experiences what Donnie Kanter Winokur described when she said “more and more, I would discover my eyes leaking tears without my consent.”

Maybe you’d be better at controlling it than I currently am, but (to quote Lesley Gore) “…you would cry too if it happened to you.” You. Would. Cry. Too.