Why can't you just stop?

Can I discipline my kid with special needs without being an asshole?

Once, many years ago, a friend made a well-meaning comment that I’ve carried with shame ever since.

I was telling her about how hard it was for me to accept the endless nuisance habits and compulsions of my son who has an intellectual disability. I told her about how I listened to him ask the same question so many times until I feared I would snap and yell at him to stop. Actually, I didn’t fear it. I just did it. And then felt so terribly guilty. I cringed to hear myself snap at him, “Why can’t you just stop?”

I talked about his oral fixation, how he would chew on anything he could reach: his bed, window blinds, a battery, his backpack, a toy, a blanket, his fingernails and, to our disgust, his toenails. I told her about how his curiosity led him to manipulate anything with a moving piece to its breaking point, destroying countless toys, books, and even bookshelves and light fixtures. Any button he could reach must be pressed in an endless rapid succession that eventually wore it out and made the toy worthless.

I admitted to her that his desire for constant physical proximity tested my patience to the absolute limits. Especially because the desire to cuddle wasn’t peaceful, it was like attempting to hug a constant motion machine. He would settle into position, rest for a second or two, and then pop back up again, using an elbow pressed into my leg, arm, or, most often, boobs for leverage. The unpredictable and painful physical sensations grated on my nerves intensely. There were days – if I’m honest, every day – when I spent hours physically tensed as he hovered nearby, continuously asking questions and impulsively reaching out to grab the laundry I had just neatly folded, the eggshell I had just cracked open, the pen I was using to write. I berated myself internally almost every moment I was around him: be more patient, just relax, you don’t have to get so bothered, why can’t you just let it go, take it easy, stop, calm down. Why can’t you just stop?

I explained to her that no approach we used seemed to work on him. “We do timeouts, we take away toys, we buy sensory toys, and fidget toys, and weighted blankets, and chewies, and visual timers, and visual schedules, and gross motor toys, and soothing music players and anything else we can think of, we offer incentives, we praise good choices, we get mad and yell. Nothing works.”

“That does sound frustrating,” she answered. “I think it’s okay to give him consequences. And all parents get mad. As long as you’re not punishing him for his disability, of course.”

That caveat haunted me. What did it mean, really, to punish him for his disability? How did I know which behaviors resulted from his disability? Which, if any, should we respond to with consequences to help him learn? If I had a kid who was blind, I certainly wouldn’t get upset with them for bumping into me or knocking over my neatly folded laundry. But these troublesome behaviors seemed less clear-cut. The line between his disability and actions for which he could be held responsible felt blurry. More to the point, I questioned whether that distinction really existed at all. Were any of his actions not, at some level, a result of his altered cognition?

I think the closest parallel for parents of neurotypical kids is perhaps this: how do you decide how to respond to your two-year-old’s behavior? Which ones deserve a consequence and which ones just get accepted as “developmentally appropriate” (and, therefore, not something over which the two-year-old can be considered to have control.) When your two-year-old is having a tantrum in the grocery store because you’re not buying the strawberry syrup, are you the parent who (a) simply ignores it and carries on shopping or (b) scoops the kid up and leaves right away or (c) goes ahead and gets the syrup because kids that age don’t have the skills to manage frustration or disappointment so the kid shouldn’t be punished for be disappointed. Different parents land in different places: some set expectations high and strictly manage behavior. Others believe that the phrase “developmentally appropriate” can, like love, cover over a multitude of sins. As you can probably tell, I tend more towards the strict camp although, hopefully, not unreasonably so.

After all, I would tell myself, over time we watched his behavior get better and his skills grow. It felt like we could see benefits to us holding him to high expectations. When we first adopted him, he didn’t know how to answer “yes” or “no” questions. We taught him how, a process involving offering him m&ms and either giving them to him or not depending on whether he answered “yes” or “no.” Although he became frustrated with us when he answered “no” and didn’t get an m&m, he also learned how to use the words accurately. Was this the template to work from? Hold our expectations and allow him to experience frustration in pursuit of increased skills? But where were the limits of his abilities? How far was too far to push him? Where were we just exasperating rather than training him?

Three years and three months after we adopted him, we started him on two medications. He takes one pill to soothe anxiety and another for ADHD-type symptoms. Suddenly, the compulsive habits we were familiar with almost disappeared, the questioning became less frantic and scattered, fewer (but still some) non-food items went into his mouth, fewer (but still some) items were the victim of his fidgeting fingers. At school, his teachers were thrilled with the changes. He was no longer a fire-alarm pulling, TV-screen cracking, eloping, attacking, yelling kid who had enough district staff to field a baseball team trying to crack the puzzle of his behavior. We had to laugh when one of the aides in his classroom marveled, “Most days I forget he’s even there. It’s great!” Never did we think we’d be so pleased to hear that.

I was thrilled. And horrified. If the alteration of his brain chemistry brought about by the medication made all of these problem issues we’d been trying to train out of him for years disappear, what did that mean? Had we been cruel to hold him accountable for behaviors that we could now prove were out of his control? To clarify, when I say “hold accountable”, I don’t mean that we harshly punished. I mean simply that we implemented natural consequences. For example, if he was chewing on a colored pencil instead of drawing with it, we took it away from him and redirected him to a new activity. Typically, he reacted to these sorts of consequences with frustration and sometimes even anger. Not infrequently, my temper would rise in those moments too. Now I thought back over those interactions and drooped under a crushing weight of guilt. Had I wronged him all those many times?

There was a complicating truth though: over the course of his three years with us, he had also grown tremendously. Family, friends, and acquaintances marveled over his improved speech, increased impulse control, and, in general, the way he was able to participate in more of daily life than he could before. Outings with grandparents were options for him now because he could communicate with them and because they could trust him to stay with them and keep many (but not all) non-food items out of his mouth. Rather than having to sit with us, he was able to attend group activities since he could listen to the teachers. He was so much happier having these experiences. In some ways, our high expectations had really benefited him.

Was there a way we could have held our high expectations without also exasperating him because of behaviors that were outside of his control? I don’t know. In teaching there’s a concept called “i+1”: in order for students to learn, you need to ask them to perform slightly outside their current abilities. This appropriate challenge is called the zone of proximal development. If we never push kids to perform beyond what they’ve already mastered, they won’t learn.

With that in mind, is it possible that it’s always necessary to hold kids accountable for behaviors that are, strictly speaking, beyond their current ability levels? When the two year old throws the blocks across the room, many parents will take the blocks away. Although it may frustrate or even enrage the child, the parent does it anyway. They do it because they want the child to make a connection between using toys inappropriately and temporarily losing access to them. If understanding that connection and being able to manage behavior accordingly were already within the child’s skill set, they wouldn’t throw the blocks to begin with. So, by definition, the parents are implementing a consequence for something outside of the child’s control. All parents, at one point or another, lose patience with behaviors like this and become frustrated or angry with their children. It seems undeniable that this anger is undeserved if we hold that the child can’t control their behavior. It will likely take the child many many repetitions of the block-throwing and block-losing interaction for them to fully internalize the connection and develop the impulse control to stop the blocks from going flying, especially when throwing them is so fun. Although parents can implement these consequences in a warm, nurturing way, there’s still bound to be some level of upset from the child as part of this learning process.

I don’t know what the right mixture of acceptance and pushing is. Even if I did know, there would still be times when my impatience and temper would get the better of me and I would react with anger. Getting mad at your kids in general does not feel good, and all the less so when your kid has a disability at the root of their behaviors. What I know is this: all those times I was asking him, whether in my head or out loud, “Why can’t you just stop?”, the real answer was “Because I can’t. I literally cannot.” What I don’t know is what to do with that information.