Sunday, June 14, 2009


I don't know how to describe accurately how bewildering Max's meltdowns are sometimes. It looks like he is violently casting fishing line out of his arm, leaning way back and then flinging forward in a tightly-wound bent-knee standing crouch. It has occurred to me to videotape one of these -- simply to show someone exactly what is happening and how completely bewildering it can be.

His entire body seems to be directing towards the thing he wants...and yet it's not, really. I can head in the direction he's indicating, ask about the things I see there ("is it this?" "Do you want this?" "SHOW ME WHAT YOU WANT!") and he just keeps angrily shaking his head no, casting that arm repeatedly, pulling at his shirt in agony, blowing snot out his nose, spitting, hitting his cheek, pinching his arm, slapping his thigh, banging his head. There is such a blankness beyond the moment of fury, such a disconnect from all he knows (his signs, specific pointing, WORDS!). And even though they are intense, his meltdowns doesn't end with him collapsing into a puddle of exhausted tears on the floor. He continues to give this agonized directional pointing until he eventually just...stops. It's as if he gets stuck. And then suddenly he's unstuck.

I've tried various approaches and pretty much everything in my bag of parenting tricks -- time-outs, physically holding & restricting him, even in-your-face scare tactics like smacking his hand or thigh, grabbing his face to make him focus eye-to-eye. I've tried the gentler family of approaches, too -- ignoring, turning my back, leaving the room, calm repetition, distraction, observational & empathetic comments ("I can see you are really frustrated and trying very hard to tell me something"), re-stating rules ("no hitting", "no spitting", "you'll need to be in time out until you can calm down"), offering cues ("point to what you want", "use your hands/words"), naming/touching/suggesting objects he might want, guessing, offering reassurance/kisses/hugs, offering alternatives, promising reward when he stops. Some things work more consistently than others....but it remains a giant guessing game and makes me feel largely ineffective.

I think there are times when he doesn't even know what he wants -- when an original frustration or upset simply morphs into something beyond his control. And that is what makes it so difficult. I'm playing rounds of scary charades where there is no correct answer.

Yesterday, he went on and on and ON. I eventually determined he wanted to watch Finding Nemo, a movie that was out of his reach. He knows how to sign "fish" to say "movie", he knows the dvd case by sight, he knows where it is kept. But somehow ALL these things vanish. I was even naming movies, offered to lift him up to grab it, holding up options ...NOTHING.

When the episode finally ended, and I realized what he wanted, he was relieved. Tired, smiling, suddenly focused. I made him sign "fish" and say "movie" several times each. I fed him the phrase "" and "" several times each. He could do them, quietly and calmly and with a smile. (He even shushed me -- finger to lips, "shh" -- to do it quietly.

And then he was fine. It was over. Completely over, fully back to normal. (For him. But I remain shaken and frustrated and the whole traumatic episode lingers in my mind.)

It was helpful to read this article from Disability Scoop about "Behavior, Taming the 800-lb. Gorilla" and to see the phrase "out of his control" because that is truly how it seems. The key point that stuck out for me was the difference between a tantrum and a meltdown.

In the article, Deborah Lipsky explains, "It depends whether you’re dealing with a tantrum or a meltdown. A meltdown is when behavior is beyond the individual’s control.....Generally with a meltdown the person is not looking for a direct response from you. Afterwards there’s often a sense of remorse and regret. A tantrum is a manipulative behavior, a scheme for a person to get their own way."

That definition helps me to think about the situation differently. If Max is truly having meltdowns, then my sense that he doesn't even know what he wants is probably accurate. (And that would require a different set of responses from me than a tantrum would -- probably solutions that are more sensory-based.) I still don't know the answers here, but it is definitely food for thought.

But I still want to know WHY. What triggers this? Why does he suddenly forget what to do? How to say it? Why doesn't it occur to him to communicate?? I mean actually attempt to communicate -- using his brain, his hands, his mouth, his words, ANYTHING, instead of transforming into a bundle of raw ...something. I know the meltdown itself is communication of sorts, but it is such a regression. (And if he is truly out of control, why can he keep to a repeated routine, manage where he bangs his head, etc..?)

I called a Behavior Specialist. We're setting up an appointment.

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