one Capri Sun too many
9 August 2004
When Damian cries and storms and occasionally even curls up in a sulky ball on the couch, dramatically illustrating his displeasure and pain, we sigh (dramatically, yes, us too) and think it’s because his remaining issues make it harder for him to stay on an even keel, that he can’t integrate his emotions the way other children can, that he has trouble regulating his body and therefore his mental state. We worry that he’s not getting enough sensory integration therapy, we vow to take him to the park more and up his swim lessons, we talk about buying beans to pour into his now-empty sandbox. We talk about limit-setting, we talk about examining the stressors in his life, we talk about how to talk to him. We strategize, we worry, we consult. Are we giving him enough support? Helping him sort through his emotional state consistently enough? Playing with him enough? Is he backsliding? Is this an extinction burst before a huge developmental spurt? What does this mean?

When my friend C’s daughter cries and storms and falls apart twenty times a day, C sighs and says, “She’s going through a rough time right now.”

The difference? A diagnosis.

Damian’s been, shall we say, emotional lately. All summer, though he seems to be calming down now. I wanted to write about it here but I was too busy dealing with it. When a kid screams and yells and cries, when he falls apart if you ever-so-gently tell him he might be courting a nasty bruise if he tips his chair back like that, it’s hard to know how to tell that tale. It’s also hard to know how to handle it. If you say something – anything – that could be construed as a criticism or scold, he tells you, “Don’t say that!” and “I don’t want to hear it!” and “I won’t love you anymore if you say that!” (Which last is always followed up by “I won’t love you until tomorrow!” or “I won’t love you until dinner time!”) and finally sometimes, “Aaaallll riiiiight, but you have to listen to what I say tomorrow!” It’s almost funny, it is, and yet it’s also not. Because, well, screaming. Lots and lots of screaming. Hurts your ears. Wears you down. Makes you crazy. Makes you wonder if this child will ever be able to enter the social and work worlds. If he’ll ever be okay. Because this yelling, it’s not on the spectrum of okay.

And then a friend online casually mentions, “Yeah, my son is having a lot of breakdowns lately” and another friend says “She’s been upset a lot,” and these children, they’re the same age as this non-functional child of yours, but without the label on their heads. And so you think, “Ah.” And you sigh, only this time not with such exasperation and despair, and you think that maybe, just maybe, this is not a sign of a great aberration, of a divide between him and the rest of civilization but instead is a sign that he’s developing quite, dare I say? Normally. On course for age six plus three months. A time, apparently, of great emotion.

That may end up being the greatest divide between us and parents of typically developing children. We have all the same parenting issues only we also have more. A longer checklist of sources and concerns. A more suspicious outlook. We can’t take for granted that he’ll grow out of it because what if it’s neurological and not developmental? Or maybe an emotional reaction to a neurological tic. Or, more accurately, a neurologically different response to the same developmental phase. In which case, we do indeed need to marshal our forces, call in the troops, plan our approach.

An example, and a big one: during this period, Damian has been not only volatile (the word volcanic comes to mind) but also extraordinarily controlling. You must do things this way and no other. Every time exactly the same, to boot. Little rituals popping up everywhere. I must stand by the front wheel while he opens the car door and climbs in. He must go into the house first, get to his bedroom before I turn off the alarm. He must be able to wave goodbye to visitors (or us) through his front window. He must wear socks at all times. If he has to pee while getting dressed, he must put on one sock and hop to the bathroom. He will only drink Capri Sun if we’re going straight home, never any other time. We must have a race from school to the car, and I must therefore carry his lunch bag. He must eat the red gummy vitamin bear last and only in the car, not in the house. Some of these are funny and he does them specifically because they’re funny (hopping to the bathroom with a wide grin). Others, not so much. The Capri Sun rule, for instance, grew into a ritualized guessing game. “Do you know what juice I want? It begins with a C.” Didn’t matter if we guessed cockatoo juice or cough drop juice or just jumped straight to saying Capri Sun, the point was that he wasn’t going to say the words. Nuh-uh, no way. It’s a rule and you must follow rules to the letter.

This is a subject I’ve barely touched on here. Rules and rituals. They’re very common with people on the spectrum. So common I’d say they’re a defining characteristic. With Damian, it seems to come and go. He has certain rules he keeps forever, or at least until they gradually fade away, and we can live with that. We all have our magical thinking, our “the world should work this way” feelings and our “but I have to have coffee before I brush my hair, not after” quirks. My feeling is that sometimes this can help define your life and that’s okay. But when the rituals proliferate, it’s a crazy-maker. For everyone. Because when you break a rule – not everyone remembers to wave to Damian through his window; sometimes I have to run to the bathroom and so have to turn the alarm off as quickly as I can – when that happens, he falls apart. And that’s not okay. Flexibility is important in life. Equilibrium is too. Emotional highs and lows can’t be off the voltmeter or you’ll break the equipment, or at least break your mother’s heart (and ears).

I think it’s directly related to control. When your surroundings, your emotions or your life feel out of your control, you try to keep a grasp on what you can control. For a six year old boy on the edge of the autistic spectrum, that means creating nonsensical rituals, making everyone obey his command. It backfires, of course. It means ending up more upset more often, but the subconscious mind doesn’t always work so logically. And so the rituals are born. And then more are born. And still more. Ritual begets ritual like bunnies without birth control.

Some people think you should define which rituals you need to address and leave the rest alone, that it’s not worth fighting them on all fronts. To some extent I agree. I don’t think you should break a child. It’s important to give him some dignity, some personal power. To acknowledge his desires. But. When the rules get to be too much, too many, we also have to show him that this affects other people. That we can’t live like this and nor can he. That by ringing himself around with rules, he’s suffocating himself.

We started with the Capri Sun rule.

“Guess what juice I want. It starts with a C.”

“Damian, I won’t guess. When you’re ready to tell me you can have it.” And just for good measure, “We have chocolate milk, capri sun, tropical punch, and apple juice. Which one do you want?” (this is in case he’s having a word retrieval problem and can’t in fact articulate his choice).

His response? “I want the second one you said.”

“As soon as you tell me the name, I’ll be happy to give it to you.”

Two car rides. No, three. Three days in a row, arguing the whole way home. Well, he did the arguing. We tried to stay calm. He ended up in two cases grabbing the whole juice bag (I think it was in reach the first time, the second time I gave it to him). Getting his own Capri Sun. The third time, he drank it after we got home. And after he stopped crying.

I sat down with him later that evening. I explained that we can’t keep doing this, having rules that don’t have any meaning or reason behind them. That this was going to keep happening. He said, “What if I just say the first word? If I can say Capri?” I shook my head. I don’t want another ritual. I want normalcy, at least in this. We sat for a while. He finally said “What if I say ‘Capri’ and then pause and then say ‘Sun’?” I agreed that this would be fine, that he could get used to saying it and then when he’s more comfortable with it he can leave out the pause.

Which is what has happened. Not only that, but because we agreed on a plan together and he was a full participant in the plan, he was positively cheerful when he asked me for “Capri … Sun.” And then immediately, tripping over his own words, “See how I did that, Mommy? See how I asked?”

“Yes, I did see how you asked. That makes me very happy, Damian.”

Such a small problem, such a huge drama. Why did we bother? But it’s funny how it works. I’ve noticed a lessening in rituals the past few days. After the Capri Sun incident, I think he finally realized what we meant. That these rules do drive us nuts and yes, he can live without them. And so they begin to drop away.

I think it’s about empowerment. All of this. The extreme emotionalism of this particular age as well as the overgrowth of these rigid little rules, like weeds underfoot. And I think that as he grows into the next phase, a more emotionally integrated and independent phase, he gains the wherewithal to let that all drop away.

He’s even getting a little better at listening to scolds.

But just a little.

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