Label? Label? Who’s got the label?

An umbrella…but not as you imagine.  I picture it upside down, full of adjectives and verbs and adverbs…all actions….actions my child does.  Deep inside, there’s a 10 year old boy who feels trapped in a world of too much everything.  I can see it in his eyes in those rare moments during a meltdown when he looks directly into my eyes…pleading….begging….what do I do mama? make it stop mama!  Ears covered, feet trying to run, loud tribal throat singing to drown it out, body convulsing…..

I have to show him how to respond…I have to model….because at this point, words are just more full body-pain noise.  My instinct is to bundle him into me, cover his body with mine like a roly poly around itself….cocoon him and surround him…..

And when he was 3, that was easy.  But he’s 10 now.  Puberty is setting in, and he’s getting bigger and stronger every day.  Soon, he will be 6 foot tall and 200 lbs.  I won’t be able to rescue him then.

I put one hand on his shoulder, firm but gentle and loving.  I get my face level to his, but not too close (headbutts are unintentional but they still hurt!)  and say in a calm, neutral voice, “Stop please.”   He stops yelling,  so I say it again, “Stop, please…..Stop, please” calm, almost monotone.  Gentle.  His eyes look into mine, still pleading, but he stops.  “Take a breath, please”….and I show him….in through the nose, out through the mouth, arms lifting up then back down….and he follows me, mimicking  my facial expressions.  After the breath, he holds up his hand and begins to count…. “1…..2……3….” all the way to ten.  Then we take another breath.  Then I say “I need your words please?”  And he processes this request, I can see the wheels turning.  Sometimes a word troubles him, and he starts to look discouraged, so I suggest things…. “Do you need help?”  “is something broken?”  This gets us going, and soon we have a full sentence.  “I need help please because my headphones are broken”  “I want pizza please because I am hungry”  “I want bedtime please because I am tired”.

The boy is labeled as non-verbal, but that doesn’t mean he doesn’t communicate with his voice.  The professionals call it “echolalia” , the repeating of someone else’s spoken words, like a parrot or a macaw.  But I don’t buy that.  The boy uses lines and songs from his favorite TV shows to communicate.  You just have to pay attention.  Imagine a language that is pure metaphor, like Darmok and Jalad at Tenagra (yes, I’m a geek) .  Boy’s allergies are very bad, especially with our extremely hot or cold temperatures.  He made me sit down with him and watch his favorite show, Wonder Pets.  The episode he chose was one where an elephant has his trunk stuck in the mud.  All through the episode, he’s pulling my face to look at his, and messing with his nose.  You tell me he was just repeating a show…….

We’re standing in line in a store the other day.  He starts rattling off in Spanish, and I assumed he was parroting a Dora the Explorer episode, so I didn’t pay much attention.  A lady behind me asked if I spoke Spanish, I said no and explained his echolalia.  She interpreted for me, Boy was saying “Hurry up.  We’ve waited too long.  It’s time to go.  I”m tired of waiting.”  I’m thinking it’s time I learned some Spanish.

And then, last week……he walked over, kissed me on both cheeks, then went back to YouTube like nothing had happened.  Who needs words anyway? Sometimes I think they’re way overrated.



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Pearl Manhattan

Life interrupted - this space is changing - stay tuned

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