A voice is a human gift unless…

Hello, Denial and Numbness!  You serve a purpose when you arrive…you make us think we don’t have a problem and that we don’t really care what said non-existent problem is doing to us.  You also stand in the way of any purposeful effort to fix the problem.  No worries.  You will eventually morph into Frustration and Helplessness.  There are no practical travel guides for any of these territories; no one really mentions “oh, by the way, that lovely trip you’re going on will include earthquakes, tornadoes, flooding and a nice bout of dysentery.”

That’s what it felt like when J started having his nuclear meltdowns.  A Griswold Family Vacation would have been preferable.

People, well-meaning yet clueless, asked if we were ok.  When someone asks this, they usually formulate it as a rhetorical question, quickly followed by a kind (and rhetorical) offer of help.  “If you ever need a break…”  A break?  Please, explain, I wanted to say.  You think if I take a break you, with your kindness and inexperience, will be able to handle what I handle every day?

Were we ok?  There was no simple answer.  We were healthy.  We had a roof over our heads.  We were employed.  We were “keeping it together.”  Other than that, well, things were pretty screwed up.  Our son was suffering.  We were completely clueless about how to help him.

The Behavioral Assessment Specialist asked us to keep a log of what preceded each meltdown.  Ah…where to start?  You know how people say “if I don’t know what I’m looking for, how will I know I found it?”  THAT is how we felt.  We started noting every single thing that surrounded us, and it started driving us nuts.  We walked around listening intently, sniffing the air, touching things, even trying to determine if the air felt heavier than usual.  We observed our son like the subject of a wildlife documentary, waiting for him to start acting as if he was about to act up.  We were trying to predict when The Big One would sink California into the ocean.

This state of alertness was emotionally exhausting for everyone involved.

Every parent of an autistic child will tell you that there is something about their kid that is a greater source of frustration than anything else.  We know that things would be so much better if it wasn’t for [insert sign or symptom here].  Yeah, we all have one of THOSE things.  It drives us NUTS!

Don’t get me wrong: when you have an autistic kid you get pretty skilled at counting blessings.  Every achievement (regardless of how absurdly banal the rest of the world might deem it to be) is a big deal!  It gives us hope.  It fortifies our faith and propels every subsequent effort.  When you have an autistic individual in your household you live with a lot of exclamation points…people think we drink too much coffee.

Non-verbal.  This doesn’t mean “quiet”…this just means that, of all the things that could possibly go awry with your kid, he/she does not speak.  It’s not that they are mute, it is just that their speech is not significant, it lacks purpose.  Echolalia…there’s a word for you!  “Hi, honey!” you say.  “Hi, honey!” the child repeats in the same tone.  “How was your day?” you ask.  “How was your day?” they ask back.  There is no exchange of information.  In our case, our son is non-verbal; also, when he repeats what we say, it’s not even properly enunciated.  Words come out in pretty much the same way Peppermint Patty and Charlie Brown hear them when their teacher speaks.  So “Hi, honey!” is returned to us as “Ah ohnee!”

Yes, J uses PECS.  Yes, J uses sign language.  (We’re working on the whole iPad thing, but have you looked at the economy lately?)  The availability of these resources falls a little short in some areas.  Have you ever tried to throw a tantrum with PECS?  When a person his size (he’s a teenager…not a delicately sized one) tries to express his anger with what signs he knows, it can come across as threatening…

The definition of voice is sound produced in the larynx and uttered through the mouth as speech or song.  Noise, on the other hand, is defined as sound that is loud, unpleasant or causes disturbance.  Harvey Fierstein has said  “…the average voice is like 70 percent tone and 30 percent noise. My voice is 95 percent noise.”  J’s ability to use his voice was seriously impaired…that’s when he came up with “The Grunt.”

The Grunt is a sound I can try to describe and replicate.  It’s primeval; imagine a wounded caveman in pain.  Multiply by ten.  Imagine a wounded animal.  What does that animal sound like?

Before you are horrified by the comparison with a wounded animal or caveman, please, consider that I am being frank, and that stripping things down to the bone lets you understand, layer by layer, what it is you’re facing and have to address.  The Grunt is a sound that, in its rawest form, expresses emotional pain so deep that it can elicit tears from any member of our immediate family.  In the middle of the night, The Grunt makes you feel anxiety and urgency similar to those that arise when someone yells “earthquake!” or “fire!”

The Grunt became part of the everyday soundtrack of our lives.  It was frequently accompanied by a raw scream…deep in tone, grating, widely open-mouthed.  They were the harbingers of a meltdown; they escalated and intensified with the anger and frustration, and we didn’t know what was causing them.

 

 

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