What’s the Frequency

But it really wasn’t expected, though.

I know it seemed like I did expect it. I’d been throwing the word around for months, over lunch with friends, or while introducing my son to new people. I’d say he was five, and they’d pause, squint, think…they saw a child who looked about three, who talked like a two year old crossed with a Minion.

And there I’d rush in with, “But we’re thinking he’s somewhere on the autism spectrum. He’s a little delayed.” I’d waver my hand side to side to emphasize the lightness with which we assumed Jack touched that spectrum. If it were a rainbow he was ultraviolet…hardly making contact with the splits of light at all. Most of him was blue sky, just like your kid. He was just delayed. He was premature and all. No big thing. He’s like his Dad, is all. Quiet and such. He’ll catch up.

So actually, I didn’t expect it. I walked Jack through the seventh floor lobby of Doernbecher’s Children’s Hospital in Portland, straight back to the Purple Chipmunk desk as instructed. It was the behavioral unit, I guess. And I gauged Jack’s placement among the other children in the lobby.

I was pleased with the comparison. Not in a wheelchair. Not staring into empty space. Not incessantly talking in a scratching nasal voice. Nah. Just my lil guy. He stood right at attention for his weigh in and height, watched with cooperative fascination as a blood pressure  cuff near the exact same size as his toy one at home was squeezed on his arm.

An hour and a half later, a world-class, wait-5-months to see Child Development pediatrician was handing me Kleenex. I’d need to see three or four more of their specialists, but provisionally, his diagnoses mid-way spectrum. And we’ll need to check him for mental retardation and chromosomal deficiencies. We can’t rule those out yet. 

We can’t tell you if he’ll be whole when he grows up. We won’t tell you it will be ok. We won’t even give you a goddamn pamphlet on how to handle the death of the son you imagined you had.

Have a nice day.

No. No no no. Just because he can’t finish the alphabet song? Because he doesn’t count past eight with real words? Because he can’t say what a nose does? That’s NOT the entirety of my son! Remember how he told me he had to pee? He potty trained right on time and never has accidents. How he played with the blocks with you? How he did the stuff you asked, even chirping with great indignity, “WhyyouwhatDOING-that???” when you quickly checked his genitalia. That’s a smart kid. He’s aware! He’s just…words is all. He can’t do words.

I didn’t know what autism was. I still barely do. It’s a catchall. A way to describe people that don’t fit in. We used to call them nerds, weird, and if it was deep enough on that invisible spectrum, retarded.

It turns out autism does have firm characteristics. Speech delay. Jack has the vocabulary of a three year old at best. Social difficulties. He has no interest in friends his own age. And most importantly, he isn’t a team player. When he’s done, or not interested, that’s THAT. Which means he quit abiding most of the doctor’s designs after about forty minutes.

You should know, they don’t call it retardation anymore. They skimmed a thesaurus and now they call it “Intellectual Disability.” Which will take about one generation to become a nasty pejorative all over again and then back to the thesaurus. We all know what it really means.

It means the man who makes you uncomfortable. It means no college. It means no wife. No buddies. No watching him play soccer. But then your mind slips, as if down a ravine, and it keeps adding to the list. It means never leaving home. It means never taking care of himself. It means sitting drugged and dead eyed in a mental ward or cold and filthy over in Junkie Park. It means everything you ever feared for your child.

I know, I know. “It doesn’t mean ANY of that! People on the autism spectrum (and we do NOT call them Autistic for they are NOT their disorder) lead rich lives!” Invariably someone mentions Bill Gates and Einstein. And truly, I thank every book and person who responds that way. Thank you for your comfort. On some level I know you’re more correct than I am.

But he’s mine. He’s mine!

The scarier stuff, Jack doesn’t have that. He is happy to meet strangers and tries to talk to them. Eye contact, affection, pretend play, empathy, misery when punished for naughtiness that can only end in a cuddle or he’s not okay. He’s got those in spades. Tonight to my surprise he hit three out of five wiffle balls pitched at him.

But he…as an old friend whose own father was “Intellectually Disabled” from a lack of oxygen at birth said…he’s on a different frequency.

There. My son’s not on your spectrum, your stupid rainbow of pain and awkwardness. He’s on a different frequency. And the music coming through is odd and sweet and slow and brilliant. Nothing you’ve heard before.

But my frequency. High pitched to whining…angry talk radio that doesn’t quite seem authentic. I know how I sound. I know.

That’s just all I know, right now.

 

 

 

3 thoughts on “What’s the Frequency

  1. Touching reflection. Again, so sorry that your family is going through this. I have a good friend who has an autistic son who is now about 22. About a year ago, with help from a social work service, he got a job at Walmart. He is thriving. I will say a prayer for you and yours.

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  2. I am so sorry. What a painful thing to face! And I know it’s no comfort right now, but I have to say that I’m awed by the power and beauty of your writing. Your passionate love and commitment for your boy burns through, and my heart is aching for you.

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  3. “…your mind slips, as if down a ravine, and it keeps adding to the list. It means never leaving home. It means never taking care of himself. It means sitting drugged and dead eyed in a mental ward or cold and filthy over in Junkie Park.” Therese, gonna slap you now, sorry–pretend I’m that nurse that got in your face during labor and ordered you to “BREATHE.” Here goes: Jack is not a stereotype. He is not a trope. He will need you NOT to let him fall into a space the docs tell you he belongs in. He will need you to help him become all that he CAN become. He needs a mom that can say, “OK, then. Here’s where we are; we want to go here; let’s find a way.”

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