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What Spectrum Means

Jenn furrows her brow in her sleep. Which seems ironic, because though rest is for the wicked, it seems the appropriate thing to relax your face while in Nod when you’re not actually wicked.

Jenn, of course, is far from wicked.

I know better, now, then to try and smooth her forehead with my thumb; she’ll just consternate worse on the pillow. And then she’ll be grumpy at me for having tried.

Not that she’s mad at me. We all just have ways of holding our face.

We all have ways of holding our face. I realized this with Finn the other day. He’s hypotonic, meaning he has low muscle control. But he walked far earlier than was predicted, and—before that—he learned how to express himself by manners of smiles and ‘Ta-da’s’, with hands held out in comic prediction of an audience.

I have to explain this all the goddamn time.

“Seems your kid’s high-functioning.”

I don’t get mad. I should. Then again, I shouldn’t. You learn things, and instantly you have to become a teacher for things you didn’t know the day before. You can’t be mad at people that didn’t have to do a quick-study, like we did, with absolutely no preparation.

I have to break out my lecture, constantly, the things I forced myself to learn within two nights of Finn being born.

There is no spectrum with Down Syndrome. Hypotonia means any muscle group can be affected. Voluntary, involuntary.

Finn had a bad heart. Everything else worked. But low muscle tone means there can be any number of effects. This can translate as lo-functioning or hi-functioning. But  isn’t that the case for all of us?

I tell people: this is not a spectrum. Just because I don’t want anything to be misunderstood. I have a fierce love for my kids, and being a Dad was my goal in life.

And while Finn was growing, and while we didn’t know what would be diagnosed later, I wrote every night to my friend while Jenn slept her pregnancy sleep.

Delaney had 174 IQ, Asperger’s—whatever is the new name for it. He was spectral, beautiful, a complete constellation unknowingly formed, and my gorgeous gorgeous friend.

I love spectrums, absolutely, like I love prisms; I just hate misdiagnosis. Delaney was my biggest comfort for the year before he died, and I hope I was his, too.

‘Spect’ is the root of ‘spectrum’, ‘spectacle’, and ‘spectacular’.

‘Spect’ means ‘see’.

So Finn: I realize recently how he holds his face. He waddles around the house, and immune to his diagnosis—still crooked like me—always turns his head up and to the right.

Psychiatrists who pretend these things, say that particular and phrenological posture means you’re constantly lying. If you’re looking up and to the right, it means you’re willfully withholding truth.

Finn doesn’t lie.

I watch him roam the house, happy.

I always combine Finn and Delaney as something experienced at once. Spectral, and not. Both, together.

How do I hold my own face? This I’m uncertain of. But I watch Finn play with his toys, everyday.

“My…Name…Is…Finn.”

(He preps for show and tell).

“I…brought…a…”

Doesn’t matter what he picks. He always tells the truth.

 

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