A Boy Named Finn

Finn: An Update ...

The problem with raising a special needs kid isn't so much the grief, the uncertainty, or the worry. It's the administration: Before I'd had my first cup of coffee this morning I'd already spoken twice to one of Finn’s six therapists. Finn has a more demanding schedule than most CEO’s. Then there’s all the various doctor appointments, medical procedures to perform and support groups and service coordinators and the like. The unsurprising result is that we never have time to do much more than put out fires.

These are, as they say, luxury problems. Even on my worst, most self-pitying days I’m mindful that parents from Guatemala to rural Arkansas would gladly trade my headaches for theirs. Finn receives the benefit of hours of top-notch therapy (running the gamut from Physical to Occupational to Speech, as well as specialized instruction for ASD kids), all paid for by the state. Not to mention access to some of the best doctors in the world. So, yeah, I shouldn’t bitch.

But I’m burying the lede: Finn is kicking ass. I went to Colorado on business for a few days last week and I came home to a different child. I walked into the nursery after unpacking, saw him sitting in the corner and said “Hi Finn” in the hopeful, singsongy voice we use when talking to him. And he turned toward me and smiled. A big, fat, Finn smile, illustration below (Note: In real life Finn sits in a vertical position. Typepad has chosen to display him, for reasons I can neither discern nor fix, as a landscape):

This is not normal Finn behavior. For one thing, Finn’s smiles have generally been so rare that a mere glimpse of one can trigger excited calls to spouses, friends and family. Further, I’d never seen him respond to his own name. And he did it like it was the most normal thing in the world. It was kind of like seeing my son for the first time. The next day I knocked on his door and called his name again. This time he crawled happily over to the door, opened it, smiled at me, then giggled as he shut and opened the door. It’s hard for me to describe the impact this had on me—It’s a bit like if your normally developing three year old burst into an impassioned analysis of Trotskyism’s place in post-Leninist Soviet political structures.

Not that any of this means much more than that Finn smiled a lot this week. Kids with ASD (Finn has actually now been diagnosed with PDD-NOS. If you know the difference, please feel free to tell me via email, blog comment or telepathy) develop in bursts. A few months ago Finn suddenly started sitting up and banging his toys together. We thought this might mean he’d begin standing soon, but he’s no closer to that now than he was nearly nine months ago. But as far as miracles go, I’ll take this one. A smile is the kind of immeasureably powerful force that we only appreciate in its absence, like sunlight or fresh water.

Finn, Tonight

Lovely, limber Finn, about to sleep.

Diagnosis

Today Finn was diagnosed with autism as being on the autism spectrum. Or is it Autism? It seems like such a significant word, to me, that I can't imagine spelling it without a capital A. I can't say why this event has spurred me to post to this blog. We've known since mid-February that Finn was ... different (Language fails miserably here, as it does in so many instances involving Finn and his ... "situation." His "circumstance." His "issues.") And I think we've secretly suspected all along he was autistic. Even asked his very first neurologist, back in those horrible first weeks after his pediatrician told us he might have "developmental delays" (another term triumphant in its linguistic ambiguity) if Finn's symptoms were "consistent with autism." Dr. Apeatu told us yes, but rushed to say that it was far too soon to diagnose autism, that this wasn't done until the child was two years old at least. And so we hid this possibility in the recesses of our brains with the other nightmare scenarios.

But this fall we finally ditched our Brooklyn neurologist (she was cold, clinical—we used to joke that she would certainly have known if Finn was autistic, as it takes one to know one. we're horrible) and used a connection of a connection to get us in with the head of pediatric neurology at Mt. Sinai on the Upper East Side. Who we saw for the first time today. He was old, in a good way, as in experienced, wise and trustworthy old. Big, gentle, practiced hands. Sad, knowing smile. He spent about ten minutes talking to us and another fifteen examining Finn. Then he told us Finn was "on the autistic spectrum," and he didn't leave any room for doubt. In fact, he was particular on this point. Months of booking appointments with ophthalmologists, gastro-enterologists, genetic counselors and endless discussions with his therapists looking for clues. All this, he said, was over. He felt our pain, he seemed to say but didn't quite.

And oddly, we left the doctor's office feeling an odd sense of euphoria. Finn was throwing a tantrum in the stroller and outside a cold, mean rain was falling. But we were laughing and joking and when we got stuck in the middle of Park Avenue I turned to Alysia and she was holding Annabel in her arms and saying, loudly, "It's an adventure! We're having an adventure," and the power of that simple metaphor seemed to envelop us all in its protective embrace. One of the most disappointing aspects of aging is how less frequent life rises to the level of cinema, but suddenly I felt like a protagonist—the good guy—in my own narrative. An hour later over inedible B.L.T.'s at a nearby corner diner I quietly told Alysia, appropos of nothing, that I somehow loved her more now than I did this morning. And it was true. There are no tragedies. Only plot twists.

Of course, euphoric periods always end with a crash. It's near midnight. I'm depressed now. And scared. And sad. I miss the boy we didn't have. I miss the boy I catch glimpses of, just every so often when Finn looks at me and smiles. But I'm still hopeful, kinda. Some autistics are brilliant, right? Or "high-functioning," whatever the fuck that means. And early intervention performs miracles, we keep hearing. Maybe he'll laugh with us someday and play with his sister instead of just staring at her and crying when she tries to hug him? At any rate, I now have a new to-do list. New books to buy, different agencies to hector and threaten. Who needs feelings when you have a list of numbers to call?