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?

Comments

[Rob Capps]

Hey Jeff buddy,
I like the post, made me tear-up a bit. I know you guys will find your way. Our son is nearly the same age as Finn, and I keep thinking about how this must feel for you. I always think two things: I would just want him to be able to be with us, and I would want him to have the capacity for happiness. That's what really matters to me for our own son, and you have a great shot at both of those.

Since you're blogging this, I do have questions (perhaps overly invasive). When did you know something was off? What are the milestones that finn missed? I'm sure,like me, many parents with an infant (and planning to have another) would like to know the details of your journey, and how you move through it.

[Josh]

Good news for you is early identification is a huge factor in working with special needs kids, especially those on the autism spectrum. You'll hear more acronyms than you want, but one you'll start seeing is ASD (autism spectrum disorder). ASD is an amazing range, so don't set limits on Finn's abilities because he has a diagnosis.

Not that you need more information etc, but another person experiencing their child's disability in public has been Robert Rummel Hudson, and gives an amazing account in his book Schuyler's Monster, and has a blog also.

I'll be following along, best of luck.

[Regina Mullen]

I'm belatedly getting to Crowdsourcing, but wanted to cheer you on and give you a little "psychic boost" over here as well.

You got the diagnosis early, --which is so very important and you're in for a wonderful life with your son.

It'll be hard, but I bet that you can make it, because you know you don't have to go it alone!

Most importantly, take good care of yourselves, so you bring your best self to the challenges and are open-hearted enough to recognize the triumphs.

Happy to correspond off-line.

[Jason Weden]

What is hard to articulate is my work with the developmentally-disabled (dually diagnosed with autism) years ago. It changed me for the better in ways that affect me to this day. It will indeed be an adventure and you'll see God's love in ways you could never imagine. There is a special side to this as there is in every adversity. None of us interact with the world in the same way, and those who do so on a different level are in no way lesser. Why is it that those who were the most "against the grain" made my life richer, more special, and more aware God's glory? I think Finn will answer that question for you and such will be my prayer for you tonight.

[Sean Buvala]

Thanks for sharing your story on Finn. You'll also learn in time that being on the "spectrum" is not just a diagnosis to be dealt with, but a gift to be enjoyed.

You'll find most of us who have children in the spectrum value their uniqueness and world view.

I know there is the normal "missing the boy" you might have had. I invite you, man-to-man and dad-to-dad, to see the boy you have. You'll find you are missing nothing in the long run. You might even find yourself a bit jealous of the unique gifts he will demonstrate as he grows older.

And, it's hard to do, but never view your child as a diagnosis. He's your kid, complete and whole as he is now. Our ASD children are okay- even when they may need particular help in a particular area from time to time.

Hang in there and thanks for sharing this.

There are a lot of us dads who have and are walking this path. Call on us.

-Sean

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What is the name of the Doctor you went to in NYC Mount Sinai?

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