Susan's Blog

Sunday, March 4, 2012

Because now I see him

Way back when Nat was 3, and he got his diagnosis of “Expressive Language Disorder with Autistic-Like Symptoms,” I was filled with fear because it felt like people were talking to me in Newspeak, a la 1984.

Because there I was with my perhaps-Spectrum-like antennae, and it felt like people were lying to me, but in soft cottony whispers that stuffed up my ears. This situation made me live inside my head. Kind of the way it feels when you sleep with ear plugs; a slightly achy headcold-ish feeling.

You’d think it would be all relief and also “now what?” that I felt back then, but there was also a big feeling like we still hadn’t gotten to all of The Truth About Nat. During those days, when I was just 30, I was so unhappy, but one huge truth is that it didn’t have to do with Nat. I was suffering from OCD, which shamed me so much because those behaviors were inexplicably irrational to me but I couldn’t stop.

I worked so hard to overcome that, and I did. But one thing I do remember is that my OCD was one of the first things that informed me about Nat. I couldn’t help but notice the way he would repeat things, over and over, from walking in little circuits (which we now know to be called Joyful House Stompies, or JHS) to reciting his books, the same sections, repeatedly in his little jingle bells voice.  Oh how cute, delicious, beautiful! And now gone, forever. But back then I lived under such a shroud of shame — for weird me and weird Nat — that I know that the sheer loveliness of Nat and those days were somewhat lost to me.

Thank goodness we learn to channel. My mushy helplessness hardened into a defensive passion for Nat. When we took Nat to Dr. Bauman and finally heard the word: Autism, I was no longer numb and dumb. Autism was true, autism was right. I was no longer being lied to.

And yet I still wasn’t satisfied that this, indeed, was Nat. I remember going on and on to my Dad, especially on those particularly golden days when Nat burst out with something that showed me all that truly was going on inside him. The little teasing hints of color, like you get with the March crocuses, a flash of brilliant purple nearly invisible against the mat of muddy leaves.

“They’re wrong,” I’d say to Dad. “I know they’re wrong. That is not who he is.” And because I did not understand the complex nature of autism — how it isn’t about inferiority or brokenness,  rather, it is only about taking in and processing everything differently from the norm — I fought that designation.  “Actually, I think he’s not autistic at all. He’s gifted.”

My Dad, in his unflagging confidence and total delight with Nat, said: “You’re going to find he’s gifted.”

For years after that, I thought of those words, and choked a little on them. Gifted, right, I’d think to myself. Oh, Dad. For Nat was deeply and thoroughly autistic, and to me, the worst had come true: very little verbal communication, much ugly stimming that was all too much like my beastly OCD, the emergence of nasty aggression, and fighting everything we wanted him to learn!

Except there would still be those glimpses of spring, those moments that took my breath away and thawed my scared, frozen heart. Like when he told his first joke. Pointing at me, saying, “It’s Daddy! Yes!” grinning ear-to-ear. Or when he started talking to us about his fascination with danger: “Nat will jump off the building and head will bleed and bleed.” Or when he got his first medal in Special Olympics.

During all that time, and before, and since, Nat was just being Nat, which doesn’t really need anything more than that, but I allowed my ignorance to darken that sky. Well, as Bob Dylan said, “I was so much older then; I’m younger than that now.”

What do I know, that has led me to this youthful appreciation of my extremely quiet and incredibly elusive darling son? I know the simple Truth: Nat is Nat. Nat is autistic, and Nat is gifted. And the proof does not come with a diagnosis or some kind of acronymed, hyphenated test. The Truth About Nat is before me, everyday, all around me, in his living, breathing, personhood. In living color, not just small bursts, because now I see him.

So when Ned came back with him from Special O swim practice this morning, and told me that at the end, Jen had gathered all the team in a bunch and said, “Okay, so should we do our cheer?”

And that Nat had then shouted, “Yes!”

(I was already smiling because I knew this would be good.)

And then Jen had said, “What cheer?”

And Nat had shouted out, before anyone else, “Brookline Sharks!”

Ned and I laughed, sharing one of our countless moments of joy in our grown up son, whom we now know is definitely gifted.






Oh, Susan, this is so my Evan, too. Every day I wake up to “autistic.” Every evening I end it with “gifted.” Evan will be 25 this month. I thought my grief would be endless, but, like you, I find Evan is my bountiful joy.

— added by Marikay Tillett on Sunday, March 4, 2012 at 7:07 pm

There is a part in this post that is eerily word for word how I explain my daughter. Even before we got a diagnosis when someone asked how Eden was we would answer, “Eden is just being Eden.” It wasn’t just to describe her being good, bad, difficult, or anything particular. It was just the best way to describe her. Even as a small child she was difficult buy we could always see she was trying. That statement is one my whole family knows, and we use it to describe Eden. She is doing JUST that, being Eden.

— added by Melissa M on Sunday, March 4, 2012 at 9:04 pm

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