November Blue

Dear Moira,

With a labor that began in the morning and ended at lunchtime, I never did walk outside on the day you were born. The curtains stayed drawn so you and I could rest. The midwives told me it was a dull, gray day with intermittent rain. That’s typical for northern England in late fall, but so wrong for you. The week we’ve just passed is more like the days I remember leading up to your birth, and more like you: sunny with the golden, brief light of autumn’s end; full of wind and bursts of wild weather; brilliantly blue skies giving way to fierce sunsets.

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My heart is dancin’ to a November tune 
And I hope that you hear it singing songs about you 

You sparkle. You are effervescent, ebullient. You drive me absolutely barking mad, and even as I am howling “MOIRA! STAAAAAAAHPPPP!” I can’t help but hide my face so you won’t see me grin. You have two sides: the winsome charmer who makes friends with everyone, and the hooligan who will spit milk out in an arcing fountain if dinner is too quiet for your liking. You’re a pop song with a twist, snappy and catchy and fun until somewhere in the middle you get hit full in the chest with a devastating bass line.

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I don’t know why I have to, but this man must move on 
I love my time here, didn’t know ’til I was gone 

You’ve moved fully into capital-T TWO, and there is so much that I miss and don’t miss. I don’t miss waking up 3-4 times a night and I just adore how hard you sleep and play now. I can count on you for a) a three-hour nap, b) a generally easy bed time (puncutated by the odd “Moira! Get back in bed!”) and c) to appear either at my bedside or in the doorway of the bathroom after launching from your bed like a jack-in-the-box. You don’t get out of bed in the morning; you spike the day like it was a volleyball. You have a pacifier now because you were biting, which is why I cheerfully forced you off the breast at 19 months, so every morning is punctuated by your constant low-level “mrrrrrrrrr mrrrrrrrr” engine-revving around your binky. You’re so full of life and full of a toddler’s curiosity. It’s wonderful, but cradling you in my lap on our flight back from Morocco, I realized that the only future guarantee I’d have of you falling asleep on me ever again was if you were sick. The little sleepy sack of newborn who happily conked out in my arms was gone; only a little bit of her remained, mostly in the smell in the fold of your neck. We–mostly I–were ready for you to stop nursing and to start sleeping without assistance, but I’ll never nurse another child again. You were the last.

And that’s why in the end, I loved every second of babyhood with you. Even the parts I hated, and even the parts at 3 a.m. that were so exhausting that I cried. I loved it because it goes so fast, and you were the last one. Now we’re moving on, and a full-blown child has taken that baby’s place.

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November shadows shade November change 

And wow, that child is powerful. Strong. Emotional. While your speech has come on considerably your consonants are still a bit muddled. When you get passionate and agitated–which is often–we can’t quite make you out, which leads to flat-on-the-floor explosions. You scream like you’re being cut with razor blades, and throw yourself into my arms. On the last occasion you did that, you visibly passed the point of no return–I could see that you knew this was ridiculous, and the panic in your eyes when you couldn’t rein it back in. Instead of scolding, I cradled you up and told you it was going to be okay, that everyone had Very Big Feelings sometimes. Once it was over, I asked if you felt better. “Uh huh!” you gulped. The twinkle–the gleam that lights your perfect, sparkling, cheeky eyes–was back.

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November spells sweet memory / the season blue remains 

And you are so cheeky. You’re sassy. And you’re usually quite remorseless. Just a few weeks ago you were my buddy at a charity event, and you snuck one of the lollipops meant for donors despite being told no, not for you. “Moira Autumn,” I said, in my best warning voice. “No lollipops.” In a flash you ripped off the wrapper and licked the pop, and fixed me with an enormous “Yeah? Tainted now! Whatcha gonna do?” grin that went ear-to-ear. You remind me of the last line of Good Omens, the line about Adam and how the apple was always worth the trouble you got into for eating it.

But despite the cheery defiance and the utterly irreverent grin you paste on your face when you’re busted in the act, you’re a born caretaker. No one is as tender to her baby dolls as you; nor as kind to the sad and sick as you are. You stop and consider people and you reach out to them. You try to make them feel better. You see what they need–a blankie, a hug, a fallen leaf, a few Cheerios–and you give.

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Your yellow hair is like the sunlight, however sweet it shines 

What an incredible combination, Moira. The potential and power of you, which is equal parts sass, sensitivity, defiance, and consideration wrapped up in a fiercely independent (“No, Mama! I DO!”) package, is breathtaking. You’re the power of a mid-November day: changeable, flashing, full of possibility and warmth and an errant chill. You and I share a birth month, and I never really thought highly of November before now. November isn’t an attractive month in a lot of places–bare trees and raw, cold rain. Maybe November just needed a Moira, because now all I see is warmth and color–I see the leaves in your red-gold hair and the power of an autumn sky in your brilliant dark-blue eyes. My not-so-babyish baby’s eyes, now two–my November blue.

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Bit by the cold of December, I’m warm beside your smile  

Thank you for being our little girl, Moira. Your radiance warms our lives. Life would be so unbearably dull without you. We adore and love you so.

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Happy birthday,

Mama

(This structure again. I know. Sorry. I like it–helps me organize my thoughts. Italicized lines are from The Avett Brothers’ “November Blue.”)

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Fear, Loathing, and Autism Speaks

Trigger warning: fear-mongering, ableism, othering of autistic people.

*****

A little more than two years ago, I began to wonder.

A little more than a year ago, we pushed beyond our initial pediatrician response and reached out to specialists.

On Valentine’s Day, 2013, Margaret received an official diagnosis of classic autism.

*****

Ten days prior to Margaret’s diagnosis I watched a military doctor at RAF Lakenheath administer the ADOS test, the final component of the diagnostic process. I had, I thought, made peace with the idea–we had been told months earlier by a developmental pediatrician that we should “begin to prepare” ourselves for a diagnosis. The occupational therapist we saw prior to that was relieved we had said the word “autism” because that meant “I can say it too. We can’t mention it unless the parents do if there’s no official diagnosis. Parental reactions are too incendiary.”

Too incendiary. Remember that.

Because Lakenheath is hours away from our home and we had an early appointment, no babysitter was possible. It was agreed that I would be in the room while Tom wrangled Moira elsewhere. The doctor looked at me with very kind eyes as I asked “You’re SURE? You’re SURE this isn’t just a speech delay? This is the diagnosis you’re recommending? YOU’RE SURE?!” She was sure. She was right to be.

The world went white. It buzzed. I couldn’t make out anything else she said through the giant, booming voice in my own head, drilling through the buzz and taking me by the shoulders and getting into my space and shouting, BELLOWING, in my brain:

“Do. Not. Screw this. Up.”

The next forty-five minutes are a blur. We were handed the American Pediatric Association’s book about autism and sent on our way. We went to the RAF commissary for snacks for the drive home. I staggered around the aisles, still buzzing (“DoNotScrewThisUpDoNotScrewThisUp”) paying for the food, somehow. Going back to the car and lasting maybe 15 minutes, maybe 15 seconds, maybe an eternity–maybe, in a way, I’m still there–until I broke into great whooping sobs.

“It’s so big, Tom.” I wailed. “This is so big.”

It is a small comfort to me that I didn’t, even in the white-noise depth of the moment, say that it was too hard, or too sad, or too bad. It is a small comfort to know that even then, way down deep, I knew the truth of the matter was not that this–not that autism–was tragic, but that the enormity of what I really needed to understand meant that the ice-cold, brutally reptilian voice of my maternity had to leap over the doctors and the rhetoric and the fear to speak the loudest:

You have been given a beautiful, rare, intense, precious responsibility. Do not screw this up.

*****

But why the wait? If the diagnosis was so certain, and we knew and had educated ourselves and surrounded ourselves with a community of autistic adults and teens, people who filled us with hope and pride and joy, why did we wait? Nearly 13 months lagged between our first questioning and our first serious action.

We were afraid. I was afraid. The conflated rhetoric surrounding diagnosis, decrying doomed marriages and bankrupted futures and finances, was as immense as the confusion we felt. The biggest organization of them all was the first we turned to: Autism Speaks. Some of what they wrote was useful, but some of it was clouded in language that unsettled me deeply (discussed here in this fabulous, must-read post by Jess of A Diary of a Mom). I wanted to give them the benefit of the doubt for so long. They are the largest. They have the biggest reach. Awareness surely counts, yes? Surely with enough work they’ll grow to include autistic people more and more in their upper echelons, yes?

Last night I read Autism Speaks co-founder Suzanne Wright’s Call to Action DC. My blood boiled and my head buzzed as it has not done since that cold, cold February day when we became sure that this thing–this condition that people spoke of in the hushed tones saved for the sick and the dying–was going to touch our lives. An excerpt from the introduction, the tone of which does not improve over the length of the piece and which, if you read the post from A Diary of a Mom, is sadly indicative of an alarming linguistic trend:

This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.

We’ve let families split up, go broke and struggle through their days and years.

Now that, my dear friends and family, is what should call for an incendiary response.

Margaret is not missing; she was never lost. She is not ill. My family is not broken, we are not a tragedy, and the enormity of my rage requires that I have to, HAVE TO, resort to incendiary language here to decry this steaming pile of utter horseshit in the strongest terms I can muster:

Autism Speaks: my child, our children, our friends, our family, is not a crisis.

HOW FUCKING DARE YOU declare that we are?

Autism Speaks, you may not speak for us. You may not speak for me. You may not speak for my child. Your blue lights and puzzle pieces may not cast shadows on my home. Autism does not destroy families. They are destroyed by fear. This is why children suffer: because their families become convinced that their children are inevitable ticking time bombs of incomprehensible burden. Futures are bankrupted because nobody believes in presuming competence and investing in real, genuine, dignified accommodation; we are too busy being told to be afraid to see what is possible.

I hope like hell that Margaret never reads anything like what Suzanne Wright has written. I know that this is an impossibility. The actual words change, the people change, but the attitudes don’t change as quickly. Much as it sickens me, she will lose her innocence. What terrifies me–what shakes me to my very core–is the utter loathing in Suzanne Wright’s words. Oh, how I dread the possibility that Margaret may internalize that loathing; how I dread that her joy may crumple and her hope may shrivel from the core out. We must, MUST not support these attitudes. We must turn away from fear-mongering, othering, and martyrdom.

We are turning away from Autism Speaks.

Our family gets one chance. One chance to raise our daughter to adulthood. One chance to make a difference. One chance to turn to joy.

And we cannot–we dare not–screw this up.