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“Faithfulness to the past can be a kind of death above ground.  Writing of the past is a resurrection; the past then lives in your words and you are free.”  ~ Jessamyn West 

I know exactly what Jessamyn means, though I’d never have been able to state it so succinctly.  And so resurrection occurs for me this Easter through writing.  When you write about something, your perspective gets to control it; when it has already happened you can shift it…place it under the microscope of your perception.  You can then craft it, shaping it, painting and whittling and building.  When something inside me has died, this is its resurrection.

Several things died inside me yesterday.  I am hoping the writing of them will resurrect.

My mother wanted to drive us down to see Boo for “our Easter” with him.  On the trip I would look over at her, worry over her; she drives the car a little jerkily these days, and she has lost so much weight.  She has not smoked in almost a month, and I told her I was proud of her.  I am.  But for her to quit smoking, she must have been very close to calling-911 sick, that unable to breathe.  She doesn’t let on to things and she does not go to the doctor.  Ever.

And so my mother and Andy and I repeat this process every Saturday, spinning the wheel of Jonah-Fortune, each time getting a different result.  This time my mother and I passed a truck on the way down; on its back was painted a Bible passage about hope and trust in the Lord.  This my mother took to be a good sign.  I took it too.  If  God wants to throw us a bone, I’m a grateful pup.

Anyway, Jonah’s school had an Easter Egg hunt that morning, and Jonah loved it, they told us.  I wish there were pictures, a video.  I wish I could be Big Brother watching.  No, not really.

I just want to watch my son smile and laugh.  He laughed on the way to the apartment.  We held hands and sang Guster songs and Zip-a-Dee-Doo-Dah.  We played Where is Thumbkin…

I took 3 pictures of us.   I’m a homely thing, but I’ll post one anyway.  Jonah must have gotten the cute from his dad’s side. 

When we first got to the apartment everything started as usual — Jonah almost immediately stripping down for a bath, my mother spreading out food on the table, Andy supervising the filling of the tub, me preparing to help where I’m needed.

Downhill it all went, quick as a bunny, you might say, and there isn’t going to be much of a blow-by-blow today because I don’t have it in me.  Jonah ramped up and ramped up, splashing water, then throwing his plate of food, then turning like lightning and going for my face.  I caught his wrists, he scratching the insides of my wrists.  On time-out in the bedroom Jonah decided to use poop as a weapon and started to push.

Andy quickly picked him up and put him on the toilet, where Jonah finished pooping – but not before he got some on the white knitted throw.  Andy did restrictive holds and scolded Jonah while my mom put the bedspread in the sink, scrubbing it, and I stood in silence.  There was fighting and yelling among us all.  It was chaotic and felt dangerous and wrong.  It made me want to scream that scream inside me, the scream that keeps getting bigger, tight and thick as a brick.    All this was supposed to be our little Easter celebration.  I didn’t eat more than a few bites.  I don’t know how long it will take for this to feel like another new normal.

I think it’s time we make an appointment with Jonah’s caseworker and we can all go and talk about Jonah, ask for guidance, find out what’s working for them and what isn’t, find out something.  Find out anything.

Eventually we did get a small amount of playground time with Jonah, and we walked over to the vending machines and bought him pink lemonade. “Pool? pool?” he even asked as we passed the gated, empty, cavernous rectangle .

Yes, bunny, pool is coming…just a few more months…

Then back to the playground, where he actually scampered up the slide and on other play equipment (as opposed to swinging to the exclusion of all else).  Abruptly he asked for “Birch House?” –which is where he lives, right next to the playground.  His bedroom window overlooks it, the play area…his favorite swing… the pool beyond it.  We followed him in to say goodbye.  I know now how to put my brain and heart on NEUTRAL or I couldn’t do this thing again and again and again.

A small scratch Jonah had made just under my right eye stung every time I cried yesterday.  My wrists look mysteriously pocked, almost pecked – The Birds style.

But mostly it’s exhausting emotionally for us all.  Sometimes I don’t think Andy is doing well, I know my mother isn’t doing well, and as for me, writing is my resurrection.    Still, there is doubt in everything I do — in every motive.  Am I too self-conscious or merely self-aware?  Am I hyper-sensitive or is everyone else desensitized?

And how the heck does the Easter Bunny get from house to house?  I do not believe this has ever been explained to me.

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“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”

~ The Wheel by the Grateful Dead

I’ve probably quoted that before in this blog.  A funny fact is that I’ve never read my blog straight through from beginning to end.  I could be repeating quotes, stories, ideas…hell, all kinds of shit.

Well it appears our 15 minutes of fame are over.  Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far.  Heh.  I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum.  We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.

The whole experience, though, was a jolt of affirmation I really needed.  (I thrive on affirmation; it’s damn near Pavlovian).

The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.

But the wheel turns, and comes a time for things I don’t want to think about.  Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there.  With them everything will be okay.  It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess.  They have compassion and knowledge and heart, these people.  They love.  Thank God, they love.

Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.

I remember holding him in my arms  for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect.  I kept it together long enough to look the surgeon in the eye and whisper “please help my son.”  She held my gaze and promised me, silently, nodding.

I remember closing the door and flattening myself out against the coolness of the wall on the other side.  Telling myself to breathe.  To trust.

Throughout these last ten years I have entrusted my child to so many people.  I am so lucky, so grateful.  I trust and I trust.  To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.

“You must trust and believe in people or life becomes impossible.” ~ Anton Chekhov

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“We read to know we are not alone.” ~ C.S. Lewis

Where do I begin?  I’ve been away and basically “unplugged” since Thursday morning; M & I went on a 2-day mini-trip to see Guster play with the Colorado Symphony Orchestra in Denver, which was amazing.

It was worth every penny I’d saved up to do it.  More about that later, maybe.  First, this very cool piece of news…

Two weeks ago, I got an e-mail from the executive director of Turner, asking me if I’d be interested in writing a piece about Jonah (and why I blog about him) for HLNtv.com and its sister site, CNN.com.  She had been tipped off about my blog by someone I went to high school with who works for CNN.  (Thanks, MM).  So I told her I’d think about it OF COURSE and then I started to panic.  500 words and a two-day deadline.  What to say?  How to encapsulate all we’ve experienced in 500 words?

Here is what I came up with, and I’m humbled and proud (are they mutually exclusive?) to say the story is the #2 top headline on HLNtv.com right now.  I can’t find it on CNN yet, so maybe it’s just going to be on the one site.  Either way

Yesterday at school, with no warning, my son Jonah overturned and threw his desk, attacked his teachers, and was ultimately so aggressive he required a two-person takedown (where his caregivers follow trained physical maneuvers to protect both him and them). My son’s a slender, slight boy, but also wiry and strong. He has autism with severe behavioral problems. He’s been potty trained for five months now, and will sometimes utter a sentence/request: “I want juice please?”

On March 7, Jonah turned ten years old. 

Jonah’s also a cutie, and a charmer. He loves trains, baths, and the beach, tight hugs and Grandma and chases. Though he can only speak in phrases, he can sing entire songs, in tune and with near-perfect rhythm. He taught himself to swim when he was five and dives deep underwater, surging to the surface over and over again, spitting water in a perfect stream. He even invented his own nomenclature (any kind of cola, for instance, is black soda, and whether it’s a dime, penny, or nickel, to Jonah it’s moneycoin). He dances and runs, shouting his jabberwocky to anyone within earshot.  He’s never embarrassed, never ashamed. 

And since August 16, 2011, he’s been living an hour and a half away from me at an educational residential facility for individuals with autism.

I used to judge people like me, people who sent their children away.

I don’t judge anyone anymore. 

Almost two years ago now, Jonah started to say “swat” and whack people on the arm. We and his school tried everything to mitigate this behavior. It grew worse, however, until he eventually became violent without reason – even during a preferred activity. He grabs and breaks eyeglasses. He hits hard and yanks hair. He scratches and bites. He fights dirty, no holds barred. Eventually Jonah calms down, but it is impossible to say for how long. There is no pattern, or if there is a pattern, none of us can see it. 

His father and I tried hard to see it, to find another way. He got the earliest intervention possible; our family doctor knew something was amiss when Jonah was just 8 weeks old. He wasn’t looking at the doctor; he was looking at the lights. “Infants look at faces,” doc told me, smiling, reassuring me we’d keep an eye on him.  So by the time he was 19 months old, Jonah received early intervention services. Diagnosed with autism at 22 months, before he turned three he was admitted to a fantastic full-time school for kids with neurological impairments, where he stayed until the residential placement.

I blog about my son because I have to write about him. Normal is a Dryer Setting is not a triumph-over-autism story, and it’s not a wise mother’s guide to life with autism. It’s just an honest account of our crazy, messy lives. And if it comforts one other family – if I can help just one person feel they are not alone – then Jonah’s journey will be worth the telling.

The most difficult thing about writing this article was to pinpoint exactly why I’m blogging about Jonah, and I think that’s the point she really wanted me to drive home.  I write about him because I’m a writer.  Because it’s therapeutic.  And, I realized, I wanted to uncover this “dark side” of autism nobody talks about.  Because I know I can’t be the only one.  And, maybe most of all,  because I don’t want the other ones to feel alone.

I will come back soon.  If you have commented or written to me, I promise to get back to you as soon as I can.  There are a lot of responses, and I am indeed humbled.  Honored.  And yes, also proud, because I consider myself a writer above almost all else, and this is so invigoratingly validating.

You must stay drunk on writing so reality cannot destroy you.  ~Ray Bradbury

My beautiful Boo:  How many lives you have touched?  How many people can we help? 

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