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Archive for March, 2012

front & center

There is a lot to say but this is our annual convention weekend at work and I’ve been too busy.  I’ll come back soon enough to blather on, not to worry.

…but I gotta tell you.  Last night?  Guster at the Egg.  Sold-out acoustic show with an amazing violinist, spectacular cellist — and my favorite band closer than I’ve ever seen them before. 

I overdressed.  I loved every moment. 

Front row center. 

Bliss.

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This past Saturday was okay for a while and then it really wasn’t okay at all.  Part of it was my mental state, which went all to hell on Friday.  But here are a bunch of cool pictures.

Knockout Ned came along.

Jonah put his harness on to get into the car…

Swinging at the park

Looking at “whiteduck.”

…but then in the car he pulled my hair hard, grabbed and bent my glasses, and kicked me in the head.  My mother kept saying “let me get in the back with him.”

I’m not sure if she thought (A) He wouldn’t attack her or (B) She wouldn’t mind it if he did and (C) She certainly wouldn’t be the melodramatic weakling her daughter turns into, crying and sad because she sees her son for 2 hours a week and wants it to be a good 2 hours, a happy 2 hours…

She actually was extremely angry at me for this and not a word was spoken between us on the ride back.

“All I can say,” she declared disgustedly, once we’d arrived home, “is God help Jonah.”

I was pissed at her implication, but I can get behind what she said.  I have never done right by her beloved grandson and I never will.  This I must accept as her perception, one she has a right to, one I mustn’t do much more with than acknowledge.  Thank God I am not so young anymore.  I am learning.  Slowly…but I am learning when silence, forgiveness, and self-examination are best.

Off to another doctor appointment tomorrow, to the rheumatologist again.  Andy’s bringing him up this time.

God help Jonah.

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afraid of the light

We can easily forgive a child who is afraid of the dark; the real tragedy of life is when men are afraid of the light.

Plato

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Monday morning, and it was so early.  6am, which meant E & J  & Jonah had been on the road since 4, up since, what, 2:30am?  3?  J stayed with Jonah, cat-napping in the van.  E & I signed paperwork and I gulped coffee.  When they brought Boo in we went over to the toys in the children’s area.

He played a little…

… but was mostly very tired.  Yawning...

I suited up and held his hand as they wheeled him into the operating room for his exploratory procedure.  His eyes grew big and frightened.  “Just like when you were born,” I whispered, looking around at all the metal instruments, tables, and lights everywhere.  “It’s okay angel.  Mommy’s here,” I said.  The part where they put the gas mask on your child is the hardest.  Jonah struggled, scared, then a little bit of spittle appeared at his lips and he went to sleep.  It’s hard not to panic.  A nurse kindly ushered me out and I joined E in the cafeteria while J napped in the surgical waiting room.

When Jonah was brought into post-op, they called me in first.  Jonah tossed back and forth and I kept repeating “mama’s here, angel.  mama’s here,”  until his eyes focused on me.    I gave him kisses, brushed his damp hair back.  Then I saw he was gonna puke so I got one of those puke dishes, guided him up, and held it under his mouth, not a moment too soon.  He puked and puked and puked again, before laying back, exhausted.  A kind nurse brought him a popsicle, which I assumed was really some flavored electrolyte-replacer, and Jonah ate a few nibbles.  I put balm on his chapped lips.  After a few minutes he asked for J, then repeatedly, so J and E both came in to see us.  J lay right down with Jonah, almost, cradling him.  This big, muscular, scarred, toothpick-chewing boxer turns softie with my little broken boy.

Then Jonah pukes all over himself.  We replace the robe.  I catch the puke in another basin.  The room is full of puke trays and washcloths and tissues.   Suddenly Jonah says “go baffroom?” and tries to get up, quickly.  “K, homie, let’s go,” J said, expertly guiding both Jonah and his IV pole into the  restroom.  Here I am, all proud that Jonah asked when he needed to go to the bathroom,  reveling in that pride, and as I stare at the restroom door I see a red light flash above it, accompanied by an alarm. “They need help,” I called out automatically.  Someone opened the bathroom door and went in, and I caught a quick glimpse of the chaos within.  Puke and pee and poop, all over the place.

When they finally came out and Jonah came back to the room, dressed in a hospital gown, J excused himself to go wash up.  He’d been, um, spray-splattered.  He was exhausted, nearly gagging, and went off to clean and go outside to get some air and Jonah’s change of clothes.

This man is probably paid twelve dollars an hour.   I might be shooting high on that guess.

When he came back in, he was himself again. “Me and homie on a whole new level now,” he joked, putting his arms around my boy as E figured out all the appointments, coordinating it all.

When we loaded Jonah back in the van, a comfy pillow and blanket set up for him, I watched my boy settle into the soft nest, put his thumb in his mouth, and sigh.

I started crying in gratitude and frustration.  It’s not fair that Jonah has to have autism and have operations and other things wrong with him he can’t even understand, and it’s not fair that people like J and E, and all the caregivers — these amazing, wonderful, patient people who literally care for and watch over our children — are paid so little.  Why? I am not pointing a finger at my son’s school.   It’s like this everywhere.  They don’t have the funding?  Who decides who makes what kind of money?

For that matter, why can’t they institute a sliding-scale tuition based on the parents’ income, and put that money toward salary hikes?  I’d gladly get on board and pay my share.  Not all disabled kids are from poor families.  So the rich disabled kid gets exactly the same free services as the poor one?  It doesn’t seem right.  When the kids become adults I can see the equality, but until then I say the parents who are able to should work together to raise the salaries of people we are counting on and grateful for.

Somehow I got on a rant.  I really didn’t mean to.   Basically his eyes looked good.  Jonah’s left eye had high pressure, but that could have been because he didn’t have his eye drops that morning… so they’ll take a measure in the regular office next week, then see what’s what.

They called me today to tell me Jonah had a one-person takedown (a wrap) to keep him under control.  I was at my doctor’s office when my cell-phone rang, which was weird.  And it’s always a strange conversation, because it’s almost always bad news and so I find myself hoping for news which isn’t that bad.  And there isn’t anything to say – they’re required to call a parent when there is a takedown. Okay then, thanks for calling.  I’m really sorry.  I hope nobody is hurt.  (I know someone is hurt, of course).  Sometimes I don’t even want to know these things.

Sometimes I want to know nothing at all.

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I’m tired, and a little sick to my stomach from thinking about the pain my boo will be in – again.  After the first eye surgery was the first time in his little life that he’d verbally expressed pain.  “Eye hurt!?” he cried, more beg than announcement.  Help me.  Do something.  Why do I feel this way?  And we, helpless, holding him, rocking him, offering him pain meds that obviously weren’t working well enough.

Yesterday my mom and I drove down to see Jonah.  We cycled through our routine – sandwich, bath, barbecue potato chips, black soda (or sometimes, now, cranberry juice), cookie.  Jump jump jump on the bed. Car ride.  “Daddy in backseat?” asked Jonah, but I can’t drive a stick and I wasn’t about to put my mom in arm’s reach of my volatile son, so Jonah had to settle for mama.  On the ride he sang with me and then stared out the window, sucking his thumb two different ways:

Then we drove to the park, and visited the ducks

and he got to swing on his favorite swing

then on we drove, down to the river, where the train tracks run

Jonah and his dad watching the waves from the wake of a ship

When we were done there Jonah wanted another bath and The Wiggles, so we drove back to the apartment…

And all the while he seemed fine –but then he puked.  My mom and I cleaned it up while Andy did the bath part.  I am going to talk to the nutritionist ab0ut the possibility of stomach troubles with Jonah.  He’s been throwing up kind of a lot.

He did very well for his rheumatologist appointment on Friday.  Thank God it was indeed E and J again who drove him up to Albany; I guess it will pretty much always be them.  You don’t know what it means to me to have them.  I will never forget their kindness, to me and to my boo.  Their ability to keep track of everything, keep Jonah busy, keep everything together –it’s all so awesome.  I know I say this over and over but I can’t say it enough.

Still,  I’m not at all looking forward to tomorrow.

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I have been writing back and forth with several mothers, some who found me through the CNN article, others I’ve known a while, through one path or another.

E has a child in a residential educational facility too — her child has been there 3 years now.  We write to one another of how it feels.   We hold one another up.   Recently, I wrote to her:

I am beginning to understand that there are a lot of us.   Who have done this thing.  Who feel this way.   Who struggle with mixed emotions – first one, then the other…feeling the guilt and the freedom together, a strange mix of relief and grief.  This is all just swept under the rug.  No one talks about it, acknowledges it, does anything about it.  I’ve had enough of that.  So many families struggle and are in pain.

I want to try to write a book.

Who wants to read a book when there’s no happy ending?  friend E  e-mailed me when I suggested this.

I thought about all the books I have loved that did not have what most would consider happy endings:  The Heart is a Lonely Hunter.  Of Mice and Men.  The Bridge to Terabithia.  The Awakening.  The Giver  (maybe; that one’s left open to interpretation).  Every Shakespeare tragedy.  Alas Babylon.  And on and on.

So I wrote back to her:  Yes. We can compel them to create one!  And she immediately offered me her support and help. Then I thought of the book, The Help – how Skeeter compiled all the stories of the women into a book.  Should I do it that way?

I think we need to have a voice.  There are a lot of people who need help.    Maybe the local autism society can help me figure out how to go about increasing awareness of the ‘behaviorally dangerous’ end of the spectrum.   The rest of us.

Maybe they could call us the prism of the spectrum of autism.  What should be a clear view through transparent glass,  fractured into bits and pieces of what is really there, all the while shooting beams of incredible color in every direction.  Thrown and shattered, though, the prism’s really fucking sharp.  Sharp like people don’t know.  Sharp that would shock them all.

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“Thanks to Shakespeare’s indelible dramatization, March 15—also called the Ides of March—is forever linked with the 44 B.C. assassination of Julius Caesar, and with prophecies of doom.” ~ Brian Handwerk

I have to admit I don’t particularly like Shakespeare, unless I get to see it as intended, as an audience member watching very good actors on a stage.  Reading Shakespeare for me is like trying to translate something you’ll never quite understand.  And we won’t even talk about Chaucer and his bullshit middle English.

But I love to hear my boo talk, no matter how hard to understand or decipher.  When he is happy he fairly chirps – sometimes screams and screeches – and laughs until his tummy hurts.  My God that child can laugh.

Sometimes he’s just giggling but other times he just cracks himself up, or something strikes him as hilarious, or he just is filled with joy.

Tomorrow please God let it be E and J who come to meet me at Jonah’s appointment with the rheumatologist.  I am excited to see Jonah.  I hope he wants hugs and kisses.  I’ll bring bubbles.  Everything will be fine.

There was a beautiful rainbow this morning, and I went in and dragged M outside to see it.  He came out and we stood at the end of the driveway at 7:20am and looked and looked.

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