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Archive for the ‘Anderson School’ Category

To the best of my knowledge Jonah has been a very good, happy boy for the past 5 days or so.  Why?  Nice spring days again.  Playing outside, swinging high in the sunshine.  The right dosage of meds finally.  Divine intervention.  Right now I don’t care.

Yesterday when we sent to see Jonah he was a very good, happy boy – and we did the usual things but he was having so much fun, laughing and singing, giggling and lovey.  I took a few great pictures that capture his joy, and the feel of the day…

My mom drops me off after the visit and we look at one another:  my long, bony hand holds her long, bony hand — and we say, sometimes in tandem, “Thank God.”  I remind myself not to hope.  Wait, that’s not quite right.  Always there is hope inside me.

It’s more like the expectation of permanence I need to dissolve.  I am so grateful.  Now.  Now.  I am grateful now.  Stay in this place, Amy.  It’s the only place to be, really.  Anything else is an illusion, the voice inside tells me.

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island opportunities and look toward another land. There is no other land, there is no other life but this.”

~ Henry David Thoreau

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When the principal himself at the residential school for autism
where you bathe live learn eat play please God are loved
calls my cell, I happen to be away from it. He speaks in an even tone.
I am upstairs pouring coffee comfort ritual routine into a blue mug.

A pretty co-worker comes into the kitchen, skirts me silently,
retrieves something from the fridge, and walks away. Invisibility.

My mother has just dropped me off in beginning-of-the-rain grey
after together we’d ushered my suffering sweet Sugar into Sleep.

I return to my cubicle, place the coffee down I am holding my breath
and on the cell phone a red light blinking blinking his area code

I dial into the voice mail it takes me two times, I hear Jonah is okay,
I hear significant incident hear how they tried to redirect him, keep him walking.
He was violently aggressive he needed a two-person takedown;
he likely hurt someone. More than one someone. Surfacing to bite.

Born of me who hated hitting, shrank from violence, submitted every time,
weak and yet I grew a wild white whale inside my womb, Ahab be warned.

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I’m at work and my cell phone rings.  (If it’s the area code where Jonah lives now, my heart goes into my throat, even though they’re usually “only” calling to notify me, as they must, that Jonah was involved in an incident.  That means he probably scratched, bit, kicked, and pulled God knows how many people’s hair.  It means they had to physically restrain him to prevent him from hurting himself or others).

It is the area code, and they are calling me to relate an incident.  When we hang up I call Andy and tell myself to just go back to work.  There isn’t anything I can do.

For years, behaviorists and teachers, psychiatrists, Andy, me – everyone – has been searching for a pattern to Jonah’s aggressions, a cause.  A reason for all this.  It isn’t who he is, the violent kid trying to scratch your eyes out.  It isn’t who he is.  It is as frustrating as anything I’ve ever known.  I don’t want to think about it today.  I want to know my son without having to fear him as well.  Thank God the world is catching on and more & more is being done for people with autism.

They say Jonah loves the new temporary house.  He can see the river and the railroad tracks, and right there you’ve got two of his favorite things:  water and train.

Jonah, at the glaucoma appointment, wearing J's sunglasses, playing it cool

I’m taking a couple days to go offline and see Guster (again) for my last concert this tour.  If I’m lucky, the dreaded area code will not appear on my cell phone until I return.  Be well, Boo.  Your mama loves you.

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Yesterday’s visit with Jonah was awesome!

We all expected him to be thrown off by his temporary move, just the night before, to a different house for 4 or 5 months while Birch House is renovated.  But the caregivers know how to prepare the kids.  Staff took the children to the new house lots and explained over and over again about the move.

But you never know what’ll set Jonah off, and this kind of change seemed likely to have made him angry.

To be honest I really didn’t want to drive down at all.  After losing Sugar and spending a couple days in an “off” place myself, I hesitated to risk another bad Saturday, another violent visit.   My mom would have gone anyway; nothing keeps her from seeing Jonah, but she’s more selfless than I.  In the end I went with her;  I missed Boo awful too.  Plus, it was such beautiful weather so I decided to spin the wheel and hope it landed on GOOD DAY.

It did.  Jonah was happy and excited.  He and I sat in the back of the car on the way to Andy’s apartment, and he sang with me, played with his hands, and looked up front at daddy and grandma.

But he didn’t ask for “daddy in backseat” like usual.  He was content with mama.

We played where is thumbkin and I taught him how to be The Fonz.

Aaaayyyy!

Jonah wanted to kiss me lots.

He’s got this little game he plays where he asks “kiss?  kiss?”  and we move our faces in slowly toward one another until, at the very last moment, he smiles and I end up kissing his teeth.

“Yuck!”  I say with an exaggerated icky-face, which sends Jonah into hysterical giggles.

“Kiss?  Kiss?”  he asks again.  “Oh—kay”, I say slowly, “but only if it’s a real kiss.”  So he arranges his face into mock-seriousness  as we prepare to move in for our kiss but he just can’t help it — the sides of his mouth twitch in suppressed laughter and he and I both start giggling.

Of course everybody gets his or her share of “huck?  huck?” and real kisses too.  Hugs and kisses, bath, park, turkey sandwiches, black soda, Hudson-River-by-the-train-station:

Then holding daddy’s hand and walking back down to see Grandma again…

In the car he wanted “more kisses?” and it made my heart fill up with something usually not present anymore.

“Kiss hand?” he asked, holding his arm out –so I took his little hand and kissed it.

“Kiss cheek?”  he wanted next, so I leaned over and soundly kissed his soft-child cheek.

“Kiss quiet?” he then said, holding out his pointer finger.  I took his finger to my lips and kissed it, tilting my head at him inquiringly. 

Kiss quiet?

He held the finger up to his lips:  “sshhhh.”

Oh!  “Yes, Boo,” I whispered, smiling, admiring the clever way his mind constructs language, the way he is a new kind of lexicographer.  “Kiss quiet.”

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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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“Well on the way, head in a cloud,
the (boy) of a thousand voices talking perfectly loud
But nobody ever hears him or the sound he appears to make,
and he never seems to notice…but the fool on the hill sees the sun going down,
and the eyes in his head see the world spinning ’round.”

~Fool on the Hill;  The Beatles.  (I changed man to boy, for Boo).

Fool on the Hill is Andy’s mother’s favorite Beatles song.   I remember little details and forget big ones.

It was not a good weekend for Boo, or so I hear.  I didn’t get to see him.  This weekend was our annual Spring Convention at NYPA, where we represent nearly 800 community newspapers and gather them all for a weekend full of training, fun, and elegance, this past Friday and Saturday at the Gideon Putnam in Saratoga.  As it involves months of preparation and hard work, it is particularly difficult on some people in my office, and they pull it off, year after year, with smiling, professional aplomb.  I don’t have that kind of whatever-it-takes to do it.  I tried, years ago, and couldn’t pull it off.   “The weak get crushed like insects,” young David’s father told him in the fabulous move Shine.

So mostly I attended a lot of classes, all taught by awesome speakers giving great advice.  Our keynote speaker at Friday’s lunch was Alex Jones, and I thought he was awesome.  I even bought one of his books when I got home:  “Losing the News: The Future of the News that Feeds Democracy (Institutions of American Democracy).”

Friday night there was a Gala, and I wore a slinky blue dress, flowing and sparkling.  I loved it when I saw it and bought it without concern for whether or not I could pull it off.  “Keep your shoulders back,” co-worker L kindly reminded me, for I tend to hunch in on myself, as if in an attempt to disappear completely.  If you’re going to sport a dress like the one I wore, you have to have something I just don’t have.  I felt shockingly thin and overly self-conscious.  When will I learn to find a fashionista friend to shop with me and be my Simon Cowell?  I don’t drink, so I didn’t gain “liquid courage.”  (In fact, one of the reasons I don’t drink is that at one gala I did get tipsy, and overbearingly begged for one publisher’s reminiscence of the Grateful Dead for way too long.  I’m still embarrassed every time I see him; I think he’s really cool.  When I am drunk I am a train wreck.  Best to avoid that.

Dr. Phil (who is not my personal guru or anything, believe me) says “You wouldn’t be so worried about what people thought of you if you knew how little they did.”  In this case I know he’s right. In spite of my stupid self-absorption I  had a great time and met lots of incredibly awesome people.  ‘Twas a success, methinks.  A big one.  The whole thing was made all the richer by the presence of a new bunch of people representing ethnic papers.  They were gracious and cool to meet and talk to, learn from.

At the end of the conference I gave one publisher’s daughter, little J, my ID card lanyard.  She wore it proudly.

But

I am sorry for my mom and for Andy most of all.  I guess on Saturday Andy drove Jonah up to visit my mom, and everything was okay for a while, until car ride.   They went to see train and caught a long one, but Jonah quickly became agitated afterward.  My mom said he took off his pants, grabbed handfuls of his poop and smeared it on the back window.

God knows what else he did that neither she nor Andy told me about.  The cleanup, the tantrums, the shit quite literally all over the place, the ride home.  Dropping Jonah off.   Thinking about it and trying not to try not to think about it.

I was spared from it by convention, thank God.  Were I there it would have almost certainly been worse for everyone and maybe me the most.  The weak get crushed like insects.  Thank you to my mother and to Andy.

Tomorrow Andy and I have to take Jonah to a semi-emergency appointment to see the pediatric rheumatologist.  (The earliest appointment she had was in June and she squeezed us in now because we have to be quick about all this).  So far we’ve gotten lucky with Jonah’s doctors but we’re due for a shitty one.  Either way, it looks like there is eye surgery of some kind in Jonah’s future.  His right eye, blessedly, is fine. The doc appointments just  kind of just go on and on, but I guess that’s just being a parent.  We will save the sight in his left eye; I’m going to do my damndest to see that we do.

Next Tuesday is another appointment with Dr. Simmonds again, the glaucoma doc, and E and J will be able to bring Jonah up to that one.  I love those guys.  I know I keep saying it, but I can’t help feeling so grateful for them.  By then the glaucoma doc and the juvenile arthritis doc will have conferred and will have a good recommendation for what we can do.

Your mama misses you, Boo, and loves you very, very much.  But I’m not going to lie to the people this weekend – I’m glad I wasn’t there when you flipped out this Saturday.  I’m glad – even if that exposes me as a selfish little girl.

I am so tired today, I don’t have it in me to do much of anything at all.

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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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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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Jonah and Fearless Fred.

This picture was taken a month or so ago, during the only snow we’ve really had.  A few inches, once or twice.  And remarkably warm.  Spring birds are singing.

I have not been here because I’ve been here, and here, and though I do love to write these things, sometimes I wish someone would pay me to write blog posts instead.  I have ideas for things I’d like to attempt.  A novel.  A memoir in blog format; basically, this blog (so as not to require any work on my part except to edit/proofread and ask an agent to read it).  But I’ll take what I can get.

Jonah was so good on Saturday.  Andy was kind enough to drive him up to grandma’s house, where I met them and we commenced to have circle pepperoni and bath and car ride (complete with perfectly-timed and very long train).  Jonah was hyper but happy.  I gave him a bath by myself (usually Andy does this), and we made a fine mess in the bathroom, splashing and laughing and getting bubbles everywhere.  He went to the bathroom like a big boy (it’s hard for me to believe I’m writing that about a boy who is going to be 10 on March 7th).  He ran, soapy and dripping, past my towel and into the front guest bedroom, where he jumped up and down on the bed and I jumped up and down on the floor, timing my jumps to his, and the both of us laughing and yelling Jump! Jump!  Errry-body jump!

I love Boo so much.

We have Fun Fridays once a month at work now, and they are fun.

I have joy in my life and I feel happiness again, though tomorrow would have been Sanx’s birthday (her 38th? I’m not positive).  And Gina’s been in the Times Union‘s big investigative report about NXIVM, and that’s all kind of crappy.

I also thought of the coolest band name ever:

His Boy Elroy

I shouldn’t have told you.  Now you can steal my coolest band name ever.
Take it!  Somebody steal it!  I should google it and see if it’s already been done.  Probably. Let’s see…

Yes!  Shit.

I think this picture was taken last weekend.  I’ll never tire of taking Jonah’s pictures and then looking at them later.  I’ve been sending more postcards and letters and little packages to him. 

I miss my boy and this is my way to be closer to him.

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