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Archive for the ‘sensory stuff’ Category

“Up & down, up & down,
I will lead them up & down…”

~ Puck
Shakespeare’s Midsummer Night’s Dream

Would that it were a midsummer’s night!  Oh, how we upstate New Yorkers suffer when Spring officially arrives, because in reality She is always late here, and it all feels like some cruel joke.

Late March teases us with a day or two at 48 or 55 degrees; once in a while we’ll even get a 70 degree day (though not so this year).   Winter always manages to beat Spring back, dragging the season’s whole inevitable death scene out in a maudlin, uncouth fashion of day after day in the windy teens, the grey-skied twenties, the only-tolerable thirties.  I remember three damn different April Fool’s Day snowstorms in the last decade or so.

Enough is enough.  I want to go outside and feel warmth, see some green pushing its way up through sun-softened soil.

Jonah doesn’t care much.  He’s uncomplaining about cold or hot, except when it comes to his bath; like his mama, he wants the water at a temperature most people would consider near-scalding.  Mom and I visited Sunday this week, and Jonah was cute and good and funny.  We’re trying to teach him that he’s a different age now.

“How old are you, Jonah?” one of us will ask.

Using the language only people used to him can understand, he answers:  Um-twelll-yee-ol.

He never just says the number.  Always he adds “years old” to the end.

“No, silly,” I say.  “You had a birthday!  How old are you now?”

Evidently 13 is much easier for him to say because plain as day he answers, “thirteen.”  And without adding the “years old” part.

So much for always and never.

Jonah is Puck, leading us up and down through his challenging, “changeling” behaviours.  He has been attacking at school.  He has been fine at school.  He has been aggressing at his residence.  He has been good at the residence.   Tick, tock.  Yin, yang.  Up & down.

Is it puberty?

Regular teenager outbursts, “on steroids” because of his autism?

Questions.

How many angels can dance on the head of a pin?

Why does no one realize that the Alphabet Song, Baa Baa Black Sheep, and Twinkle, Twinkle Little Star have the same tune?

Can you be a closet claustrophobic?

How many licks does it take to get to the middle of a Tootsie Pop?
(The world may never know.)

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Digging his car ride.  I watched with pride as he dressed himself after bath time and deftly pulled on his coat, put on his hood, and zipped up.  Then I thought about how very strange it is to be so happy my 13-year-old boy can do something most 5-year-olds can do.  This strangeness will always be inside me, watching Jonah’s progress at its terrapin pace.

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He asks for “train on computer” and needs help getting the computer on and surfing over to You Tube, but once he’s there he’s getting better at selecting different videos on his own.  And when he can’t figure something out he’s super-excellent at asking for help:  I want help please? in his cute little voice.

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My handsome, capricious teenager.

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I felt anger yesterday.  And resentment.  Envy.  Ugly thoughts.  I don’t belong on facebook because of my hyper-sensitivity, but I’m on it to be the Scare-Me-Not mommy.  Facebook, childishly, really hurts.  I look around the site and see things that make me jealous, or left out, or angry.

Sisters on a beach vacation – beautiful, strong sisters I wish with all my heart were my own.  Family at Yankee Stadium – something I’d love to be invited to (and have vocalized this wish to my mother many times when she was one of the crew) but have been left out of over and over again until I gave up.  Young couples with their arms around each other, grinning ear to ear.  Friends who get 3 vacations in one summer.  The beach, the beach, the beach.  Their children playing together, jumping in the waves.  More sisters, four or five, all grinning, all looking like one another, all there for one another, no matter what.

(Oh, to bring Jonah back to the beach.  To hear him gleefully cry “the ocean!” again.  Now, it’s impossible.  Next year I will plan ahead and see if I can hire someone like Joe to go with me to help me with him – and we’ll take him to Cape Cod. )

The young family living in Hawaii.  The really nice rich cousin whose family goes to Rome, or Milan, or wherever else the 1% go for vacation.  The family who has little material possessions yet is drowning in love.

Then, the people fighting diseases, fighting for causes, fighting for their children…trapped in the midst of horrible things – all of them rooted deep in faith, all of them brave and uncomplaining.

And then there is me.

I don’t have the diplomacy to keep my mouth shut and I don’t have the grace to be uncomplaining and I don’t have the faith to hold me up.

For all those who so kindly commented on my last post, you see I am mostly just a little girl, emotionally – frightened and bratty as hell.  The spoiled only child who grew into the downwardly mobile idealistic hippie chick college student, who grew into a married woman who had a baby largely because she knew the child would have an amazing father (never even considering what kind of a mother I would make) who grew yet again into a numbed, dumbed-down version of herself – a broken, tired, jealous, Peri-menopausal mess.

There is no heroism in me and very little strength.

The acts of kindness I like to commit are only a conscious effort to combat what I know about myself…to have something, anything, to put some weight on the other side of the scale.  I like to believe myself a Buddhist, a least a little, and a Christian, a little more, and yet I fall so short of the ideals, the teachings.  I can’t stop these tight, tears-behind-my-eyes, ugly feelings that come roaring up inside me like a sickness.

So yesterday, when all was said and done, I eventually reaped what I had sown – ripe seeds of nasty, intrusive, pissy, uncalled-for emotions.

But I’ll get back to that later.

My mom and I drove down for our Saturday Jonah visit, and, as Andy said later, “he was on his A game.”  He was so amazingly good.  Almost too good.  What do I mean by that?  I guess mostly that it’s easier to leave him behind when he is aggressive and scream-y and difficult.  When he’s so good, I want to hold him close to me and never let go.

I taped a small “conversation” I had with Jonah but I’m not sure how easy it is to hear.  If you listen closely, at the very end, Andy asks, “Jonah, what’s a fart say?” and Jonah blows a raspberry.

And not only did he go swimming at the river,

He dropped his purple “octopus” in the river and then just pointed to it. “Go get it!” I told him…

…so he did.

Jonah and his dad, running back to the car at Jonah’s request to go to “grocery store?”

Andy, strapping Jonah into his car harness as Jonah laughs hysterically and clutches “purple octopus.”

…as visions of grocery stores dance in his head…

…but we also drove to “grocery store” at Jonah’s request to buy waffles and syrup and orange soda.  I watched as my boy got his own cart, spun it around and into the store, expertly steered it past both produce and people, and acted like a good little kid, only occasionally asking for something we weren’t going to buy (and taking it very well when we said “not now” or “tomorrow” or any of the other distraction words — anything but “no.”)    Jonah acted better, even, than some of the other kids there.  Of course we did have to go to the self-check out to avoid any waiting, but still it was so incredibly cool to watch him growing and learning and doing so well.

When my mom and I left, it was with the hope we always have when Boo is good – that he will continue in this direction, steadily learning patience and life skills as well as academics, gradually improving, progressively making his way out of aggression and into verbalization.  Socialization.  Happiness.  It never happens, of course – there is always the backslide, but every time, we hope – we have learned its necessity.

When I returned home from our visit, I drove up to the Rensselaerville Falls and made a large nature art creation.  Nobody was around.  Nobody almost ever is…even when the parking lot is full, most people are on the ridiculously steep trails.  I hefted rocks that I looked at after I was done, wondering how I’d lifted some of them at all — then, with my rock-circle-wall sufficiently constructed, I began decorating it, first with two branches to make a cross, then with fallen leaves I could find on the ground or trapped swirling around a stick in the water.

I sat on a rock shelf nearby and listened to the waterfall, always rushing, never-ending, as calming and reassuring a sound I’d ever heard.  I first searched for patterns in the sound, and for a while I opened myself further and let them enter me.  When I arose from my reverie, I realized I had made this creation for Liam the Brave –  The sweet, suffering toddler for whom I made the box.

And I walked fully clothed into the area of water surrounding me, into the middle toward the next waterfall level, feet groping as the water rose higher and higher on me.  To my calves.  My mid-thighs.  My waist.  Close enough to the drop of the falls for the sound to swallow my screams, loud and long and enraged.  I screamed and thrashed around in the water as if dousing Wicked Witches into melting pools.  I cried and I sobbed.  I yelled primal, awful AAAAAHHHHHs, and, finally, raised my body tall and straight.

I walked purposefully up and out of the pool of water, back over to my rock creation, and felt the rage rise again.  I barely stopped myself from deconstructing the creation, rock by rock, and shot-putting the smaller ones into the water, smashing them against rocks, pitching them at the falls.

But I didn’t.  It isn’t mine anymore, I thought.  It’s Liam’s now.

I picked up my things – my bug repellent, my camera, my sandals – and carried them up the hill, along the trail, and back to the car.

It was not until the moment I reached for the driver’s door handle that I realized I’d locked the doors (something I almost never, ever do).

With a sinking heart, I realized I’d left my purse (with my cell phone and my keys) in the trunk.

And what did I do?  I smiled.  The karmic slap.  You reap what you sow, you jealous, angry bitch.

Instead of finding someone in the Huyck Preserve office (I was sure it was closed anyway) or knocking on a neighbor’s door to ask if I could use their phone to call AAA, I just smiled again.

I know what I’ll do.

I searched around the parking lot for a little while until I found what I thought was a hefty, perfect, pointed rock.  Then I walked over to the driver’s side way-back triangle-window, and brought down the rock as hard as I could, right in the middle of the glass.  Instead of hearing a satisfying shatter, I watched a white scratch appear as the rock bounced off.  It was loud as hell, though, echoing throughout the park.  Again and again I brought the rock down on the glass.  More and more and more white scratches appeared.  Some small nicks.  Nothing much else.  By now the glass would need replacing anyway, I realized, whether I broke it or not.

So I reached down, grabbed up the uncomplaining rock, and walked maybe two feet away from the car.  I aimed as best I could and threw the rock at the window with all the strength I had.  Rock bounced off window.  I picked it up and threw it again, where it bashed in the silver trim halfway between the way-back-triangle window and the back window.  Still I threw it again, this time making the familiar white-mark-scratch, only this time even further off mark, on the back window.

At this point I was half in tears at my stupidity and half-laughing at the strange fun of trying to bash a window in with a heavy, sharp rock.

Finally, I walked to the office, which was actually open, and found a young man inside.  “Did you just hear all that noise?”  I asked him.  “Yeah,”  he answered.  “I was about to come out and see what’s going on.”

“What’s going on,” I said, “is  I’m trying to bash out my back window because I locked my keys in the car.  Do you happen to have a hammer?”

He did.  Both a sledgehammer and a pick-axe.  He chose the sledgehammer and held it out to me.  “Do you want to do it or do you want me to do it?” he asked.  “You do it, please,” I answered, not wanting to make a wild swing and cave in the roof or something.

“Well I’ve never done this before,” he said before giving the window just a wee more than a tap with his giant sledgehammer.  The result was my anticipated, satisfying SMASH, glass all over the inside of my car.

If you look closely you can see where I white-scratched the back window and dented the trim.

I thanked the dude, stuck my lanky arm through the hole, unlocked the back door, opened it, stuck my body in the car, used my lanky arm to reach the front door lock and unlock it, popped the trunk, grabbed my purse, slammed the trunk shut and the back door closed, and drove the hell home.

Another view of my happy little car

And so, in one of the longest posts I’ve written in quite some time, there lies the moral of the karmic smash:

Don’t waste time being angry, or jealous, or resentful.  You’ll end up falling under the illusion of surface-sight and misunderstanding.  You’ll end up making assumptions that may not be true.  You’ll end up a grasping fool, unhappy and repellent.  There is no good in any of it.  Let it all go. 

Learn it, Amy.  And right quick.

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I used my lunch hour early today and met my mom and aunt T at Wildwood for Jonah’s “moving up” ceremony, which in his case takes on another meaning, as he is also “moving out.”   We sat there amid the mild noise and semi-chaos of a room full of kids with autism, me wondering if they’d get Jonah up on the stage at all.  He wasn’t in the room – they had him out in the hallway and were pulling him around on the scooter.  Three classes “moved up,” his being the last.

The first class was seated on the stage, each child waiting for his or her turn – a miracle, in my estimation.  The teacher handed each child a certificate honoring some particular accomplishment or progress achieved over the course of the year, and announced the gains each child had made.

The next two classes needed aides to guide the kids onto the stage, the crowd chuckling as some kids hurdled the stage instead of walking up the steps.  One cute boy I know bowed deep and got some laughs.  Jonah was the second in his class to be announced.  At first it was like that scene in “The Sound of Music” where they announce the Von Trapp family and everyone applauds, but the Von Trapp family has fled and never appears.  Then they evidently halted his scooter just outside the door and he was escorted in by two or three assistant teachers, who ushered him up the stairs and then snuck him off backstage.

I don’t even recall what they recognized him for.  Best biter?  Champion shit-smearer?

At least he was wearing the Guster shirt I bought him.

Later, back at work, I was melancholy and silent about the whole thing, but then my co-worker, K, came in to ask me how the graduation went.  “It’s more of a moving up ceremony,” I explained.  K’s in a band and I knew what would happen next:  we broke into a spontaneous rendition of the theme song to The Jeffersons:

Well we’re movin on up,
To the east side.
To a deeee-luxe apartment in the sky.
Movin on up,
To the east side.
We finally got a piece of the pie!

Fish don’t fry in the kitchen;
Beans don’t burn on the grill.
Took a whole lotta tryin’,
Just to get up that hill.

Now we’re up in the big leagues,
Gettin’ our turn at bat.
As long as we live, it’s you and me baby,
There ain’t nothin wrong with that…

No, there ain’t nothin’ wrong with that.

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One of Jonah’s all-time favorite things, as I’ve mentioned before, is swimming.  No, he’s not in the polar bear club or anything…but the Center for Disability Services has a great heated indoor pool and the other day Andy and I took him there to swim.  The kid takes to the water like a fish, and taught himself to swim.  He has no hesitation about putting his face in the water and can swim great lengths underwater, his lithe body undulating quite naturally.  I love watching him – he certainly didn’t get this ability from his mama; I have to plug my nose just to go underwater.

Here I should pause to give a major shout out to Andy, who is watching Jonah (with some help from my mom) almost exclusively by himself during school vacation as I go to work during the day.  I think Andy is taking Jonah sledding today, another of Jonah’s favorite things (Andy’s parents got Jonah new sleds for Christmas), probably down the hill behind the Barnwell Nursing Home in Valatie, a kick-ass sledding spot where lots of Columbia County kids gather to slide.  Jonah’s got endless energy for this and can slide down and run back up countless times while the rest of us pant and struggle.

So thank you, Andy.  You are a wonderful father and Jonah is so lucky to have you.  Dress warm and have fun…I appreciate everything you do.

 

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“Pinned down in this heaven
I’ll die a thousand times
Aware of the damage ahead
I’ll leave the pain behind

Another day, a perfect day
A twinge of pain, the sting of the needle
Staring at the walls provide
A brilliant sight through eyes of the needle

So warm at the bottom
Warm never felt so kind
And for a moment or two
I leave it all behind…”

Perfect by Guster

If I were a superstitious person I might refrain from the kind of optimism I’m embracing, but Jonah’s had two-going-on-three pretty damn good days and my relief is palpable.  The new dosage of Risperdal (along with weaning him off the Clonidine) seems to be both buoying his activity and decreasing his aggression.  He smiles and plays again, giggling at some silly musing.  He babbles to himself in the bath again, inventing songs, swishing the water around, singing snippets of Guster and the Beatles…

He’s the child I almost forgot was in there somewhere.

We went to my mom’s today, where he greeted her with a big smile and she damn near broke down crying with joy.  “Oh thank God,” she said.  “Thank you God.”  He played on her stairs and requested “outside,” where he sat on her brick steps, smiling at the sun.

I’m a little cautious to enjoy this too much for fear of it all crumbling, but I can’t help it.  I know it leaves me more vulnerable to an emotional crash if he builds up a tolerance to the new dosage and gets all aggressive again.

I know he still has two attacks a day or so at school, and I know he is still mostly riding around on the scooter there, wearing a weighted blanket.  I know the triumphs of participation and breakthroughs of smiles are still few, but they’re seeing them at school every day.

I allow hope to prevail, risk of disappointment be damned.

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“Knock knock knock”?  Jonah asks me.

This is not the beginning of a joke, but a request.  He is asking me to knock on his head.  I knock three or four times on spots all over his noggin; he giggles and says “fast!”  So I knock faster, using both hands to create light little rhythms.  Jonah loves to be knocked on the head – what can I say?  Knick knack paddywack.

He also loves other kinds of sensory pressure.   Some folk on the autism spectrum are really sensitive to touch and can’t tolerate certain textures or pressures, but Jonah craves them all.  He wants to cuddle so close that he melts into the shape of you.  He wants tight squeezes and massaging pressure on his shoulders, neck, and back.  He wants to reach out from the backseat of the car and gently place his fingertips on my shoulders, sometimes pulling as if to gather me closer.  Sometimes if he is freaking out in the car, I calm him by pressing my hand on his knee.  (This technique got us from Cape Cod all the way back to Albany when Jonah had such a hard time keeping it together after vacation).

“Huck?  Huck?” he asks every time he’s done something wrong and wants to get back in your good graces.  It’s his unspoken apology, overused and often insincere.  You’re not sorry, you little shit, I think sometimes. You just want  a hug.

Worse is “up up up?” –  meaning he wants me to pick him up and carry him, usually from the car (where he has just flipped out) to the house (which is where he’ll end up, specifically in his room).  But this is where I draw the line.  The kid is eight and a half, for the love of God, and though he’s thin and lanky like his mama, he’s still at least a good 50 pounds and liable to break my back.

So I walk heavily, practically limping, Jonah hanging and clutching onto me; I’ve grown a massive, screaming tumor from my midsection and my mission is to deliver it inside.  It’s like we’re playing that three legged race game at the elementary school Olympics.   So, mushed together in a human blob, we walk as one up the stairs and into the house.

Where he’ll likely ask for a hug – and later, once he’s calmed down, “knock knock knock?”

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