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Posts Tagged ‘autism’

So my new friend – we’ll call her Emily – is on the autism spectrum and, after knowing me for a month or so, thinks I am too.

Initially I dismissed her clinical, off-the-cuff diagnosis.  Dude, I am definitely not on the spectrum.  Andy, maybe.  Not me.  But then she stated her case, and I gotta admit it’s pretty good…the idea being that Asperger peeps tend to be hyper-interested in a chosen few topics, accumulating a great heapshit of knowledge and sharing said knowledge at every available opportunity.

Hmmmm let’s see.  Me and Laura Ingalls Wilder (on February 7, 2017 it will be her 150th birthday).  Me and Elfquest (Just today I tweeted my admiration for Wendy Pini’s artwork –and, um, yeah.  Their logo is my tattoo).  Me and Guster (I’ve seen them more times than the Grateful Dead.  Which is a lot).  On and on I can inform you about any of these.  In minute detail.  Joyfully!

And that sometimes people on the spectrum have difficulty applying appropriate filters to the world – both when taking in, and spitting out, information.

My recent freak out over that nasty comment.  The necessity of a code word inside my head to silence myself:  “SUA” (Shut Up, Amy).  All the endless ways I’ve made a verbal ass out of myself, geeked out, and otherwise toe-tasted open mouth, insert foot style.

Then, too, autistics typically love routine and order, lists, details, patterns…and can become micro-focused, lost in thoughts or music or art.   It seemed the more I researched manifestations of high-functioning autism, the more I saw myself..

…and the way I know everyone’s birthday and, for years, carefully noted them all on the calendar during late December for timely card-sending the following year.   Those pattern recognition questions on IQ tests, always way easy for me.  And how the Catholic Mass was a soothing ritual from which, as a child, I damn near astral projected. 

The way I love beaded jewelry, crafting the very beads themselves from paper, compartmentalized containers separating them by size and color.  And how I alphabetize my books by author, happy to simply regard them in rows upon neatly lined-up shelves.  Delighting in dates like pi day or May 6, 1978 at thirty-four minutes past noon:  12345678.  

The way music pulls from me emotion so strong I weep.  How, as a youngster in the 70s, my dad washed the car by hand while streams of water collected at the bottom of the driveway into a single little river – and how I followed that little river’s venture down the street to the fascinating storm drain. 

Hell, the way I’m constructed this very blog post with its carefully inserted links to songs, photography, artwork, and information you don’t care about.

Of course it really doesn’t matter at this point in my life whether I am on the autism spectrum or if I’m just assigning meaning to the random.  I guess I just find it interesting that, though I’m no spring chicken,  there are still these kinds of surprises about myself – and it was an eye-opening experience to hear how Emily came to her conclusions.

Either way, beneath all my rambling is the fifth anniversary of Boo’s life at Anderson.  Five years ago today we packed up Andy’s car and drove him away from the house where I sit and type this.  The house I’ve never, ever, not even once brought him back to see, though we’ve driven on the road two streets down in order to go see train.  I just can’t hear his little voice ask for “home?” again.  And anyway I don’t want him to remember, even though he probably does, clearly enough – hell, the kid remembers babysitters he hasn’t seen in half his life, randomly asking for them by name.   For whatever the reason, this 5-year anniversary bothered me more the other day than it does right now.

In so many ways he’s a wonder, my Jonah Russ.  I’m making him a music mix, in part based on reader recommendations, and will be taking bets when it’s done as to which tracks he settles on and subsequently asks for.

Feel free to continue with song recommendations; Jonah will listen to anything at all for at least a few seconds, anyway.  Based on this information, you’d think the song would need a really catchy intro to spark his interest, but his auditory preferences defy logic in this way as in many others.

I do think Andy’s mother is on to something with her suggestion of Mockingbird by Carly Simon and James Taylor.  And I’m definitely including George Thoroughgood’s I Drink Alone, if only for the ragin’ guitar intro.  I’ve also been introduced to new (to me) songs.  For instance, I’d never even once heard Brother Love’s Traveling Salvation Show.  And though my love of oldies + a penchant for Family Guy introduced me long ago to Surfin’ Bird, when performed by the Ramones it’s a messier, more Jonah-esque song.

This will entertain me for the next few days or weeks – however long it takes.

I’ve got time…

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I want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

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Jonah’s doing really well, aside from his word perseveration (cycling through nonsensical requests and phrases with conflicting messages).  Sometimes I think we should wean him off his meds and see what happens.  And that’s just what it feels like it would be – a roll of the dice, the spin of a roulette wheel.  Jonah’s not a chip in a poker game.  We’ve got to be as sure as possible that we’re doing the right things with his meds, and there’s no surety in it whatsoever.

It just seems to me that the meds might be causing the perseveration.  I keep thinking someone somewhere has got to be close to developing some kind of brain surgery to repair or regrow affected parts of the brain.   Like in Elizabeth Moon’s The Speed of Dark:  Lou, the high functioning protagonist, must decide whether or not to undergo a procedure to make him “normal.”  Lou’s decision surprised me, and the whole book opened my eyes to the struggles that people with high functioning autism face.

Autism can bite me.

Andy and I got Jonah’s 4th quarter report card today.  He’s working on things like taking an object and following directions to bring it to a named individual (maybe down the hall and around a corner), first stopping to knock and say “here,” probably — that’s likely the most they’re going to get out of Jonah — and then return to the classroom, having delivered the item.  I guess this kind of thing is where Jonah shines.

He remembers building layouts, street patterns, directions, etc. very quickly with a seemingly innate sense of where he is in the world.  And he also learns and recalls names, so he’ll get an A in Interoffice Communications 101.  (Actually, there are no letter grades.  Just 1-4, indicating how far along the student has come to reaching his/her goal in all kinds of specific things).  So this is Jonah’s forte.

I see mail delivery of some sort in his future.  Probably not the U.S. mail, but maybe he’ll be some interoffice Übermensch mail sorter at Microsoft.

Who knows what skills and talents will emerge from our amazing boy?

Who knows what skills & talents are inside Boo?

I forgot my camera last Saturday, so no new pics to share.  Last week the guy who seal-coated my driveway came back to clean out rubble, wood, & junk from when this other dude built my porch and left me with all the scrap.  I hired him because he gave me a great deal on the driveway, didn’t charge a lot, and was cool besides.  So the guy arrives and I give him leave to go through my garage.

He comes to the door a little bit later and he’s got this strange look on his face.  “All set?” I ask him. Uhmmm…Welllll….he mutters, obviously not wanting to say.

Then he’s out with it:  “Do you, um, collect squirrels?  Or bones?”

I look at him like he’s crazy.  “Wait.  What?”

“There’s a pile of squirrels in your garage,” he tells me.

“Auuggghhhhh!” I yell like a Peanuts character, my whole body shuddering.  And then:  “You jerk!  You thought I was a squirrel collector?”  I start laughing, and so does he, and I explain that it’s my damned serial-killer cat, Almanzo.  My garage door is manual-only and since Manzo’s a nocturnal critter, I let him out at night and keep about a foot of the garage door open so he can take refuge as needed.  He must have been ~gag~ stockpiling squirrels,  for the love of God.

“How come I didn’t smell them?” I ask.

“Oh, these are waaaaay past smelling,” he says with confidence.

Finally I request he show me, feeling like I was going in close to look at a car wreck or a deer shot dead.  So he pushes aside a few lawn & leaf bags and sure enough I notice two, uh, pelts right away.  That’s all I needed to see.  They’re gone now so good riddance to my pile ‘o’ squirrels.

I’ve had killer cats before but not serial killer cats.  I named the damn cat after an incredibly innocuous historical figure, for God’s sake; Laura Ingalls Wilder’s husband, Almanzo.

this innocent looking kitty

this innocent looking kitty

I’m missing Boo a lot but I get to see him tomorrow and I’ll be sure to bring the camera.  In my pictures folder I found all these videos of Jonah.  Here’s one I don’t think I’ve ever shared:

I should mention my new boyfriend, T, who lives in Bloomington, Indiana – a city so cool I never thought it could possibly exist in the Midwest.   We went to high school together, were in a few musicals and in chorus together (though he was also in the elite “select chorus” of the most stellar voices), and had been chatting on Facebook for some time.  I decided to drive out, kind of on impulse, to see if what we were feeling would translate to reality, though I really had no doubt.

The week was amazing.  The city felt like home.  We fell even more in love.  So now I live alone with my long-distance man.  He’s coming to visit me in three weeks, and then I’ll fly out to him in early December.  In the meantime I swell with pride, as if I manifested him – for he is, among other things, a night shift direct care giver to adults with autism, those just like my Boo but older.  On more than one occasion T has had to hold a resident in his arms all night during seizure after seizure, keeping his composure and offering compassionate care, no matter how tired he is — and he’s often very tired, as he puts everything he’s got into everything he does.

He’s also a geography professor, a bass in the men’s choir (though he’s got more than a 4-octave range) and the lead singer in a (mostly 80s) cover band, Don’t Call Me Betty.

I was trying to describe T to someone the other day, and I wrote:

I feel as though every tiny decision I have ever made in my life has led me to this sweet, loving, poetic, vulnerable, forgiving, brilliant, dedicated, sacrificing, fun, kind, honorable, humble, handsome, trusting, tactile, silly, singing, strong, self-aware, magical rock star king of a man. I’m grateful beyond words to have found him.

I kept going back and adding adjectives until it turned into the overly effusive paragraph you see above.  I am of the ridiculous and I am in love!

– – –

“All great deeds and all great thoughts have a ridiculous beginning. Great works are often born on a street corner or in a restaurant’s revolving door.
~ Albert Camus
Mama's Indiana Love

Mama’s Indiana Love

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Yesterday my mom came and picked me up to visit Jonah; we switch off every week, taking turns whose car we take and who drives.  I was exhausted from a long day of work in NYC on Friday, so it was nice to just zone out on the way down.

Once we got to Andy’s and piled in his car to collect Boo from his house on the Anderson campus, though, I was all excitement; I’d missed my boy something awful this week.  When we arrived, Jonah was outside on the playground with the residence manager, who told us he’d had a good morning.

Without waiting, off strides Jonah to the car, pausing only for hugs and kisses – then walking, all business, faster — ready for his Saturday visit with daddy and mama and grandma.

Fear of a Black Planet? he says by way of greeting and musical selection request.  My poor mom up front must endure Public Enemy, played very loud at Jonah’s insistence, while me & my boy groove in the back.

Once in Andy’s apartment, Jonah efficiently opens the bags and cooler grandma brought and puts everything away in its proper location – the cokes and 7ups lined up neatly in the fridge door, the sandwiches on a shelf, crackers and cookies and whatever else in the cabinet.  Usually he doesn’t put every item away, but even when he does, he takes it all right back out again to dig into lunch.

Boo sits nicely at the table 90% of the time now, legs like his mama with one wrapped around the other under the table.  He eats enough for 2 or 3 kids.  His tune-fish sandwich.  Half of mine.  Chips.  Cheese Puffs.  Donut.  Ham and mustard on a roll.  Spinach leaves with blue cheese dressing.

Finally he asks for peanut butter crackers, which we give him but he does not eat.

Here’s where he changes tactics; you can almost see the neurons and synapses at work in his little boy head.  Walking over to where Andy is standing in the kitchen, he says five cheese lasagna? — a frozen lasagna dish Andy often buys him at the grocery store.  Jonah repeats his request rapid-fire, three or four times.  Andy opens the freezer to show Jonah the three packages of five cheese lasagna already there, though he has no intention of heating one up.  I mean, Jonah’s just eaten all this food.  Too much already, really.

But he asks Jonah anyway.  Want some?

Jonah tries his request again – five cheese lasagna? —  ignoring the packages his daddy has just produced.  Then it hits me.  That little clever shit.  He doesn’t want five cheese lasagna at all.  What he wants is grocery store, and he knows it’s not grocery store day, so he’s going to work it however he can to get there. He’s playing his hand carefully and knows he ought to fold, but he can’t resist calling off the bet.

So he goes all in, asking straight out:  Grocery store?

Evidently Jonah thinks “grocery store” is nirvana; Andy takes him on Sundays with varying degrees of success, if you define success as selecting your items, putting them in the cart, maneuvering to the self-check-out lane, getting out of the store, and returning to the car.

Tomorrow, buddy.  We’ll go to the grocery store tomorrow, Andy says patiently.

Now Jonah’s mad and sad.

He starts to cry, fast and hard, no ramping up slow-like.  Sobbing, he throws himself on the floor, crying grocery store?  Grocery store!? over and over — a Shakespearean tragedy whose protagonist has just discovered his beloved is truly out of reach.

Then, just as suddenly, he flings himself across the room and lands on the couch.  Bam Bam Bam, he pounds his fists on the coffee table.  Bam Bam Bam.  We’re all just kind of letting him work it out.

Then into the bedroom, collapsing on the bed, hitting the pillows, crying out.  He even yells Amy! twice — I don’t think I’ve ever heard him say my first name.  Andy doesn’t want me to come in; he’s protecting me from an aggression.  But I gently push past him, risking it to try and calm Boo.  Jonah cocks his arm back at me but lowers it again quickly when I say no hit mama.  It takes him a while to get it together in there, but he does not hit mama.

He does not hit mama.

As much as I hate watching him go through his cycle of anger and despair over denial of grocery store, I am proud of Jonah just the same.  It all means he is expressing himself more appropriately, as tantrum-like as he looks in the process.

He’s mad, so he yells.

He’s sad, so he cries.

He’s frustrated, so he hits the table with his fists.

But he didn’t hit us.  Not this day, anyway, or any I’ve had with him in a while.  I consider it a big breakthrough.  I continue to hope beyond hope that his aggressions will mitigate into disappearance.

And I just know he had a kick-ass time at grocery store today.

Boo took this one of me.  I leaned down 'cause he wasn't using his aiming-the-camera skills very well.

Boo took this one of me. I leaned down ’cause he wasn’t using his aiming-the-camera skills very well.

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Sometimes Boo’s autism feels like a chess game.  Right now we keep putting that motherfucker in check.  We’ve learned, studied the books about moves and counter-moves, strategies and systems, and we are all becoming a better opponent.  Check.

The pendulum has slowed to teeny movements of to and fro –  a weakening player in the game.  Check.  I believe this because I need to believe this, no matter how many times the forward motion is halted, no matter how many times I lose a chess piece or a piece of my mind.  It’s as simple as it is difficult to learn and accept.

Do I sound “crazy”?  All these mixed metaphors.  I feel it these days, the crazy, all alien and weird inside my house where I work and am alone with a cat and a dog and no kids and no definition of myself to embrace.  It’s okay.  It’s okay, I tell myself.  Everything is okay.  Boo is doing so well, and you have escaped the rat race, and now there is peace in your home.

Still I am alien, a unicorn among moms who either have their children or they don’t.  And if one is gone there are others left behind.  The truth is I don’t want other children with me here to raise and figure out while Boo is away from me.  We only wanted one child, Andy and I.

But I am blessed and I am grateful and really all it takes to bring me back is to walk away from the chessboard, take a deep breath, and allow myself to be filled with those feelings of gratitude and grace.  There isn’t anything to fear, and worry is a waste of my time.  As I get older I realize more and more that everyone has their own shitpile, visible or no.

The pain we feel and the desire to feel happiness is what makes us most common as human beings, after all.  You are never alone, and neither am I.

I’m going into blah blah blah mode.  Red light!

Everything since last I wrote has been pretty much awesome with Boo.  Mother’s Day he was happy and sweet, and I’ve got lots of cute pics to share from our visits.  I am so lucky to have such a  precious son!

Jonah and me on Mother's Day 2014

Jonah and me on Mother’s Day 2014

The Mother's Day card Jonah made for my in school.  His teacher even mailed it to me!  This is side one...

The Mother’s Day card Jonah made for my in school. His teacher even mailed it to me! This is side one…

...and side two, which put a lump in this mama's throat...

…and side two, which put a lump in this mama’s throat…

Happy boo having quiet time on the big blue bed

Happy boo having quiet time on the big blue bed

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good!  Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good! Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

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OLYMPUS DIGITAL CAMERA

hanging out with grandma

hanging out with grandma

very silly boy. (no, i did not let him lick the $10 bill he's holding).  lol

very silly boy at another doc appointment. (no, i did not let him lick the $10 bill he’s holding). lol

I can't believe how big he is!

I can’t believe how big he is!

People say he looks like me.  Here's me at 10 years old.   What do you think?

People say he looks like me. Here’s me at 10 years old. What do you think?

Love to all…. & sending prayers and strength to my peeps in the autism groups I belong to on FB.

 

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After being separated for a little more than two years, I received final divorce papers in the mail on Saturday, complete with Judge McN’s signature dated Christmas Eve, 2013.   I have a thing with dates and would have preferred one less easy to remember… less, well, holy.  The joke’s on me, I suppose.  Oh well.  For the judge it’s just a piece of paper he has to sign.

I’m lucky that Andy and I get along and are friends, because it makes everything a whole lot easier.  As if underscoring the unimportance of our official split to him personally, Jonah ran around for a while yelling mamadaddy!  mamadaddy!  That’s right, Boo.  Mama and daddy love you so much, no matter what.

Andy called me earlier today;  school’s closed for MLK Jr. Day and so he’d picked Jonah up for a visit.   He told me Jonah wanted to talk to mama on the phone.  This is kind of a new thing because he was never much interested in the phone.  Even with his new willingness to hold the magic plastic piece while speaking and listening to invisible mama, I have to do most of the work.

Hi Boo!  (silence.)  Are you watching Oompa Oompa yes.  Can you say “I love you mama?” I love you mama.  I love you too Boo, mama loves you so much.  Be good for daddy, okay?  okay Bye bye sweetheart.  bye bye.

It’s the closest thing we get to conversation, but light-years beyond how it was years ago.  It’s part of why I keep this blog — so I can look back and measure progress, both his and my own.  Andy also said Jonah was being exceptionally good today, and I’ll talk to him later to see how long it lasted.

On Saturday I wanted to take a couple new pictures of Boo, but when I ask him to smile, he turns all silly and gives me a hammy, angelic grin:

I changed it a little in my photo editor to make it look even creepier.  :-)

I changed it a little in my photo editor to make it look creepy, for fun

I think it’s much cuter when he doesn’t know you’re taking the photo, like here at his improvised bathtub/swim-up bar:

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Most of what happens regularly every weekend happened again.  The endless requests for grandma’s house? and, of course & most especially, car ride?

It’s a 90 minute car ride each way to him, and then I take two car rides with him, Andy drives, my mom stays back at the apartment and either struggles with the Internet (I am trying to be more patient as I teach her the simplest moves of the mouse) or watches QVC or FOX until we return.  Always on our car ride, Jonah wants music and he wants it loud.

We know this not because he tells us turn it up, but because while the music is already playing he will say music on!?  over and over until it is at his desired level, which means that for Andy and I to have a conversation, we have to raise our voices.  We don’t want to hurt Jonah’s hearing of course,  so at about the halfway point we tell him “this is as loud as it goes” as if he understands what we are saying.  Maybe he does, but still he asks for “music on?”

This is what it is now, our strange little family, usually interrupted by Jonah’s dissolving into tears and sometimes an aggression or two.  Practice radical acceptance, they taught me in the hospitalDBT:  Dialectical Behavioral Therapy (DBT) combines cognitive and behavioral therapy, incorporating methodologies from various practices including Eastern mindfulness techniques.

It would serve me well to read through the notebook I kept there.  Eight days of wisdom-teaching does not a wise woman make.

But I’m facing forward, moving slow…forging ahead…

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So I allowed myself a break from telling the story of Jonah and our ups and downs…the roller coaster twisting racing in turns of joy and aggression, stopping at the station for deep breaths of still, of peace, but the safety bar won’t raise – it never lets us out – and then after a day a week a month the announcement to keep hands and feet inside the vehicle, and we’re off again and climbing that hill from which comes the fall the fright the feelings, stop the ride I want to get off please.

It’s the same shit I always spout and am tired of spouting.  How about this year I turn my metaphor around, into a river…not round and round but journeying somewhere, rocks and rapids notwithstanding?  Not so much dizziness but the radical acceptance of a fluid situation.  Change not as an event but as a constancy.  Journeying not with a destination but as the destination.

Yeah, like I’m gonna turn all Zen.  Well I can give it a shot, anyway.

First the third wake:  my friend K’s father passed away from the lung cancer that killed him on Friday the 13th of December.  Her bravery and strength, the way she carries this burden like a strong woman of faith with a will of iron and a heart of truth and beauty…she is the only child, like me.  Now she slams the door shut on 2013 and perhaps is still in shock that her father will not be there in this new year.  How strange is grief, and the different ways it works its necessary, surgical-like job inside each one of us when we mourn.  I have tried to be a good friend but still feel helpless.  Through it all she managed to make batches of Christmas cookies and gift them to me along with a Willie Wonka shirt for Jonah with Oompa Loompas on it.  I am proud to call her one of my closest friends.

My real-life-friends have whittled down to a few, but they are gems who have stuck with me no matter what – without judgement or competitive bullshit or cattiness.  That feels right.   In 2013 I have given and forgiven; I have risen to the occasion and I have fallen apart.  I’ve slipped and stayed lying on the ground for a while.  I’ve crawled and danced and risked everything and lost my shit it felt so good to smash that glass all for a better way to get through this life, for better things to do, for more important goals, more impactful work.   I’ve soared higher than ever on the warmest winds of change and beauty.  I’ve cried my eyes out both in sorrow and laughter.  I’ve lived. 

During the month of December I also allowed myself to feel the angry, awful pull in my heart every time I saw kids waiting for Santa, counting days, getting excited, dressed for photos, new babies joining bigger siblings by the fireside as mom bakes cookies, the whole Christmas scene and winter family fun I envy.

Then I take the time to realize half of what we see is illusion anyway, and the other half probably would envy my ability to give my boy bubbles, tangle toys, and a Willie Wonka & The Chocolate Factory DVD for Christmas while they are faced with kids who want iPads and gaming systems – the right sneakers and the cool outfits, hundreds and maybe thousands of dollars of presents.  Of course this is all conjecture and generalization, but you get the idea.

There are no right outfits for Jonah, unless you count the fact that comfort is king.  In fact, Andy drove Jonah up to my mother and me on Christmas in jammie bottoms and an unmatched shirt, because that’s what Boo wanted to wear.

Jonah Boo, playing on my mom's floor with a flashing turnabout radio-controlled car

Jonah Boo, playing for a few minutes on my mom’s floor with a flashing turnabout radio-controlled car

My mother had cooked a ham & pre-prepared it all into containers for us and, just like Thanksgiving, we spent Christmas on car ride seeking a train that once again refused to come because it was a holiday.

I caught the little bugger for a Christmas pic with mama

I caught the little bugger for a Christmas pic with his mama

My mama and me

And one of MY mama and me

When Jonah loves a particular scene in a movie or show, he'll run up to the TV with a happy screech

When Jonah loves a scene on TV or in a movie he will run to the screen with a happy screech.  Here’s another example, taken a few days later:

Still Willie Wonka on the screen

Still Willie Wonka on the screen

And the coolest pic of all, methinks, because Jonah is watching on one side and a kid IN the movie is watching on another:

I love this pic

Here comes the falling somersault

So I may not have a lot of details to share, some because I chose to forget and some because I am too lazy to type out a month’s worth of details….but there are many moments of Jonah being his repititious-yet-never-boring self.

I have to give a shout-out to Jonah’s dad, Andy, who as usual has come through in his amazing father way.  Since he lives so close to Jonah he sees him more than I do — but that doesn’t mean he has to pick him up for visits as much as he does, or withstand the aggressions, the emotional strain, and the exhaustion which nearly almost follows a visit — he has picked Jonah up for a visit whenever he can, whenever he is not working.  Always he is patient and takes Jonah on all the car rides our boy so loves, playing Prince CDs for Jonah (which is kind of like me playing Guster CDs for him, because Andy loves Prince like I love Guster).

Always he is a wonderful father.  The best parent with the strongest constitution and all the love in the world for his precious son, his only child.

Here is Jonah crying because we forgot to bring his favorite Prince CD on the car ride.  Luckily we were not far away and were able to return to the apartment to retrieve the longed-for CD.

"Diamonds and Pearls?!"

“Diamonds and Pearls?!”

This is not a boy with autism having an aggression.  This is a kid who wants his Prince and ain’t afraid to cry about it.

Oh the humanity

Oh the humanity

Poor Boo.  The aggressions I thought might be gone for good have returned.  I have no idea how many times the pendulum has to swing before I get it through my head:  pendulums swing – it’s what they do.  Perhaps I can incorporate this into my head as well this year. Or, better yet, find a way to blow up the pendulum.  Smash it all to hell.

I’m gonna learn play my new acoustic guitar (thank you Richie, who came to visit from Japan, for teaching me the 1-4-5 progression, which means I can play about 10,000 songs very poorly so far)…and maybe try a song or two for Jonah…

yes I asked for this specific one because I am a DUMMY with an acoustic guitar

Yes I asked for this specific one because I am a DUMMY with an acoustic guitar

So here is a 2013 pictorial to usher in what I pray will be a better year – for everyone!

The Year of The Eye: January 2013

The Year of The Eye:
January 2013

March:  more eye doctor

March: more eye doctor

April:  thumb-sucking contemplative Boo

April: thumb-sucking contemplative Boo

May:  waking up from the eye operation to try & save the sight in his left eye

May: waking up from the eye operation to try & save the sight in his left eye

June: The endless wearing of the eye shield

June: The endless wearing of the eye shield

July:  a smile through the eye shield

July: a smile through the eye shield

More daddy-love in August

More daddy-love in August

No more eye shield.  The operation didn't save his sight.  Thank God for Boo's healthy right eye!

September:  Happy Boo, rocking back and forth to a tune in the car. The operation didn’t save his left eye’s sight, though. Thank God for Boo’s healthy right eye!

October:  visit to the juvenile arthritis doc - everything looks great!

October: visit to the juvenile arthritis doc – everything looks great!

November:  Boo asks if the nonexistent "Thanksgiving train" is coming, and points to where he thinks it'll come from.

November: Boo asks if the nonexistent “Thanksgiving train” is coming & points to where he thinks it’ll come from.  He looks hopeful.  Sorry Boo!

Rockin' his Almanzo Wilder Homestead shirt & eating some chips and dip...

December: Rockin’ his Almanzo Wilder Homestead shirt & eating some chips and dip…

Boo’s ready for 2014.  We’re three days in already and “Snowstorm Hercules” (I guess they’re naming all the snowstorms now) has dropped maybe 7 or 8 inches here in Albany.  Hercules my ass.  They should have named it Deep Freeze — it’s about negative 4 outside and even opening a curtain feels like I’m subjecting myself to snow-blindness from all the white-bright.

P.S.  My biological family does not want anything to do with me.  Surprise surprise.  It was a bee sting, really – for a short while it hurt, burned, stank of rejection and things not right or fair.  I cried.  Then I got up off my ass and put some calamine lotion on the whole mess and flicked the bee off my arm.  That bee died stinging me, just as this biological-relative bullshit is dead to me now.  I am blood-related to Boo, and that’s all I need.  That, and the family I already have and love – including those outside my adoptive family whom I have chosen to adopt as sisters or brothers or cousins, DNA be damned.

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