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Back in the day, Jonah adored the movie Willie Wonka and the Chocolate Factory.  That’s not exactly accurate, either, because what he really loved was one scene. You know the one, near the end where Grandpa Joe and Mr. Wonka are screaming at one another…

Mr. Wonka: You STOLE fizzy lifting drinks!  You bumped into the ceiling, which now has to be washed, and sterilized, so you get NOTHING!  You lose! Good day, sir!

Grandpa Joe: You’re a crook!  You’re a cheat, and a swindler – that’s what you are!  How could you do a thing like this?  Build up a little boy’s hopes and then smash all his dreams to pieces?!!  YOU’RE AN INHUMAN MONSTER!

Mr. Wonka: I SAID GOOD DAY!!

For whatever the reason this absolutely smashed Boo’s funny bone.  He’d giggle and laugh and sometimes almost literally shriek with joy.

More this he would ask, and I’d have to rewind back to the beginning of that scene and play it again, usually 10 or 15 times in a row.  We watched it together so often that I began to dream of sterilized ceilings, inhuman monsters, and dreams smashed to pieces.

I’m not sure when it happened (because of this blog I could look back and pinpoint it), but for a long time now his little joys and interests, like the Willie Wonka scene, have waned and all but disappeared – replaced by a devotion to car ride alone:  mama in the front.

But two weeks ago when Andy and I drove to pick him up, he first (as always) greeted us with music on? and then, after just one car ride (an unvaried and specific loop), requested go back to ‘partment?

Surprised but happy, we drove him to Andy’s place, where grandma was waiting with Jonah’s favorite foods.  Once inside, he almost immediately attacked Andy, ripping yet another shirt and biting him on the wrist, drawing blood.  Andy got him down on the floor and tried to keep him still, while I held Boo’s legs so he couldn’t back-kick Andy in the kidneys.  We are strangely quiet during all of this, even Jonah. The only sounds are Jonah kicking and hitting us or the floor.  We’re grown used to it, and we’ve come to believe that if we can just get one attack out of the way, Boo will be okay.  Sometimes even really sweet and especially happy.

Sure enough, Jonah calmed down and after that he was fine.  Better than fine.

Train on computer? he said. I was floored.  He hasn’t asked to watch trains in what feels like years.  So, as small a thing as it sounds, I was thrilled to see a spark of interest in something besides car ride.  So I set him up on YouTube, typed in railfanner, and Presto Change-o, my train-loving Boo is back, staring with rapt interest at the coming and going of the endless speeding cars.

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And after a while, just as amazingly, he looked up at me and asked Oopma Oopma? – which is always how he requested the scene from Willie Wonka.  And so once again I happily obliged, the scene eliciting the same smiles and giggles in which we all once rejoiced.

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The next day at school, Jonah went after a staff member in the residence who did his best to restrain him safely, but Boo ended up hitting his face on his dresser and being brought to the hospital, coming back with a few stitches in his lip and a swollen black eye.  We are grateful to the caregivers who stayed with him, keeping him calm, safe, and occupied, until he could go back to his residence.

By our next visit the swelling had gone down and Jonah was his usual happy self.  He asked for train on computer again and even handed me his Jungle Book Disney movie to play.  So I set it up for him and watched him wait patiently on the floor, where he threw down a little yoga move (they teach the kids simple poses in school but I’d never seen him do one spontaneously)

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…and settled down to watch the movie – nearly 30 minutes of it! – before declaring all done Jungle Book.

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No aggressions that day.  None.  Not sure when the last time that’s happened, either.

I type ad nauseam of hope, and despair, and the tiring, endless cycle of the two, but a constant thread through both is change, always change – and growth, and learning, and steps forward.

There is.  Thank God there is.  Always there is something sweet to savor, and I am evergrateful.

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…

Yesterday Jonah played the blue shirt rag; that is to say he blubbered into two rags, one after another, both made from Andy’s blue t-shirts irreparably torn in an aggression.   There are plenty of t-shirt rags as Andy has sacrificed many, many shirts in Jonah’s attempt to turn them, one by one, into Incredible Hulk Halloween costumes.

And Jonah nearly often requests Andy change his shirt.  “Blue shirt?” he demand-requests, leading his father to the bedroom dresser t-shirt drawer and rummaging through to find something blue.  Always he wants daddy in a blue t-shirt, never any other color – though what passes for blue, some days, is more like grey or faded green.  Daddy only has so many shirts to destroy, and only so many of those are blue.

As a result, poor Andy gets a lot of t-shirts for his birthday (coming up soon!) and Christmas and Father’s Day, all destined to be worn and ripped in relatively short order.

So yesterday, yeah.  The blue shirt rag.   In what I considered a behavioral triumph, Jonah worked himself into a frenzy on his car ride, crying out “no school tomoww-ow!” over and over until he was a slobbery snotty mess.

Andy pulled over quietly and handed him blue rag one while I filmed a bit of the scene.  I call it a behavioral triumph because Boo only kicked twice, and half-heartedly at that, before indulging in a crying jag instead.  Poor kid.  But he worked it out, God bless him, despite a great mess of snot and tears.  Andy and I mostly sat quietly, waiting, until there were long enough pauses between the wails to insert a calming word or two.

After deeming blue rag one full to capacity, Andy whisked it away, handing Jonah blue rag two. 

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So emo.

“Here,” he says, making as if to hand me blue rag one.  I stare at the goobery glob of it and we laugh.  Jonah gets his shit together in the back seat with blue rag two and Andy tosses blue rag one to the floor. 

After this Jonah is fine, as if he needed to purge the sad, sad notion of school tomorrow before getting on with his day.  After all, who among us can truly say they have not ever dreaded school tomorrow?

Thank you, peeps, for the rallying cries that leave me strengthened and fortified.  Like Wheaties.  And O, Harlow, how you do go on.  I hear you.  Who’ll stop the rain indeed?

I appreciate it all.

five

In five days, on August 16, it will be the fifth anniversary of Jonah’s departure from home.

That’s more than a third of his innocent little life, and I sit here and type this through a stormy mess of emotions.

For some reason that one comment from the other day echoes in my head, over and over.   I can’t be bothered to parent.   I can’t be bothered to parent.   I can say “haters gonna hate” and try to brush it off, but the troll’s words have gotten inside me, wringing my heart, making it pound pound pound in my throat.  I kicked my son out.  I can’t be bothered to parent.  The words are not true and I want to stop hearing them but I don’t know how.  I heavily edited my “about” page to more clearly define why we had to send Jonah away, and even as I wrote the new copy I asked myself why I felt the need to justify our actions.

There are many answers to that but the most important answer, I suppose, is to educate.  The idea of residential care for individuals with autism is repellent, and I get that.  It’s important to know the why of it all, lest they judge not only me but all others in my situation, lest they misunderstand the reality of residential care in the 21st century.  Jonah’s school is not an “institution” – it’s a huge, gated, beautiful campus with individual houses and a school building.  The caregivers and teachers are phenomenal; they are Jonah’s best friends and companions, advocates and educators.  These aren’t justifications.  I do not need to justify what was not our choice.  We didn’t choose this.

Parents who place a child in residential care aren’t throwing their kid away, I assure you.  Because guess what?  Even if there were parents who wanted to “throw a child away,” the openings at these places are so valuable there wouldn’t be availability unless the child’s home school district deemed it absolutely necessary.  The school district pays for it (in New York State, anyway) and moneycoin is, of course, a huge determining factor.

I just wish I wasn’t so hypersensitive. Or maybe it’s not that.  Maybe I’ve slowly developed an invisible shield in order to move forward through life and when trolls knock, the shield is shaken, endangered, a hole poked through, the feelings rushing in, too many too much too painful too real.   All the feelings I usually suppress.  Ignore.  Internalize – until I am, as I’ve described before, bow-string tight with bones gone brittle, shoulders hitched up, breath after breath after breath held…suspended…each new breath a hesitant, unwilling step into more future.

For five years I have lived this bizarre life of mother-not-mothering.  For five years I’ve spent most of my energy running away from how it feels never to watch Jonah sleep…how it feels never to be there when he awakens….never to know what it is to raise him.  It’s the most helpless kind of helpless.  I suppose my mind has created its own protective pathway to enable me to live this way.  I imagine my heart’s new primary purpose is to forget all the days we spent together, and what it was to shape his Self, and how I fell in love with his role in my life as my Boo.

I don’t know anyone who is in my situation, with their only child living in a residential school for autism, except Andy.  But we don’t talk about it, and so that most helpless kind of helpless is a lonely kind as well.  From a singular perspective I attempt to tell our tale, and like as not I speak a language so foreign it’s lost, dismissed, or plain old misunderstood by some people.

And just like that I’m off to find the Animals song, link to it, and look up the lyrics.  Is it schizophrenic thinking to feel how those lyrics apply to me?  To type the words out in paragraph form because I identify?

I only know this diversion serves as vacation from all the other crap I’m always on about.

“Sometimes I feel a little mad.  But don’t you know that no one alive can always be an angel?  When things go wrong I seem to be bad, but I’m just a soul whose intentions are good.  Sometimes I’m so carefree, with a joy that’s hard to hide, and sometimes it seems that all I have to do is worry, then you’re bound to see my other side.  But I’m just a soul whose intentions are good; oh Lord, please don’t let me be misunderstood.”

Why care if I’m misunderstood?  Why react so viscerally to the critic or the cruel?

Either way, I’ve been hibernating and closed off.  My mental energy is always working to stave off thinking things I don’t want to think.  I sleep and I sleep.  One day this week I came home from work and took a nap, only waking to eat before going to bed for the night.  I’m making up for those sleepless nights with Boo, back when I was a mothering-mother.

Jonah’s school called me today to join a conference call and approve a proposed increase in his dosage of Clozaril, since the drug is helping lessen the frequency of his aggressions but it’s not taking them away.  We talked about how he’s refusing to go to school (though they always get him there by 10am or so) and then I asked if anyone there had seen Jonah today.  One person had, in the classroom, and she described how he was making a great racket of noise.  He also had a behavior management at his residence this morning.  They didn’t disclose the severity of the behavior and I didn’t ask.

It’s difficult to remember a time when I did not embrace ignorance.

I guess maybe, well, five years ago.

This is another one of those blog entries I nearly almost always type with fingers slamming-hammer-quick on the keys, stream of conscious unthinking – and then delete.  But I think I’ll publish this one.

If I go away for another while, however long, I wanted to tell why.

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Got a nasty comment on my last post – the self-righteous Kate.  As much as I would like to defend myself against her, and those who imply (or directly state) that I am a bad and unloving mother, a bigger part of me shrugs – albeit sadly.  Why defend myself against someone who has obviously already made up her mind about me?   When willful ignorance meets judgemental cruelty, the result is almost comical.  If this person had read the entries leading up to our placing Jonah at Anderson, she would hear how it very damn near killed us to do it.  And yeah, I suppose I could just delete those kind of comments before anyone sees them, but that would sugarcoat a blog that’s intended to be “sans sugar. ”

I really appreciate those of you who bristle on my behalf (and on behalf of everyone like me whose life is all too easy to judge).  Your advice is gentle, your kindness is a cushion, and your support means more than you know.   Words can and do wound, but likewise they can heal.  So thank you for writing all those healing things to me.

As for Boo, he had a pretty good week.  He’s ravenous as usual, and his new kick is to put lettuce on grilled cheese sandwiches.  In the grand scheme of possibilities, I suppose it isn’t all that weird.  I wish he’d slow down and chew better, though.  He often eats so fast he ends up gagging.

We did some singing on our last car ride.  Jonah’s into the Chainsmokers and all kinds of other music.  Lately he’s been asking for a CD of electronica my friend Gina made in 2000.  It’s called Oracle of the Silent Mind; she sampled everything from Bugs Bunny to Beetejuice to make this opus.  I love that Boo loves and chooses it on his own accord, without prompting from his biased mama – and I’d love to share it with you, but I need to upload it to YouTube.

Other current Jonah favorites include a host of Top 40 selections (it seems Ryan Seacrest is the new Casey Kasum), some rap, and, on nearly every car ride, he requests the beloved immortal classic by Sonny and Cher, Gypsies, Tramps & Thieves.

Yeah, you read that right.

About a year ago I made a mix for him with lots of poppy dance music, like Groove is in the Heart and Gonna Make You Sweat (Everybody Dance Now).  I added Gypsies, Tramps & Thieves to the mix as a joke – and guess what?  It’s the only song on the whole damn mix he ever wants to hear.  “Mama mix?”  he asks to request this CD.  Then, “Number 12?” he adds, evidently jonesing for some Cher.  At the conclusion of the song, he states abruptly, “All done Mama mix,” and is on to the next request.  If he asks for radio but is displeased with the current offering on that station, he’ll ask “other radio?” and Andy will try another station.

I miss my Boo and am looking forward to tomorrow’s visit.  I’d like to try to make another mix for him, if only to find out which song he’ll enjoy the most.  Knowing his penchant for Gypsies, Tramps & Thieves, I’m tempted to seek out a similarly goofy tune – maybe Escape (The Piña Colada Song) or These Boots Are Made for Walkin.’

Feel free to comment with fun song suggestions.

Will Jonah like Put the Lime in the Coconut? In the Year 2525Lemon Tree?
There’s certainly no shortage of interesting and wacky music to try.

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Never stop listening to the music, Boo, whatever it may be.   I’ll be there tomorrow to share it with you.

Some of the people at the Anderson Center for Autism will email me every so often to check in and see if I have any questions or concerns.  More often than not, I’ll answer with just a brief note of appreciation, but sometimes I will ask a question or express a concern.

This past week was one of those times.  When one of Jonah’s behavior specialists emailed me, I directed the inquiring behavioral specialist to my broken post, explaining that I’d been depressed about Jonah’s seeming stagnation and asking for glimpses into Jonah’s life and happiness.  She emailed me back and asked if I wanted to talk.  We scheduled a time, and she called me.

I wonder if every parent she calls must force words past a throat tight from trying not to cry.  It seems I am always crying on the phone to the Anderson folk.  Hell, I don’t think they’ve ever heard my normal voice.  Anyway, we spoke, and she was kind, and said she saw a lot of hope for Jonah.  She told me he had, just that day, approached a new student in class who was sitting on a beanbag.  Jonah sat right down next to him, smiled, and was calm.

This behavior specialist knew I needed her to tell me something good.  And she kept on knowing it.  The next day, she sent me this email:

Hi,

I just wanted to send you a quick note.

Jonah went swimming with his classroom peers today!  He sat the edge splashing and playing for about 10 minutes before he walked to the deep end and finally jumped/dove in!  He swam to the stairs, got out, dove in, again and again!

He was laughing and enjoying himself!  Staff said the last few days at school have been really positive!

Best,

R

I felt the excitement of those exclamation marks.  Easily I pictured Jonah’s lithe form, diving effortlessly and gliding far under the surface of the water to pop up right at the ladder.  I sent R a thank you that could never hope to express how much the email meant to me.

Sometimes I feel envious of the people who get to witness Jonah’s joys firsthand.  I get so few glimpses of him that I over-record him when I see him and then watch the short videos over and over, as if to memorize his smiles and laughter.  It’s a strange thing to know that a whole group of other people have way, way, more interaction with my son than I do; a myriad of mundane activities are supervised and guided by his Anderson “family,”  for the past almost-five-years.  But all that time has trained my mind to accept this strange mother-not-mothering existence.

They’ve raised Boo’s dosage of Clozaril by a very little bit, and so maybe that’s the reason for his recent positive days.  For all I know, as I type this Jonah is mid-attack, biting and kicking and hitting.  But for now, today, I will read R’s email again and stay in that place and those moments, enjoying his time at the pool.  It’s a good place to stay; as transient and fleeting as it may be, it happened, and no one can force me to focus my gaze and thoughts elsewhere until I’m good and ready.  Even the email in my inbox (the one always from the same person, always to notify me of an incident of aggression) can sit there unopened for as long as I like.  I do not have to move on from Jonah’s swimming pool fun and nothing can make me move on from it.

Tomorrow I may be ready once again for the roller coaster.  Today I’m sitting on the bench and letting other people ride.

“So where to now, St. Peter?  If it’s true, I’m in your hands
I may not be a Christian, but I’ve done all one man can
I understand I’m on the road where all that was is gone
So where to now, St. Peter? Show me which road I’m on.”

~ Where to Now St. Peter?  by Bernie Taupin/ Elton John

“Somehow, something always happens just before things get to the very worst. It is as if Magic did it.  If I could only just remember that always. The worst thing never quite comes.”

A Little Princess by Francis Hodgson Burnett (one of my top 5 favorite books of all time)

So I escape into movies a lot, and last night decided to watch Dog Day Afternoon.  I hadn’t seen it in years, and forgot about the opening song – Elton John’s Amoreena.  Damn, it sounded good.  So good I listened to it over and over, then spent the rest of the evening delving into Tumbleweed Connection.

And I remembered something really, really important – that music can and will save me, every time, if I let it.  From Elton John I moved on to Guster, as I nearly always do ever since I discovered them early in 2003, and then a whole bunch of other stuff.  I don’t have or watch television at all, so I fill in the spaces with movies and music.  But sometimes I forget to listen to the music.  Then I hear something, and it hits me, and I’m reminded of its power.

And I let something else get completely by me — the fact that when we are on the car rides with Jonah, he immediately says music on?  Music is the first thing he asks for, every time.

While bemoaning Boo’s loss of interests, I somehow forgot about music. He still requests certain CDs and recites preferred tracks.  He asks for radio and then, when he wants a new station, for other radio.  How many videos have I posted with him rocking and jamming to his music?

Maybe when I see him tomorrow, I should sing.

There’s one new go-to song/video I want to share – George Ezra’s Listen to the Man.  I heard the song before I saw the singer and couldn’t believe what a youngster he is – and the video, starring Ian McKellen, is really very cute. 

Some new snapshots of Boo.  If I’ve got to be broken, I can at least be broken with my music and my pictures and my peeps (thank you, commenters all from yesterday – my fellow disbelieving & discombobulated).  You guys rock.

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