The Never Normal

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.

Read Full Post »

“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.

Read Full Post »

The months’ events blend and pour together, watercolor spills on pages.  I want the resulting mix to form a picture or a tale to tell, but it’s really just a sloppy mess.

That medicine…the Clozaril…it seems to be working still.  Kind of.  But nothing has been able to exorcise the aggressions.  He might be attacking less often, but he’s still attacking.

Meanwhile, seemingly all his interests – everything that’s provided me with amusing anecdotes to write about for the past five years – have faded away.  There’s no more asking for “Oompa Oompa” and laughing hysterically at the indignant passion of Grandpa Joe.  No more begging to walk on the dock by the river and then jumping in to swim, all silly and happy.   No more wanna go park, always choosing the first swing, asking for more push, jumping off to head down the path and explore.  No more watching YouTube videos of trains, entranced by the rush of movement and sound.

Evidently it’s become too much to expect Jonah to enjoy doing anything at all, and that’s a hard truth to swallow.

Yesterday, Jonah’s new psychiatrist called me.  She was in a team meeting with Jonah’s nurse, case worker and a few others.  She told me they want to increase the dosage of Clozaril.  I asked questions I suspected she couldn’t answer, but I asked them anyway.  Can they make the aggressions go away?  Will enough Clozaril stop this?   Do we need to trade his entire personality for it to happen?

My questions are jokes with shitty punchlines.  I have learned not to hope anymore.  Hope gets smashed too many times and expectations are brought down so many notches that I find myself beneath the surface where it’s always cold and dark and still.

Andy and I had one baby.  We dreamt of all the things he could be and do…all those wonder-filled possibilities taken away, one by one.  We dealt with it.  Okay, so he isn’t going to converse.  And okay, so he isn’t going to make friends.  He isn’t going to play on softball teams and tell ghost stories at sleepovers and fall in love.

I could always see the bright side.  I’d say to myself:  At least I don’t have to deal with competitive, gossipy soccer moms.  I won’t have to find a way to comfort him when world events are frightening.  I don’t have to watch the inevitability of innocence slipping away from him as it does from all of us who grow and learn and mature in the land of normalcy.

But then the possibilities taken away began to outnumber those left over.  Because he became aggressive, he wasn’t allowed to attend the beautiful autism summer camp in Altamont with the giant pool anymore.  Because he attacked others, he could no longer go to the fun after school program at the Center for the Disabled.  He’d had to leave his wonderful local school.  His mama and daddy.  His home.  And now he is too aggressive to stay at the residential school which he was sent to for being aggressive.   He is there today only because there is nowhere else for him to go.

On Sunday mornings, My mother and I drive down and meet Andy at his apartment.  We drive to Jonah’s school and we call Jonah’s residence (I can never really call it his house, let alone his home) and someone walks him out to us.  We are usually able to get back to the apartment without incident and sometimes Jonah will get out of the car and come inside.  Usually my mother has brought him something yummy to eat.  Usually he eats it, making a mess, occasionally throwing some of it at one of us.  Always he asks for car ride or mama in the front.  My mother stays in the apartment.  Once the three of us are in the car, there is no stopping or getting out of the car.  Jonah requests music and the volume of said music.  We take “loops” – specific cyclic driving routes past quaint restaurants and a giant fairground and the famous home of a president’s mistress.

If we are lucky Jonah does not attack us.  If we are lucky we do not need to pull over — and if we do have to pull over, we are lucky if nobody calls 911 when they see us and we do not have to explain ourselves to the police.  If we are lucky we will return to the apartment and Jonah will go back inside for a short while.  If we are lucky my mother and I will drive home a few hours later without tears, without bloody bite marks or bruises or a burning scalp.  Andy’s arms are a permanent criss-cross of scratches and scars.

I do not write about it for attention, or to seek sympathy.  Those things are useless.  I do not write about this to complain.  Complaining implies that someone can do something, that there is a repair that can be made.  I write because I started something when I innocently typed out my first post in August of 2010, and people have told me they are interested and they care.  People are dealing with similar shit and need to know they are not alone.  I don’t think it’s fair to disappear.  Yet in the midst of what feels like limbo, sometimes there just isn’t a lot I want to say.

Ours is a purgatory from which deliverance is, finally, neither expected nor anticipated.

I am grateful that Jonah is safe, and well cared for, as happy as an autistic child, plagued by aggression and drugged into God-knows-where, can be.  I can’t speak for Andy but I do know he is grateful too, and also uncomplainingly resigned to his fate.  He is Jonah’s father before everything else, and he has chosen that life, and it has been tremendously difficult.  It would have destroyed most other people I know.  At least he has a girlfriend and they are in love.  He deserves the best in this life.

I think about Andy lately, wondering at the wreck I made of his life.  I think about how he was my husband and now he isn’t, and how if I could only go back I would honor the intended lifelong bond of that and stick with him no matter what.  A few weeks ago, I bought the kind of shampoo he used when we were married, to capture even just the scent of that lost life.  Am I romanticizing it?  Am I wasting my time with if only?  Yes.  Yes, of course I am.

For a long time I’ve grasped at ways to manage the emotional toll of both my own choices and of circumstances over which I’ve had no control.  For what seems like forever I’ve grasped.  And I know better than to grasp – hell, I’ve read plenty of Thich Nhat Hanh.  But I have so often not been healthy, or wise, or even rational.  Some of those grasping ways I shared here – attempts at relationships, vacations to new places, things to build on or look forward to.  Places and people from which I sought excitement and happiness and hope.

But sitting here now, today typing this, I feel like I’ve finally, conclusively broken.

Too many cracks have converged – in Jonah’s life, in my life outside of him.  In the whole world.  As I type this, the death toll is still rising from the latest almost daily violent tragedy – this one a terrorist mowing down dozens of people with a fucking tractor trailer.  My oldest friend is 91, and it’s gotten to the point where I envy her for being on the way out of this world.

Should I be at the end of my blog if these are the things I am typing now?  Who wants to read doom and gloom?  It’s what I’ve felt for a while, so I haven’t been posting.  I’ve been writing the posts, though — dozens of blog entries, all alike, all deleted.  Maybe I’ll actually publish this one.

Maybe it’s just today that I’ve run out of ways to spin it.

There was one miracle, though.  I saved it – the best – for last.  it’s Jonah’s school photo, taken by Life Touch, where he looks positively beatific.  See for yourself:

How they got him to sit still, let alone pose and smile, is the mystery of the millennium.  In my life and under our current circumstances, I call that a miracle.  I pull the photo out constantly and look at my beautiful boy.

I love him more than I am broken, even.

Maybe that’s the very thing that keeps me pushing on.

Read Full Post »