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Archive for the ‘behavior’ Category

Sometimes hope is the feeling that the feeling you have isn’t permanent.”  ~ Jean Kerr

Tuesday was a series of weird, strange, amazing events, most of which occurred after we’d left Jonah behind at the school.  And everything has been surreal since.

Jonah Russell “Boo” Krebs was admitted into the Anderson Center for Autism 34 years to the day after Elvis Presley died.  There’s a reason I noted the Elvis connection but I don’t want you to think I’m creating associations where they don’t exist, so I’ll let that fact just sit there for now.

It was harder on me emotionally the day before, Monday.  Andy and I had sorted through all his clothes, and I’d gone back to my apartment for the day, and my awesome friend Richie called.  Richie lives in Japan and I get to see him maybe once every 3 or 4 years and talk to him twice a year or so.  Incredibly, he was calling from New York City, and when I told him we were taking Jonah to Anderson the next day, immediately he offered his help – with whatever we needed.

I thought only a few seconds before I asked him:  Can you drive me back to Albany from Anderson once we’re all done?   He assured me that would be fine, even though I predicted I’d be a basket case.  He’s one of the few people in the world I’d want to drive me to Albany after having placed my son in a residence school, and he materializes exactly on the day I need him.

Amazing.

Armed with the knowledge that my dear friend would be there to get me, we set out – Andy dressed nicely to job/apartment hunt (He will be living near enough to Jonah to visit him a lot, something I am both grateful for and happy about).

During the car ride to Anderson, I’m pretty sure Jonah picked up on our whole vibe; the strong visual clue of a pile of bags and bins in the car probably confirmed his theory:  something’s up.

“Home?”  he asked, growing concerned.  A tear escaped my eye, and then another and another; clenching my jaw, I set my bones into cement-hard tightness, held my breath, and sat in silence.  The second time he asked I think Andy might have said “later, buddy.”  It probably took all he had to say it.  These were the worst moments – the height and weight and breadth of everything we’d dreaded.  No more going home for Jonah.

Upon arrival things moved swiftly.  We all met in a conference room – me, Jonah, Andy, one of the nurses, the admissions specialist, & Jonah’s caseworker, teacher, and behavior specialist.  A nurse sitting next to me reviewed Jonah’s meds and gave me a big, encouraging hug.  Everything was surreal, happening impossibly fast.  They took their time in explaining details, but I only half-listened as my heart pounded, pounded, pounded.  Thank God it’s all written down, the numbers and information we need.

It was explained to us that Jonah would go with the teacher and behavioral specialist to the classroom, and we would continue on to his house to set up his room, ask any questions, and then leave.  Everyone left the room so we three could say our goodbyes.  I knelt down to Jonah first and inhaled deep, right at the top of his little head, memorizing his scent.  I hugged and kissed him, whispered mama loves you, and watched as Andy said goodbye as well.  Almost before we or he knew what had happened, he was disappearing down a hall, one little hand in each of the two teachers.  I’d fabric painted Jonah a shirt the day before that said “Hi! My name is Jonah!” – you can see it if you look at the last blog post, which was taken Tuesday morning just before we’d left.

The last glimpse of my boo’s shirt was the most difficult thing to see; the impulse to run after him was the most difficult thing to fight.

We didn’t cry.  My jaw was tight and my eyes fixed, shoulders stiffened anxiety-high.  Andy is harder to read but I think he handled it as best he could, too.

We were escorted down to Jonah’s residence to unpack all of this things.  In silence we worked to fill his drawers and set up his towels, his bed, a small wall hanging, his little photo albums I’d made for him, and the few toys I’d brought along.  When we were done, Andy dropped me off near the entrance of Anderson (after assuring me that he’d be in town for a few hours if I needed help or a ride) and I sat on a little bench to wait for Richie.

There was a very small hill to climb to get to the bench, and I noticed a sign:

It turns out my bench was a part of this whole “sensory garden” that different kids had made over the years – benches with hand prints…a trestle-threshold to walk through, mosaic tiles pressed into the ground…a statue girl of stone, perpetually watering her garden.

Here’s where Elvis comes back into the story.  I’ve spoken of my best friend Gina in this blog, who I lost to suicide in October of 2002.  Well she and I loved hawks, and every time I see one, I think of her.  Hawks often appear when I need her, to give me a smile or some hope.  Plus, she was born on Elvis’ birthday – exactly 34 years after Elvis.  So I’m bringing Jonah exactly 34 years after his death, and she was born exactly 34 years after his birth, and I don’t know what it all means but there isn’t a hawk in sight and still it feels very coincidental – not sure about the number 34, but Gina never made it past 33, so there’s that…I’m beginning to lose it a little, thinking, and I stare off into space, seeking a void so I don’t have to feel anything.

I was very still on the bench. Breathing.  Breathing.  Breathing.   If I live to be 100 I will never forget the weather that day- the feeling in my middle – and everything that happened next.

Behind the sensory garden was an open field with woods.  The cicadas were August-loud.  Rain came and went in teeny sputters swept on breezes; it was muggy, then cooler.  Here I have to pause again to tell you Richie and I had a very good friend, my second-best-friend-after-Gina best friend, who died last year.  She too was young, only 38 or so – my Sanx-sister, J.  We’d gone to college together, Richie and Sanx and I, and had managed to reunite at Sanx’s parents house every few years whenever we could until she died in the spring of 2010.

Back in our college days Sanx and I adored deer, which were aplenty on our country college campus.  To get close to them we often went so far as to lie near-flat in the pre-dawn dewy grass, still as the statue girl of stone – just to watch the beautiful lithe creatures emerge from their forest paths, often with fawn, silently eat the grass and step about like gentle, graceful spirits.  When I see deer, I think of Sanx the same way hawks bring Gina to mind when I see them.

So here I am on the bench, all still, zoned out and waiting for Richie, and I hear what sounds like a cross between a goose honk and a dog bark, right over my left shoulder.  Were I a more mindful or meditative person I might’ve been able to turn my head ever-so-slowly, or even remain still, but I’m neither mindful nor meditative enough, and so I turned quickly and scared away a deer that had been sneaking up on me from out of the forest and across the field.  She bounded, flashes of her white tail all I could really see until she stopped at the edge of the forest.  We regarded one another, she and I, now 50 yards or so away from one another:

But she’d been almost right behind me.

Immediately after taking the picture, I got a strange shiver, something telling me to look up, and, circling directly over my head, was a red-tailed hawk, sailing, a sudden shaft of sun brightening its wings.  My Gina.  And my Sanx.  And then, just as suddenly, round the corner in his little rented Ford, comes Richie, arriving to hug me tight in his arms and take me home.

There is more of course, but from my perspective it was a day of miracles.

I called Anderson twice that day, two the next, and then again today.  He’s acclimated quickly and did very well on Tuesday, playing and eating okay, helping set the table and clean up the garbage, going to the playground and in the pool.  Then he pushed the envelope a little more on Wednesday.

But I just called his teacher today, and she said he had 20-25 aggressions today.  It seems like they’re getting a taste of the real Jonah, and I’m grateful they’re handling him okay.  His teacher was kind enough to e-mail me after we’d spoken:

Hi Amy,

I just wanted to e-mail you after our conversation today because I sensed your worry and I wanted to put your mind at ease. The whole team has a lot of hope for Jonah…we’ve seen many children with similar behaviors and we wouldn’t work at Anderson if we didn’t want to help them! I know it’s only the third day but  think he’s going to be very successful here…it’s just a matter of finding what works for him! I hope you have a great day! 
Best,
S

What great communicators.  I am grateful that they really care, and show it.

Nearly everything I’ve said is from my own little micro-perspective, where there is an all-around foundation of strange.

My car even turned to 77777:

and when I went to the mall yesterday to do a little retail therapy, I happened to walk into a store I rarely visit because they’re pricey – but I noticed they had $10 t-shirts so I looked at them.  One faded v-neck purple one said, in barely-readable letters against a pattern of black wing-and-orchid shapes:

there was a rainstorm
that while we walked through
woke every flower
in the field.
that day the echo of
warm rain and the
melancholy breeze
became our
favorite
song.

Of course I bought it.

Now my days are free, and weird.  I’m still only half-awake, only half-aware that this has happened.  I believe Jonah will do well at his new school.  I listen to the signs, silly as they may seem, because to me they spell and shout HOPE, and I am embracing that hope and turning my sweet boo over to Mother Mary’s warm embrace, to sit on Jesus’ knee.  I’m letting go and letting God, to paraphrase it in a Christian context.  I’m bowing to the divine inside his caregivers and teachers.   I’m trusting, trusting, trusting.

Here’s a picture they sent me.  He looks so happy!

I love you, boo!

Thank you thank you thank you.  That is my prayer.  Thank you.

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“Welcome…
You’re under control
And buried like a mole
A thousand feet below

Waiting
With all that we’ve got
Our reputation’s shot
A ninety-story fall

No one here can make a sound
We’re all ghosts in this town
We are standing in the trenches
Of the new underground

Pipe down
Stay under control
It’s getting so absurd
Soon everything will turn

It’s that time
To see the Sun
There’ll be a crack
And a day will come
Maybe then we’ll be the ones;
Never can be sure
The shot heard ’round the world…”

lyrics by Guster
—–
—–
M and I took Jonah in the afternoon on Saturday and the morning on Sunday.  I have been taking all kinds of pictures so I can return to them, and to boo, whenever I want…
——-
even when he moves to hit the car window, or a person, with a smile on his face
——
& yet stay calm as we stop to say hello to a beautiful doe
——
he can sit still with safe hands and body
——
but tick tick tick tick tick tick tick tick tick
goes the Jonah time-bomb.
——
The is always an explosion.  With shrapnel and wounds.  And yet I still, God help me, don’t want to let him go.  I want a hero to come out of nowhere, an Autism Super Nanny who’ll whisk in at the last moment to “therapize” the anger right out of him and get to work on making him a normal kid with autism.
——
It’s almost funny. I’m not asking for a ‘normal’ kid.  I just want a normal-kid-with-autism.  I know there is no such thing.  I don’t know what I mean.  I’m slipping down the slope, Buddhist practice notwithstanding.  Cherish me, cherish you.  Breathe.
——
I understand every time someone tells me I am doing the only thing there is to do – that we’ve exhausted all possibilities – that he will get better at the residential educational home.  It’s not that I can’t or don’t comprehend these things.  But I feel this way anyway.  Frantic.  Frightened.  Fucked up.
——
My great friend K and I had brunch yesterday after M and I had taken him for the morning.  I kept beginning sentences and then stopping them abruptly, swallowing hard…
——
“and the steel eye, tight jaw, say it all…” ~Cake
——
…she understood and, after a pause, would tell a funny story or take the conversation in a different direction.  She let me talk but she knew exactly when to steer the topic away from what would make me cry.  That’s a skill, and she’s got it, and I’m grateful.
——
After brunch, she brought me to her car and said she had a present for me.  I was shocked.
Inside the gift bag was this this:
——
Good thing we were inside her car because I started to cry, and hard.  I loved it.  She could not have chosen a better present for me if she had looked all over the world.  I hugged her and held her tight.
——
HOPE – made of fence posts and flowers.
——
She literally gave me HOPE.

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I’ve gone through a time bending worm-hole.  It was six weeks away, and now it is a week and a day.  I will pour myself into work, twice as much as usual, for I’m taking next week off to do this thing and then process it best I can without having to think too much. 

I keep calling it this thing like it doesn’t deserve recognition in any other terms.  My God, I’m going nuts.  Off the charts.  Just mailed the direct care workers at Jonah’s residence letters and pictures and my blog address, cell phone number – as much information as I could muster about my precious, barely-verbal boo. 

Also I sent thank yous – expressions of gratitude for what they do and deal with every day, for choosing to help these children and face injury and shit smears and God knows what else – all for less money than they deserve, undoubtedly – for what they do is priceless.

I hope this week and next week fly by.  I hope I can go far inside my head, into a Novocain-place, into numbness and ennui, even when I must be awake to work & think.  As oxymoronic as it sounds, I want the foundation of my days to be a state of sleep from which I can wake later, later.  Some other time.  Some other place.

I don’t want to live through this.

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Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it.  He loves yoga too, and his scooter they pull him around on with a weighted-vest.  My sensory-craver boy…

Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair.  D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash.  He was hopping mad, of course.  It looked like a circus act, with hair flying everywhere and Jonah twisting around.  Good thing the neighbors weren’t out.  Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness.  I went outside to the driveway where all boo’s hair was scattered and picked up a lock.  Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.

Of course he gave D and I plenty of trouble on the way to H’s house and pool.  Safe hands? he’d ask D, wanting her to hold both his hands.  She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again.  Over and over.  He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.

What?  D and I would ask each other, unable to talk above the noise.  No wonder I am going for a hearing test this afternoon.  Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering.  I always did like my music loud.

Then Jonah started to beg for hot dog.  Hotdogwithmustard?  he asked repeatedly.  Hotdogwithmustard?  My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.

Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops.  ADHD?  D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time.  Let’s ride the escalator 75 times!  Let’s stare into the street sewer for a half an hour!  Let’s go on the merry-go-round 8 times in a row!

Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some.  I might even upgrade my account so I can post video.  I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.

“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”

~ Spirit Voices by Paul Simon

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In preparation for Jonah’s new chapter in life we are (hopefully successfully) going to give him a buzz cut tonight.  Sitter/cousin D is coming over to help Andy and me- and with the 3 of us we should be able to get ‘er done.  Then, if it clears up and is nice later, D and I will take him to friend H’s to swim. 

I am starting to think ahead, beyond the time when Jonah goes away.  Before this I was simply thinking of it as a doomsday clock – that everything would come to an end on August 16th – that there was no point in thinking beyond this day or its inevitable heartbreak (and relief?).

My fantastic therapist, Dr. Alex, mentioned that I maybe should make a (real or metaphorical) social story for ME.  I’ve made one for Jonah and something like one to send to his care workers, but one for ME might help me prepare emotionally – to help me not block out, ignore, or go numb about all of this, which are the defense mechanisms I have been using.

Jonah has been awful at school.  Where usually he would be at camp during summer school, this year he has been disallowed (and, unfortunately, rightfully so) because of his behaviors.  I’m so happy the Anderson School has such a big, nice pool so he can swim.  At Wildwood he has been what they euphemistically call “smearing” almost every day.  YUCK.  Then they have to shower him and clean all the shit off him, the walls, themselves – and probably endure scratches, bites, and kicks in the process.  The dedication of these direct-care workers amazes me. 

It would be one thing if they were making the money they deserve, but the money just isn’t there.  I wish they could have a capital campaign earmarked specifically to raise salaries of these incredible individuals.  I am so grateful for them I want to fall at their feet and sob out my thanks, in my usual over-the-top style.  Instead I will make them gift bags and pray they’ll know, somewhere in their hearts, how much they (and Wildwood) have meant to us and to all the children who need them.  What a wonderful school. 

Here’s Jonah learning emotions, a year or two ago, with his speech teacher, L.  In an earlier post I put up a picture of “excited face.”  Here is “mad face” :

If Anderson is anything like Wildwood I will be so relieved. 

I have received ever-increasing support from everywhere – people e-mailing me, leaving comments here – people who don’t even know me, or who knew me from my childhood.  People I’ve met both virtually and personally who’ve been through this or are going through it…we’re like Sgt. Jonah’s broken hopeful hearts club bandI am not alone.  I am not alone.  It is my mantra and I cling to it like a proverbial rope you climb to get up and back over the cliff.

I yearn for Gina, for she was my sister-in-spirit.  I yearn for siblings, for I have none.  But I don’t want to yearn.   I don’t want to worry.  When I don’t want to worry I think of this Bible verse:

“Look at the birds of the air; your heavenly father feeds them. Are you not much more valuable than they? Matthew 6:26

Stay focused, Amy.  Have faith.  Stay busy, stay optimistic, stay positive. 

And don’t forget to breathe.  When I want to remember to breathe I think of HH the Dalai Lama:

Practice for the New Millennium by the Dalai Lama

1. Spend 5 minutes at the beginning of each day remembering we all want the same things (to be happy and be loved) and we are all connected to one another.

2. Spend 5 minutes breathing in, cherishing yourself; and, breathing out cherishing others. If you think about people you have difficulty cherishing, extend your cherishing to them anyway.

3. During the day, extend that attitude to everyone you meet. Practice cherishing the “simplest” person (clerks, attendants, etc) or people you dislike.

4. Continue this practice no matter what happens or what anyone does to you.

These thoughts are very simple, inspiring and helpful. The practice of cherishing can be taken very deeply if done wordlessly, allowing yourself to feel the love and appreciation that already exists in your heart.

I’m trying; I’m learning.  I’m grateful. 

I just hurt.

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There’s no earthly way of knowing… which direction we are going…” ~ Willie Wonka

Not only don’t I know which direction we are going, but I don’t even know now where I am.  I sleep as early and as much as possible – greedily falling into the cushion-y darkness where everything turns OFF for long, glorious hours.  I wake confused, then teary, and I gulp down the pills that help me through the day.  I’m just not hungry lately either.  It’s as if I got to an anxiety/fear point so high I smashed through its glass roof (Willie Wonka style, speaking of the great confectioner) and now I’m flying around grasping at different ideas, completely ungrounded, definitely dazed, and evidently, flaking out as well.

All these thoughts.  I decided I ‘m going to learn Spanish.  I want to visit Mansfield, MO, home of my beloved heroine, Laura Ingalls Wilder.  I’m going to read books even as an English major I’d never dared attempt:  Les Miserable and War and Peace.  I’ll learn to play guitar.  Write a novel, maybe even out of this blog.  Visit my relatives, send them all care packages.  Volunteer to read to kids at the library.  Walk dogs at the humane society.  Do yoga.  Learn to paint.  Anything, everything.  Something so I’m not nobody doing nothing.

Sometimes I have these grandiose plans to change the world, at least my world and the people in and around it, making positive deposits in the great big bank of karma.

But still I play out scenarios of the day we drop off our son, over and over, with different circumstances and outcomes each time…except he is always gone at the end.  In the scenarios we always have to go, we always drive away.  He is always, always gone, and he will be gone, and he will be gone soon.  No wonder I am meditating on impermanence.  I can’t really comprehend any of it.

Andy and I met with a mediator and we have workbooks to fill in, just like we did at the church when we were planning to marry.  Everything is cyclic.  We will wait until Jonah is at his new school and then we will re-convene, workbooks completed, bringing yet another thing to its conclusion.

My friend H (bless her) invited M and me and Jonah to her pool again tomorrow, thank you thank you thank you little H.  To her it may not be much but to us it is everything.  Yesterday M and I had to drive Jonah around the entire time we had him; there was simply nowhere we could go.  It poured rain and Jonah didn’t want music.  I got him singing at one point but then he started his repetitive requesting-phase:

Wannatakeabath?  Wannatakeabath?  Wannatakeabath? Bye Bye M.  Wannatakeabath?  Daddy?  Wannatakeabath? Bye Bye M.  Daddy?  Daddy?  Grandma?  Swim-pool? Swim-pool? Wannatakeabath? Wannatakeabath? Wannatakeabath? Wannatakeabath? (Insert BLOOD-CURDLING SCREAM instantly followed by giggling laughter).  WannaseeJack?  WannaseeJack?

And I curse myself for gritting my teeth and wanting to shout SHUT UP because soon enough I’ll wish I could hear his little voice, no matter what it was saying or shouting or screaming.

Oh, what a weird place in time & space this is.

“For the rowers keep on rowing,
And they’re certainly not showing
Any signs that they are slowing…

~Willie Wonka

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My good friend H, bless her, invited me and M and Jonah over to her house tonight and Thursday night to swim.  It’s all for Jonah, of course, and I soak up every moment of his dolphin-happiness;  at his request, swimming sans swimsuit again.

At one point he came climbing, seemingly happily, up the stairs of the pool and onto the deck, where he ran past me and went to dig his little fingers into H’s son D’s face.  We managed to avoid any injury, but only by a hair.  We re-directed Jonah back to the pool, and brave little D spent just a moment hiding behind his mom before smiling again and throwing balls into the water for Jonah to play with.  He’s a sweet little boy, almost 4.  I marvel at his words – his brain and how it works so differently from Jonah’s.

It’s always a swim-and-run, as Jonah decides abruptly when it is time to leave and simply starts heading toward the car – but this time Jonah scored himself a hot dog and some black soda as well, the little scamp.

When M and I got home, he surprised me by having DVR’ed old-school Bugs Bunny cartoons, and one of them was my absolute favorite – with Marvin-the-Martian:

Now Lewis Black is on TV; M and I saw him at the Palace Theater last year.  He just said:  “The Republican party has bad ideas, and the Democrats have no ideas.”

I think he’s right.

Anyway, I feel better tonight.  I feel grateful.

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I don’t consider myself much of a poet, but I wrote some poems for Jonah when he was a baby, when I expected something far different than what my life has become…when I saw a path clearly before me and walked it with something like confidence… 

…when I expected to be sitting in the bleachers now, cheering him on at his little league game.  When I expected to be friends with other mothers whose kids played with and shared activites with Jonah.  When I expected to be able to bring my son to a child’s birthday party and watch him scream with joy as all the candy came pouring out of the piñata, instead of hovering over him as he opened and closed the host’s sliding glass door incessantly. 

Instead of taking him to the park by myself, pretending other parents and kids weren’t staring, wondering, maybe judging, but never approaching us except when some child would ask with curiousity, “Is he a baby?” or “why can’t he talk?” – and me choking on my tears as I tried to explain.

…instead of losing touch with most of my friends because I became a hermit and uncomfortable around (and often unfairly resented) NT families.  And all this before any aggression and violence.   And all that before checking myself into a mental health facility.  And all that before making the decision to take him to live at a residential school.  And all that before ending my marriage. 

Do I sound like I feel sorry for myself?   Sometimes I do.  My therapist even gave me permission last night, so long as I don’t martyr myself or wallow.   In 4 weeks my son will be gone and my legal separation will be taking place.  Doc tells me I have osteoporosis with a lower vertebrae fracture.  I’m waiting on results from two biopsies, can’t keep weight on, have this strange ringing in both my ears, and sleep as much as I possibly can.  (I”m definitely not Darwin’s poster child).  I’m so tired of crying and feeling anxious, missing parties and weddings and picnics I am invited to because I can’t bring myself to go; if anyone asked me anything at all about Jonah, I feel like I’d lose it and ruin all the fun. Plus for me right now there is nothing to celebrate except “I am doing the right thing” with Jonah, so people tell me. 

Some people insist they couldn’t do it, “put their child away.”  You can when you have to.  You can do anything when you have to, I guess.  I know this is just a hill I have to run up and over, but my legs are cramping and I have no breath.  I don’t know what’s on the other side of the hill, and that scares me too.  Weakling, a voice inside me whispers.  WorthlessYou are superflous now.

I’ve revisited my poems from Jonah’s babyhood, and I thought this one strangely prophetic:

I am your mother.

I may hold you clumsily close, my
sharp angles & skinny arms awkward,
but I hold you close anyway.

You find a comfort in my bones
as walls of a former residence;
as familiar pillars echoing womb whispers…
as fetal backdrop for acrobatic feats.

I may sing you nonsense, silly snippets
of all kinds of songs, lazily off-key
but I sing them to you anyway.

You find a diamond in my song
as the voice you heard awash, internal;
as divinity, a speaker in the sky…
as soundtrack to gestation’s miracle.

I may love you with a racing heartbeat
composed of odd & syncopated rhythms,
but I love you with every heartbeat anyway.

You find a living element in my love
as the cycling pulse of ocean tides;
as habitat for emotion magic, undefined…
as something inside you that can never die.

I will always be your mother.

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“I been talkin’ to Jesus, but he’s not talkin’ to me…”  ~Guster

Wednesday morning I met Andy and Jonah at the Retina Care Center at 7:30am for Jonah’s eye exam.  The last couple times Andy tried to drive him, they never even made it to the building because Jonah was violent, so we hadn’t been there for a while.  And even though we always ask for the first appointment of the day and it is the crack of dawn, there are always about 9 other patients waiting; I don’t think Jonah’s ever been the first patient actually seen by the doctor.

The staff knows Jonah falls apart quickly – they’ve certainly seen it many times before.  And when I say “falls apart,” I mean falls the fuck apart, aggressing so that Andy has to get him out – biting, scratching, kicking and thrashing – and screaming so piercingly, frighteningly loud you could sell the sound as a special-effects scream for a horror movie.

But Jonah did well this time.  He only needed to be re-directed about 40 times during the course of our 15-20 minute wait.  He begged repeatedly for “ride brown car-ah,” dumped the container of glaucoma brochures, nestled his little face against his daddy’s, asking for hug?, yelling MEOW, walking over toward the exam room and back to mama, announcing boobie!, flopping and flailing on the carpet at least twice.  All this on medication to calm him.

(My friend K just e-mailed to tell me it looks like Thing from The Addams Family is crawling on Jonah’s head, and I laughed my head off.  It totally does.  Creepy!)

It’s funny how you go from being embarrassed by your child’s behavior to not really giving a damn if people think you’re bad parents or your kid is an unruly retard.  It took me a good while to get to the place where you don’t give a damn.  It feels better here.

When they finally gave Jonah his eye exam, though, I was impressed at his cooperation to deal with the dilating drops, more waiting in another waiting room, sitting in a strange chair in a small exam room in the near-dark, holding the black plastic thingee over one eye, reciting his letters.  (How do they get this information from non-verbal patients?)  He tolerated the different slides of  smaller and smaller letters – with both eyes, even.  The doc told me later that his eyes were about 20/25.  After she examined his eyes in another exam room (with fancier equipment he also tolerated admirably), Andy and Jonah went bye bye doctor and I stayed behind to talk with her.

She’s kind, sharp and smart; she was the one who operated on Jonah’s left eye.  I trust her.  I made an appointment for October and left, holding the card in my hand, thinking the next time we bring him, it will be after picking him up where he’ll be living, an hour and a half away, at the Anderson School for Autism.  Halfway down the hallway stairs I stopped walking and turned the card over and over in my hand.  “…where he’ll be living, at the Anderson School for Autism…”

I revisited the thought from a place of detachment, kind of the way you do when you first hear about the death of someone close. There isn’t a right way to react to all that has happened during this past year.  I’ve gone into a mode where I’ve ceased to be surprised by anything at all, where every part of me knows that anything can happen, at any time, to anyone.  Everything comes at us so quickly now, and there is a sense of unshakable urgency.

Yesterday after work Andy and I took Jonah for a car ride, and on the way home there was a beautiful rainbow.  (Whenever I see a rainbow, I stop whatever it is I’m doing to take a picture – even if it means running out into the parking lot at work and getting all wet to do it).   I pulled the car over and took as many pictures as I could before I started to feel like that double-rainbow dude on Tosh.O.


I need to continue to notice things, be grateful for things, believe things.
There is no other way right now.  This is my necessary path.

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Andy and I Jonah and I left Albany at 6am last Tuesday to bring Jonah to Boston Children’s Hospital for a 9am appointment with a pediatric rheumatologist (because even though we live in the pretty little capital city of New York State, there are zero pediatric rheumatologists here).   Jonah has been limping and was clinically diagnosed with pediatric juvenile arthritis based on other health problems like synovitis in his hip and jaw, and iritis/uveitis in his left eye.

In February of 2010 little boo had an operation on that eye to replace the lens, and they implanted something called Retisert to constantly dispense small doses of steroids locally.  When we got him home and the anesthesia wore off completely, I took a picture of him in his misery.  I guess I wanted to record it while desperate to alleviate it.

I hate this picture.

This was the only time in his little life that he verbally expressed pain to us:  eye hurt, he cried – just once – as if agony could forcibly pull language out of him.

We gave him medicine and I rocked him in my arms, wishing I could fix everything.  Turns out we can’t fix his arthritis either – but it’s mild, they told us, and naproxen should be able to help him with his limping and any associated pain.  They told us neither his eye nor his arthritis would cause his aggressions.  Nobody can tell us what causes the violence exploding like mines inside him, timed to a schedule so erratic it has no business being associated with time at all.

The three hour trip to Boston was okay – we’d given him sedatives the doc had prescribed – and we managed to get him in and out of the short appointment without any major aggressions.  It is undoubtedly an amazing hospital, even aesthetically, complete with musical steps, bubbling walls, and God knows what else we didn’t see because we were in and out of there so quickly.  On the ride home we had to pull over three or four times because Jonah went bezerk.  Andy ended up in the backseat with him, holding him, getting his own arms scratched to hell.  There was virtually no conversation there or back.  We were collectively frazzled – got back into town around 3.

After I dropped Andy and Jonah at the house I went home to my apartment where sweet Jack Ingalls was waiting,

and I lay across the bed, trying to make myself think of nothing.

“The things that I’ve loved; the things that I’ve lost
The things I’ve held sacred that I’ve dropped
I won’t lie no more, you can bet
I don’t want to learn what I’ll need to forget…”

~ Audioslave again, “Doesn’t Remind Me”

I can’t write anything else right now.

I’ll come back.

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