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Archive for March, 2011

I carry my camera almost everywhere I go, so it was on hand today when I went to check the mail and saw three tiny, miraculous patches of what I think are crocuses.  Here’s one of the patches, pushing out of the brown, dead, winter-packed ground.

According to the weatherman, by Friday night they’ll be buried beneath a blanket of snow of as-yet undetermined thickness.

I don’t mind.  It can’t beat us down now, can it?  At least not for long.

It might do those crocuses in, though.

Yesterday Andy picked me up at work and we went to the meeting at Jonah’s School with the people from Springbrook, who had evidently arrived an hour or so before us to observe Jonah in his classroom setting.  I guess he did pretty well while they were watching him and attended to whatever task he’d been given, with just a small swat thrown in for good measure.  We stopped at the nurse’s office to sign permission for them to give him ibuprofen for his leg (he’s been limping a little on and off lately, something else we have to get to the bottom of)…and in the hallway there lingered the unmistakable aroma of poop, courtesy of our beloved child.

At some point, evidently after the Springbrook people left the classroom, Jonah either needed or requested the safe room and then decided to shit, dig around in his pull-up, and retrieve some of his freshly-pressed play-doh to smear on the walls.  I’m not big into text-speak but WTF?

We got the big-time aggressor.  Can we at least not have the shit-smearer too?

So while they cleaned him up and kept him occupied, Andy and I met with Wildwood staff and the Springbrook folk in a small office and they asked us questions about Jonah and we asked them questions about Springbrook and at first they kept directing all their questions at me

funny how people automatically turn to the mother for the answers about a child

and I told them Jonah was living with his father, and Andy was articulate and honest in speaking to them, and I emphasized how hard this was for Andy, and they nodded a lot in empathy and understanding, and I told them we liked their place best, we think

and I asked if they would tell us if and how and when they would take our son to live and be educated and nurtured and please love him some hour and a half away from us because we can’t do this thing anymore

and we never thought this would happen to us

and we feel torn and confused as hell,  sometimes guilty and often frightened, usually stressed

and almost always anxious

but they have to go back and have a committee meeting and they’ll probably be contacting us by the end of the week to let us know

and then we all shook hands and smiled

and Andy and I got back in the car.  I asked him if Springbrook accepts him, is that where you want him to go? and he said yes and we were quiet mostly as he drove me back to work.

As I walked up the stairs to my office, they were just about to sing happy birthday and serve goodies to the two March birthday peeps.  I smiled and dug into my cake with the rest of them, allowing the worry to fall behind me.  It’s something I have learned how to choose, a defense mechanism in my brain keeping me sane and functioning.

I usually can shed intrusive thinking like a dead skin; I’ve been led to understand that all that matters- all that can matter – is right now.

The end of the week will come, and they will either take Jonah or they won’t, and if they don’t, he’s been accepted at Tradewinds, and it will all happen the way it is supposed to happen whether I worry about it or not

in this soon-to-be-snowy shit-smeared spring of ours.


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We had taken Jonah off all the meds completely and it lasted about two days before Andy decided to put him back on the Risperdal; I’m calling the psychiatrist today to advise him.  We were not exactly thrilled with the effect of Risperdal on Jonah but my God, keeping him entirely unmedicated is definitely not the answer.

Off all meds, Jonah turned back into the boy who drove us to the psychiatric center in October, constantly swatting, alternately laughing and crying, able to play and sing but also vicious in his ability to ramp up from 0 to 100 in 0.2 seconds with no antecedent whatsoever, hurting Andy, hitting and throwing things.

I think Andy was ready to go berserk, and maybe still is, but this weekend we were lucky enough to have my cousin D come to help us, 4 hours each day.  We we able to pay her well (thanks for a respite sitter grant from Catholic Charities)  and I came over too to help out.

Both days we mostly rode Jonah around while Andy rested, took walks, went grocery shopping…  We managed him okay, though he did try to attack us – but D knows how to hold kids with autism and other behavioral problems – she works with kids at the Center for Disability Services – so I felt safe and had an awesome person to hang out with while we were spending time with Jonah.

Lately Jonah’s been asking for waterfall and signing it too, so on Sunday…

(after we cleaned up the coffeepot and grounds from the kitchen floor that greeted us when we arrived; Andy had Jonah on a time-out in his room for throwing the whole works, so it gave us time to put things back in order – this is the point at which Andy decided to medicate him again and gave him a Risperdal pill)

…we drove him out to the Rensselaerville Falls even though there is still lots of snow there and we couldn’t walk all the way down to the falls.  He loved it!

With big cousin D:

Then we took pictures of the falls, where a whirlpool spun these circles of ice in an ever-rotating pattern that amazed us!

Of course on the ride hom he threw his shoes, his drink box, and his peanut butter roll at us, but we got home safely and uninjured.  It was a better weekend, probably for all of us, than we’ve had in a long time.

Thank God.

Tomorrow Andy and I have a meeting at 2pm with the folks from Springbrook, who are coming to Wildwood to observe Jonah.   I am nervous about the appointment but also glad we are closer to figuring out a good, safe, hope-filled education plan for our little boo…

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Here’s the thing.

It’s not the one day of attacks, or the one incident of aggression; it’s the accumulation of day after day after day of the same thing, the same attempts to quell the behaviors that end in failure after falure, the same silence that falls on a situation we’re in – a cage, prison walls, something inescapable that has now become our “normal.”

Yesterday at school Jonah went to the safe room three times, and all three times he pooped and smeared it all over the walls and himself.  They cleaned him up as best they could while he fought them, then he cried and cried, and finally tried to run out of the building (a new trick for him).  The undoubtedly underpaid workers at Wildwood are angels and saints.   

Here’s one of his speech teachers, teaching Jonah about emotions and asking him to mock her facial expressions while they watch themselves in a mirror.  This is from June of 2010 – they are doing “excited” – I love this picture:

When I got out of work I went straight to the house and Jonah wanted a car ride.  As expensive as gas is, it is worth it to us when he is good on the rides (we have no idea why he was such a hellion in school and then was so much better for us at home)… Andy sat in the passenger seat and we drove over to the Voorheeesville Stewarts to get Jonah a peanut butter roll and visit the train tracks where we saw two trains, which this time neither excited nor annoyed him.  He was good, so we kept riding.  And riding.  We’d ride around forever if it meant our boy would be calm, and happy, sucking his thumb and looking around contentedly.  This kind of silence is welcome; we let Guster play on the CD player and drive along without speaking much.

We’d give anything to take away whatever anxiety or fear or confusion or pain that’s inside him.  It’s the accumulation of days, now, that piles on, swaying and unbalanced – and apt to fall at any time.

Thank you to my commenters, who always encourage and support, inform and try to help.  I appreciate you all more than you know!

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hold it

Hold it. This wasn’t the way it was supposed to
pan out, we both flattened beneath a spinning situation
ironed hot, scorched and out of orbit.

Am I dreaming first your stay, then mine –
clay-making, group, meal-lines like college, the
potent connections made in all those suffering days,
the way the womb became a mother-cushion?

Hold it.

Hold on. This is what I tell you. I see you suffer,
breathe, clutch, push time along to sleep, placing
facts upon a high shelf where they can’t be reached
without standing on the steps.

So stay seated, both
hands inside the vehicle, a ride dizzy but hopefully quick.

Hold on.

—–

There is no normalcy in any day, in anything Andy does, in anything surrounding Jonah, in anything at all.  Through the inconceivable notion of placing Jonah comes an urgency to place him – a sense of time ticking, of there being only so long we can collectively do this thing, keep going, keep everyone safe, keep holding it together, keep hanging on.

The doctor appointment yesterday was awful.  It didn’t start out that way.  Andy picked me up from work and we collected Jonah from school without incident, but on the ride to Clifton Park we passed the exit where grandma lives and Jonah started to ask for grandma and white soda over and over with increasing urgency.  We told him yes, Jonah; later, boo, and ignored it when he hit the back window with his palm. 

Andy dropped me off first to see if the doc was on schedule – they said he was, so Andy and Jonah followed shortly afterwards, walking in just as the nurse was calling his name.  First he was okay; the nurse put the blood pressure cuff on and Jonah said arm squeezy – he knows the deal with that – then she asked us to get Jonah undressed.  We did, and he paced the room in his pull-up, lifting the blinds, walking back to the corner by the door, walking back to the blinds, saying all done at intervals – but then he slowly started to fall apart. 

By the time Dr. Pascual came in and wanted Jonah to lie down so he could listen to his heart and belly, we had to hold Jonah down on the table and he cried, frightened, ramping up for aggression-time.  Then Andy got Jonah dressed, putting himself between Jonah and me so I wouldn’t get hit by any of Jonah’s swats and kicks. 

I stayed behind to talk to the doc for a few minutes.  There wasn’t much to say; the doc saw an obvious need for placement and told me he thought Jonah would really benefit and be happier with 24-hour care. 

Small consolation.  But the truth is that what used to be small consolation is now something we cling to, and hope for, and want as soon as possible.  Even with the oxymoronic torment it brings us. 

So I walk out to the parking lot and I see the SUV’s back hatch is swung open, and I get in the passenger seat and there’s Andy holding Jonah in the backseat, and Jonah’s undressed from the waist down.  I guess he tried to kick a baby in the waiting room on the way out and then Andy half-carried him to the car, Jonah fighting him all the way, and when they got to the car Jonah took off his shoes and pants and pull-ups off, attacking Andy the whole time.  I saw Andy’s hands were spotted with blood, probably from being bitten and scratched. 

I didn’t ask.

I managed to help Andy get Jonah’s pull-up and sweatpants back on him, then we latched him into his harness and secured it to the seat, retrieved his bag from the top of the car, slammed the hatch, and I moved into the driver’s seat to drive us the hell out of there.

Jonah was quiet on the way back.  Andy and I were quiet too.  I asked him briefly what happened, he told me, then we too fell into silence. 

Silence like a door that closes, latched, leaving us in the dark, unseeing, feeling our way along in the black.

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Snow’s sprinkling fine sugar upon this first full day of spring, but we all know its shaker is almost empty, so what the hell.  You’ve lost, cold and snow.  Spring’ll be here soon, like it or don’t. 

It is also M’s birthday and the 10th anniversary of the day I quit smoking cigarettes. 

Today Andy and I take Jonah to his pediatrician, the one we switched to because his specialty is autism.  I’ve got my spare pair of glasses on in case Jonah  flips out (like he did last week when we took him to the psychiatrist and switched his meds from rispersdal to trileptal in yet another attempt to get the right drug to help him).

Jonah drums in his sleep sometimes. 

And he’s been limping on and off, to add to the myriad of mysteries to solve, and I’m hoping they can figure that out too.  

Onward we push, into spring, into the unknown, into another decade of no cigarettes…

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Last night’s full Supermoon was so pretty;  I love astronomical phenomena – I’ve always wanted to see a full eclipse of the sun, for instance, and I’ve traveled miles into the Adirondacks to see a star-splayed sky unlike any you can see here near Albany.

So I stared at the Supermoon and thought about how it hovers so close this day to our world, to Japan, and Libya, and everywhere on this earth where children, especially, face tragedy and war, or are alone, orphaned by disaster, or so hungry their eyes lose the spirit that lives behind them, or existing in terrible places where they face neglect and abuse and God-knows-what.

And then I thought about Jonah, and our situation, and this blog…how I bemoan my actions and choices, how I dramatically describe despair, how I am so very afraid or angry and frustrated – how I feel envious…resentful…depressed.

How microcosmic my life has become.

And then, looking up at that moon, something opens up inside me and I feel a gratitude pour into me that is genuine, humbling, and strangely unsettling.  The events outside my own tiny world are colossally huge, and the vastness is overwhelming, as inconceivable as the Supermoon, so much more so than my own worries.

I live in a state where free care is provided to my aggressive, innocent, uncomprehending son so that he will have a chance to live better, and happier – with access to a place that will provide 24-hour consistency, routine, ritual, and nurturing to him.  And I complain about this because I hold fear around me like a blanket – because I am selfish and want him close at hand – because I allow myself to entertain the notion that somehow Andy and I didn’t do enough, soon enough, right enough, to prevent this.  Because I am wrapped inside my microcosmic universe.

I feel stupid and self-interested – and soul-tired too.

So this entire rambling post is just to say that I realize I am lucky.  Fortunate, blessed, whatever you want to say.

A lot of it is because Jonah’s father Andy is both devoted and resigned to the way his daily life unfolds – that it’s more difficult than I can imagine, that he is stronger and better and kinder than he knows – that he deserves so much more than this life he is enduring right now.  I see how much he is hurting, how tired he must be.  On my best days I can’t handle Jonah for half the time he can, and that’s with help.

I hope Andy gets the life he deserves, for he is smart and good and self-deprecating.  He is the nicest man I ever met, and probably the nicest man I’ll ever know.

Yes, Jonah is lucky.  And so am I.

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It’s pi day (3/14)

So here are 3.14159265etc. awesome things about Jonah…

1.  He eats salad greens, quite happily, too, thanks to his dad…even if it is as finger-food.

2.  Some days, like today, he has only one or two aggressions at school.

3.  He still offers up these awesomely huge smiles, even on the bad days –

.14159265   He loves to roller skate (and has brand new skates that he got for his birthday from Grandma).

I only saw Jonah for a few minutes today.  I stopped at the house, and Jonah requested “peanut butter roll,” which translates into “car ride to Stewart’s next to the Voorheesville train tracks to buy me a hard roll with peanut butter on it.”

He’s gone from:

  • waiting (relatively) patiently for 20 minutes in the earnest hope that a train might possibly come by, then laughing and clapping at the train’s approach and passage…

to:

  • complaining “all done train” whenever we have the unfortunate timing of arriving at the tracks just as a train is passing (all while remaining single-mindedly fixed on the notion of attaining peanut butter roll).

…but we didn’t make it to peanut butter roll because Jonah hit the window of the car door, so we turned around and went home.  We’re going with the ‘consistency punishment method’.  But are we trying to teach him something he can’t learn, or does it sink into his head?  Based on results, we’re not sure; it takes 4 or 5 trips lately to get to peanut butter roll (or even grandma).

Andy even sits him down and explains the deal.  “If you hit the window, we’re going home,”  he’ll tell him.  “No hitting the window.”  And sometimes Jonah’ll say “no hit window.”  Is this echolalia or does he get it?  If he gets it, does he forget it right away?

Next time we go the child psychiatrist we might ask about base-lining him by stopping the meds altogether for a while.  Jonah doesn’t want to play much anymore and he’s lost some of his personality, and the behaviors aren’t really mitigated enough to justify continuing the meds.  Then, if we have to, we can try a new med…a new behavioral method…a new path.  Something else!

So no peanut butter roll, and I doubt there’s any pi in the house.

Sorry, boo.

P.S.  I never understood pi.  Not even a little bit.

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