Archive for October, 2012

“Can we miss
the storm that sucked the
in?”  ~ Guster

So here comes the Frankenstorm, and it’s become a mini-series on television, just as every similar event becomes a Truman-Show-esque production of graphics and sound — loud bass drums pronouncing doom. Bum bum BUM!  Frankenstorm 2012.  We shall see.  I went to the store, yes, and got extra stuff.  Better safe than sorry and all that.

L and M brought Jonah up from Anderson on Friday for his retina doctor appointment.  We had the 9am appointment and still had to wait an hour.  It’s hard enough for your average kid to wait an hour, let alone a Jonah-kid.  From now on we’re just going to have to get the first appointment of the day.

I gave him PEZ, green tea,  and a stress-ball to keep him occupied.

His eye looked good, said the doc.  The pressure’s gone down and his right eye looks normal again.  And he was a very brave boy.  He even waited pretty patiently in a special large room they put us in.  The room was filled with expensive looking eye-equipment and I’m thinking are they insane?  But there were three of us there to keep him busy.  I even got him to sing “I’ve Been Working on the Railroad” and “Keep it Together” to calm him.  More often than not Jonah will hush me when I start to sing, but this time he was into it.  I love when we sing together –I will sing a line or two and then point to him, and he’ll pick it up in perfect rhythm and tune, and then I’ll take over, then we’ll sing together, etc.   It’s pretty cool.

Yesterday our visit was good – Rhinebeck was having one of its ubiquitous, cool festivals – this one for Halloween, and the streets were lined with costumed adults, kids, and dogs going business to business to get treats.  If you wonder why we didn’t take Jonah, you haven’t been reading this blog for long.  Besides, the kids at Jonah’s school have their own Halloween trick or treating thing. (Going for tongue-in-cheek, I bought Jonah a prisoner costume).

During the visit we stuck to the routine – lunch, bath, jumping on the bed, rapid-fire requests for various items of food and drink.  He got his trip to the grocery store, and was a good boy amidst the Frankenshoppers.

He was particularly lovey, especially with grandma…

And all in all it was a beautiful day with Boo.  I cried on the way down, though, idiotically and forcibly bringing forth memories of horrible times.  I have one particular memory, after Jonah was diagnosed as special needs but before the autism diagnosis…

I’d signed him up for a music-and-movement class for kids about his age (18 months or so).

The instructor has the parents all sit in a circle with our kids on our laps.  Strike one.  Jonah wants to wander.  Finally I get him semi-settled near my lap and the instructor tells all the kids to reach into the basket in the middle of the circle and take two maracas. 

Strike two Jonah has no idea what she’s just said or is ignoring her completely.  So, tears behind my eyes now with confusion and embarrassment, I quickly grab two maracas and hand one to Jonah.  Next we’re instructed to shake our maracas along to a song she’s going to play on the guitar.

Strike three.  Jonah breaks away from me and runs to one edge of the far side of the room, where the wall-length radiator begins.  First he gets a good, quick visual on the scene and then he places his maraca on the bars of the radiator and runs up and down the room – Bat-a-bat-a-bat-a-bat-a-bat-a-bat-a-bat.  You get the idea.  By the time it was over I was practically sobbing. Oh my God what is the matter with my boy?  I’d never seen him in the context of a bunch of other kids his age, all doing the same thing — he being the only one who couldn’t, or wouldn’t.

I need to flush that memory down the garbage chute.

I was fine by the time we got home, and psyched, too, because friend H and I were going to see the Classical Mystery Tour which, to my understanding, was the Albany Symphony Orchestra playing the songs of the Beatles.  It was a birthday present from my dad, who knows I’ve loved the Beatles since I was 13 or 14. (I’d turn down the volume on my Atari 2600 Pitfall game and listen to the Beatles’ 20 Greatest Hits instead).  We had good seats, about half way back.

Last night was almost a full moon, and H and I saw evidence everywhere we looked.  What a strange, amazing night.  I ran into my dentist, of all people, who thought he recognized me as a dental-supplies vendor.  I said, “no, man, you’re my dentist.”  (I don’t think I actually said man).

Then, this guy who tried to direct us to the bathroom had such a heavy accent that we had no idea what he said.  We could only thank him and run far away to laugh until we cried.  We had great seats and noticed a mostly-older audience, though there were plenty of Gen Xers and younger, even.  H went for a drink and even brought me back a t-shirt.

I didn’t realize there was a Beatles look-and-sound alike band playing with the orchestra.  Even after I saw the main instruments and grand piano on the stage, I didn’t realize what we were in for…and then, still before the concert started, things got truly weird.  A man sat down next to me.  He was alone, and I quickly realized he was on the high end of the autism spectrum.  “Don’t you love the Beatles?” he asked happily, and I enthusiastically answered “Yes!”  He was practically bouncing in his seat.

He told me his name, J, and his exact birth date:  November 30th, 1970.  Throughout the concert he would lean in toward me and sing in this beautiful voice.  I sang harmony to his melody and melody to his harmony. When I complimented him on his voice, he told me he was a choir member of St. T’s in a nearby town.  I tried not to stare at him.  It was difficult for me not to love him.

I was amazed and not amazed.  How can I explain?  This is the third concert I’ve been to in two years or so where I was seated next to a disabled person – all were adults, and two of them had autism.  There is no way this is a coincidence.  I have been struggling with finding faith in the midst of all this, and I feel these incidents are nudges from divinity.  I’m here.  I won’t leave you.  Trust.  Don’t worry.  I love you.

All these things and more I hear.  Oh, and I want to share this video, partially narrated by my favorite Father Noone, about the kids in Haiti I’m trying to help.  I realize there is a Frankenstorm coming and perhaps some people will need much more, but even one or two or five dollars will help a cause I believe in strongly.  You can support both.  The tiniest amount, when we all chip in, becomes a miracle.

Who knows why I get all up in arms about one thing and not another?  I think I am behind this because I love Father Noone, and I met Pierre, and now I see, in a world where it evidently requires a billion dollars to run an election campaign, that it is possible to raise this comparatively paltry amount of money so that these kids can go to high school and manage their own country effectively.  Education is everything.

“These Frankendays are yours and mine, Fran-ken-days.”

Be careful, everyone.

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Yesterday was Harvest Fest at Jonah’s school.

I did something very similar to my dorm room door, junior in college – only we glued real leaves to the wall…

We visited his classroom and spoke to his teacher, who gave us a folder full of Jonah’s work sheets and art, then told us Jonah has good days and bad days, which is teacher-euphemism-talk for he’s really difficult, randomly, and it’s frustrating. He is one of the most verbal kids in the class, so they don’t use PECS with him anymore.  I guess Jonah has a vocabulary of sight words and he really loves occupational therapy.  His teacher is young, pretty, and interested, with a sharp mind for noticing important things and a kind heart to care about the children.

There are teacher’s aides as well in the class, and occupational/behavioral therapists, and art/music teachers, and they all work together to educate these mysterious children like my Boo.  Amazing.

What a beautiful day, too, sunny and warm and autumn-pretty – after visiting the school, we walked to Jonah’s house and then to the recreation center, where they had bouncy bounces set up, grills cooking up yummy food, and activities for the kids.  We waded through the groups of kids and teachers until we found Boo.

They’d actually managed to get him to wear this headband with two curled black pipe cleaners and red leaves on the end of each one.  He used to hate stuff on his head — hats, hoods, Halloween costume accessories.  When or why or how this changed, I have no idea.  In some ways Jonah is very malleable; he morphs almost magically into a different kid, one little corner of his brain making seemingly arbitrary decisions in matters of head coverings and food preferences, who he requests to be with him in the backseat, what he wants to drink:  appoo ci-der?  milk?  cranbewwy soda?

When we caught sight of him, he was standing next to one of the picnic tables and seemed to be doing okay, but as soon as he saw us, he wanted out.  And so he got a bear hug from Pa (my dad) and then my mom and Andy and I brought him to Andy’s apartment.

Jonah’s newly renovated house – Jonah’s window overlooks the playground behind it, and the pool behind that.

Jonah leads the way to the car.

Jonah being silly as his dad helps him with the car harness

When we’d completed our usual tour of bath, lunch, and car ride, Jonah requested the “grow-shee-store?” At the self-checkout lane Jonah started screaming in what I can only describe as “obnoxious joy.”  I told Andy to go ahead and take him out while I weathered the stares (usually Andy’s privilege) and paid for the food.

And after we’d been back at the apartment for a while, my mom and I left.  My car drove us home okay, but when I tried to run to the grocery store later in the day, the steering wheel was shaking and the car pulled heavily to the right.  I guess tomorrow I’ll have to drive it (gingerly) to the shop by my work and leave them a note with the keys.  Sigh.

I was just thinking:  It has been a long time since I cried over leaving Jonah behind each week.  I don’t know what that means, if it means anything at all.

I will also tell you this little not-about-Jonah story:

With my favorite pastor ever (the recently retired Father Noone) I’m joining a committee to support a school being built in Fontaine, Haiti.  Father went to Haiti and helped cut the ribbon on the opening of the first three grades.  The money needed to build the school (and, before that, a well) was in large part funded by special collections at the church from which Father Noone retired.  And now, that same church has explained to Father that, due to financial challenges, they will be unable to continue to support the Haiti project except for a second collection twice a year (or something equally lame).

Disappointment at this decision aside, I am helping Father Noone raise the money needed to keep the 105 students there for another year.  It’s just $300 per child.  That’s $25 a month for a year.  Or, as the commercials like say, “for just pennies a day” — but it really is true.  Hell, you could spend $300 just buying school clothes and supplies here in the states.

These are children who would otherwise have to walk 4 miles a day round-trip to school in another town – in a country whose villages have no electricity nearly three years after the 2010 earthquake.  Unimaginable.  Try to picture that happening here, how enraged we would all be.  Hell, I remember an ice storm some years ago and being frustrated at its four day interruption of my normalcy.

Anyway, if you can help (in any amount), please click on the link and donate from there.  If not, I’ll never know.  I wouldn’t judge even if I did.  Every cause wants money.  I just want to help Father and this school he believes in as much as I can.  This quote by a wonderful author (who had to write under a male pen name to get published) describes Father Noone perfectly —

“In spite of his mildness and timidity in reproving, every one about him knew that on the exceptional occasions when he chose, he was absolute. He never, indeed, chose to be absolute except on someone else’s behalf.”
George Eliot, Middlemarch: A Study of Provincial Life

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the forgetting

Our visit with Jonah on Saturday was fine, for the most part.

Jonah, trying to blow up both red balloon and orange balloon

getting ready for bath

I took a little video too and caught a brief moment of a ninja-like, out-of-nowhere attempted aggression at Andy.  It happened in the car.  Jonah was sitting behind me and Andy was driving. In this video you can get a tiny taste of how lightning fast Jonah can move.

This time, thank God, he quickly settled back into Dr. Jonah from Mr. Hyde – my mom distracted him.  And Andy is responsible for the music in the background.  My mom was afraid Jonah would choke on a balloon.  Jonah demanded cranberry soda.  I just filmed.

Sometimes things start to feel surreal.

The thing that might be strangest of all is the forgetting.  The forgetting what it was like to parent a child.  I’m beginning to only fuzzily remember what it was like to get him dressed and ready, to put him on the bus, to tuck him in at night.  To change him and play with him.  Then, further back:  watching him play so joyfully in the ocean.  And still further back:  nursing him, our eyes meeting, loving mama and her baby boy.

There is a lot of freedom now.  There is deliverance.  It feels really good.  But I am also in a purgatory of sorts.  I am Jonah’s mother and will always be his mother.  But I am not his caregiver and I can’t protect him, and I think I will always hate that part.  People usually have other children at home.  Jonah’s my only boo.  Well, I certainly was never going to be the great earth mother, knitting blankets and baking pies – spouting wisdom, president of the PT fucking A.

You gotta roll with the punches.  And we really are all in the same leaky boat.

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kiss eye

Thank you all for lifting me up with love and light and prayer.  I know I am biased but my boo really is so brave and amazing.  Jonah was great on Monday for his eye operation, even though we all had to be there at 6am, and I was very proud of him (after I stopped being nervous – when it was all over).

the way he sits and holds his body and arms/hands is very much like his mama

I gowned up to walk him in the OR and be with him while they gave him his mask for the anaesthesia.  The nurse was kind and treated me with kid gloves.  “You may see his eyes roll up in his head,” she gently warned.  I remembered that horrible first operation, how I sobbed and begged the people in the room to take care of my boy.

“This is his third eye operation,” I answered, “so I’m kind of used to it now – but thank you.”  How kind they were.  As soon as his eyes closed and he relaxed back onto the operating table, I kissed Boo and left the room.

While I was sitting with my mom in the waiting room, the reception desk phone rang and they called my name.  My mother and I looked at each other, trading fearful glances.  It hasn’t been long enough.  And then to make it worse, they tell me it’s Dr. S (the surgeon) on the phone.  But only to tell me the surgery is over, that Jonah did fine, that he is in recovery.

Soon afterward we were at his side as he groggily asked for ice cream.  They did let him have red popsicles, and he ate three.  His left eye was weirdly wide-opened and dilated, but not oozy or yucky and he kept blinking it shut hard.  It was as if it wasn’t quite painful or itchy (and of course I don’t know) but rather sensory-deprived.  He wanted pressure on the eye.  “Kiss eye,” he begged me over and over.  I told him to close his eye and I kissed the eyelid.  He smiled and giggled; grabbed my hand to pull me closer. “Kiss eye,” he said again.  I must have kissed his eye a dozen times.

My brave, wonderful boy.  They drove him up again today for a follow-up visit with the doc/surgeon, and this time my dad came with us.  Jonah was amazing again.  He read the eye chart and held the little black instrument to each eye (and yes, he tried to cheat again), he put his little chin into that scary eye machine, he tipped his head back for the eye drops, and he was calm through examinations with scary looking instruments.  To be honest, he is better at the eye doctor than I am.  I hate having drops put in my eye, and when they don’t explain to me what’s happening and what exactly they are going to do to me, I get physically sick.

Before both visits Jonah paced small circles and asked in the van? (meaning can we please get the hell out of here now?)  Today I used new Strawberry Fields tic-tacs and pomegranate seltzer (which he dubbed, of course, white soda) to treat him.

He immediately identified the tic tacs as candy and started asking for them as such.  I’d give him one or two between procedures, instructing him to chew.  He was so good and so happy.  I know this sounds weird but it really made my day.

The day started off shitty, too.  It is the 10th anniversary of my best friend Gina’s suicide.  Now she has been gone longer than I knew her.  This morning was awful, with me walking around weeping and poisoned by putting on grief, dressing myself in it as a burden in martyrdom…but M, Andy, & my friends/readers loved that nonsense out of me.  Thank you.  And Gina, watching over my boo, guardian angel style.  Thank you, Brother Peen.  I love you.

It turned out to be kind of an amazing day.

Jonah and “Pa” (my father)

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Boo was so very sweet and funny today.  His only real transgressions were screeching in my face and trying to cop a feel.  There is a code language he sometimes half-sings to himself as he moves in for the squeeze, some syllabic elven tongue.   Other times it’s just “boobie.”  You’d think I nursed the kid until he was 6. It’s hard to stress about having to remind him, even over and over, hands to yourself, when he could instead be trying to pull my hair out or smearing shit on my mom in the backseat.   You pick your battles.

I brought him new soft rugs, a cuddle animal-pillow, a sensory ball, and some playdoh and a beanbag toss game for his peeps.  The kids are back in the original house, which is now big and bright and new.  Jonah has his own room (not out of some kind of preferential treatment or luck; he’d attack a room-mate) overlooking the playground and the pool.  At the playground, any playground, Jonah must have the first swing.  Sometimes it is the first swing on the left and sometimes it is the first swing on the right, but he has to have that first swing.  We have been exceedingly lucky in finding parks with empty swings, or with kids who see him coming and get up & away before his arrival.

What a great visit today.  Boo was happy, laughing and going through his litany of requests – things he knows by now he’s bound to get but likes the sounds lilting off his tongue anyway:  celwee?  blue cheese? riv-ah?  bath?

I will see him again soon, on Monday morning at 6am when he is driven up for his laser eye surgery.  It does not, the surgeon tells me, require “opening his eye,” which I guess is a good thing.  Still and all they are going to put him under and I hate that part, gowning up and keeping him calm while they put the mask over his face.  Not that I’d ever not do it.

This will be the third eye surgery.  There’s something creepy about watching your child go the kind of limp that isn’t sleep.  Of course I am grateful for this surgeon and his skill, for all the people working together to help Jonah.  I trust he will be fine.  I just don’t want him to have to go through it.

…playing it cool – feeling the breeze, ducking & rocking to the music he’s requested, playing with grandma, who’s just a little reticent (can’t blame her), then feeling the breeze and playing it cool once again.

I hope tomorrow stretches out long and lazy.  I need one long and lazy day.

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I should call Jonah’s behavioral therapist and go over some plan for what to do about all his aggression lately…

I thought it just yesterday at work when glancing at a picture of my smiling two-year-old boo made me remember what it was like when I had a child who had only autism, hold the violence.

But she called me first.  When my cell phone rang last night around 7pm I knew it was Jonah’s school from the area code.  I heard her voice, softly accented and smart, kind and comforting.  I like her very much; I think she truly cares about the kids and works hard.

She told me she wanted to talk about Jonah’s behaviors and I said yes, thank you but very little else as I broke down suddenly and quickly, and silently thank God, everything in me held tight, squatting crouched at the top of the basement steps.  Tears came in quiet, steady little streams down my face as she spoke, making two distinct darkened wet spots on the red carpeted landing…I stared at them, teeth clenched…holding my breath…my silence broken only by the occasional word of affirmation.  Right.  That sounds good.  Thank you.

“Jonah’s been here more than a year now and he is so much better at working with others and in groups than when he first came,” she started.  I don’t have to be a psych major to know this tactic:  present a positive first, then a negative, then another positive.  It’s a good plan but she knows I know what’s coming.

I’m unsure what snapped something inside me and made me cry that way, but something did, and when she talked about how Jonah’s behaviors have continued, how some have gotten worse or more intense, I wanted to scream.  They think perhaps it is the medicine affecting him a bit, and she thinks also he is so smart, my Boo, that he seeks attention to the point of aggressing or poop-smearing or whatever just to see what happens – to watch who does what – to be the center of attention.

I think she’s right.  He’s an only child and was very used to being so.  Maybe he’s mad about sharing so much with so many other kids.  Not material things, not tangible things, maybe…he wants games and fun and snuggles and chases and it’s all got to be about him…maybe.

We don’t know they’re not sure …she is going to try a positive reinforcer squeeze toy or something he can hold tight and squish – a stress ball or stuffed animal or something – a comfort object, as they would say in The Giver.  I wonder too if a weighted vest would help.  Sometimes I feel like I want to crawl out of my skin, abandon body altogether, this cage of bones, and fly away.  Maybe Jonah feels it too (although he probably wants to grow gills and swim away).

I want to help him.  I thought he would get better there.  I didn’t realize the placement was necessary but also, quite likely, permanent.  The only way I could do it at the time was to leave that part out and not think about whether or not it was a place where he can eventually come back home.  All I  knew was I was losing him and I needed quite desperately to lose him and it all felt like crawling through fire.

It feels like crawling through fire to consider him being away from me like this indefinitely, aggressing, battling blindness and arthritis and whatever the fuck else we don’t even know about.

It’s all so different from anything I imagined, this path.  God hold me steady on it.

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Violet Beauregarde: What is this, a freak out?

~ Willie Wonka and the Chocolate Factory (Film, 1971)

Today is what I call Willie Wonka Day.  In the original film Willie Wonka and the Chocolate Factory, on each of the five golden tickets is the instruction to arrive at the wondrous chocolate factory on October first.  And hence today I dream of fizzy lifting drinks and meal-in-a-gumpiece.

Really the chocolate factory is an apt, if gross, metaphor for what’s been going on with Jonah lately.  When Andy picked him up on Sunday,  Jonah almost immediately became very angry.  Because he was strapped in his special harness seat, he probably couldn’t reach Andy to kick or hit, so he went into a rage.  And left with no effective offense after having been so pissed off at some unperceived insult, he “went to the chocolate factory,” shitting on purpose and smearing it on himself and Andy’s car.  There wasn’t much option but to U-Turn and bring Jonah back, so there went the Sunday visit.  And hours to clean up poop for Andy, the stink still likely there to remind him of the fun.  I guess Jonah actually had a pretty decent day at his house, once they cleaned him up.  I didn’t even hear of it until Andy’s daily evening call to me.

Andy, on the other hand…who knows?  When he is left alone with the aftermath of one of Jonah’s episodes/managements/flip-outs/whatever you want to call them…when he is all by himself in his Rhinebeck apartment quiet, what kind of pain is that?  I don’t know anymore and God help me I can’t know anymore.  I just can’t.

All last week Andy called to tell me tales of Jonah smearing his shit, hitting people, trying to bite, pulling at hair.  Why now, boo?  What is it?  WHAT IS IT?

They’ve got him on ear drops right now for an infection but this started before that.  Then again when you live this life there really is no real order to things.   Things happen for no reason, behavioral charts arrowing up and down with little correspondence to anything at all.

I want to also say I’m not a blogger who comments on comments.  Or very rarely I do.  I don’t know why I don’t.  I just don’t want to respond to your responses….I like to let it be. *  Please don’t mind that I don’t answer.  I like to listen to you, not yak back.  I love all the peeps who come here to read along watch listen care and help me feel like I’m not alone and you’re not alone.  Because we’re not.

thumb-suckers unite

We’re not alone in the hurt and we’re not alone in the hope.

* that’s for you, kp

meine herrschaften, schenken sie mir ihre aufmerksamkeit

(someone took it upon themselves to not only translate for you, dear reader, but also to disseminate the scene)

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