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the amazing things

Posted in autism, placement, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , , , , , , , on January 6, 2013| Leave a Comment »

I’ve been kind of sick for too long a while.  I’d rather be sicker and have it over more quickly.  There is simultaneously optimism and fear inside me – and a disheartened kind of grief.  A good, gracious man I know died on New Year’s Eve; he was only 61.  I’m not sure what’s going on inside my head but I need to watch videos like this and seek out information like you get here in order to continue to have faith in humanity. 

I have to remind myself there are so many amazing things. 

I forgot to bring my camera on my trip to see Jonah yesterday, so I’ll have to share older pics.  Jonah was a good boy.  He didn’t want me to sing, though, even though he was in a parroting mood.  Andy had on the radio and Jonah was humming snippets of the top 40 music and saying things to himself… then suddenly he’s quiet, moving his thumb easily and naturally into his mouth as he turns to look out the window.  It was a warm day – maybe even 40.  My mother and I were quiet on the ride home as she tolerated my music:  things like Kula Shaker, Paul Simon, Radiohead, and Death Cab for Cutie, this day.  I won’t subject her to Greenday or the Grateful Dead; I know where to draw the line.   It was a good visit tinged with the usual feeling that comes inside when you are driving farther and farther away from your innocent ten year old son. 

Today I made chicken cacciatore and M and I are watching Dick Proenneke’s Alone in the Wilderness.   It’s such an amazing documentary that tears come to my eyes as I watch it.  This man built a cabin in the middle of Twin Lakes, Alaska (where he was the only human) and lived there for thirty years, 1968-1998, until he was 81 years old.  He carved spoons and bowls out of wood in a matter of hours.  He could chop down 40 trees and shape them into useable logs to build the cabin, all before noon.  Amazing things.  He built carriers for food and moss.  Caught fish and avoided bear.  Somehow didn’t go insane even while so literally alone.

The things he accomplishes – the way he thinks, the way he moves through the world — it’s so mind-blowing sometimes I have no reaction but to laugh out loud in astonishment.

He builds tools, tables, chairs;  intricate, near-perfect hinges; neat, even boards for shelves and working surfaces.  He narrates most of the movie, sets the camera on a tripod and films himself measuring, building, climbing, chopping, carving, cooking, gardening.  Everything handmade.  A plane would come only, I think, twice a year to bring him very basic supplies.  Are there still people like him, people who know civilization but choose to leave it, with talent and skill and that true harmony with nature?  I am in such awe of it.  No wonder I love Laura Ingalls Wilder.

For me these people speak of possibility, and resilience, and determination.  

It’s good for me today.  So here are some random things while I make my exit to watch some more about Mr. Proenneke:

OLYMPUS DIGITAL CAMERA

O

Silly Me

Silly Me

O

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

ScareMeNots recycle!

The Hudson River in March 2002Rhinebeck NY

Baby Jonah...Looking right at me.

Baby Jonah…
Looking right at me.

Gustav Klimt'sThe Kiss

Gustav Klimt’s
The Kiss

O

my child of the water

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not a merry christmas post

Posted in Anderson School, autism, behavior, The Anderson School for Autism, Uncategorized, tagged , , , , , , , on December 25, 2012| 3 Comments »

“oh ho, alas alas” ~ john berryman

my first ever no-capitalization post, i think.  i am playing e.e. cummings for a few paragraphs and oscar is dead.  i write only because i need to release a few things tied up inside me…

andy picked jonah up at anserson this morning and the other children in his house had been picked up the night before (we have yet to even attempt an overnight visit), and the ride up was okay.   quickly things went south, though, once they got to albany, and jonah spent the majority of his time weeping uncontrollably, despite presents from santa and bath and turkey sandwich.  he wanted a car ride to the train (which never came) and at some point during the ride, inexplicably, his face froze and melted into sadness, anguish, pain.  he wept and wept, then threw his coat, shoes, and socks at andy – most of which i was able to deflect.

O

Eventually there was nothing to throw.  So Jonah kicked the back of the seat, hit hard at his window.

Andy pulled over so he could hug Boo, but Boo pleaded mama? so I got out of the car and I opened Jonah’s door and leaned in and hugged him tight.  Then tighter, giving him sensory pressure, loving him loving him loving him, until finally he un-tensed, collapsed into me, and wept harder – crying and sobbing.  We cried together, the back door open on the side of the road.  Then we’d calm him down and we’d get 500 more feet down the road and it would happen again.  No go back to Anderson?  Hot dog?  Bath?  Pa comin’? — confusedly, desperately.

Andy drove, and I cried, and Jonah alternately calmed down (and even giggled once) before again becoming angry and then falling backward into something like despair.

Inside my mother’s house, after the car ride, he punched me hard in the face and and kicked me in the ribs.  He head-butted Andy, trying to bite, enraged and frustrated.  We had to just lie with him on the carpet for a good long while

and whatever it is I’d pay a million dollars to fix it.  He breaks my mother into a thousand pieces, every time.

There is too much to say and who the hell wants to read about this anyway on Christmas Day?

I will post something better, later. Funnier.  I’ll be David Sedaris.  Just not on this particular December 25th.  Lo siento.  And I cannot forget Connecticut; I pick at its horrific entirely like a scab, imagining the families, those familes and their unthinkable Christmas pain.

We sometimes mourn for what we do not or cannot have any longer, or at all — for things and concepts; dreams, wishes, and people – we mourn for what is irrevocably gone.  But also we mourn for what will go on and on and on and on, painfully and unceasingly beyond our capacity to fix.

O

I’m so sorry, Boo.  Mama loves you.

God please help him.

Help all in despair this day.

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dear boo

Posted in autism, behavior, doctor, hospital, iritis, language, placement, The Anderson School for Autism, uveitis, tagged , on November 8, 2012| 3 Comments »

Dear Boo,

Mama is so sorry, sweet angel, but it looks like you are going to need another eye surgery, and soon.  See, the one they would normally do requires the patient to avoid touching the eye for two weeks, and we know you can’t do that, and we can’t explain it to you, so we have to try something else, and these laser eye surgeries are the something else.

This might not even be the last surgery.  The surgeries aren’t helping so far, and what we’re trying to do is make sure you can continue to see.

People with autism are usually visual learners, and you seem to be one as well.  Thinking in Pictures by Temple Grandin explains this somewhat, and if you could read it I would give it to you and see if you agree.  I don’t really even know if you can read.  They talk about the sight words you know, but even illiterate people know what the STOP sign says.  I don’t know if it matters that you can read, even.  Sometimes I wish you understood more and sometimes I am grateful for your ignorance and innocence.

Have the eye appointments and surgeries become part of your normal?  I guess they must be, by now.  You tip your head back for the eye drops like an expert and read the eye chart like a brave little man.  You are as patient and tolerant of the neurotypical people around you as you can be.  I have no idea how difficult it is, to be surrounded by people who do not understand you.

I’m so sorry, sweetheart.  Mama and daddy are doing their best to make sure you are not in pain, that you have eyes that are healthy, a strong little body, and a calm, peaceful, happy mind.  I’m sorry you don’t have many of those things and I’m sorry there isn’t anything I can do but trust and pray and hope.  I can research, and listen to my instincts.  Hold you close for as long as you’ll let me.  Breathe you in.

You amaze me, Jonah Russell.  Daddy and I will do the best we can for you, for as long as we live.

Mama promises.

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for jonah i will

Posted in Anderson School, autism, The Anderson School for Autism, tagged , , , , , on August 29, 2012| 4 Comments »

Unless you just stumbled upon this blog, you know my son Jonah lives and goes to school at the Anderson Center for Autism.  We could no longer keep him home because of his violently aggressive behaviors.  Jonah has come a long way in the year he’s been at Anderson!  So many parents like us depend on this school for their child’s fundamental education.  Anderson is holding a Fundraising Gala on October 6th.  The idea is to raise money for the school.

I am not one to ask for money often, but today I am.  For Jonah I will.

I am so grateful to the Anderson Center…

If you can give any amount, I will appreciate it very, very much. (Choose gala donation when you get to the donate page). Your information will be kept private and your donation will be processed on a secure server, though you will be acknowledged in the Gala Program and of course can use your donation as a charitable contribution on your taxes.

And if there happen to be (or if you know) any owners of restaurants, Bed and Breakfasts, stores, hot air balloons, art centers, museums, bookstores, grocery stores, amusement parks, gyms, hotels, airlines, spas, hair salons, gas stations, toy stores, resort properties, etc. reading this– or if you have a superfluous surplus of iPads, those things/gift certificates/gift cards would be amazing to have for the silent auction.

May your kindnesses come back to you a thousandfold!

I’m starting my blog vacation now…be back in town on the tenth.  I am so excited I am almost shaking just to think about crossing the threshold of Laura Ingalls Wilder’s home, kept just as she left it when she died three days after her 90th birthday, on February 10th, 1957.

(Yes, I know what a geek I am).

Some Jonah pictures and maybe a video until I return:

Isn’t this a great picture of Jonah and Grandma?

A video of Jonah being on-purpose bad and somewhat gross and us not doing much about it.  We choose our battles.

solving complex algebraic equations

disappearing into a dive

Bye, people who use vacation time to go to beaches on oceans and lakes instead of the center-of-the-USA Missouri Ozarks home of a dead children’s book author!  You’re missing out.

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a year ago today

Posted in Anderson School, autism, The Anderson School for Autism, tagged , , , , on August 16, 2012| 4 Comments »

A year ago today, Andy and I dressed Jonah in a green “Hi!  My name is Jonah” shirt, drove him to the Anderson Center for Autism, dropped him off, and left him to live and attend school there.

I have a good memory for dates, so this was an easy one to remember – aside from the fact that it’s the day Elvis died (35 years ago today).  I woke up this morning with a strange feeling of dread, as though I were going to have to go through the whole thing all over again.

And yet something saved me from turning into the weepy self-pitying woman I, left unchecked, have the tendency to be.

That something was a boy.  And a box.

Someone on Facebook commented on the Scare Me Nots page (I am their facebook “mommy”) – and when I saw the name, I was compelled to look at their page.  The page is for a little toddler who enjoyed 3 months of health before seizures led to a discovery that his little brain is essentially degenerating – and there is nothing they can do.  I wrote to the boy’s mom and asked for her address so I could send her the Scare Me Not she liked.

Then, last night, I spent hours filling and decorating the box, all sides of the box, with pictures from books and magazines and calendars in my crafting basement.  I used a whole roll of packing tape and carefully adorned the box as though it were a gift in and of itself.  The process distracted me from thinking about how I haven’t had my Boo with me for a year.

This mama may not have her little boy at all for much longer.  There’s nothing like perspective to keep you from self-absorption.

When I got to work with the box in my passenger seat, I felt an urgency to get the box to her for her boy.  So I left work and stood in line when the post office opened, and I mailed it the fastest way I could.   Now I feel like I love her boy as well as my own.  I pray for him as I pray for Boo.  And after I mailed that box, I was no longer so worried, so pained, so obsessed with thinking, wishing, complaining, crying about my own boy — and I let go of holding myself bow-string tight.

Instead I felt humbled, and no longer alone in my sadness.  Pain is pain.  Loss is loss.  Everyone has to have some.  None escape grief and trouble.  We all have crosses to bear, some of them terrible.  Unimaginable.

Yet there is a hope we all must hold, that things will get better, that the light at the end of the tunnel is not an oncoming train but rather a beacon of sunshine.

That on the other side there is beauty — and others – even strangers – who really do care.

“All that matters is what we do for each other.”
  ~ Lewis Carroll

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video killed the blogger mom star *

Posted in Anderson School, grandma, language, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , on August 2, 2012| 7 Comments »

* I’m not trying to call myself a blog star (did I coin a new phrase there?), but rather to give a small nod to the first video ever played on MTV.  Almost-twelve-year-old me was there to watch it all go down, and damn it was cool.  August 1, 1981 – we just passed MTV’s 31st birthday.  Video changed everything.

It still does.  I don’t know what it is about watching the video of Jonah in the last post, but I watch it & watch it & watch it again.   It’s as if the video allows (forces?) me to step outside myself, seeing Boo through a stranger’s eyes.  I can describe him until I’ve written a doctoral dissertation –but only the video can really show you his abilities, both excellent (swimming & his sense of humor) and not-so-excellent (lack of communication, and inappropriate noise levels).  Watching the video is different than the living of it.  Different scary.  Different real.  Or surreal.

How do I explain what I mean?

He’s ten years old.  He’s my baby.  Too soon to be an adult and, watching that video, I became afraid of all that means and how soon it is coming.  In fact it’s speeding up, as time does when we age somehow, and if I’m not careful I will worry in a million ways which will only waste time.

Operating under the assumption that I’m not involved, would I whip out my camera to film him aggressing and post it here?  I want to say yes – but I don’t know.

Anyhow, I found older snippet-videos, most of him swimming last year.  Here are two:

In this first video we see I am trying to take a photo of Jonah (who very accommodatingly smiled wide for the camera) and then realizing – duh – I have the setting on video.

In this second one you can hear him say “all ny-uh” – which used to be his way to say “all done.”   Now he just says “all done.”  He has come a long way at Anderson.  It happens so quickly, all of this everything.  Sometimes I feel as if I’m in slow motion, watching it speed past me.

For once this writer doesn’t know what to say or how to say it.

(Like that hard as hell Spanish course I’m doing on Rosetta Stone.  They make you say words when you don’t even know what they mean or how to use them.  I say the words over and over and over sometimes before they let me go on.  Never do you know the meaning of a word.  It’s all pictures, and repetition, letting you in on the secret of Spanish 0h so frustratingly slowly. 

Then you have to spell words correctly, accents and all with this keyboard tool they give you.  Then you have to hear the differences between ridiculously similar ways to pronounce two completely different words, like the words for baby and drink.   I have to admit, in English there are single words that mean different things.  Rose.  Lash.  Stream. 

Those are just off the top of my head.  Does Spanish also have this?  Am I even capable of learning it?  I forget all the words.  I don’t understand why it is “Tengo frio” (sorry, I don’t have my accents handy) and yet “Estoy hambre.”  If I’m even remembering that right.  One means I am cold and one means I am hungry, right?  Or no?  When do you use tengo and when do you use estoy?  And why?) 

End of rant about learning Spanish.  But if you know the answers feel free to chime in.  Por favor!

In exactly one month I will no longer be the answer to the universe.  (Unless I die before that, in which case I will always be the answer to the universe).

We’re coming up on the first anniversary of Jonah’s going to Anderson.

I miss him a lot tonight.

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swallowed by a song

Posted in Anderson School, autism, doctor, hospital, The Anderson School for Autism, Uncategorized, tagged , , , , , on June 7, 2012| 5 Comments »

“They say Jonah was swallowed by a whale
But I say there’s no truth to that tale
I know Jonah
Was swallowed by a song…”

~ Jonah by Paul Simon

Jonah has a broken finger incurred sometime during this morning’s tantrum/attack/aggression, on the bus that takes the kids up to the school building.  They took him to the hospital, x-rayed his hand, splinted his finger, brought him back to the house.  Not an enormous deal but one that caused me some concern.

His regular nurse was so kind when she called to tell me.  “Jonah is fine,” they always start out by saying.  Sometimes he isn’t – not really, but at schools like this everything is relative.  And he is fine.  He is safe and he is fixed up and it is over.

But I asked her to please contact Andy first next time.  Andy lives 5 minutes away.  I live an hour and a half a way.  I have a full time job, and I can’t be at my desk crying, like I nearly always end up doing.   I’m a crybaby, they need to understand, “strong mother” or no, and you can’t make me lose it at work because then nobody wins.  I need my job.  Let Andy call me at 5:30 when I get home from work and then tell me what happened, unless it’s an “he’s not okay” emergency.  Andy’s willing to do this and we’re going to try this new “leave mom out of the loop for a few hours” plan.

I’m tired of the merry go round.  I want off.  After a while it makes you sick to your stomach.  Your horse or your ostrich or your donkey goes up and it goes down, over and over, while the merry go round itself circles round and round, all with the bad-stereo strains of carousel music playing too loud and endlessly, no way off, no one to stop it all.

I just don’t have the fortitude.

for·ti·tude

[fawr-ti-tood, -tyood] Show IPA

noun

mental and emotional strength in facing difficulty, adversity, danger, or temptation courageously: Never once did her fortitude waver during that long illness.
They ain’t talking about me, folks.
Ah, but wouldn’t you rather see some new pictures instead?

Our dog Jack has the United States of America on his nose.  Look closely.

Jonah loving Guardian Gus

Beautiful rosebushes

Thus ends a long Thursday.  Across the miles I am holding my son in my arms, so close, smelling his hair, breathing him in, and he is calm, and we have snuggle time, and we are both swallowed by a song…a lullaby…

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why did the venus cross the sun?

Posted in autism, behavior, The Anderson School for Autism, Uncategorized, tagged , on June 5, 2012| 1 Comment »

Did you hear they recently linked autism to obesity during pregnancy?   I was a hundred pounds and 5 foot six when I got pregnant, so I guess I’m blowing that theory.  I love the endless links.  It’s almost like they are required by law to link something to autism at least once a week.  It’ll be interesting to hear how Jonah did today because Venus is crossing the sun and won’t do it again until 2117;  it’s been a weird day for me and a bunch of my co-workers too.

Tomorrow I’ll give you my doctoral dissertation about Venus’ crossing the sun, and how that, too, is now linked to autism.

     

But I don’t mean to make fun of autism research.  I’m afraid we’re in the infancy of figuring it all out, though.

Or maybe tomorrow in the newspaper I’ll read they’ve been testing some new non-drug behavioral therapy on children and guess what? it has led each and every one of them out of anxiety and confusion into a place where they feel more comfortable in our fucked up neurotypical world.  Is that the right thing to hope for?

I just want Boo to be at peace with his environment and the people in it.  That’s about it.  I want him to be happy.  I’m not asking for him to take a pill and turn into a “normal” kid.  I just want his demons exorcised, the violence gone, the aggression vanished.  There really isn’t a way to describe how I feel, except very small and very helpless.  It makes me want to gather up every brain cell I’ve got and go get a Masters degree in Autism Spectrum Disorders or Applied Behavioral Analysis, and take all this shit on my own self.  Yeah.  That’s gonna happen.

Jonah’s been good some days and then suddenly bad, throwing his plate,  screeching, and shouting.  I wish I could see at least some of his day, as if on TV.  I want to know what he does and what he says, what he makes in art class and whether or not he manages the cafeteria.  Does he run ahead of the other kids or stay with the pack?  Does he laugh hysterically while throwing puzzle pieces all over the room?  Do they hug him?  Does he run happily to people and want to snuggle?  Does he hurt people, and how bad is it when he does?  Does he get lonely?  Does he think about his mama the way I think about him?

I don’t want him to miss me.

And I don’t like this “transit of Venus” day.  It feels weird.  I’m even writing weird.

  Jonah and his daddy

Jonah loves his daddy so much.  I never doubted Andy would be a uniquely amazing dad to some lucky kid.

Jonah’s that lucky kid.

Now I’m going all stream-of-consciousness and I don’t want to… sorry for the drift-off.

“I know of nobody who is purely autistic or purely neurotypical. Even God had some autistic moments, which is why the planets all spin.”   ~ Jerry Newport

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a fine line

Posted in Anderson School, autism, behavior, grandma, singing, swimming, The Anderson School for Autism, trains, Uncategorized, tagged , on May 20, 2012| 4 Comments »

There is a fine line between telling my story “sans sugar” and telling too much, or, worse, lacing it with saccharine.  The truth is, the narrator is still not exactly sure where she belongs in this world, if she belongs in it at all – but also that this doesn’t matter.  It’s all about Jonah.

For an only child like me it’s a tough pill to swallow sometimes.  It isn’t at all about me.  And yet, can I be relieved of my role in all of this?  Of course not.  Jonah needs his mama.

Still I sometimes think:  I can’t live this life anymore

And:   What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING.  I know I have mentioned this bridge before.  I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye

And:  I wonder if other people have places in their minds, like I do.   My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle.  It is a choice you may never have to make but one that’s comfortingly there nonetheless

I still, though, think:  I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing.  I must ensure everything.  Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen

And I berate myself:  You ain’t going nowhere, fool

And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak.  But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.

It was a sunny day, almost too hot.  A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.

Andy was kind enough to drive Jonah up to visit us at my mother’s house.

my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.

At home way at the top, my climber-boo

hey mama!!! hey mama!!!

Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio.   We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.

This time, though, he got scared of the train after a few seconds.

This was the last of the pictures for the day.

Out of nowhere he grabbed for my hair.  I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal.  Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset.  Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower.  His beloved train reminded him of how much he misses home?  No.  Don’t invent things inside Jonah’s head, I tell myself.  You’ve got enough troubles inside your own. 

Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so.  When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die.  I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.

Tomorrow I have to go back to producing numbers; here I can produce words.  It’s a fine line, my tightrope.  Sundays are difficult.  And I only took 3rd place in a “query letter” contest I was hoping to win.   And I’m not schooled in query letters.  Looks like I have some work to do.  First place was the opportunity and $500 to self-publish.  

I don’t really want to self-publish anyway.  Isn’t that, after all, what I’m already doing?

Anyway.  Jonah has his daddy close-by.  Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.

“He was fine,” Andy told me on the phone. “He had a fun day.”

For me, for now, it is enough.  As usual it is still only early evening and I am bone tired.  I imagine Jonah settling in to sleep.  I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams.  It is good.

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jawbone

Posted in Anderson School, autism, behavior, placement, The Anderson School for Autism, tagged , on April 22, 2012| 2 Comments »

When the principal himself at the residential school for autism
where you bathe live learn eat play please God are loved
calls my cell, I happen to be away from it. He speaks in an even tone.
I am upstairs pouring coffee comfort ritual routine into a blue mug.

A pretty co-worker comes into the kitchen, skirts me silently,
retrieves something from the fridge, and walks away. Invisibility.

My mother has just dropped me off in beginning-of-the-rain grey
after together we’d ushered my suffering sweet Sugar into Sleep.

I return to my cubicle, place the coffee down I am holding my breath
and on the cell phone a red light blinking blinking his area code

I dial into the voice mail it takes me two times, I hear Jonah is okay,
I hear significant incident hear how they tried to redirect him, keep him walking.
He was violently aggressive he needed a two-person takedown;
he likely hurt someone. More than one someone. Surfacing to bite.

Born of me who hated hitting, shrank from violence, submitted every time,
weak and yet I grew a wild white whale inside my womb, Ahab be warned.

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