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broken fish

Posted in Anderson School, autism, swimming, Uncategorized, tagged , , , , , , , , , on July 21, 2012| 4 Comments »

Something woke me up early Friday morning.   I don’t know why, but I sat at my computer at 6am and read the news on Yahoo.  One person, standing in the front of a movie theater and opening fire.  I actually got chills.  It struck me harder than any other school shooting or killing rampage of late (and there have been plenty to choose from, no shortage there).  A brilliant man.  A brilliant, likely schizophrenic man who decided to do this unimaginable, horrible thing.

As I read the news I realized I’d been holding my breath and I thought Mark and I were just in a theater in Denver to see Guster with the orchestra and when I let that breath out I wept like my heart was broken.  I don’t want to live in a world where things like this happen.  I want off this planet.

But when I got to work, P put me straight with the perspective I needed, God bless her.

“How many people gave money to the bullied bus lady you told me about?”  she asked me.  I understood what she meant.  The good outweighs the bad – and by a lot.  It does it does it does.  She kept my mind from spinning off into a dark place.

See how much kindness phoenixed from the ashes of the bullying.  See how much good there is.  See that.

It has been a better day today, though I have to consciously embrace the belief that the Universe knows what It’s doing and I have to hang around and do what good I can for as long as I can keep it together, for my son, for his school, for kids with autism, for lots of reasons.

Jonah was a joy today!  It was a lovely day of sunshine and everyone had fun.  Of course, as soon as lunch and bath were done, Jonah wanted to go to the river.  On the way he pulled apart the sensory toy I’d just given him…one of those rubbery, squishy, nubby things.  This one was a caterpillar, but Jonah called it octopus.  He named the colors of each segment correctly, then yanked the pieces apart, turned them inside out, and tossed them around the car gleefully.

Down at the dock by the river, there was a washed-up, rather large dead fish, partially eaten away.  Jonah wanted to investigate and we quickly ushered him away from it.

You can see the big dead thing in the lower right hand corner of this picture.  Just after I snapped this, he pointed to it and announced, “broken fish.”

Yeah, you could say that. 

I love my Boo’s nomenclature.

He wanted to sunbathe on the dock ramp.

See how his feet are all turned in?  That’s his mama all the way.

YAY!  Water boy swims again.

Tonight my dear friend R is coming from Japan; I’ll pick him up in a few hours  at the train station when he gets in.  I’m fixing up a room for him, and he bought a guitar to use and have here in the US (he’ll be here for a month) before he goes back to Japan, where he teaches English.  It was delivered yesterday, and I can’t wait until he feels rested enough to play some.  I always beg him to play New Speedway Boogie, and though I have it on tape, nothing beats a live performance.

“One way or another, this darkness got to give…”

~ New Speedway Boogie;  The Grateful Dead

P.S.  I am on Rosetta Stone learning my Spanish for at least 1/2-1 hour a day now.  It’s really hard; they push you right along.  I keep repeating lessons.  I’m determined though, now.

Hablan a español o morir en el intento.  (Yes, I had to look that up.  I’m not that far along yet.)

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Pa’s fiddle, my DNA profile, & pics of Boo

Posted in autism, behavior, doctor, swimming, Uncategorized, tagged , , , , , , , on July 15, 2012| 3 Comments »

Sometimes if I leave too much time between entries, everything happens at once, and then I’m facing the task of the telling of it all.  How about a Reader’s Digest version, at least for now?  I’m so tired; I think I’m getting sick.

  • I got my genome results and now have all this information I can barely understand.  I think I’ll  contact a genetic counselor and see if s/he will go over it all with me.  I am mostly Northern European and I have genetic similarities with the following famous people:

    Famous People

    • C3 Genghis Khan
    • B2a1 Chris Rock
    • E Al Roker
    • E1b1a8a* Desmond Tutu
    • E1b1b1c1* Napoleon Bonaparte
    • G2a3b1a King Louis XVI
    • I1 Jimmy Buffett, Leo Tolstoy, Warren Buffett
    • I1a Alexander Hamilton
    • J Matt Lauer
    • J2a1b Dr. Oz, Mike Nichols
    • O1a1 Yo-Yo Ma
    • R1a Anderson Cooper
    • R1b Charlie Rose, Emperor Nicholas II of Russia, John Adams, John Quincy Adams
    • R1b1 Franklin Pierce, James Buchanan
    • R1b1b2a1a Malcolm Gladwell
    • R1b1b2a1a2d Mario Batali
    • R1b1b2a1a2f Stephen Colbert
    • R1b1b2a1a2f2 Henry Louis Gates, Jr.
    • R1b1c William McKinley, Woodrow Wilson, Zachary Taylor
    • T Thomas Jefferson

    Don’t ask me what the letters in front of the names mean, because I have no clue.  I am such a Heinz 57 that I ‘m genetically similar (in order of closeness) to the:  French, German, Norwegian, Irish, Austrian, English, Australian, Russian, Ukranian, Polish, Italian, Sardinian (an Italian island), North Italian, Tuscan, Basque, Curripaco, Puinave, Palestinian, Bedouin, Druze, Mayan, Pima, Surui, Karitiana, Mozabite, Byaka Pygmy, Mbuti Pygmy, Mandenkalu, Yoruban, and, last but not least, the San –  one of several names used for southern African people who speak “click” languages and whose traditional means of subsistence is hunting and gathering. (yes)   There is information about genetic predisposition to disease and carrier status, but not much that helps Jonah.  There’s no autism gene marker, and I am not a carrier for arthritis or any eye problems.  I actually have a decreased risk of just about everything.   There is a “relative finder” part of the site and I am already hearing from people within the site who think they might be my 3rd or 4th cousins, based on lengths of pieces on DNA strands.  Or something.  I need to take their “Genetetics 101” course.  Lots more to this story but I promised the Reader’s Digest version so there you go….at least for now.

  • I have decided I am going to see Pa’s fiddle and soon, damnit, come hell or high water.  I turn my back on the beach this year and am flying with M to Springfield, Missouri, where we will stay for 4 nights.  The first full day there is when I want to drive to Mansfield and go to the Laura Ingalls Wilder House and Museum.

* It will be my birthday! *

To end, as usual, I will post Saturday-Jonah pictures.  He went to the pediatric rheumatologist on Friday and was more than a little squirrely on Saturday.  But we had plenty of water fun!

Boo in the backseat, sucking his thumb, sittin’ all sideways, listening to old school rap with his dad. Punk Ass.

I tried…

…and tried…

…to get a cool picture of him jumping in, but (A) I’m not a photographer and (B) my camera is your average digital – always seems to take the picture a half a moment after you want it to.

…and finally got him mid-jump!

My happy water-boy-boo

Jonah says “need help?” and his dad lifts him out of the water.

He’d try to make it to the other side of the Hudson if we let him!

Bedtime for me.  It’s like 8pm.  LAME.

My very DNA is achy.  😉

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i should say

Posted in swimming, Uncategorized, tagged , , , , , , , on July 8, 2012| 5 Comments »

I love that phrase:  “I should say.”   I hear it in a stuffy, 18th century, crisp British accent, complete with Mr. Carlyle pulling a kerchief from the lace wristlet of his velvet coat mid-quote.   Do you know who Thomas Carlyle is?  It’s okay if you don’t.  He’s but a click away.

The weird thing about me coming across this quote is Mr. Thomas Carlyle wrote The French Revolution:  A History, which was the favourite book of protagonist Sara Crewe in Frances Hodgson Burnett’s children’s book A Little Princess which is my favourite book.  So that makes me want to read this enormous 3-volume account of the French Revolution (while remaining largely ignorant of our own right here in the U.S.)  I feel the need to learn more history.  All kinds of history.

My father and I went on a ride to Massachusetts today and I “interviewed” him from a book I’d bought, Conversations with my Father, which asked questions and left blanks so you could create your own memory book.  What was your first memory?  What were your grandparents like?  Did you have a nickname when you were young?

So I listened to my father’s the stories and wrote as fast as I could, and it was a beautiful day; we drove to both Magic Wings and Mt. Greylock, he telling me about his parents, grandparents, uncles, his brother — so many stories and memories.  I could almost see him disappear into the memories…as ballboy for his Uncle B’s softball team, full of adolescent pride to be part of the game.   His mind re-visiting the comfort of living above his grandparents, and having them nearby to visit.  He told me how his grandmother used to put an egg in her hamburger meat before cooking it, to make the burger extra-moist.  How he still remembers how delicious it was; how her apple pie beat all.  And how, when he was a very little boy, his pretty, sturdy, red-headed mother sang the Irish Lullaby to him at night.

It’s obvious he is someone who learned honor and respect at a young age.   Maybe even someone who didn’t need to learn it, because it was part of his personality already and then reinforced by necessity.  Who knows what makes us what we are?  It’s all these stories, all these memories, all these little details.   We came nowhere near finishing the book, but it was a good start.

Magic Wings:  where butterflies abound year-round

And

Dad & me up on Mt. Greylock.  Gorgeous view!

I guess I’m going backwards in the telling of things this weekend…

On Saturday it was the usual visit to see Boo.  It was so usual, it was almost an amalgam of all the visits we ever have.  He was good about half the time but definitely what Andy and I have come to call squirrely and he did, at one point, pull my hair in a double-fisted hard yank, but I know what to do — you grab the child’s wrists and push their hands into your head.  If you pull away it will hurt.  Then he mangled my spare glasses (thank God and little baby Jason I remembered to bring the spare pair).  But other than that, he was mostly just wild to swim.  Take a bath.  Go to the swim-pond.  Go to the river.  There were many kisses and smiles, and all was certainly not ruined.  So, a pictorial for you…

swimmin?

he was meditative for a while

i like this picture

It has, I should say, been an eventful weekend.  Now I’m getting a wicked headache and may go to bed even though it’s only 8:13pm.  ‘Night.

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the bottom of all this

Posted in Uncategorized, tagged , , , , on June 25, 2012| 2 Comments »

Those of you who can find the thread in the midst of all my tangents and ramblings may be wondering what is happening with Jonah’s eyes.

Two or three blog posts ago (the eyes have it) I said:

“What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him…all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.”

Luckily, before I needed to ‘play my ace,’ the doctors decided to talk to one another.  For now we’ve all come to the conclusion that the Reticert implant is best left in place for now, even though the thing is nearing the end of its efficacy anyway. 

Plus now there is all this concern about the “activity” in his right eye.  The new drops have mitigated it so far, we’re told.

Next we’ll go back to the pediatric rheumatology doc and find out about another drug she may want to try.  I like her; she’s cool, knowledgeable, and kind with Jonah.

Still, I feel like we’ll never get to the bottom of so many things.  But maybe that’s all right.  It has to be all right.  I don’t have any choice but to learn what I can comprehend and weigh options with Jonah’s dad and all the endless scads of doctors. 

It’s like looking at my boy through the water, all refracted by light and liquid.

Boo likes to be underwater

Jonah likes deep pools best where he can swim to the bottom and ‘merboy’-himself along as if finned. 

At the bottom of all this is Boo.  It’s always been Boo.  Like Mitch Albom, Jonah tells his mama:  We’re not a wave.  We’re part of the ocean. 

But whales live in the ocean, Boo.  Ones that swallow Jonahs who’ve been insubordinate. 

“…(and) you can’t hide; standing under these stars
They know everything… they know where you are.
You’re in your head, you’re all turned around with it
And they’re shining down their light to bring you back again“

~ Careful by Guster

So soon we will know more, about both Boo’s eyes, and maybe try harder to get him to wear sunglasses for his light-sensitivity.  And I keep files and notes during doc-conversations so I don’t forget details.  If I cannot parent him I can advocate for him.  And others like him. 

I miss him so much tonight, though.  Usually I don’t let myself think about it, about him not being with me.  But sometimes because of a scent or a sound, all at once I have a punched-in-the-gut feeling, and I miss him like the day we dropped him off.  My God, it’s been almost a year. 

He has made a lot of progress.  He is toilet trained nearly completely and his language and social skills are coming along.  You can ask him a question now and usually he’ll answer it. 

“How is your sandwich, Jonah?”

“Good.”

It used to be more like:

“How is your sandwich, Jonah?”

“How is your sandwich, Jonah?”

And still he parrots, but he can make his needs met and now he will initiate conversation.  He says hello to teachers and the nurses, and his caregivers too.  Now he is so much better at communication.

shoes on please?

He’s independent, too.  His life has routine, and ritual, and he’s surrounded by people who know how to teach kids like him.  I don’t know what I’m on about.

Off I go to breathe and eat.

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el dio de los padres

Posted in autism, Uncategorized, tagged , , on June 17, 2012| 4 Comments »

I like to pretend I can speak Spanish, though truth be told I can speak German better, and I can’t speak that either.  So I’ll bet the title is butchered.   I do have the Rosetta Stone Spanish learning system, the whole kit and kaboodle, and so learning Spanish is on my list of stuff to do, though it seems like a terribly difficult investment of time and brain-tax.

And so, in my gringo Spanish…the day of the fathers…

There are many in my life.  M.  My dad.  Andy.  Father Noone.  My Godfather, Poppy, who was also my grandfather; he passed away before I was even engaged.  I could say a great many things about each of them, and perhaps I will, but I’m distracted today by one I almost never even think about at all…my birth father.  (My birth mother was a married woman with four children, one of whom had already died when I was conceived outside of her marriage).

They give you a bit of non-identifying information  in New York State, if you are at least 18 and you request it.  The paperwork euphemistically states my birth mother was “separated” from her husband, during which time she became pregnant with me.  There is some information on my birth mother.  A little bit.  She was in her early thirties when she gave birth to me.  She was a “collector” (at a bank).  She enjoyed watercolors.  Her father had a heart attack and died when he was 45.  Genetically, from her side I am English, Dutch, German, and Indian.  I have always wondered what kind of “Indian” they meant.

From his side, though, there is nothing.  No information.

No paternity established.  Mystery Sperm Donor.

I guess I am half John Doe along with the English, Dutch, German, and Indian.  So that makes me a Heinz 57, and Jonah — well, he must have a bit of every nationality ever known to mankind.

Jonah Boo is the only person I am related to, that I know of.  I might want to know more of you related-to-me-people.  Maybe.  Why don’t I have right to know who you people are, and talk to you — just once?  It would come in handy with a lot of Boo’s medical issues, too.  The doctors say they wish they had genealogical information on my side, and I feel I’m entitled to at least that.

I wasn’t adopted until I was 6 months old.  Foster parents had me because there was some issue with my feet (which they either did not fix or over-fixed, for I’m a pigeon-toed thing to this day).  I wonder sometimes if the foster parents maybe wanted to keep me.  Wasn’t I just a little freaked out to be whisked away to a new home with new, forever parents?  Those forever parents tell me no; I settled right in.

“You were fine,” my mom and dad both insist.

I think that means I was one weird little baby.  If someone took Jonah away from me when he was 6 months old, I don’t think he’d have been fine.  To tell the truth, I kind of wouldn’t want him to be fine.  He was my baby boo.  Mine.  Maybe when you are fostering a baby, somehow the baby knows s(he)’s not your baby.  Maybe, somehow, these little new-humans understand more than we know or can remember.

I forgot about yet another father – one I’ve never thought about at all until today.  My foster father, who raised me so briefly, from birth to 6 months.  Unless I only had a foster mother.  I’m not sure, but I’ll bet it was a couple.  My dad tells me when he and my mom drove to get me at the Department of Social Services or wherever, the “transfer the baby” lady told them there were more than a few tears when they came to my foster parents’ house to take me away.

I wonder how many other babies they’d fostered, and if they adopted any of them, or had any kids biologically.  Didn’t I miss them at first, just a little?  Their smells, their touch?  Or was it bad there and so I was happy to get the hell out?

I think about my foster/birth people on three days of the year, mostly.  My birthday, Mother’s Day, and Father’s Day.  That’s if I think of them at all.  I wonder if and when they think about me.

I was talking to M earlier about how my dad and I used to watch cartoons together when I was 6 or 7, and how much better the cartoons were than the crappy ones they slap together today with computer animation bullshit.  My dad and I watched the Bugs Bunny and Road Runner Show every Saturday at 11am.  We’d lay across the couch with our hound dog, Flower, and laugh at Foghorn Leghorn or Daffy Duck, circa mid seventies.  He even watched things like Little House on the Prairie with me, God bless him.

Today we went to church and then out to breakfast, and it was really good.  I thank God I have a forever father, and that my son does too.  Gracias, mi padres.

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the eyes have it

Posted in Anderson School, autism, behavior, doctor, Uncategorized, uveitis, tagged , on June 15, 2012| 1 Comment »

I love when Jonah’s school sends me photos:

Jonah, my little Boo, connecting his train cars carefully at school

Oh, Jonah.  Mama and daddy are trying hard to advocate for you while dueling eye docs offer equally insistent yet diametrically-opposed opinions on your Retisert implant & whether or not to take it out.

Eye doc number one strongly recommends NOT taking it out at this time and thinks doing so could be dangerous.

Eye doc number two seems anxious to remove it, and the sooner the better.

Every pediatric ophthalmologist I can find within this area is in the same practice as either doc one or doc two, so no real possibility for another opinion there, and these constant medical problems for my little boy are pissing me off today.

Stop piling all this shit on my child, damnit…. most of Jonah’s doctor visits are two-to-three hours long, odysseys of which Jonah endures with admirable spirit and patience.  The poor kid.  I do research online and pore over articles I can only half-understand even after two or three re-reads.  Today I called the nurse at Jonah’s school and am going to call his primary care doc first thing Monday morning.  We all need to advocate together.  Andy has long shifts of work now so it takes both of us to figure all this out.

There is more.  Doctor number one sees “activity” in Jonah’s right eye indicative of the same uveitis as the left eye.  Now Jonah has drops given to him in both eyes.  I’ve read articles about uveitis, claiming that it is responsible for 17% of vision loss, and I’ve read articles about how glaucoma is treatable until surgery is necessary.  After that I hate the word they say.  Blind.  I’m going to indulge in my histrionic state of mind and say if Jonah loses his vision I will go fucking stark raving angry, mad with the universe, mad crazy.  Mad.

I would never blame Divinity.  I don’t believe God works that way.  I don’t believe “God does not give you more than you can handle” and I do not believe “God only gives special children to special people.”  They are nice things to say but I do not believe them.

“I do not think God makes bad things happen just so that people can grow spiritually.  Bad parents do that, my mother said. Bad parents make things hard and painful for their children and then say it was to help them grow.  Growing and living are hard enough already; children do not need things to be harder.  I think this is true even for normal children.  I have watched little children learning to walk; they all struggle and fall down many times.  Their faces show that it is not easy.  It would be stupid to tie bricks on them to make it harder.  If that is true for learning to walk, then I think it is true for other growing and learning as well.

God is supposed to be the good parent, the Father.  So I think God would not make things harder than they are. I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge.  I think it is like if I were a baby and a rock fell on me and broke my leg.  Whatever caused it was an accident.  God did not prevent the accident, but He did not cause it, either…. I think my autism is an accident, but what I do with it is me.”

 ~ Lou Arrendale, the main character.  He has high-functioning autism.

From Elizabeth Moon’s The Speed of Dark

I agree with Lou’s assessment of what God causes and what God doesn’t.

Years ago, before he had uveitis or glaucoma,                    posing with his big brown eyes

What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him….all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.

For now I’m going to just enjoy seeing Jonah tomorrow.  He’s been a good boy, they tell us.  Good in school, good at his house.  Good = no aggressions.  Good is what I will focus on.  What you focus on expands, they say.

Focus.  I really meant no pun.  But for now I’m done.

(I didn’t mean to rhyme, either).

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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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there will come soft rains

Posted in Uncategorized, tagged , , on June 6, 2012| 3 Comments »

There Will Come Soft Rains

There will come soft rains and the smell of the ground,
And swallows circling with their shimmering sound;

And frogs in the pool singing at night,
And wild plum trees in tremulous white;

Robins will wear their feathery fire,
Whistling their whims on a low fence-wire;

And not one will know of the war, not one
Will care at last when it is done.

Not one would mind, neither bird nor tree,
If mankind perished utterly;

And Spring herself when she woke at dawn
Would scarcely know that we were gone.

~ poem by Sara Teasdale – featured in Ray Bradbury’s short story of the same name.

Here comes the book snob in me but it is amazing how many people I approached today with this conversation, or some similar variation:

Me:  Ray Bradbury died today.

Them:  Who’s that?

Am I wrong to be incredulous?  Didn’t people have to read Fahrenheit 451 in high school?  He wrote it in 1953, for God’s sake. I thought he was far more iconic.  He was for me, and I mourn him, anyway, though he was plenty old. 

I don’t try to describe the future. I try to prevent it.
Ray Bradbury
 
As for Jonah, he got into some sort of trouble yesterday with another kid or two, a tangle of aggression.  He also tantrumed in his room and hit his head on the windowsill, and has some bruises and a black eye.  His nurse M called me today to tell me.  Thank you, I said to her, because it is what we say to people when they have provided us with information.  Sometimes I say I’m sorry but then that’s dumb too.  This is exactly why he is living there, away from home.
 
If I wanted to, I could worry and wonder about his bruises.  I could be paranoid or over-cautious and secretly install a camera in his room or something.  Anyone can use surveillance nowadays.  It’s 1984, to name another iconic work of literature.   Here we are.  Everyone everywhere is watching, not just Big Brother. 
 
But then there is the trust that is absolutely essential to do what we are doing and remain sane.  Without it I would be a stark-raving paranoid mother, surely using secret surveillance devices to ensure the satisfactory care of my son and showing up randomly once a week to make sure he’s okay.  I’d be up nights imagining terrible scenarios, worrying about every minutia of Jonah’s care and life.  Sometimes I feel like a bad mother because I’m not stark-raving paranoid.
 
 
 
Just as Ray Bradbury tried to prevent the future (as he said in his quote), so I wish my mind’s manufacture of the future would grind its gears and stop.  It’s not even a matter of imagining a better future. 
 
There is only now, say the fortune cookie.  Now and now and now.
 
All covered in soft rains.
 

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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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it never stops at all

Posted in autism, grandma, swimming, trains, Uncategorized, tagged , , , , , , on May 27, 2012| 2 Comments »

“We must be willing to get rid of the life we’ve planned,
so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.”

~ Joseph Campbell

Me & Boo

Window

by Guster

A gaping wound tells the story of it all
A man lost only to find
What was left of his mind
With no hope of a scar at all
You say, “Go slow”
But something’s right behind me
I can run away for only so long
It will not stop
I will come down
Oh no
Let me find my way
I’ll take you to the edge
Go across that window
And I’ll carry you there
Oh when nothing goes right
Oh when days don’t come tonight
Oh when all I see is the error of my own enemy
A man alone and cut and torn for it
His whole life friend after friend
They’re all a flash in the pan
With no hope of rejoice at all
Let me find my way
(Don’t be scared of what you might be thinking)
I’ll take you to the edge
Go across that window
And I’ll carry you….

I love how you can see his reflection in the car window here

What a beautiful weekend this is.  What a happy boy was Boo yesterday.  He is the dawn after my darkest.   Jonah is such a joy…clever and curious…a mischievous boy with a sometimes silly, sometimes subtle, sense of humor.

And this time when we visited the river/train he really wanted to dip his feet in the water.    (The whole thing was my fault because I took off my sandals and dipped my feet in, and then he wanted to also, so we both did).

We splashed around together and giggled and got pretty wet – the kind of wet you don”t worry that much about because it’s sunny and warm enough to dry you pretty quickly.

Jonah, splashing around with Knockout Ned

Captain Jonah surveying the land

for Boo there’s nothing better than water

A patriotic Jonah sports a shirt from “Pa”

Jonah, watching them take a boat out of the water near the dock where he usually sits

After my mom and I left, Jonah stayed with his dad and they likely played some more, hit some of Jonah’s favorite hot-spots.   Again today Andy went to pick up Boo, bring him back to his apartment, give him lunch, a bath,  and spend time with him.

Maybe he will be able to take him overnight some day.  It is enough to have small steps.  It is enough.  Seeds, sprouting slowly, but sprouting nonetheless.

Jonah meditates under his daddy’s careful watch

Today I gardened and gardened and gardened.  I found all the little pots I could and filled them with soil and impatiens, and I dug in the earth and planted some.  Things are about as pretty as they’ve ever been in both my front and back yards.  I weeded as much as I could, and M mowed the front and back, and then we were hot and tired, so we came in and I decided to sit in front of my fan and blog.

My lovely flowers…the key to flowers is perennials, I think.  More perennials.  I am so not a gardener, but when I garden I feel joy.  I don’t use gloves…I need to feel the soil and let the earth move through my fingers.  (You get very, very under-the-fingernails dirty and usually a whole lot of scratches this way, but still it is the only way I can do it).

I’m going outside to take pictures of the friendly flowers and prickly plants and prickly flowers and friendly plants I played with today.

somehow the focus is on that bud off to the right…

I think Emily was correct:

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.” ~ Emily Dickinson

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