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Archive for July, 2012

the music of the pearl

Posted in autism, singing, swimming, tagged , , , , , on July 29, 2012| 4 Comments »

“It has always seemed strange to me…the things we admire in men, kindness and generosity, openness, honesty, understanding and feeling, are the concomitants of failure in our system. And those traits we detest, sharpness, greed, acquisitiveness, meanness, egotism and self-interest, are the traits of success.  And while men admire the quality of the first, they love the produce of the second.”  ~ John Steinbeck

Somehow I think he’s right, and this is as frightening an idea as any.  Maybe the key words in his quote are “in our system.”  But whose system is “ours”?  Americans?  Humans?

When Jonah was a baby, I envisioned bringing him into my world of do-gooder bleeding hearted-ness…of keeping him at my side as we served food at soup kitchens and put quarters into meters and handed out flowers to lonely folk, bringing arts & crafts toys to kids in hospitals, visiting the elderly in nursing homes, hanging out with veterans at the VA hospital…  Oh, I had all kinds of notions and ideas.  He’d grow up learning to give back, to be a good, loving, thinking, compassionate man.

It was one of the hardest illusions to have to watch fade before my eyes — and one I want to re-embrace, if only on my own for now.  Maybe all is not lost – if we are able to mitigate Jonah’s aggressions to the point of nonexistence (or close to it),  maybe as a teen or young adult I could try to bring him with me and we can do somethings to help somebodies somewheres.  I will not die feeling as though I’ve never done anything of significance – and if I can’t teach it to my Boo, I can live it.  Andy does a lot of soup kitchen work (and God knows what else he doesn’t tell me about) where he lives.  He can’t bring Jonah along either, of course.  But we can do what we can do in his name, in honor of Boo, so to speak.

For now I watch my boy hurt instead of help others.  It is a frustrating turn of fate — like when my Fox-watching conservative mother adopted a baby girl who turned hippie.   Lo siento, madre.

So Andy brought Jonah up to see me and my mom yesterday.  Jonah wanted this and that, all kinds of things to eat and do.  My mom’s next door neighbors were away and kindly offered us the use of their pool once again.  This time I took video, and upgraded my account so I can imbed it…somehow…I think.  Let me try.  The auspiciously cool thing about it is he dived a few times during the 3 1/2 minute video, which he hasn’t been doing much lately:

I have no idea if what I just did worked.  In case it didn’t, here are some pictures:
Then, straight to the bath, as per Jonah’s request…

He scrunches down until the water fills up the tub

…and waves his arms in the wind and rain from the backseat, on the way to see train…

“…and the music of the pearl drifted to a whisper and disappeared.”  ~ The Pearl by John Steinbeck

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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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never again, and watch out michael phelps

Posted in autism, grandma, swimming, tagged , , , on July 2, 2012| 2 Comments »

It was a strange weekend, but I don’t much feel like writing.  I’m tired and worn, yet not unpleasantly – kind of like an old blanket on a laundry line in the sun.  But Jonah got to swim, and see grandma and the train, and the bite wound he incurred at school is healing very nicely.

I also had my first (and last) garage sale on Saturday.  Never again.  Good God.  I thought it would be fun and lucrative, even, perhaps.  It was none of that – just hot and never-ending.  I probably sold half the stuff in the two hours before the official opening of the sale, while I was setting up.  ‘Twas very stressful for someone with my Virgo-ian tendency to have everything just so.

I tried to stay enthusiastic and friendly throughout the day.  “Welcome to my highly negotiable garage sale!”  I shouted like the ringmaster at a circus.  “There’s free cold water in a cooler here,”  I gestured in tour-guide fashion, “and a cooling station along this wall.” (which was actually a sprinkler, set on low, that I looped over our energy meter).

The first two things I sold were the coat racks upon which I’d planned to neatly hang the nicest clothing.  The rest of the day pretty much went downhill from there, save for the surprising number of friends, relatives, and co-worker visitors who came to see me and, in some cases, even helped me.  If it weren’t for R’s brilliant product placement, for example, I’d never have sold those water-slip-slides.  Never underestimate the ignorance of someone who’s never held a garage sale, or the wisdom of someone like me, whispering in your ear:  don’t do it!

Here are pictures from Boo swimming at grandma’s neighbor’s house, God bless them for all time.  Jonah swam, went in to eat, back out to swim, over to see train, and back to grandma’s.  He was a joy and had a wonderful time.  I’m so glad Andy brought him up to see us on Sunday!  I needed to see my little boy.

Grandma and Jonah

Jonah gleefully falls off the float

Andy watches Jonah, about to jump

Waterchild

Watch out Michael Phelps

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