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Posts Tagged ‘swimming’

I want to start a whole new blog, but life gets in the way.  Then again that’s not true either – we have time for what we prioritize, whether we admit it or not.

To be sure, my life has gotten busier.  I’m working a couple different PT gigs now and I just accepted a big writing project from Pearson, which will throw the rest of August into deadline mode.  But that doesn’t excuse me from disappearing; one does hate a dead blog.

So I’ll be writing more here, with all the other work going on, even if the new blog(s) of mine must wait.  Boo does take top priority, after all.

Sigh.  It’s been a summer of disinterest for Jonah.  Against all reason, he seems to have lost his love for the pool, although I’d bet money he’d jump in the new swimming hole/waterfall area I found.

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I mourn the loss of my little boo-fish and hope he’s not gone for good.  I wish I could take Jonah to the ocean again.  He was in his element there, and at places like the waterfall at Hyuck Preserve.  Maybe he just wants a natural water source.

Nowadays, when my mom and I drive down to visit with him at Andy’s apartment, he mostly asks for car ride.  Even wanna take a bath has fallen to the dominant desire for car ride.  I understand; he doesn’t get a lot of car ride at his residential school, unless they’re taking the kids bowling or something – and then he has to share the backseat.  Hell, he won’t even share the backseat of the car with grandma unless we’re on the short ride from his residence to the apartment.  He wants mama in the front and no one in back.  Sometimes when he wants car ride he’ll simply say mama in the front?

We’ve learned his language well.  We know what he wants.

Car ride is a specific loop Andy invented which passes through and around some of Rhinebeck’s historical sites.  Usually at some point during the ride we stop at a gas station where we let Jonah out of the car, walk with him to the mini-mart inside, and allow him to choose a treat (like a bear claw or a donut).  The lady in there knows us now – she’s friendly, and nice to Boo.  He nearly always agonizes between two or more treats before deciding on something.  Then, once in a while, he’ll ask to go back to the apartment.  Most of the time he just wants another loop.

Andy gets Boo out to go for a walk, at least.  We like to take him to the park where daddy pushes him on his favorite swing for a while.  After that we walk down the path to a school’s athletic track, where I try in vain to get him to race me.  He walks and cavorts at his own pace.  Yet all of it is dependent on Boo’s caprice, which he makes perfectly clear each time.  No park!  No park!  he’ll say, and then we don’t even try.  It wouldn’t be worth it to force the issue.

My mom always brings delicious sandwiches on croissants.  Jonah will eat one, after a fashion, by pulling it apart, re-arranging the pieces, and putting it all back together Frankensandwich-style.  Yesterday he wanted a frozen dinner as well – chicken parm.  We indulged him.  He doesn’t eat anywhere near the whole thing, and his choice of “dipping sauce” might gross you out, but I did catch the experience on video.

The story of this day has a really shitty ending, so maybe I’ll just skip right to that part now and make it the middle.

When my mom and I left to go home, Andy and Jonah were having quiet time on the big blue bed.  It was a great image with which to leave them:  Jonah and his daddy lying together… Boo snuggling in for a hug.  Mama leans over for soft kisses, inhaling the top of his head.  Goodbye, precious boy.

Off my mom and I go to our innocent oblivion, arriving back in Albany, continuing on with our days, a warm feeling nestled inside us because Boo was so very happy and good.

Later Andy called me and filled me in on the rest of the afternoon.  When it was time to bring Jonah back to his residence, Andy promised him 2 car ride loops.  Evidently Jonah wasn’t counting because when Andy announced loop 2 was done, Boo insisted this was not the case.  And the manner in which he insisted involved a quick Houdini-esque harness escape followed by climbing toward the front of the car, grabbing Andy’s hair, and yanking it — hard.  I didn’t ask whether Andy at least had time to pull over first.

And I didn’t have to ask what happened next — I’ve seen it go down so many times I can watch it like a film inside my head.  Jonah pulls hair with Herculean strength.  A wrestling bout inevitably ensues – Andy trying to keep Jonah managed and safe while protecting himself.  Andy is still the undefeated champion in these matches, but he comes away bruised, sore, and likely disheartened.  We know Jonah doesn’t always love going back to his residence, and sometimes he cries, but there also have been times when he asks to go back.  It’s a crap shoot what you’re going to get on any given day.

When Andy tells me the story on the phone it’s with a calm voice, relating the facts in a tone that seems almost rehearsed.  Not fake or phony.  Just repeated too often, maybe.  Perhaps a little hardened by the time of it.  Frequency x the passing days/weeks/months = A dull and radical acceptance of a fact.

Like at the airport:  The moving sidewalk is coming to an end. 

On August 16th, Jonah will have been at the Anderson Center for Autism 4 years.  It’s still the best place for him to learn and grow and become as independent as possible.  We still know we did the right thing.

It’s just….well, not speaking for anyone but me, I discern a cognitive plateau in Boo.  I find it hard to stay encouraged that he’s gaining any ground.  His learning happens at a snail’s pace.  But maybe I’m off the mark.  I can write or call his teachers and behavioral management specialists, but I know the answer they’ll provide:  a gently euphemized, politically correct assessment of his progress and its intended path, however slowly, toward gaining skills and learning things sans aggression.  I should contact them anyway, and I will.  But not now.  Not today.

So here’s the middle of my story, now the end.  As you can tell I’m always photojournalizing our visits, with a lot of snapping pictures of Boo from the front seat of the car.  In this 3-photo sequence you get to see:

A.  The light bulb of a “naughty idea” come upon his face, igniting a smile

B.  His delight at this idea and the beginning of its execution:  snatch camera from mama

C.  The resulting photo he took of himself shortly thereafter

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I adore his laughter, his happy, the moments during which he is bright and eager and fun – hatching ideas, trying to pull one over on us.

We’ve learned to accept whatever comes because we love him.  Do I wish there were a “cure” tomorrow, a magic pill we could give Jonah to make him neurotypical?  I don’t know.  Should I wish that?

I’d prefer an à la carte menu.  Leave out the aggressions & add more interests (in anything besides car ride).  A steady, if slow, improvement in skills and cognitive abilities.  Some Calm.  If I want to get greedy (and since this is an imaginary scenario, what the hell), I also want him to be verbal. Conversational verbal.

I hear Iris Holland screaming in the movie Mr. Holland’s Opus, stamping her feet and slamming the table for emphasis:  I want to talk to my son!

But it’s a dumb game, even in pretend land.  I cannot pick and choose my child’s traits, and to do so would be morally questionable at best.  I just want him to be happy.  How many times have I repeated that sentence throughout this blog, I wonder?  How many times have I repeated myself about other things as well?

If I have, I suppose I should apologize — but it fits in well with the whole repetition theme, after all.

Here are extra pics of Boo to make up for lost time.

I’ll be back soon.

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^^^ With Grandma in the waiting room of the JRA doc.  She brings him a breakfast sandwich and a lem-a-made.

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^^^ Daddy helping him out of his harness.  Buzz cut!

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^^^ He loves grandma.  Grandma adores him!

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^^^

“Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows.”

~ John Betjeman

Perhaps Jonah shall never know the dark hour of reason. I think that might be okay.

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Mama in the front.

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IMG_20150527_153117207 Remember when I said I was going to get through the winter  without using lights and my thermostat set as low as I could safely manage it?  Well, damnit, I did it.  And now, for further fun and self-flagellation, I’m attempting to go all summer without putting the A/C unit in the window.  It was 82 degrees in my house yesterday.

It all involves very little clothing, drapes closed, and a big fan.

I have a pleasantly cool, finished basement where my two new kitties and I can escape (Almanzo never returned, and I waited until my heart was ready to take in another animal companion).  The cats are 3 years old and had been surrendered at the Mohawk-Hudson Humane Society a week before.  I didn’t really want two, but they are sisters and I didn’t want to separate them.  I’ve named them Laura Bess and Gracie – after guess who?

They are very nearly identical….white with graffiti-sprayed gray atop their heads.  I put a collar on Gracie just to tell them apart, though Gracie’s bigger and usually now I can tell who is who.

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Laura Ingalls Wilder was a little thing, after all — just 4’11”.

And what of Boo?  He is himself.  He is navigating his world the best he can, and we along with him.  A sudden, explosive outburst at his father – when Andy told me on the phone, I nearly threw up.   Jonah attacking him, causing scratches, bruises, bleeding.  Chunks of hair pulled out.   I wasn’t there and I don’t even know exactly what happened, but I’ve seen it all enough to imagine…

…and I don’t want to imagine and I never want to have that happen to anyone again and there isn’t a damn thing any of us can do about it.

I spend a lot of time in the woods.  A lot of time alone.

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I remain afraid of my son.  I’d love to watch him swim, watch him sleep again.  I never get to watch him sleep.  Strange, the pieces of my mama-life I miss the most.  Small memories.  Momentpieces.

Everything is as it is.  I am beginning a meditation practice with Tim, daily, though he is in Indiana and I here.  I have lost my practice and need to regain the refreshing supply of mindfulness which comes from sitting in silence and outside of time.   Most recently we visited for nearly 2 1/2 weeks together both in Bloomington, Indiana (where he lives) and San Diego, California (where he is from, and where we stayed – where I got to meet his mom and her husband, Chris).  Here are some photos, of us — and of course, of Boo.

Love on the Pacific Coast

Love on the Pacific Coast

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putting on his socks and shoes

putting on his socks and shoes

happy on car-ride

And much silliness:

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“The best things in life are silly.”

~ Scott Adams

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Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.

Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye.  (Turns out I’ve been spelling it wrong for a while).  I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone.  It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.

Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible.  Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him.  At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.

On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.

Saturday Andy was very tired (he struggles with insomnia).  I tried to step up and help out more than usual so he could lie down.  I gave Boo his bath and offered him small sips of his beloved black soda.  I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22.  Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.

We went outside to blow bubbles —  I hold it?  — Jonah asked after I blew a stream of bubbles into the air.   I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself.  He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.

Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven.  Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye).  At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim.  I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.

Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along.  We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate.  Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long.  A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).

And so Saturday served, also, as an early Mother’s Day for me and my boy.  I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him.  And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.

I hope the operation goes well.  I hope Jonah doesn’t get too sick.  I hope we can keep him pain-free.  I hope his left eye’s vision is somewhat restored, or at least not damaged further.

I hope.

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Yesterday’s visit with Jonah was surreal.  I guess I’m still jet-lagged and I felt like a dullard, all in a fog and very tired.  But Jonah was a good boy, calm and smiley.  He got his haircut but it looks like all they cut was the front.

still a ragamuffin boy

still a ragamuffin boy

I gave Jonah lots and lots of mamalove, kissing his hand and his head and his face, giggling with him, hugging him tight.  Andy picked him up for visits 5 days in a row, I think, this past week, because Jonah had no school and he was being a very sweet boy.  Naturally, Jonah will ask for his daddy to help him do a lot of things now – daddy give bath?   Boo is truly a lucky boy to have such a wonderful father.

To come back from paradise to grey skies and this cold Northeast is harder than I’d imagined.  Had I no responsibilities, I would short-sell my home and possessions and move – do not pass go –  to the Kona coast of the Big Island.

Where we stayed

Where we stayed

But I can’t, and I wouldn’t leave my Boo, and I can only hope to visit again.  Hawai’i has a whole different feel – mellow, smiling people and breathtaking beauty everywhere.  I took more than a thousand pictures.  The black lava rock is mineral-rich and yields growth of palm and grasses.  It is not as expensive as people say.  The tourist places are, of course, but we found delightful markets where we could buy snacks and drinks, and even a tiny eatery where you can get a full breakfast for $5.  I met more people than I imagined who now live there but were former tourists who felt Hawai’i’s pull to be irresistable.  I understood.

The island sang to me; it got inside my soul.  Although I’ve traveled a good piece of this world, no other place has felt this way to me.

No road rage, honking, “us vs. them,” anger, rushing, or stress…and what seems to be a healthy mutual respect between visitors and locals.   And my God, the sunsets framed by palm trees.  Sapphire waters.  Pineapple, mango, apple-bananas, macadamia nuts.  Mongoose and dolphins, whales and sea turtles.  White, black, and mixed-sand beaches.  Weather that never varies from its 75-82 degree breezy perfection.  We never saw a drop of rain, though if you travel to other parts of the island there is rain aplenty.  It is not crowded at all – I’ve seen crowds 100 times the size at Cape Cod and Ocean City.  If you can do it, go.  Go!   Boo would have loved it; I wish it was in any way possible to bring him. I am going to get that child to the ocean this summer.

Here are a few pictures, of the 1,273 or so that I took!

Buddha Point at our resort was a great place to watch the sunset

Buddha Point at the Hilton Waikoloa Village was the perfect place to watch the remarkable sunsets

hangin' loose with a lovely hula dancer

hangin’ loose with a lovely hula dancer

even though jonah is an expert swimmer, i can't even go underwater without plugging my nose!!!

Even though jonah is an expert swimmer, I can’t even go under water without plugging my nose!!!

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Whales...

Whales…

...and sea turtles...

…and sea turtles…

...and dolphins...

…and dolphins…

...oh my!

…oh my!

and the view from our balcony (lanai) at sunset

and the view from our balcony (lanai) one sunset

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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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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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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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“I’ve got my clipboard, text books
Lead me to the station
Yeah, I’m off to the civil war
I’ve got my kit bag, my heavy boots
I’m runnin’ in the rain
Gonna run till my feet are raw…

Slip kid, slip kid, second generation
And I’m a soldier at thirteen
Slip kid, slip kid, realization
There’s no easy way to be free
No easy way to be free

It’s a hard, hard world

I left my doctor’s prescription bungalow behind me
I left the door ajar
I left my vacuum flask
Full of hot tea and sugar
Left the keys right in my car

Slip kid, slip kid, second generation
Only half way up the tree
Slip kid, slip kid, I’m a relation
I’m a soldier at sixty-three
No easy way to be free

Slip kid, slip kid

Keep away old man, you won’t fool me
You and your history won’t rule me
You might have been a fighter, but admit you failed
I’m not affected by your blackmail
You won’t blackmail me

I’ve got my clipboard, text books
Lead me to the station
Yeah, I’m off to the civil war
I’ve got my kit bag, my heavy boots
I’m runnin’ in the rain
Gonna run till my feet are raw

Slip kid, slip kid, slip out of trouble
Slip over here and set me free
Slip kid, slip kid, second generation
You’re slid’ down the hill like me

No easy way to be free…”

~ Slip Kid by the Who

I have purchased a home DNA kit and I have spit into the spit kit as instructed and returned it via US Post Office to Californ-I-AY.  In two to three weeks I will know how much I am of each piece of what I am.  I will know genetic markers for predispositions to disease, and I will be able to provide Boo’s doctors with important genealogical information they all say they wish they had.  It also will be able identify blood relationships if they are 1st cousin or closer.

I’m thinking who do they have DNA on?  Then I realized:  Famous dead people and criminals, and the handful of people like me who have done this DNA test.  I seriously doubt Laura Ingalls Wilder and me, born 102 years apart, are first cousins.  But I could, sadly, be Jeffrey Dahmer’s cousin.   Or Snooki’s, which is almost as bad.

Pandora’s Box, I know.  I know.

Going to see Boo this morning at my mom’s house; Andy is driving him up.  My mom’s next door neighbor said we could use their pool so it should be awesome.  Beautiful day.  I’m drinking coffee and playing records on my new little turntable M bought me the other day as a surprise.

I listened to Rachmaninoff’s Piano Concerto #2  (I always liked the “Rach 3” better, but #2 was Gina’s favorite and so I listen to it a lot).  I can be with her when I listen to it.  It’s been almost ten years since she killed herself and I have yet to find anyone who looks so forward to the Philadelphia Orchestra coming to SPAC as me.  Maybe my friend Dimma is close.

Under the stars with wine and cheese on a soft lawn with quiet folks and a gentle breeze to the warmed-up evening.  A half-circle half-outdoor amphitheater.  Inside is great too.  Gina and I once finagled front row seats to an Itzhak Perlman (the famous Israeli violinist)  performance.  He has polio and must sit for his performances, which brought him even closer to us.  My God I tell you it was like being wrapped up in something so wonderful we could hardly breathe.

Oh Gina.  Maybe I’m related to YOU!  Do they have your DNA?  Do they take some when you die?   I tried to watch a layman’s cartoon lesson on DNA strands and chromosomes etc. but I don’t even have the foundation of basic knowledge on which to build any understanding of it all.  Obviously I skipped chemistry and physics in favor of a creative writing class.

10 HOURS WENT BY

…and it is late evening.  Oh how Boo loved swimming in the pool today!  He was a happy, playful, lovey boy and we had a wonderful visit.  I will leave you with some pictures:

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Well I know I can’t be posting poetry all the time but poetry comes out of me in cycles, and when my mind shapes a poem I must write it.  I know most people don’t like poetry, especially mediocre poetry, so I apologize for placing it, perhaps, where it does not belong.

Jonah had a relatively good day in school yesterday, which was very cool to read in his log book – he’d gone roller skating and loved it.  He loves yoga too, and his scooter they pull him around on with a weighted-vest.  My sensory-craver boy…

Then D came over and Andy and she and I brought Jonah and the clippers outside, to the outlet halfway down the driveway – and between the three of us, we buzz-cut his hair.  D did the actual buzzing while Andy held Jonah and I sat on the driveway holding Jonah’s legs between Andy’s legs so he couldn’t kick or thrash.  He was hopping mad, of course.  It looked like a circus act, with hair flying everywhere and Jonah twisting around.  Good thing the neighbors weren’t out.  Afterward we had a near-bald boy who immediately ran inside to look at himself in his bedroom door mirror and run his little hand through its baby-chick-head softness.  I went outside to the driveway where all boo’s hair was scattered and picked up a lock.  Maybe it is silly, but I want it to hold when he is gone and I can’t be with him.

Of course he gave D and I plenty of trouble on the way to H’s house and pool.  Safe hands? he’d ask D, wanting her to hold both his hands.  She’d turn and hold his hands, then he’d try to pick his nose or swipe stray hairs from his face, so she’d let go, only to have him beg for safe hands again.  Over and over.  He kicked the back of D’s seat and head-rest, hit the windows HARD, flat-palmed, and screamed his loudest, his someone-is-murdering-me screams, laughing and giggling afterward.

What?  D and I would ask each other, unable to talk above the noise.  No wonder I am going for a hearing test this afternoon.  Between Jonah, my concussion, and all those loud 70s/80s/90s concerts I saw (like KISS, Rush, Def Leppard, Jane’s Addiction, and every other band where I’ve sat too close to the speakers on purpose), my ears are suffering.  I always did like my music loud.

Then Jonah started to beg for hot dog.  Hotdogwithmustard?  he asked repeatedly.  Hotdogwithmustard?  My plan was to stop at Stewart’s on the way to H’s, but then I called H and she said she still had some from the last time I brought some over, so she prepared one in her microwave, God bless her, so it would be ready upon King Jonah’s’ arrival.

Finally Jonah got both his naked swim and his hot dog and all was right with the world for a few moments, though the entirety of our visit was maybe 15 minutes, tops.  ADHD?  D and I were half-jokingly recalling the blessed days (which we used to complain about, believe it or not) when he would perseverate on just one thing at a time.  Let’s ride the escalator 75 times!  Let’s stare into the street sewer for a half an hour!  Let’s go on the merry-go-round 8 times in a row!

Going on the assumption that most folk prefer pictures over poetry, I’ll make sure to come back later and post some.  I might even upgrade my account so I can post video.  I’m taking pictures and video of Jonah with ever-increasing frequency, as if I can capture and visit him whenever I want.

“The candlelight flickers
The falcon calls
A lime-green lizard scuttles down the cabin wall
And all of these spirit voices
Sing rainwater, seawater
River water, holy water
Wrap this child in mercy…”

~ Spirit Voices by Paul Simon

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Someone nominated me for Babble’s Top 25 • 2011 autism spectrum blogs, which is cool and kind of humbling.  Even though the title says it lists the ‘top 25′ it actually has the top 100 or so, based on readers’ votes.  If you read my blog and like it, will you please click on the link above, find Normal is a Dryer Setting (I think I’m number 33 or something right now) and then click on “I like this?” 

My goal is to make it into the actual top 25. 

Thanks.  🙂

It’s supposed to be 95 degrees or so today, and we’re planning to go back to my savior-friend H’s house after work so fish-boy can swim some more. 

This morning when I got to work, I was unloading the dishwasher.  We have these very tall, heavy glasses and I held one in my hand for a second and really, really wanted to throw it at a hard surface, just to watch it smash…to see the shards fly…to destroy something.

But I didn’t.

“Suffering is not enough. Life is both dreadful and wonderful. How can I smile when I am filled with so much sorrow?  It is natural–you need to smile to your sorrow because you are more than your sorrow.” — Thich Nhat Hanh

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