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“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck

There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness.  The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee.  The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.

Of course this is foolish, imagining idyllic problem-free lives.  It is never so.  Behind every smile is pain, and in every life falls the rain of sorrow.  Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp.  Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.

The mornings are hardest.  Awakenings.  In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.

When we first picked him up at his residence, he was happy and excited.  The caregivers told us he ate two breakfasts and was behaving well.  He was calm on the ride to Andy’s apartment.

Jonah and his "octopus."

Jonah and his “octopus.”

Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting.  I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.”  He is not yet generalizing this beyond the classroom, but I am confident he will.  They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment.  Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom.  I suppose I should learn.  How hard can it be?

They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing.  He will have been there for two years in August.

The mind reels.

This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.

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Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go.  No mama, he declared.  Mama stay here.

I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella.  They are cute kids, and Andy’s landlord looks like George Clooney:

I call him George

I call him George

Sweet Isabella with Protector Patty, a ScareMeNot.

Sweet Isabella with Protector Patty, a ScareMeNot.

I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned.  Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all.  He wanted park.

We were all glad, since usually he only wants car ride. But once again he wanted no mama.  My mother felt so bad for me.  “Mama is coming too,” she told him.  “No…no,” he answered.  My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along.  He was not appeased.

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“I hold it,” he declared as soon as he was strapped to his safety harness.  Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.

Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.

sticky mess

sticky mess

I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it.  No park.  Quiet time.”

looks like an arrest

looks like an arrest

After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him.  He was quiet for a few minutes and then turned to me and held out his little hand.  I kissed his palm.  He lifted his leg out from under the covers and I held his little foot and kissed a toe.  More kiss?  he wanted.  Of course more kiss.  I kissed each toe, his ankle, his fingers…the softest place on his neck.

“I love you,” I  whispered.  “I love you.”

And then it was time for my mother and me to drive home.

Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one).  There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee).  After two hours of playing I came in 6th place and won a whopping $40.  I do like to play and am fairly good at it.  It was a fun distraction to my weekend.

The world events of this past week are a shadow-cloud over my microcosmic thoughts.  Too much too much.  My therapist tells me not to listen, but it is impossible not to hear.  While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down.  I told her it was not my building and even if it was, of course she could.  We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC.  She didn’t like Albany.  She had been mugged twice.  A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions.  I politely declined, but the woman was all excited to talk and have her picture taken for the paper.

“It’s those damn Moos-lums,” she declared.  “We have to ship them all back to their own country.  (And what country would that be? I thought to myself).  “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer.  He grew visibly uncomfortable and told her he could not use her comment about the Muslims.  She was unhappy about this, accusing him of being part of the liberal media agenda.  When she walked away, he and I talked for a bit.  I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.”  He nodded in understanding, and I stood up and went inside.

Boston.  Texas.  Seattle.  Denver.  China.  India. Japan…North Korea…etc. etc. etc.  The suffering is everywhere now, every day.  If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy.  God help us all.

“One way or another, this darkness got to give.”  ~The Grateful Dead

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When I was pregnant, I imagined a baby who’d grow into a reader like me.  So as my belly swelled, I read my favorite books aloud to him.   I’ll read to my baby every night, I thought.  He will grow surrounded by books, and we will love them together.

I bought him lots of books from The Book Barn in Latham, my favorite used book store, where it didn’t cost me a mortgage payment to create a child’s library.   And I did read to him every night, until it became apparent he wasn’t enjoying it at all.  He ripped up lots of books, my Boo.  He mangled them.  Jonah only wanted books if they played music, or had buttons to press and make sounds.  The rest of his library sat untouched.  Some of the books I gave to Jonah’s classrooms, and some to other kids.  Some I still have, here in the house.  They have his bite marks; some are torn.  I love them all.

A few weeks ago I couldn’t sleep so I got out of bed at 2am and ordered 7 or 8 books on www.amazon.com.  (When it is not 2am, I prefer to get my new books from The Book House, an independently owned local book store). So when I speak of these books I mean actual books, you understand.   Mockingbird and Out of My Mind were the first two I read, and both were amazing; remarkable.  Now I’m starting Wonder.  I am reading books again.  I read in cycles. For months I’d stopped, reading only newspapers, and now again I am voracious for books.

I like to hold print objects in my hands.  Books, magazines, newspapers.  There are the many unique papery smells, of course…musty & woody, shiny-new & linen-clean – and that same uniqueness in the feel of the pages –  recycled-rough, factory smooth, stained with coffee, crisp or yellow-thin…but there is also the added element of holding.  Print does not disappear at the touch of a button.  You don’t turn it off.   It is unsettling to me that print media is stored in cyberspace, an imaginary land where there is no semblance of anything sensory at all.   Hell, there isn’t even the pretense of it.   You hold a never-altering device, missing all these wonderful sights, smells, feelings.   I just won’t do it.

This blog is nowhere to be found in print, and that irony is not lost on me.

There are still people who don’t “get” (or perhaps have never even stopped to consider) the significance of the names Kindle and Kindle Fire.  They may as well have called the damned thing the Fahrenheit 451.  I do not have one and don’t plan to get one.  In fact I’m seriously considering a backwards move in the land of technology.  No cell phone, then no cable.   I’ll buy a Victrola and play 78s all day while reading in my rocking chair.  I’ll hold a book to my chest and hug it close, by my fireplace, glancing up to walls full of volumes, of albums, of plants.  I’ll be on 10 acres of woods, smack in the middle in a small cabin.  Animals everywhere.  The deer will eat out of my hands.  Okay, maybe not all those things.  But I shall have my books.

Boo never wanted bound pieces of paper that did nothing and meant nothing to him.  The most colorful, amazing illustrations couldn’t capture his attention.  I brought him to the library reading room toddler times.  As the other tots gathered ’round, criss cross applesauce, for The Cat in The Hat, Jonah ran up and down the long aisles of books, touching their spines, tap-tap-tap-tap-tap, screeching every so often.  I was an alien suddenly, thrust onto Jonah’s planet in a rocket I didn’t ask to get on and didn’t know how to steer.

We didn’t try the reading room toddler times again.

“Back then” (2004 or so) they didn’t have autism-toddler-time around here, which would have maybe been cool –to climb into a leaky boat with other parents who feel just like me and whose kids also want to tap-tap-tap on the books.  To not feel so scared and alone.

I feel scared and alone again.  I feel tired.  The tired of a waning moon.

Yet Andy drove Jonah up today and we had a good visit; Boo was lovey, laughing, and demanding all at once.  Two baths, two attempts at driving to train (neither successful), many kisses.  Jonah’s laughter at jokes of which he is both author and audience.  It was a good day.

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