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This has been an extraordinarily fantastic day.  My blog is usually so filled with frustration, sadness and despair – but not today.

First, it is a warm, slightly-breezy, summer-calm, bright, quiet, Paul-Newman-eyes-sky June day.

Now take a deep breath for this wondrously lengthy run-on sentence:

Since I no longer work in a building dressed in office clothes in a windowless area where I am isolated at a facing-a-corner desk, under pressure must-make-money selling advertising over the phone, BUT, rather, am now employed as a writer – typing tip tap tip in my hippie skirts and comfy t-shirts, from home, on the couch, for a charity I love, with the TV tuned to “light classical” 1270, all windows open, house clean, food & drink for whenever I feel like eating, Almanzo-kitty and Jack-dog at my side or in the yard, breezes and birds calling me outside where I stretch and break from work to water plants, walk barefoot to the park, garden a little…whatever I want so long as the work gets done, I am grateful because this alone makes every day like a fantasy-dream come true.

I can’t really express how I feel the need to pinch myself each day.  I wake when I want and I don’t have to go anywhere at all.  The work I do feels like painting a picture or making nature art by a stream.  Creation.  It’s a joy for me to write.  And I am unbelievably blessed.

What a deliverance. 

As the shock begins to wear off I am finding myself breathing slower, feeling more relaxed, smiling inside and out.  I sit in meditation easily.  My head and heart are clearer.  I’ve befriended new neighbors and gotten closer to old ones, and when I do not have writing work, I love to spread the word about Modest Needs, the foundation for which I am now director of communications.

But that’s just the groundwork for this awesome day.

Jonah’s caregivers, P and N, drove him up to this “second chance eye doc visit” (after the failed appointment-cut-short exactly a week ago today).  I met them at the van and Jonah came bounding out, smiling wide and with a fresh new hair cut.  We walked around outside and in the lobby for a good 20 minutes before they called P’s cell to tell us to come up and into an examining room.  Usually I underscore every last detail of all this, but today I will simply tell you Jonah was an angel.  A “normal” kid could not possibly have been more cooperative or have amused him/herself any better.  After waiting those 20 minutes downstairs, we waited again from 10:30am (when they called us in to a room) until 11:30am (when the doctor finally came in) and I tell you he was the picture of patience.

He walked in tight circles and we played “high five” and sang songs – everything from “I’ve Been Working on the Railroad” to Guster’s “Keep it Together” to “B-I-N-G-O” to “Bye Bye Blackbird.”  I gave him a green octopus and many white tic-tacs.  He asked for hug and more hug and kiss eye and more kiss, over and over, his repetition sweet music.  I held him tight and kissed his eye, the top of his head, his shoulder…we made a game of it — we made a game of everything — he was happy and giggling, asking for donut? even as I made up a song about him asking for donut.  N and P are incredibly cool and we were able to talk and laugh among ourselves and along with Jonah.  

Donut?  Donut? he asked several dozen times, lest we forget.  He knows the drill: Number one: doctor.  Number two: donut.  Donut?  Donut?  “Yes, Boo, of course!”

He never fell apart, and we checked out and walked back downstairs.  I hugged P and N goodbye before kissing Boo soundly and sending him off to get his beloved donut.

I’m not going to ruin this post with details about Boo’s eye.  Later.  For now, just pictures.  I took several – here are some good ones:

First I opened the door of the van and gave him green octopus

First I opened the door of the van and gave him green octopus

happy boy, waiting in the lobby

Happy boy, waiting in the lobby

walking into the eye doc office

Walking into the eye doc office

...and being a really good boy for his ultrasound!     ...and being a really good boy for his ultrasound!

…and being a really good boy for his ultrasound!

It was damn near a miracle.

Today I pray one of my two main prayers (the other is please): 

Thank you.  Thank you.  Thank you!!!

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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.

???????????????????????????????

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.

OLYMPUS DIGITAL CAMERA

“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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“Never be afraid to trust an unknown future to a known God.”
~ Corrie Ten Boom

On Saturday Boo was his reliable, predictable self, and yet he never ceases to amaze me.  Andy had taken him overnight and so he was there when we arrived.  He had been asking for “grandma” and “mama” all morning, yet when we arrived he was more interested in the food my mother had brought him.  This time she’d added a new item:  a small container of mini-Oreos.  Jonah’s not the type to eat things in what others might consider a “logical order” – food, then dessert.  His banquet must be presented all at once, and though he did eat most of his sandwich, the Oreos were a big attraction.

Jonah enjoys the stuff in the middle — the meat and cheese inside the bread, his fingers first tap-tap-tapping against the sandwich and then, usually, discarding the bread altogether to get to whatever is the middle.  It was no different with the Oreos.  He held each mini Oreo carefully in his little hands and pulled it apart, scraping the creamy white stuffing out of the middle, then discarding the two outer cookie pieces.

cookie fun

cookie fun

He gleefully attacked his lunch with fervor.

cookie mouth

cookie mouth
YAY!

YAY!

We are waiting for warmer weather but offered to take him to the park anyway, or the train, or the Poet’s Walk.  When we asked him if he wanted to do any of these things he answered “no,” sweetly but firmly, to each one.  “Transfer station?” he asked, which is a recycling facility where Andy takes his paper and cans, etc. every Saturday.  It is car ride Jonah wants, and he almost always says “grandma stay here.”  I think it’s because he wants the whole backseat to himself.  So my poor mother is stuck watching QVC and Fox News on Andy’s TV until we return for a bath and then another request for car ride.

I found out about an open swimming program at Bard College on the weekends, but Andy seems reluctant to take him, lest he throw a fit.  I want to try, though.  Perhaps M will come down with me some Sunday and we can take him.  Jonah loves the water so much!  I was ready to book a 3-night stay in Cape Cod this summer, to take him to the ocean with Andy, to watch him frolic in the waves, to hear his little voice cry gleefully for ocean!  It is a word we do not use, for if we cannot take him it would be mean to plant the idea in his head.  Now it looks like I may be hard-pressed to take him at all.  I will find a way, for I am a determined mom and want to give the gift of ocean to my Boo.

I would like to end this post with some quotes and passages upon which I have been reflecting.  There are discoveries to make, and self-improvements to make, and faith to build.  There is self-awareness and I am attempting to step away from myself and see myself as others see me.  I am looking deep into a metaphorical mirror to ensure I can remain true to myself and to everything I have ever wanted to be…a great mother, a loyal friend, a good person.  Most of all I am seeking to be kind to all I encounter, to forgive, to understand (and not only to be understood),  as in the prayer of St. Francis, perhaps my favorite prayer/hymn.  I am praying it with everything inside me and turning things over to the certain God in which I believe.

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

Oh Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen.

– – –

“Experience: that most brutal of teachers. But you learn, my God do you learn.”

~C. S. Lewis

– – –

Matthew 5:44-45 says, “But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”  Thus, now go on your knees and pray for the person who has hurt you.
– – –

“To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”

~ Buddha

– – –

“Silence is one of the great arts of conversation.”

~ Marcus Tullius Cicero

– – –

“To thine own self be true,
and it shall follow, as the night the day,
thou canst not then be false to any man.”

~Shakespeare

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“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
~ Albert Einstein

Okay so I promise to not quote any more Nietzsche in rash moments of angst.

I’ve just come to the conclusion that if I want to get to the bottom of my son’s aggressions I’m going to have to do it myself.  Should that have been exceedingly obvious to me a long time ago?  Here I am waiting for the professionals to put all the pieces together.

For years, the schools have tried to chart his behaviors, to associate actions with causes, to figure out why he acts out and when – sometimes, even, he aggresses right after he has just been given a reinforcer (reward) or is in the midst of a preferred activity.  And he’s gotten worse.  And he’s getting older – he’ll be 11 on Thursday.  Now he’s figured out that he has an arsenal of weaponry at hand 24/7: a built-in play-doh factory of crap to sling and smear.  All of this everything that makes no sense HAS to make sense to somebody.  I just have to find this person, these people, the neurologist somewhere who will discover a medical, fix-able reason for all of it.  Or do I?

There has to be a reason. Or does there?  I know autism itself doesn’t really make a lot of sense, but there is usually consistency within its world.  Or is there?  I’m questioning everything I think I know.   I need to figure out where to start, to really start helping my son.  If I can help.

Always I secretly judged the autism parents who flew their kids to doctors all over the country, searching for an answer.  I assumed they wanted to “fix” their child or “cure” them of autism.  Maybe they are just like me.

When Jonah was at a day school for kids with autism, I secretly judged the parents who “shipped their kids off” to residential facilities because they “didn’t feel like” taking care of the child anymore.  Now Jonah is at a residential facility.  And of course before I had a child, I had a million notions of parenting that were better than yours. 

God does hath a sense of humor.

Now I have to do something or go crazy with the merry go round of hope and despair.  I want to help my son.

This past Saturday, Jonah was pretty good:  he only slapped me in the face once with a soapy backhand and, minutes later, got out of the tub and ran dripping to grab at my mother, who was sitting in the kitchen.  No real harm done in either case, and neither incident lasted very long.  Of course, we couldn’t figure out a reason for any of it.  We rarely can.

Here are some pictures from Saturday.  And a video.  I welcome all comments.  Suggestions.  Judgement.  I’m evidently working off some karma.

Jonah and his birthday present Scare-Me-Not, Fearless Fred

Jonah and an early birthday present Scare-Me-Not, Fearless Fred.  Boo will be 11 on March 7th.

I love the top of his hair in this picture!

I love the top of his hair in this picture!

Jonah’s wisdom at the end:  More brownie?

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Raymond:  97X. Bam!  The future of rock ‘n’ roll.   
97X. Bam!  The future of rock ‘n’ roll.  
97X, Bam!  The future of rock ‘n’ roll.

~ Raymond Babbitt in Rainman

Oh, my sweet, precious little boy.  What a wonder you are!

This is the third Thanksgiving I’ve described in this blog.  Hard to believe..  The first was awful – so awful, in fact, that just days later I would check myself into a mental health facility, the second was fun (and was paired with two Guster shows, so how could one go wrong?), and yesterday, Thanksgiving 2012, which was easy-wonderful.

Andy was nice enough to drive Jonah up to Grandma’s house, and I met them there.  My boo came crashing through the front door, shrieking with happiness.  We ate turkey sandwiches; Jonah ate one and a hot dog as well, and chips, and bacon, and “white ice cream.”  He asked for train and we drove him there even though we knew Thanksgiving trains are few and far between.  All the way there my mom sat in the backseat with Jonah, but he kept asking mama in the backseat?  And my mother told him, “yes, sweetheart, as soon as we stop for the train.”  It made me feel good; usually he wants grandma in the backseat.

He also wanted music, and daddy turned up this station that he and Jonah enjoy: 92.3 FLY.  After one of the songs they announced the call station with snazzy-jingle-music and the deep voice and all.  Jonah immediately parroted it, really well, too, if I don’t say so myself.  92.3 – WFLY!  92.3 – WFLY!  92.3 – WFLY!  None of us could help laughing, which only encouraged him.  Giggling, he kept at it for a while, just like Rainman.

So there was no train, but I got to sit in the backseat with my Boo – and instead of telling me move (which means get as far away from me as possible and do not even look at me), he asked for hugs.  Over and over again he wanted hugs.  Bear hugs, he even said.  And so I reveled in this, moved close to him, wrapped my arms around him, and hugged tight, raining kisses on his Beatle-length hair.  More bear hug?  he pleaded, looking up at me sweetly.  Yes, Boo, I replied, hugging him closer, tighter, until it felt like we were one.  Oh thank you, I said silently.  Thank you.

And this week I get to see him again – tomorrow, which I hope will be as beautiful as today – and Jonah as lovey.

daddy-hugs

Before Andy and Jonah left, they came inside to get their share of a Thanksgiving dinner my mom had made just for the few of us.  So she had a bag with all their food in it, and Jonah and Andy were saying goodbye, when Jonah opened the freezer, snagged the rest of the bacon, put it into the bag of food, then looked up at us all as if to say “k, let’s go.”  Of course grandma let him take the bacon.

Mom and I had coffee afterwards and laughed at Boo’s adorable little ways.  We both had tears behind our laughter, but they were mostly good, happy, thankful tears.

We’ve plenty to give thanks for, that’s for sure.

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I’m at work and my cell phone rings.  (If it’s the area code where Jonah lives now, my heart goes into my throat, even though they’re usually “only” calling to notify me, as they must, that Jonah was involved in an incident.  That means he probably scratched, bit, kicked, and pulled God knows how many people’s hair.  It means they had to physically restrain him to prevent him from hurting himself or others).

It is the area code, and they are calling me to relate an incident.  When we hang up I call Andy and tell myself to just go back to work.  There isn’t anything I can do.

For years, behaviorists and teachers, psychiatrists, Andy, me – everyone – has been searching for a pattern to Jonah’s aggressions, a cause.  A reason for all this.  It isn’t who he is, the violent kid trying to scratch your eyes out.  It isn’t who he is.  It is as frustrating as anything I’ve ever known.  I don’t want to think about it today.  I want to know my son without having to fear him as well.  Thank God the world is catching on and more & more is being done for people with autism.

They say Jonah loves the new temporary house.  He can see the river and the railroad tracks, and right there you’ve got two of his favorite things:  water and train.

Jonah, at the glaucoma appointment, wearing J's sunglasses, playing it cool

I’m taking a couple days to go offline and see Guster (again) for my last concert this tour.  If I’m lucky, the dreaded area code will not appear on my cell phone until I return.  Be well, Boo.  Your mama loves you.

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On Christmas Eve I went with M to return a fixed computer to a man’s apartment; the guy had autism and softhearted M had done the work for free.  The man had all these vinyl albums hung on the walls, and each album had a painting or design on it.  In another room he’d constructed 3-D sculptures from popsicle sticks and fuzzy dots and crafty pieces of all kinds of things.

It was all very cool.  He had so many books and so much music.  Joseph Heller and J. R. R. Tolkien, Mario Puzo and Thomas Hardy.  His music was eclectic:  Eric Clapton, The Beach Boys, Gordon Lightfoot, the Soundtrack to Grease.   And he was very happy to have his computer back in time for Christmas.

He would ask random questions of us, and he could make good conversation.  I asked him if he had brothers and sisters, and then he asked me.  M and he were both the youngest, they discovered.  I  asked him about his music and books, and the artwork all over.  “Oh, yeah,” he said enthusiastically.

“Were you born on July 30th?” he asked me.  “1969,” he added:  statement, not question.

I smiled.  “No, but close.  September 2nd.  The 1969 part is right.”  Then I asked, “When is your birthday?”

As if thinking weren’t you listening? – he said “July 30th, 1969!”

I liked him.

While we were there his mother called.  Then he said his counselor was due to come over soon, so I asked him directly, “are we all done or do you need any more help?”

“Oh, yeah,” he said in the same enthusiastic voice.  “We’re all done.”

Good thing I’ve read The Speed of Dark by Elizabeth Moon, because I don’t have a lot of experience with adults who have autism, and that book helped me see things through his eyes.  You have to be pretty direct; subtleties and metaphors get lost.

That sounds like a Paul Simon song:  Subtleties and Metaphors.

Andy brought Jonah up to my mom’s house on Christmas Day and then kept him for a long time after that.  Jonah was very good at my mom’s, even though he paced a lot and wanted sandwich and bath and car ride in rapid succession, caring nothing for the presents.  He is indifferent to everything related to Christmas except perhaps the lights and songs.

Definitely the lights and songs.

I am kind of okay, but for a while I couldn’t write because I was re-visiting the necessity, safety and camaraderie of last year mid-December, when everything changed forever.   I love those peeps, even if I did only know them (in person) for 8 days.

Thank you to everyone who has written.  I just don’t get to my e-mail as much as I want to.  I read them but then I can’t reply.  I hate bitching about shit, and I’m always bitching about shit.  Today my mom and I spent hours sorting through like 15 bags of clothing into donation and keep piles for Jonah.  I was agitated and tired.

I wanted to clean today.  I cleaned and cleaned and organized and cleaned.  There is still too much.  I keep thinking of the man who was born on July 30, 1969.

It occurs to me that we are equidistant from Woodstock.

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